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Gryffindor
06-18-2010, 10:34 AM
My 14 yo daughter will be having surgery on 8/23 at SLC Shriners. The notes from her initial consult back in March state that she will be having posterior spinal fusion from T3-4 to L 3-4. Of course these numbers could change once a new x-ray is taken but we won't know until we actually arrive at the hospital. She has no other health conditions other than the scoliosis.

My husband does not deal with hospital situations very well. After visiting our nephew (an adult) in the hospital who had been in an accident, my hubby actually passed out, hitting his head hard enough to require stitches.

I want to prepare him for what we're likely to see and experience during our daughter's hospital stay (10 days) so we don't have a repeat of his passing out.

My questions are:

1. What can we expect after our daughter is in recovery? I've read a couple of posts where people have said their child was still on a breathing tube for the day after the surgery. Is this the norm?

2. I've also read that the child is pretty much asleep for the first two days (surgery & day after). Is this the norm?

3. How bad is the pain? What are the normal meds given for pain management?

4. Incision: What care is given to the incision site? When do they remove the stitches or are they the type that dissolve?

I know there's much that I'm missing.

If anyone would care to share their child's hospital story I'd really appreciate it.

LindaRacine
06-18-2010, 01:25 PM
My 14 yo daughter will be having surgery on 8/23 at SLC Shriners. The notes from her initial consult back in March state that she will be having posterior spinal fusion from T3-4 to L 3-4. Of course these numbers could change once a new x-ray is taken but we won't know until we actually arrive at the hospital. She has no other health conditions other than the scoliosis.

My husband does not deal with hospital situations very well. After visiting our nephew (an adult) in the hospital who had been in an accident, my hubby actually passed out, hitting his head hard enough to require stitches.

I want to prepare him for what we're likely to see and experience during our daughter's hospital stay (10 days) so we don't have a repeat of his passing out.

My questions are:

1. What can we expect after our daughter is in recovery? I've read a couple of posts where people have said their child was still on a breathing tube for the day after the surgery. Is this the norm?

2. I've also read that the child is pretty much asleep for the first two days (surgery & day after). Is this the norm?

3. How bad is the pain? What are the normal meds given for pain management?

4. Incision: What care is given to the incision site? When do they remove the stitches or are they the type that dissolve?

I know there's much that I'm missing.

If anyone would care to share their child's hospital story I'd really appreciate it.

I've seen HUGE differences between what happens at faciilities. Your best bet is talking to the parents of someone who had surgery at your Shriners. The Shriners folks will probably happy to supply you with a few references.

--Linda

Sherie
06-18-2010, 08:05 PM
Hi
My daughter was fused from T4-L4 at age 15, so maybe your dd's surgery and recovery will be similar.




My questions are:

1. What can we expect after our daughter is in recovery? I've read a couple of posts where people have said their child was still on a breathing tube for the day after the surgery. Is this the norm?

Sheena was in recovery for about one hour, total time in surgery was 8-9 hours. She was awake when we went to see her but heavily sedated. She was able to talk to us. She did not have a breathing tube in recovery. She went directly to ICU and stayed overnight, I was able to stay with her.

2. I've also read that the child is pretty much asleep for the first two days (surgery & day after). Is this the norm?

Day of surgery and next day, yes.

3. How bad is the pain? What are the normal meds given for pain management?

Pain was pretty bad, it's a very long incision and they do a lot of manipulation and cut away all the muscles, it's to be expected. There's also a lot of discomfort from bloating. She was on drip morphine and given a bolus as needed for 5 days then changed over to oral narcotics and valium the last few days (she was in the hospital 8 days). She was on morphine too long, most kids are switched over after about 3 days I think. Her appetite improved immediately upon discontinuation of morphine.

4. Incision: What care is given to the incision site? When do they remove the stitches or are they the type that dissolve?

There was a gauze bandage over the entire incision the first few days along with drain tubes that are placed during surgery. These are removed about 3 days after surgery. There are dissoluble stitches and tape covering the entire length of the incision. The tape will not be removed until 2-3 weeks after you go home, her surgeon will tell you when the tape can be taken off or it may fall off on it's own while she showers. Sheena's was on so tight, we had to take it off a few pieces at a time. The incision was completely closed by then.

If anyone would care to share their child's hospital story I'd really appreciate it.

You can see the results of my dd's surgery in my sig.
Take care, everything will be ok.

scoliboymom
06-18-2010, 08:58 PM
One thing I'd like to point out that you don't hear very often but your husband might like a heads up before hand, is that she will be very swollen, especially her face. My sons eyes were so swollen that it was an effort for him to keep them open. This gradually diminished over the first few days.

Ramona

Pooka1
06-18-2010, 09:01 PM
I agree with Linda. There is a huge range of experiences and surgeon protocols seen just in the testimonials on this group. My impression is that the range of surgeon protocols is greater than the range of patient recoveries. If true, then you need to get some written material about what to expect from your surgeon at that hospital. Our surgeon gave us a few-page write up about what would happen and what to expect in recovery.



My questions are:

1. What can we expect after our daughter is in recovery? I've read a couple of posts where people have said their child was still on a breathing tube for the day after the surgery. Is this the norm?

I don't think chest tubes are used in posterior fusions. I think they might be used in VBS though which might be where you read that for kids. Adults having anterior surgey get chest tubes as I understand it though.


2. I've also read that the child is pretty much asleep for the first two days (surgery & day after). Is this the norm?

They sleep a lot but my kids were woken up every 2 hours for the first 2 days to move them in the bed side/back/other side/back/etc.. They are awake more the second day.


3. How bad is the pain? What are the normal meds given for pain management?

My kids were on a PCA where they can top off a basal morphine drip with some more morphine up to a point. On day 3 they lost the PCA and went onto oral pain meds as I recall. The pain is bad if not managed. Also, the pain will spike on the PT days. This was Day 2 getting out of bed and onto the tilt table. The goal is to get the pain below a 3-4 out of 10 at all times. We did not manage that unfortunately.


4. Incision: What care is given to the incision site? When do they remove the stitches or are they the type that dissolve?

The only thing they did with the incision is replace the bandage on Day 4. There were no stitches that needed to be removed.


I know there's much that I'm missing.

Try to get some written protocols as to what to expect. The ones we got were extremely accurate and included the post op clinic visit schedule and what activities could resume when and when they might be ready to return to school and such.


If anyone would care to share their child's hospital story I'd really appreciate it.

There are plenty of testimonials in the kid's surgical section. But as Linda says, these will not necessarily apply to your surgeon and your hospital. I can say there was a huge variance between what other surgeon's do and what ours did.

Good luck.

Fingers Crossed
07-08-2010, 10:38 AM
Hello:

My daughter's surgery was originally scheduled for about the same time as your daughter's; however, her surgeon had a cancellation and we were moved to a June 21 slot. Here are my thoughts/answers to your questions:

1. What can we expect after our daughter is in recovery? I've read a couple of posts where people have said their child was still on a breathing tube for the day after the surgery. Is this the norm?

Our daughter's surgery was over by about 2:30 p.m. and she was in surgery recovery for about 90 minutes and we didn't get to see her until they wheeled her out and down the hall to PICU. In PICU, she was on all kinds of monitors, but did not have a breathing tube.

The following day she was moved to a regular room.

2. I've also read that the child is pretty much asleep for the first two days (surgery & day after). Is this the norm?

Jenna was awake sometimes, but asleep most of the time, during her night and part of the next day in PICU. I was surprised at the wakefulness. She wanted to brush her teeth and wash her face (in bed, of course), so we did do that. We took those clearasil face wipes to the hospital and used them throughout her stay, followed by a little lotion. These little things seemed to make her feel lots better.

3. How bad is the pain? What are the normal meds given for pain management?
She had the morphine drip/pump set up for her immediately after surgery. At her pre-ops, a pain management nurse had explained the drip to her, so she was prepared prior. Once the kids can start eating is usually when they take oral pain meds (they need to have food in their stomachs to tolerate the oral meds, is the reason we were given). Jenna didn't eat until two days after surgery, so then was put on oxycontin, oxycodone and valium (as needed for spasms).

Yes, the pain is bad. I felt like our hospital gave her a lot of good preparation on this, and that helped her be prepared for it. Also, she is participating in a study at the hospital on how adolescents with posterior spinal fusion cope with the pain and she is part of the group that received some extra counseling before surgery (in deep breathing and guided imagery, etc.) and also some nice perks, like massages (of her feet and legs) in the hospital. I really believe that information was power in this case and she coped amazingly well with the pain, and is still doing well.

4. Incision: What care is given to the incision site? When do they remove the stitches or are they the type that dissolve?

Jenna had a dressing over her incision until her ten-day post-op appointment. She had internal (dissolving) stitches and also the incision was sealed with that surgical superglue stuff. Now, about 17 days post-op, her incision is scabbed-over and in a few days she can bathe and go to a pool. When the dressing came off, she was able to shower. Up until that point, it was sponge baths.

Along those lines, I highly recommend having a haircare plan before you go to the hospital. We ran into an issue with Jenna's long hair. Even though it was in a ponytail, it became pretty tangled. The nurses washed it in bed once and then wheeled her to a beautician's sink to wash it another time. It was SO tangled, we needed de-tangler! And I felt so awful trying to brush out the tangles, which really bothered her. Bring her own shampoo, a good conditioner and some spray de-tangler with you to the hospital, is my advice.

We've also struggled with appetite/eating issues. Smoothies are our very good friends right now! In the hospital it was really hard figuring out something that sounded good. Finally, we figured out pancakes! Yay!

She was completely grossed out by the drain that came out of her incision into a bag in her bed. One kind nurse thought to cover it with a sock and that was great, she didn't have to see it.

On the puffiness issue - I have read about this from many parents. Our hospital has a special table with lots of gel cushion and I think this really helped our daughter. She had very little puffiness! And even though she is very thin, she didn't have other bruising, such as on her hip bones, from lying prone for the long surgery.

Gryffindor
07-08-2010, 11:49 AM
Fingers Crossed: Thank you for sharing your experience with us.

I've been preparing our daughter by providing her with as much information as I can lay my hands on and she's really looking forward to having this surgery as she's very tired of being in pain and knows this is the only thing that's going to eventually help. She also wouldn't mind gaining back some of the height she keeps loosing.

On the other side of things, every time I try to bring up the issue of our daughter's surgery and what to expect with my husband he shuts down and says he doesn't want to talk about it.

Ugh.:mad:

Fingers Crossed
07-08-2010, 05:23 PM
I am sorry that your daughter is in so much pain. Our daughter was just starting to complain of pain sometimes, it seemed to come on with running (as in on the soccer field or when just training).

She is still "ouchy" from the surgery, of course, and is wondering how she is ever going to sit at her desk all day once school starts, but I was just telling her we need to take this one day at a time and we will figure out something.

Your family will ALL be much better once you, too, are on the other side on this!

shei
07-08-2010, 06:19 PM
We just scheduled our 12 year old daughters spinal fusion for Dec.7 for her 57degree thoracic curve. The thought of surgery is really scary, but we are glad that we have time to prepare. I am sure after the shock of her actully needing surgery, I will have a ton of questions.

Marsii
(mother to Shea)

Gryffindor
07-08-2010, 07:19 PM
Shei: I know what you mean about the shock factor.

When my daughter had her consultation with her current surgeon we found out that her curves had progressed from 21 T 36 L to 36 T 48 L in just 3 months!

The other doctors in the room where we were reviewing her x-rays even turned to look at them due to the rapid progression.

All I could keep saying was, "It changed that fast?". Then it was a flurry of different people giving us information after our surgeon said she would definitely need surgery. I don't even remember what some of them said as I felt as if I had gone completely numb the second I heard the new numbers.

Once I had time to calm down from the shock of it all is when I started contacting everyone who had tried to give us info on that date because I couldn't remember exactly what they had said.

At least we're getting closer to the surgery date and our daughter is looking forward to it.

NEW QUESTION: Can anyone whose child has had surgery tell me if their child gained back any of the height they had lost? My daughter is curious to whether she will get any taller. We're holding off on buying new school clothes until well after the surgery to make sure what we buy both fits and is comfortable.

Fingers Crossed
07-09-2010, 09:36 AM
My daughter gained a little over an inch in height. She was already tall, so was glad not to gain more than that. (She is now a little over 5'9")

I've been wondering about this, though, too. Her t curve was in the low 50s and she was developing a significant rib hump. The hump is now all but gone and her back looks great. Still, though, "only" gaining an inch . . . just seems that common sense would dictate that straightening that large of a curve would create a greater height gain?

Anyone else have thoughts/insight on this?

Gryffindor
07-09-2010, 01:53 PM
Fingers Crossed: What were her curves before and what are they now after surgery?

Our daughter is just a bit over 5'1". She used to be over 5'2".

Fingers Crossed
07-09-2010, 02:07 PM
Just edited my signature to include her curve number pre-op. (52T and 30L)

Her lumbar was compensatory, and it straightened out nicely during surgery. At her 10-day post-op appointment, her surgeon said he believes she will not have problems with her lumbar curving in the future and of course we were very happy to hear that!

Gryffindor
07-15-2010, 08:58 PM
Well, when it rains it pours. Our main water line which feeds water to our house has a leak. Called a plumber for an estimate to fix the mess this morning. $1k. That's pretty much all of the money we had saved up to go to SLC.

I don't know how we're going to make it there now. We already have our plane tickets but now we don't have any money for food or a hotel (we were hoping to get into the RMD House but can't get a confirmation until we arrive in SLC).

leahdragonfly
07-15-2010, 11:27 PM
Hi there,

I am so sorry to hear about your daughter's surgery and your recent added stress. I would reach out to either your local Shrine Temple or the SLC Shrine (look online) and inquire about help. You do not have to be a Shriner to ask for help. I have heard of them transporting families. I would also try calling the Family Services folks on SLC and see if they can help with any of the costs.

Good luck,

Gayle

trav86
07-17-2010, 03:42 PM
Gryffindor, we didn't have to make arrangement for accommodations because both our apartment and the hospital, NY Presbyterian, are in NYC, but we were able to stay in our son's room with him the whole time he was in the hospital. Would you be able to do that at Shriner's? It would at least save you the hotel expense. (If there's only room for one parent, your husband might volunteer to stay behind ;)) Also, Presbyterian has a program where they find local host families for parents who are traveling from out of town. Shriner's might have something like that, too.

So sorry to hear about your troubles. I hope they're resolved soon.

Gryffindor
07-17-2010, 10:34 PM
The hospital does have rooms.....for 1 parent on a first come, first served basis. For the first 3 days they will not allow us to stay in our daughter's room. After that a parent is expected to. Our daughter is insisting that we both be there.

Shriners purchased mine and our daughter's plane ticket. We had to purchase my husband's ticket with our own funds.

Somehow we'll make this work.

And to make matters worse, one of the plumbers called in sick on Friday so they rescheduled for Monday morning. In the mean time my water is still leaking in the front yard. Ugh.:mad:

Fingers Crossed
07-29-2010, 03:33 PM
Hi Gryffindor:

Now that it is almost August, I bet that surgery date is really looming large for your family! I think about this all the time, because our daughter's original surgery date was Aug. 20, but the surgeon had an opening earlier.

I hope you were able to figure out these financial issues. All of this is just so stressful, so its particularly unfair to have to worry about THAT, too.

Our daughter had her six-week checkup yesterday and the doctor cleared her to run, so she is happy. She can't lift more than 15 pounds, so he suggested an extra set of textbooks so she can have a set at home (just FYI, something to think about for when Cheyenne goes back to school).

It has been a long summer in some ways, and an incredible blur in others. But I am happy to report that Jenna has truly turned a corner in the past week or so. She went out and ran this morning. And her back looks great. I am so hopeful, and pretty optimistic, that we have saved her years and years of pain and grief by doing this now.

Hang in there!

Gryffindor
07-29-2010, 07:45 PM
Fingers Crossed:

Thank you for the words of encouragement! We're in the home-stretch right now just counting down the days till we leave for SLC.

I was able to get us back our medical coverage as of just yesterday!:)

I've scheduled an appointment with my daughter's pediatrician to get her last set of shots and do a basic pre-surgery check-up.

We're still trying to save up for the trip. I'm sure it will all work out in the end. I feel A LOT better knowing we now have medical insurance should anything go wrong after we get home.

I also want to see if I can set up the 6 wk check up to be done locally with help from her pediatrician. Shriners wants us to fly up to SLC just for the day to do the check-up. I'd rather not go through airport security twice and be on a plane for 4 hours in one day.:eek: If we can work it out where she can have her x-rays done locally and sent to SLC and have her pediatrician check on her incision, I'd be MUCH happier!

I was really glad to read how quickly your daughter is healing! I hope my daughter does as well.

Our school year starts in about a week. I contacted the local Center for Disability law and told them the horror story of what our daughter's school put us through last year. They started me down the correct path to make sure that doesn't happen again. I've sent in a request for my daughter to be evaluated through the school district (I was told by the center NEVER to go directly through the school) in regards to her missing a lot of school this coming semester due to the surgery and recovery period. They have 45 days in which to respond. So far I haven't heard anything back.

I've also sent an email and received a reply from the new school principal. She's going to set up a meeting between our family and my daughter's new guidance counselor. In reality, I'd like to have a meeting with: All of her teachers, the principal, VP in charge of attendance, attendance clerk, school nurse, truancy officers, etc. I DO NOT want a repeat of what happened last year!:mad:

We're in a bit of a predicament with it being a new school year and the whole school clothes thing. DD want's new clothes NOW. I've tried to explain to her that she's likely going to gain some height and that she's going to want clothes that aren't going to rub against her incision site. I've asked her to wait until at least a couple of weeks after the surgery before we buy anything. We came up with a compromise and she's going to get a couple of pairs of pants and shirts just for the first two weeks of school. After the surgery, and when she feels up to it, we'll go clothes shopping.

Gryffindor
08-03-2010, 10:59 AM
Well things are starting to finally get done. I've got a lot going on just for this week:

Wednesday: Appointment with my daughter's primary care physician to get her last set of booster shots and a check-up to make sure she's ready for surgery at the end of the month.

Next Weds: Meeting with my daughter's teachers, guidance counselor, school psychologist (she's in charge of 504's). We're going to go over getting her assignments early so she can complete them prior to leaving for surgery. From there we'll be getting her assignments for each week from the school and then turning them back in. They still will not assist us with homebound instruction.:mad: The only class I'm concerned about is her math class. DH & I can help her with English, Science and History but her math level is way beyond what either of us can help with.

The school's psychologist will be drafting up our 504 plan. This is what I've been wanting all along so that we can make sure there will be no problems with attendance and to make arrangements so she can have a 2nd set of textbooks, exemption from PE, release from her classes 5 min early and if she is having a bad pain day, to be released from class immediately to the school nurse who is to call us to pick her up. I will NOT leave any of her meds at the school.

Shriner's emailed me yesterday that they were finally able to get her Dr. to complete the school district's form in regards to children with chronic health conditions. We should get it before school starts next week.

Our daughter was able to get some school shopping done. Instead of buying pants she bought shorts. It's hot here and with shorts, if she gains any height after the surgery it won't matter nearly as much as it would with pants. We still need to purchase a set of slippers for use while in the hospital but other than that, I think we're pretty much ready.

Gryffindor
08-04-2010, 07:45 PM
We met with our daughter's pediatrician today. He's such a great guy.

She received the final two shots she needed and he checked her over to make sure she was good for the surgery.

Only concern I have is that she's lost weight. When he originally saw her back in Nov 09 she weighed 90 lbs. She's down to 82.

I've read a couple of stories about SMA's and how they generally happen to thin girls and now I'm concerned.

She's eating just as much as she always has and her activity level has actually decreased so I have no idea why she's losing weight. Her Dr. wasn't sure either other than to say that her pain could be causing her body chemistry to speed up a bit.

Next big hurdle is the meeting with the school next week. I've got to start putting together a bullet point list of items to go over so nothing gets missed. If anyone has any suggestions of what I should have included in the 504 please let me know. So far I've asked them for:

1. 2nd set of textbooks. One set to be kept in each classroom. One set to be kept at home.

2. Exemption from PE for the remainder of her HS years. (Will be following this one up with a Dr. note). I don't want to take any chances on having a failed fusion and the school's PE class does include contact sports.

3. Request that she be allowed to leave each class 5 min early so she's not getting knocked around in the crowded hallways.

4. Setting up the "Homework Request Program". This is the one that I really need to nail down. She's going to be out of school for approx 2 months. Since they won't provide her with homebound instruction, we're working it out where her teachers will provide her with her assignments, we pick them up weekly at the school and turn in the completed assignments. I want to try to get as many of the teachers to do this via email instead of driving back and forth.

Anything I'm missing?

Edit: I forgot to ask another question of everyone. Has anyone's child experienced problems with loud hiccuping, but it's only one hiccup and it happens several times a day (she sounds like a Pterodactyl). Her Dr. had no answer for us on this one either except to say that perhaps the nerve that triggers hiccups is being triggered by her scoliosis.

Fingers Crossed
08-05-2010, 01:38 PM
Sounds like you are really getting everything in place. Reading about all you are doing just for the missing-school-issue makes me doubly (maybe even quadruply!) glad that Jenna ended up getting an earlier surgery date and will not miss school. (But I'm sorry you are having to go through all that planning, too.)

I know it is hard not to worry, but from what I understand, SMAs are very rare.

Our only issue post-op is the weight issue. Jenna started out very thin and has lost 8-10 pounds (narcotics just killed her appetite, I think). At her six-week checkup her doctor urged her to get a handle on this because sometimes being too lean can impede healing. I will let you know if we can come up with something that works.

Otherwise, she is doing really great. She does get fatigued by the end of most days (and it has been brutally hot where we live, so that doesn't help), but she is sleeping well and just needs a little Tylenol once in awhile.

Hang in there!

Gryffindor
08-05-2010, 11:03 PM
Here's what I came up with for our meeting with the school next week. If anyone can think of anything that I need to add or omit, please let me know.
This document should help when we go to draw up the 504.


MEETING IN REGARDS TO SPECIAL ACCOMMODATIONS DUE TO A CHRONIC MEDICAL CONDITION AND THE HOMEWORK REQUEST PROGRAM – 8/11/10

Attendees: XXXXXXXX – School Psychologist
XXXXXXXX – Guidance Counselor
XXXXXXXX - World History
XXXXXXXX - Biology
XXXXXXXX - Algebra II
XXXXXXXX - English II
XXXXXXXX – Mother
XXXXXXXX – Student

Student: XXXXXXXXXXX, Grade 10.
Medical Diagnosis: Severe scoliosis requiring corrective surgery.
Treatment: Surgery - Rod Insertion/Spinal Fusion from T 3-4 to L 3-4.
Surgery Date: XX/XX/XXXX – Shriners Hospital for Children, Salt Lake City, UT
Expected Absence Timeframe: XX/XX/XX to XX/XX/XX. Timeframe is subject to change.
Anticipated Full Recovery Timeframe: One year, barring any complications.

Requests In Regards To Special Accommodations:

1. Two sets of textbooks:

a) One set of textbook(s) for each class to be kept in each classroom in the possession of the teacher administering the class. The textbook(s) shall be made available to XXXXXXXX at the start of each class period.

b) One set of textbook(s) for each class to be kept at XXXXXXXX's residence.

2. Additional time to safely move from classroom to classroom:

a) XXXXXXXX is to be released five (5) minutes prior to the end of each class to allow her to safely move from classroom to classroom to avoid any possible injury.

b) Teachers will need to provide XXXXXXXX with a hall pass daily AND/OR school administrators will need to notify security personnel of this provision to avoid any possible misunderstandings with school personnel.

3. A permanent exemption from any and all Physical Education classes.

a) A medical note from her surgeon will be provided.

4. Pain Management:

a) The school nurse will be notified by XXXXXXXX and/or XXXXXXXX of XXXXXXXX's medical condition.

b) Should XXXXXXXX wish to go to the school nurse in regards to any pain she may be experiencing, we ask that her teachers immediately grant her a pass to go to the nurse.

c) As it is unlikely the school nurse will be able to alleviate XXXXXXXX’s pain, we are asking that she be allowed to call a parent or any person listed on her emergency contact list to pick her up from school and bring her home so she may take her prescribed pain medication. Due to the strength of the pain medication, we feel it is safer for this medication to be administered at home.

5. Attendance:

a) The Attendance Clerk shall be notified of the upcoming prolonged, medically excused absence, by XXXXXXXX and/or XXXXXXXX to avoid any miscommunications that may result in the threat of legal action against the XXXXXXXX family.

Requests in Regards to Education:

1. Homework Request Program.

The Homework Request Program, as explained to me by former guidance counselor, Mr. XXXXXXXX, is a program that will allow XXXXXXXX, while absent from school, to request her assignments for each class and for each teacher to provide the assignments to the front desk to be picked up each week. Completed assignments would also be returned in the same manner.

2. Proposed Amendments To the Homework Request Program.

Assignments:

a) Obtain a list of all assignments due through xx/xx/xx from each teacher no later than xx/xx/xx. This list should include due dates for all assignments.

b) Obtain any/all teacher generated handouts that will be distributed through xx/xx/xx. It would be preferable to receive these handouts no later than xx/xx/xx. For handouts that are unavailable by xx/xx/xx, teachers are to email (if possible) the handout or provide the handout to the front desk of the school and notify XXXXXXXX’s parents the handouts are at the front desk ready to be picked up.

c) XXXXXXXX will be unable to complete any assignments from XX/XX/XX through XX/XX/XX (the length of her hospital stay), and for up to 2 weeks after being released from the hospital due to the medications she will be taking for pain. Teachers will need to understand that no assignments will be turned in during this time period.

d) We are requesting to receive assignments for the time period of XX/XX/XX through XX/XX/XX (the surgery, hospitalization and initial recovery period) as soon as possible so XXXXXXXX won’t have to worry about falling behind for the weeks she will be unable to complete assignments.

e) Teachers will agree to accept assignments prior to their due date.

Methods of Obtaining and Submitting Completed Assignments:

a) The following methods, listed in order of preference, are agreed to be used for obtaining and submitting completed assignments:

1. Email. (See paragraph b. below).
2. XXXXXXXX HS front desk. Assignments will be provided by each teacher to the front desk for pick up each Friday afternoon for XXXXXXXX’s parent’s to pick up. Completed assignments will be provided to the front desk, labeled with the teacher’s name that provided the assignment, for each teacher to pick up.
3. US mail.

b) Need for teacher’s valid email addresses: To avoid constant trips to the school, we would prefer to have XXXXXXXX complete her assignments, scan them to our computer, and submit them to her teachers, via email, as a .pdf file.

Each teacher agrees to check their email on a regular basis for assignments that will be turned in as they are completed. If this is unacceptable or impractical, any teacher who is unable to receive completed assignments in this manner needs to inform XXXXXXXX, XXXXXXXX’s mother, of their preferred method for receiving completed assignments as soon as possible. Please be advised that we do not have access to a fax machine. All assignments will be kept confidential by XXXXXXXX and will not be provided to any other student.

Preferred Method of Providing Assignments to Student: (email, front desk, US mail)

XXXXXXXX - World History __________________

XXXXXXXX – Biology __________________

XXXXXXX - Algebra II __________________

XXXXXXXX - English II _____________

Preferred Method of Receiving Completed Assignments: (email, front desk, US mail)

XXXXXXXX - World History __________________

XXXXXXXX – Biology __________________

XXXXXXX - Algebra II __________________

XXXXXXXX - English II _____________



Methods of Obtaining and Completing Tests:

a) Tests: An acceptable solution, beneficial to all parties involved, will need to be created. Teachers have the following options: 1. Teachers may come to our residence to administer tests. 2. Teachers may provide tests through the front desk of the school for XXXXXXX’s parents to pick up after being notified by the teacher that the test is ready to be picked up. 3. Teachers may email the tests to the email address provided in the previous section. 4. Teachers may mail the tests to our home address. XXXXXXX will not be able to come to school to take any tests due to the risk of infection. XXXXXXX will keep all testing information confidential and will not provide this information to any other student.

Preferred Method of Administering and Receiving Tests: (residence, front desk, email, mail)

XXXXXXXX - World History __________________

XXXXXXXX – Biology __________________

XXXXXXX - Algebra II __________________

XXXXXXXX - English II _____________


Additional Assistance in Regards to Completing Assignments:

a) Should XXXXXXX run into any problems completing an assignment or have any questions, we are requesting that each teacher provide their preferred method of contact so that she may obtain assistance when necessary.

Preferred method of contact: (email, telephone)

XXXXXXXX - World History __________________

XXXXXXXX – Biology __________________

XXXXXXX - Algebra II __________________

XXXXXXXX - English II _____________


Contact Information for XXXXXXX XXXXXX and her Parents, XXXXXX & XXXXXX XXXXXX:

Our email address is: XXXXX@XXXXX.NET.

Phone Numbers: XXXXXXX Cell: XXX-XXX-XXXX
XXXXXXX Cell: XXX-XXX-XXXX

Home Address: My Address
City State Zip


Contact Information for all Teachers:

Teacher email address:

XXXXXXXX - World History __________________

XXXXXXXX – Biology __________________

XXXXXXX - Algebra II __________________

XXXXXXXX - English II _____________


Teacher contact phone number(s):

XXXXXXXX - World History __________________

XXXXXXXX – Biology __________________

XXXXXXX - Algebra II __________________

XXXXXXXX - English II _____________


Attachment: Medical Certification of a Chronic Health Condition

Sherie
08-05-2010, 11:44 PM
Looks like you covered all the bases, this is exactly what I had in place for my daughter. It worked out very well. In addition, the 504 allowed her to bring a "helper" with her between classes, it wasn't usually necessary but her friends loved that privilege. She left her last class 10 min. early because her school was very crowded. She also had elevator privileges but used the stairs for the most part unless she got caught up in a crowd. She was really afraid of getting hit or pushed in the back that first year (understandably).

There was a tutor assigned to us to come during the week to administer tests and to help with assignments. Most of the time, we emailed assignments back to each teacher except for art projects. She was taking 3 AP classes that year and did just fine.

We scheduled her surgery over the Thanksgiving break therefore she had that week plus the Christmas break so had a total of 7 weeks before she returned. She needed every bit of that time. Some kids recover quicker but you never know.

Good luck.

Gryffindor
08-06-2010, 09:20 AM
Sherie: Thank you for going over the doc for me. The first part was easy. I then ended up with a serious case of writers block for the second part in regards to assignments. The darned thing took me a couple of hours to get to where it is now. lol.

I WISH the school would provide a tutor. So does her surgeon. He's repeatedly asked for homebound instruction and they keep denying us.

None of my daughter's friends will be able to help as my daughter is about one year ahead of all of them (she's fast tracking herself so she can graduate early). So, most of the people in the classes she's taking will be Juniors while she is only a Sophomore.

I think she'll be OK though. Even with all of the missed school days last year she was still able to pull off a 3.72 GPA. If her English teacher hadn't been such a ditz she would have gotten a 4.00.

But, this will be a different scenario considering the surgery, medication and healing that needs to take place. We're hoping to get as many assignments as possible completed prior to leaving for surgery. She's going to be one very busy homework bee.:D

Her school is all one level so at least we don't have to worry about stairs. I don't think any of her classes are really far apart so the 5 min should work out fine. It will also give the next teacher enough time to provide her with her textbooks. The one thing that I am worried about.......substitutes.:o The teachers never seem to leave notes for them.

Fingers Crossed
08-06-2010, 10:45 AM
Sorry, I really don't know much about 504 plans . . . but doesn't the school HAVE to provide homebound teaching when a student is physically unable to be at school (such as after surgery)? This is a public school, correct? In our school district, if a child is expected to miss four or more weeks of school, the school is obligated to figure out homebound teaching.

I'm sure you've thought about this, but I wanted to say that I don't think there is any way my daughter could have done homebound schoolwork for almost three weeks after surgery. She was taking oxycontin, oxycodone and valium-as-needed-for-spasms. She spents lots of time propped on pillows watching movies, and we were all at her bidding. :) She found it hard to even read, and she loves to read, normally.

Since Cheyenne is such a good student, she will just sail through the schoolwork I am sure!

Sherie
08-06-2010, 10:45 AM
The tutor was nice to have but to be honest, she wasn't very helpful as far as knowing the actual work. I actually helped her more because the tutor was only there a few hours anyways. I think it's odd that your school district isn't required to provide some kind of tutor, most everyone I've talked to has had one.

Most of her teachers would send the homework for the entire week and she would have all week before she needed to turn it in. They were very considerate and I think, a little lenient given the situation.

Sheena wasn't ready to tackle any homework until the 3rd week home because of the medications and she just wasn't up to it. She took herself off the prescription meds at that time and switched to tylenol because she was very emotional on them and didn't like that. Of course, tylenol doesn't do as good a job but I would give her a valium or painkiller if she really needed it.

Sheena also missed a lot of school because of many various appointments, before and after surgery. Your daughter sounds very motivated, she's going to do fine with school, don't worry too much about it. You're doing a good job getting everything lined out, it will all work out in the end.

Sherie
08-06-2010, 10:55 AM
Sorry, I really don't know much about 504 plans . . . but doesn't the school HAVE to provide homebound teaching when a student is physically unable to be at school (such as after surgery)? This is a public school, correct? In our school district, if a child is expected to miss four or more weeks of school, the school is obligated to figure out homebound teaching.

I'm sure you've thought about this, but I wanted to say that I don't think there is any way my daughter could have done homebound schoolwork for almost three weeks after surgery. She was taking oxycontin, oxycodone and valium-as-needed-for-spasms. She spents lots of time propped on pillows watching movies, and we were all at her bidding. :) She found it hard to even read, and she loves to read, normally.

Since Cheyenne is such a good student, she will just sail through the schoolwork I am sure!

We posted at the same time and said almost the same thing (great minds...):)Sheena was also on those meds and couldn't read until she was off them too.

Gryffindor
08-06-2010, 11:11 AM
Here's the school District's policy in regards to Homebound Instruction. Nowhere does it state that they will provide a tutor. It also contradicts itself on the number of days missed before the Homebound Instruction kicks in:

PUSD Governing Board Policy Manual:
5.3.2.2 STUDENTS WITH CHRONIC HEALTH CONDITIONS

The Board recognizes that students with chronic health conditions have a right to receive a public education. The Board also recognizes that it has a responsibility to assure that the public school provides a safe environment for all students and employees. The Board directs that each chronically ill student receive a public education in accordance with current law. It is expected that students shall continue to attend school as prescribed by law unless their health condition poses a threat of contagion to others, or is so debilitating as to be a threat to their personal well being, as confirmed by medical certification as described herein. Students who are absent due to chronic health conditions shall be provided with homework assignments during the absences. Physical education requirements also shall be modified as deemed appropriate. No student certified as having a chronic health condition will be penalized for absences due solely to the chronic health condition. Credit will be given for completed course requirements.
A. Definitions

1. Students with chronic health conditions are those who have obtained written medical certification from a licensed physician (M.D. or D.O.) which indicates:

a. a diagnosis that the student has an illness or disease, or has had an accident, which interferes with regular school attendance, and
b. the student's present health condition and course of the condition, and
c. an estimate of the impact of the condition on regular school attendance.

2. Homework assignments are those assignments that can be completed at home such as programmed learning packets or independent study modules.

B. Identification/Referral Process

1. Registration or other relevant data, including but not limited to data used to screen students for possible referral to special education programs, shall be reviewed to attempt to identify students who may have chronic health conditions.

2. The District will provide to parents information which contains an explanation of services available to students with chronic health conditions. (Note: They NEVER did this last year).

3. Students may be identified or referred by teachers, nurses, or school administrators at any time during the school year. Parents/legal guardians may request referral of a student. All referrals by school staff shall be routed to the principal or designee who will contact the parent/legal guardian as indicated in Item 4 below. Note: They never did this either.

4. If a student is identified as possibly being one with a chronic health condition, a medical certification form with a letter of explanation shall be sent to the parents, to be returned to the designated school official. It shall be the responsibility of the parent/legal guardian to provide written medical certification, as defined above, to the school within 7 school days after receipt of the referral. Failure to provide such Certification may result in suspension by the principal or assistant principal until required documentation is provided. If the medical certification reveals that the student is one with a chronic health condition, the student's elementary teacher or high school counselor shall contact the student's parent to determine appropriate methods for delivery and return of homework assignments, and convenient times for telephone or other consultation with teacher to clarify assignments if necessary. In each case, all teachers participating in the instructional program of the student shall be advised by the principal of the student's condition. All concerned shall be charged with maintaining appropriate confidentiality to protect the student. They didn't do this either!! And this is what caused all of the problems last year. They never provided us with THEIR form until AFTER a Truancy Officer pulled Cheyenne and a few other students into a room together and gave them a severe tongue lashing about missing school. My daughter said that the majority of the kids in this meeting all had chronic health conditions. What really infuriated me was the fact that they never contacted myself nor my husband to let us know that this meeting was going to occur! And, all of the kids who had chronic health conditions had to let this Truancy Officer know, in front of all of the other kids, what their medical condition was! As you can probably tell, I'm still very angry about this!

5. The school nurse shall be consulted upon identification of a student as one with a chronic health condition. The nurse shall assist teacher(s) in planning for students with chronic health conditions, especially in situations where it is necessary to modify physical education requirements.
WE notified the school nurse of our daughter's condition, nobody else thought to.

6. An updated medical certification shall be obtained at least once each school year to verify that the student continues to have a chronic health condition. An updated medical certification may be submitted at any time if deemed necessary to reevaluate the student's need for services.

7. If the student is identified and served as a student with chronic health conditions and absences are projected to total three school months or more during a school year, the student shall be referred for Special Education Homebound services. Note: Then it goes on to contradict itself in the paragraph below.

8. Homebound services may be provided by the district as determined by site administration. All students who have a verified absence projected to be 30 school days or greater will be provided Homebound services. Homebound services will be provided at four instructional hours per week.

C. Provision of Homework and Modified Physical Education

1. The amount, nature and timelines for homework assignments shall be determined by the student's teacher according to the following considerations:
a. the nature of the health condition as it relates to the student's anticipated activity level during absences;
b. the coursework difficulty and student's ability to learn independently;
c. the goal of maintaining integration of the student in the regular education program as much as reasonably possible.

2. Teacher shall maintain records to verify that homework assignments have been provided and that the completed homework assignments have been returned.

3. Regular classroom assignments shall be modified to the extent reasonably possible so that full credit may be attained for homework. In cases where class participation or laboratory work is a necessity for completing coursework requirements (i.e., lab sciences, computer labs, or foreign language labs) and revision of the exercise into a homework format is not practical, and where the student will be absent for such a number of labs or classes that full credit for the course would not be possible, the following options are available:
a. a school counselor shall determine whether the student can enroll in classes where special make-up labs and/or activities involving equal credit are available.
b. the student may enroll in a correspondence course and/or e-school approved by the District where equivalent course credit is available and where course criteria and instruction are based on student's ability to independently complete the course;
c. the parent/legal guardian and counselor may meet to determine whether the student should enroll in the class during a subsequent semester when fewer absences are anticipated; or

d. teachers, district staff or volunteers may be enlisted, as available, to help with special needs such as make-up of a lab assignment.

4. Students with chronic health conditions should participate in regular physical education activities as much as their health permits. Modification of regular physical education requirements shall be made when appropriate with parent/legal guardian and physician approval.

5. Administrators and counselors preparing schedules for students with chronic health conditions should take into consideration the anticipated days of absence (noted on the Medical Certification form) and the feasibility of completing courses requiring laboratory work or vocational workshops. In no case shall a student be denied placement in a class needed to meet graduation or college entrance requirements. Reasonable efforts should be made to adjust the curriculum to meet the student's needs.

6. In-service training shall be provided to help employees and parents understand the problems of the chronically ill student. To the extent necessary and reasonable, substitutes and volunteers shall be made aware of the condition of chronically ill students with whom they are expected to come in contact.

D. Reporting Requirement

Attendance personnel at each school must notify the District Office when the school serves a student with a chronic health condition so that requests for further adjustments may be made to the adjusted average daily membership ("ADM"). Registration forms, enrollment data, and attendance registers shall indicate students with chronic health conditions in order to document ADM adjustments to the Arizona State Department of Education, School Finance Section.

Pooka1
08-06-2010, 07:04 PM
Is fusion for scoliosis considered a chronic condition?

Will the surgeon be able to say she is on physical restrictions for three more years in order to get the permanent excuse from PE? I have never heard of a kid on restrictions for more than a year if the surgery went as planned.

My one daughter would love to get a permanent excuse from having to take PE which she was dropped from when I informed the school of her upcoming surgery. She would much rather squeeze in another academic class but she was released for all PE activities at 8 months.

If surgeons are restricting kids for 3 years with this surgery then that's news to me.

Gryffindor
08-06-2010, 07:58 PM
Pooka: The district defines a chronic health condition as anything that may cause the student to miss 5 or more school days.

My daughter is on an accelerated school schedule. She's a sophomore taking junior classes. She'll be graduating a year early if all goes as planned. This would leave her with this year for PE, which is out of the question, and next year. Since school out here starts so darned early, she'd still be in the healing year for the first semester. That would leave the second semester of next year in which she could take PE. Only 1 semester of PE is required in our state.

Her counselor said if we could obtain a note from her surgeon permanently excusing her from PE that the school would abide by it. I don't think it's going to be a problem obtaining the note. But, I won't know for sure that she'll get the exemption until after I speak with her surgeon at the end of this month.

Pooka1
08-06-2010, 08:12 PM
Pooka: The district defines a chronic health condition as anything that may cause the student to miss 5 or more school days.

Oh wow. That's amazing.


My daughter is on an accelerated school schedule. She's a sophomore taking junior classes. She'll be graduating a year early if all goes as planned. This would leave her with this year for PE, which is out of the question, and next year. Since school out here starts so darned early, she'd still be in the healing year for the first semester. That would leave the second semester of next year in which she could take PE. Only 1 semester of PE is required in our state.

Her counselor said if we could obtain a note from her surgeon permanently excusing her from PE that the school would abide by it. I don't think it's going to be a problem obtaining the note. But, I won't know for sure that she'll get the exemption until after I speak with her surgeon at the end of this month.

Can you post if he writes the note for more than a year?

This school requires a semester of PE also. It is block scheduling and you need 26 credits to graduate but if you stay four years you end of with 32 credits. A lot of kids graduate early because of this but I need to meet with a university admissions counselor about what is a better strategy... get out earlier or stick around and get more AP classes and AP electives under their belts. I'm going to ask that question of several of them at different schools to see if there is a range of opinion on this.

Gryffindor
08-06-2010, 09:39 PM
Pooka: I'll be happy to let everyone know what happens after the surgery, including whether or not we get the note.

It sounds like you're beginning what I should have already started in the way of looking into colleges. Our daughter knows where she wants to go to college. It's the same school her father went to (not in our state). I've had her check their admissions requirements vs her graduation requirements.

We're contemplating moving out of state next year so she will be able to take advantage of in-state tuition vs out of state tuition rates.

leahdragonfly
08-07-2010, 11:40 AM
Dear Gryffindor,

I just wanted to tell you I think you are doing a fantastic job advocating for your daughter. Your written info for the school is very well organized and thorough. Good luck with the upcoming school district meeting. I am sure all will work out ok with them.

One tiny suggestion about pain at school. Would you consider leaving a bottle of Tylenol with proper dosing instructions? I did this for my 8 y/o daughter, who went back to school 10 days after her vertebral stapling surgery. I felt much better knowing she could go to the office and they would give her a tylenol if needed. By that point she had been off narcotics for 5 days, and if she got sore at all, Tylenol did the trick.

I realize your daughter's situation is much different, but perhaps by the time she goes back to school, having Tylenol available at school might be helpful. Your daughter of course could decide if she wanted to try a Tylenol, or just be picked up immediately.

I also wanted to wish you, your daughter and family the very best of luck with her surgery. These last few weeks and days before surgery can be so nerve-wracking, but you sound like you are doing a great job focusing on getting things done. Good for you!

I will look forward to hearing your updates through surgery and recovery. You will be in my thoughts and prayers.

Gayle

Pooka1
08-07-2010, 11:50 AM
Dear Gryffindor,

I just wanted to tell you I think you are doing a fantastic job advocating for your daughter. Your written info for the school is very well organized and thorough. Good luck with the upcoming school district meeting. I am sure all will work out ok with them.

I agree with this. I bet parents will be copying/pasting that to use themselves. Since it is so complete, it might warrant being made a sticky at the top of this section.

Good luck with the surgery.

Gryffindor
08-07-2010, 12:50 PM
leahdragonfly and Pooka: Thank you for the compliments about the school doc.

Luckily, our district already provides Tylenol or Motrin to a student, provided a parent has turned in a signed consent form. We complete and turn this at the start of every year. It's standard practice and comes with the registration packet for the new school year.

ddb
08-07-2010, 01:27 PM
Sounds like a good plan! Dealing with the school was the most difficult part of DD's recovery for us. She also was in 10th grade, and taking a very full load of classes.

Please check into Homebound - here it's not a school function, but State. There is an amount of miised school needed - here was 6 weeks before you can get Homebound instruction, and although DD could be back to school anywhere from 4 weeks to 6 weeks surgeon put down the longest and we got it set up. Others have said they weren't helpful, but once you see the amount of paperwork that comes in you'll know it can be overwhelming. The tutor helped by communicating with the teachers and a lot of busy work was removed. Not all tutors are created equal - DD had two. One just for Spanish - the other for most other classes. Even with a tutor she had to drop her science class - there was no help from the teacher to get her caught up.

You've done a great job with the outline. Keep your Guidance office on spped dial - they can be your best friend through this.

Good luck
Dee

Gryffindor
08-10-2010, 10:10 PM
Tomorrow morning is the meeting with the school. So far I've only received one email from one of her teachers and he won't be able to attend the meeting.

I have a feeling there's going to be a number of no-shows.

At least I have the doc I typed up for them to go over in their free time.

The surgery date is only a week and a half away. It doesn't help matters that the news has been reporting a lot of plane crashes lately. Ugh.

We're still not sure where we're going to stay. My extended family has taken up a collection to help us out since that darned water line ate up our savings.

So much to do and I'm running out of time..........:eek:

Sherie
08-10-2010, 10:37 PM
Is the counselor arranging the meeting? Sheena's counselor did and she was responsible for getting all the teachers to the meeting, of course, it was during the school year so they were all available.

You're flying to the hospital? How long is the flight? We had a 2 hour flight to St. Louis. We've been back and forth 6 times I think. Had a few problems such as flights getting canceled and having to take a detour which landed us in Dallas and no way to get home, but we survived.

There was a hotel in the medical complex in St. Louis where we had a room. I stayed the entire time with Sheena but my husband slept in the hotel. We also spent an additional night after she was discharged because she wasn't up to traveling.

Best wishes to your daughter and family.

Gryffindor
08-11-2010, 08:30 AM
Duplicate post

Gryffindor
08-11-2010, 08:33 AM
Is the counselor arranging the meeting? Sheena's counselor did and she was responsible for getting all the teachers to the meeting, of course, it was during the school year so they were all available.

It's the school psychologist that's arranging the meeting. She's in charge of students with 504 and IEP's.

You're flying to the hospital? How long is the flight? We had a 2 hour flight to St. Louis. We've been back and forth 6 times I think. Had a few problems such as flights getting canceled and having to take a detour which landed us in Dallas and no way to get home, but we survived.

Yes, we have to fly. We're in AZ. The flight is just under 2 hours.
I really hope we don't run into a cancellation. The flight to SLC is going to be cutting it very close on the time we have to be at the hospital. They want us there between 1-2 p.m. Our flight doesn't land until 11:40. Then we still have to recover our luggage, find our Shriners driver and make it to the hospital.

There was a hotel in the medical complex in St. Louis where we had a room. I stayed the entire time with Sheena but my husband slept in the hotel. We also spent an additional night after she was discharged because she wasn't up to traveling.

They sent me a list of hotels they have reduced rates with and that offer shuttle service to the hospital. I looked each one up on hotels.com and the average price appeared to be $80/night. For 10 nights that's $800!:eek: I'm hopeful we'll get into the RMD House. That's far more within our budget at only $15/night ($150).

Our plan is for my husband to spend the night before surgery with our daughter at the hospital and I'll get us situated at the hotel/RMDH. She's likely going to have a rough night the night after the surgery and I want to make sure I'm there. We're going to trade off back and forth so at least every other night one of us is getting a decent nights rest on a decent bed. The hospital only has those fold out chair/recliners. If I spend too much time in those MY back will go out.:rolleyes:
Best wishes to your daughter and family.

Sherie: Thank you so much for your well wishes. Also, I wanted to thank you for posting the pics of your daughter. Those have helped my daughter and I prepare for the surgery. This way we know approximately how big the incision will be. Your daughter's surgeon did a fantastic job! Your daughter's x-rays look like she got pretty close to 0 on the curvatures. I only hope our outcome is as great as yours was.

Well, the meeting at school is in 1/2 hour. I'll post later and let everyone know the outcome.

Gryffindor
08-11-2010, 01:00 PM
Ever walk into a meeting and feel like everyone there is against you?

Well, that was my meeting with my daughter's school this morning. What a mess.

The only teacher to show was her Algebra teacher. The Vice Principal attended along with two other ladies that I did not catch their names nor titles.
The school psychologist and her guidance counselor were there.

The ONLY one on our side was the school psychologist. If she hadn't been there things would have been much worse. The guidance counselor sat there looking frightened of the whole procedure and really didn't say much and certainly did not advocate on behalf of my daughter.

The meeting started off with the VP introducing himself and going out of his way to mention several times about how my daughter need this time to heal. He had no clue of what procedure she was having done. To hear him speak it was as if she was having a brain tumor removed, or something that would impair her cognitive abilities. Ugh.

I got the feeling from the get go that they were going to ask me to hold my daughter out of school this semester. As soon as they did make that recommendation, I shot it down with the requirements under federal law, state law and school district policy (thank god I had done my homework!).

The VP and math teacher then proceeded to tell me how my daughter could not take Biology nor Algebra II as part of the homework request program. Biology I could understand as there are labs that she would be missing. I did ask if she would be given the opportunity to take those labs once she returned to school and was given a "maybe".

As for algebra II the math teacher flat out rejected helping us at all saying that 20% of the work wasn't going to be in the textbook. When questioned about the 20% I asked if it was going to be in the way of handouts or class lectures or a combination of both. I was not given an answer other than "this is a new class that the state just changed the curriculum on and I don't even know what I have to teach yet." My reply was, (which I probably shouldn't have said, "And this is my problem how?". It's not my nor my child's fault that you are unprepared. To me it's unbelievable that a math class, which my daughter excels at could not be administered while she's out of school! It's math! It's not like it's something brand new that they just came up with. It's math! If I sound frustrated, I am.

We were then told they would move the Biology class and Algebra II class to the next semester and that we needed to pick two electives. Did they think to look up what electives would fit in those time slots? NO. Did they offer any constructive classes that would work towards graduation and college. NO. Finally I asked about Psychology or Sociology. I was told those classes had pre-req's of World History. What on Earth does World History have to do with Psychology? At this point the school psychologist stepped in for us and repeated that and asked for the pre-req to be waived. They weren't going to budge but she demanded.

I then asked my daughter if she'd be comfortable in taking French III (since she was an A student in the two previous classes and we both like the teacher a lot). She said that would be fine. We were met with some resistance due to French II having a "speaking" requirement but they were going to check on it.

So, one of the ladies that I didn't catch the name of dashed out the door to ask the teachers for Psychology and French III if they would accept my daughter into their classes. They both agreed!:D

Remarkably, both classes fit perfectly into the vacant slots on her schedule.

I'm waiting on the other unnamed lady to email me a copy of the 504 they're coming up with. They're using my template. All of them were very impressed with it (mostly because it's going to save them a ton of time).

So, for those of you who have a surgery scheduled while school is in session, be forewarned. Read up on the federal disability acts, state disability acts....especially those in regards to children with a chronic health condition, and lastly the school district's own policy. If you can throw this back at them to show you will not be walked all over and that you are being a strong advocate for your child you will make much better headway.

I probably came across as being an overbearing parent but that's my job!

Sherie
08-11-2010, 03:07 PM
I probably came across as being an overbearing parent but that's my job!

Absolutely, you have to be your dd's advocate. I was very firm about my expectations, but I didn't have any of the problems you describe. I suspect it may be because it was at the end of the semester, she'd already been in those classes and missed a total of 4 weeks of instruction. I found her teachers to be compassionate and understanding (with one exception) but the process for us was very smooth. I notified all her teachers right at the beginning of the semester and had complete cooperation from all of them. I'm very surprised at the attitude you're encountering. Is it that the school is small and not used to dealing with these kinds of issues?

I have a degree in psychology and never heard of history being a prereq. for any psych class. Sheena took an honors class in high school and never had any prereqs for it either. It almost sounds like they're making things up as they go! Sheena was also in honors biology that semester, her teacher never said a thing about making up labs. She just did the written work and tests and did fine. I know they can make exceptions for any given situation.

I found that school was one of the least of my worries when it was all said and done, and I'm certain it will all work out for your daughter too.

Take care.

Pooka1
08-11-2010, 03:20 PM
Wow very sorry how that went down. Remarkable.



I got the feeling from the get go that they were going to ask me to hold my daughter out of school this semester. As soon as they did make that recommendation, I shot it down with the requirements under federal law, state law and school district policy (thank god I had done my homework!).

What? How many weeks does the surgeon think she will miss??? As I mentioned, we have block scheduling here so one week is two weeks but nobody said one peep about dropping all the classes for the semester! To read that, it sounds like you are being filmed for Candid Camera.


The VP and math teacher then proceeded to tell me how my daughter could not take Biology nor Algebra II as part of the homework request program. Biology I could understand as there are labs that she would be missing. I did ask if she would be given the opportunity to take those labs once she returned to school and was given a "maybe".

My kid was in Honors Bio and she made up some of hte labs and just did the work for some others IIRC.


As for algebra II the math teacher flat out rejected helping us at all saying that 20% of the work wasn't going to be in the textbook. When questioned about the 20% I asked if it was going to be in the way of handouts or class lectures or a combination of both. I was not given an answer other than "this is a new class that the state just changed the curriculum on and I don't even know what I have to teach yet." My reply was, (which I probably shouldn't have said, "And this is my problem how?". It's not my nor my child's fault that you are unprepared. To me it's unbelievable that a math class, which my daughter excels at could not be administered while she's out of school! It's math! It's not like it's something brand new that they just came up with. It's math! If I sound frustrated, I am.


This is more Candid Camera fodder. My kid was in Geometry and just did the work at home with only a little bit of help.


Finally I asked about Psychology or Sociology. I was told those classes had pre-req's of World History. What on Earth does World History have to do with Psychology? At this point the school psychologist stepped in for us and repeated that and asked for the pre-req to be waived. They weren't going to budge but she demanded.

Okay here I have some vague recollection of this being true at our school but I think might it apply only for the honors Psych classes. Don't know if they offer Soc. I don't have a good grasp of the Social Sciences and Humanities and their internal machinations as taught at the high school level.


Remarkably, both classes fit perfectly into the vacant slots on her schedule.

Great win there. You saved the semester I think.


So, for those of you who have a surgery scheduled while school is in session, be forewarned. Read up on the federal disability acts, state disability acts....especially those in regards to children with a chronic health condition, and lastly the school district's own policy. If you can throw this back at them to show you will not be walked all over and that you are being a strong advocate for your child you will make much better headway.

My one kid was in 7th grade so that doesn't compare to the other who was in 9th for this surgery. But the one who was in 9th certainly didn't have to deal with any of that nonsense. I am very sorry you and your daughter do.


I probably came across as being an overbearing parent but that's my job!

Hey, you were hitting resistance and who else can advocate for her? You pulled it out so congratulations.

Pooka1
08-11-2010, 03:25 PM
Oh I forgot to mention that when the school immediately pulled my daughter from PE when I told them of her upcoming surgery, they just placed her in Creative Writing without asking. She was okay with that. It may have even been on her electives list, I don't know.

So nobody discussed that with me though they may have asked her if she wanted that class.

Gryffindor
08-11-2010, 05:06 PM
Pooka: Her surgeon has down that she'll miss between 6-8 weeks of school. Our school is also on the block scheduling.

The Biology class I could understand due to the supposed large amount of lab work. When she does take this class next semester, if I find out there's very little lab involved, I'm going to be very upset.

I'm still upset about the Algebra II class. Cheyenne flew through Geometry with an A (along with every other math class she's taken since entering school).
This alone is going to limit the amount of math she can take prior to entering college.

My senior year of HS we had a combined class of US History for the 1st semester and then our choice of Psychology or Sociology for 2nd semester. But that was back in the days when you had 6 classes a semester and classes lasted an entire year, not one semester. Their scheduling is just like college. She is taking World History right now, so she's fulfilling the pre-req at the same time that she's taking Psychology.

Lol about the Creative Writing class. That was mentioned as a possible elective. Cheyenne's weakest classes are her English classes so she wasn't thrilled about this one at all.

Sherie: Our school district is one of the largest ones in AZ. I think the resistance was primarily due to it being the start of the year. And, everyone in the meeting kept blaming the state's cutbacks as part of the reason. I think AZ is near dead last when it comes to education spending.

At least Chey is happy with her schedule. Not so happy about the math class but happy she won't have to deal with that teacher. She told me from the first day of school that she didn't really care for that teacher.

I did get a phone call today from her English teacher. He's great and has his own website he's set up to help his students whenever they need assistance. Chey really loves this guy.

We already know her French III (honors) teacher from last year and he knows of her condition and has been a great teacher to work with.

One very good thing about the meeting that Chey wanted confirmed is that she's on track to graduate a full year early. Even with this set back on her schedule, she's still on her way. She'll be entering college at 16!:eek:

Pooka1
08-11-2010, 08:13 PM
Lol about the Creative Writing class. That was mentioned as a possible elective.

LOL. I think some of these psychologists or sociologists should study why there always seem to be empty seats in creative writing classes for emergency transfers and not in honors science electives. ;)


I think AZ is near dead last when it comes to education spending.

Not on a per capita basis I don't think. If per capita spending is related to performance then MS, LA, and FL are the lowest or among the lowest. I may look that up for my own amazement at some point. I'm guessing IA and WI are among the highest spenders on education.


At least Chey is happy with her schedule.

Thanks to you. :)


One very good thing about the meeting that Chey wanted confirmed is that she's on track to graduate a full year early. Even with this set back on her schedule, she's still on her way. She'll be entering college at 16!:eek:

Can I just ask why she wants to graduate a year early?

My kids know that option is available both because they are already ahead in some subjects and could have easily gotten ahead in the others. But they have made no noises about graduating early. I guess they are in no rush and this school offers so many honors level science AP electives that I think it might be a good strategy to take those.

There may be more than one right answer here, too. :)

Gryffindor
08-11-2010, 09:08 PM
Pooka:

I've never really asked her why she wants out so early but if I had to guess, I'd say boredom. Neither of my kids ever really connected with this school. They're not into any extracurricular activities that would help form a bond with the school.

Courses are limited here. If you want to take anything advanced they tell the kids to enroll at the local junior college. That way they get the college credit along with the HS elective credit. The only bad part is that you have to pay for each class, the associated books and misc fees.

Until she's old enough to drive, this won't even be an option for us.

leahdragonfly
08-12-2010, 08:51 AM
Hi Gryffindor,

I am SO sorry to hear how difficult the school meeting was---but good for you for pushing through and getting what you needed for your daughter. She is very lucky to have a Mom who does such a great job advocating for her.

I know how difficult these last weeks and days before surgery are--we were just in your position in May, and I clearly remember my distress and anxiety. Please know that you have lots of friends here pulling for you and Cheyenne, and I am confident she will be in the very best of hands at Shriners.

Take care,

Fingers Crossed
08-12-2010, 09:28 AM
I've been thinking about you and just logged in this morning to see with disbelief all that you are going through to work out the school issues for Cheyenne. I guess if we want to look on the bright side, this has certainly been a distraction in the countdown to surgery. :rolleyes:

I wish I had some awesome words of wisdom for you. But I think/pray/hope that you will be as amazed as I have been at just how well most kids do with this surgery.

Jenna has healed amazingly. School started today and I almost wept tears of joy watching her walk in (with her new and improved straight back) laughing and having a good time with all her friends. You WILL get to the other side on this, too. And it feels great!

Gryffindor
08-16-2010, 08:51 PM
I received the completed 504 plan from the school today. I'm posting it here so that anyone who may need one will have access to one:



XXXXXXXX UNIFIED SCHOOL DISTRICT #XX

SECTION 504 STUDENT ACCOMMODATION PLAN


Student Name: ___________________ School: ____________________
Student ID#: _______DOB: _______ Age: ____ Grade: ____ Year: ______
Date 504 Plan Initiated: ___________ Date 504 Plan will be Reviewed: ______

Disability Identified on the Section 504 Evaluation Report: Severe scoliosis requiring corrective surgery.

Accommodation(s).................................. ............Person Responsible
Set of textbooks for home use and set of books in classroom. Teacher/Student/Bookstore

Student will be allowed to leave class 5 minutes early for Fall 2010 semester following corrective surgery to avoid being bumped in the halls. Teacher/Student

Student will be permitted to go to nurse at anytime for pain management. Teacher/Student/Nurse

Attendance will be notified that Cheyenne will be exempt from school truancy procedures initiated by excessive absences due to medical condition. Attendance/Administration/Counselor

Teachers will provide absent work for student (ahead of time when available). Teachers may give work directly to Cheyenne in class before her surgery, leave at front desk for parent pick-up, or send via e-mail to her mother. Teacher/Student
In the even that student is not able to take tests/assessments while out on medical leave, she will be able to make up assessments upon her return without being penalized. When appropriate and available, teacher may give alternative assessment and/or administer tests via e-mail. Teacher/Student

No penalty on late work for Fall 2010 semester. Teacher/Student

E-mail is the preferred method of communication for all parties for distribution and collection of work, explanation of material missed, and Q & A between student and teacher. All e-mail addresses identified below: Teacher/Student/Parent/Counselor

Describe location of services, if other than the classroom setting and the reason(s) necessary: BLANK

Other relevant information: BLANK

Parents of a child with a 504 Accommodation Plan have protection under the procedural safeguards.Parents Rights and Safeguards given to parent/guardian. _______ (Parent/guardian initials)

My signature indicates that I have been informed and received notice of this Accommodation Plan and further acknowledge I am familiar with my responsibilities pursuant to Section 504 of the Rehabilitation Act of 1973.

TEAM OF EVALUATORS:.......Signature..................Title/e-mail:
My Name.................._____________________.....Pa rent
Asst Principal's Name _____________________.....Asst Principal
School Psychologist Name _________________.....School Psychologist
Student's Counselor Name _________________.....Student's Counselor
504 Coordinator Name _____________________.....504 Coordinator
Psy/Soc Teacher Name ____________________......Psy/Soc Teacher
French III Teacher Name __________________......French III Teacher
World History Teacher Name ________________.....World History Teacher
English II Teacher Name __________________.....English II Teacher


PAGE 2

PARENT’S RIGHTS AND SAFEGUARDS UNDER SECTION 504

As a parent, you have the right to:

1. Have your child take part in and receive benefits from public education programs without discrimination based on a disability.

2. Have the District advise you as to your rights under federal law.

3. Receive notice with respect to identification, evaluation, or placement of your child.

4. Have your child receive a free appropriate public education. This includes the right to be educated with non-disabled students to the maximum extent appropriate. It also includes the right to have the District make reasonable accommodations to allow your child an equal opportunity to participate in school and school-related activities.

5. Have your child educated in facilities and receive services comparable to those provided students without disabilities.

6. Have eligibility and educational placement decisions made based upon a variety of information sources, and by individuals who know the student, the evaluation data, and placement options.

7. Have transportation provided to a school placement setting at no greater cost to you than would be incurred if the student were placed in a program operated by the District.

8. Give your child an equal opportunity to participate in nonacademic and extracurricular activities offered by the District through the provision of reasonable accommodations.

9. Examine all relevant records relating to decisions regarding your child's identification, evaluation, educational program, and placement.

10. Obtain copies of educational records at a reasonable cost unless the fee would effectively deny you access to the records.

11. Receive a response from the District to reasonable requests for explanations and interpretations of your child's records.

12. Request amendment of your child’s educational records if there is reasonable cause to believe that they are inaccurate, misleading or otherwise in violation of the privacy rights of your child. If the District refuses this request, it shall notify you within a reasonable time, and advise you of the right to a hearing.

13. Request an impartial due process hearing related to decisions regarding your child’s identification, evaluation, and educational placement. You and your child may take part in the hearing and have an attorney represent you at your own cost.

14. File a complaint with the District when you believe your child’s rights have been violated. A complaint may be filed by completing the Section 504 Complaint Form and submitting it to your school principal or to: District 504 Compliance Officer, SCHOOL DISTRICT NAME, ADDRESS.

15. The Office of Civil Rights of the U.S. Department of Education also enforces the requirements of Section 504. The address of the regional office that includes Arizona is: Office for Civil Rights, 1244 Speer Blvd. Suite 300, Denver, CO 80204-3582.



The formatting is obviously off due to this being a website. I hope this helps someone else out in the future. Granted, not all school districts are going to use this same form, but it's a good place to start at least.

Gryffindor
08-20-2010, 04:13 PM
We're definitely stressed. Hubby has been tossing his cookies and not sleeping very well. I'm ok. Just a little nervous about the plane ride. I haven't flown since pre-911 so I'm not really sure of what to expect during check-in. Cheyenne is actually excited about the whole thing. This will be her very first plane ride.

To add to our stress levels:

We had to change house sitters at the last minute.

Today was to be Cheyenne's last day of school prior to leaving for surgery. She was going to meet with all of her teachers to pick up books and assignments for the next few weeks. Well, at 9 a.m. I get a text from her stating the fire alarm was going off at her school and that they were evacuating. The teachers said it wasn't a drill. Then they moved the kids across the street to a church, but they left them outside (it's 108 here today!). The police cars kept coming, and from more than just our city. Then the fire dept (also from more than just our city). Then the SWAT team!:eek:

Turns out some idiot called in a bomb threat. The school handled the whole thing really poorly. They weren't letting any of the kids go home.....no matter what! They had no shelter from the high heat nor any water for them either.:mad:

I called my hubby and let him know what was going on and of course, having the past couple of nights he's had, he decided to head towards home so we could pick Cheyenne up.

Chey had told us where the school was asking parents to drop off water for the kids and we met her there with a case of water for any kids that needed it.

We spoke with her Psychology teacher about why she couldn't stay out in the sun, in the heat, due to her upcoming surgery and were able to get them to finally release her to us. The last thing we needed was a sunburned, dehydrated kid going into spinal surgery!

She's heading back to the school with her sister now to try to get her binder she left in the classroom when they were told to evacuate, meet with her 2 other teachers she didn't get to see this morning, and get her books from the bookstore.

Hopefully this will be the last of the drama for a while!:)

Sherie
08-20-2010, 08:50 PM
I suggest slip on shoes, it's such a hassle to untie and tie your shoes. Don't pack any liquids in your purse or carry on (hand sanitizer is something I always forget). I brought anti-bacterial wipes to wipe down our trays and armrest, you don't want anyone to get sick before surgery.

Good luck, wishing Cheyenne a very uneventful surgery and recovery.

Gryffindor
08-21-2010, 09:57 AM
Sherie: Thank you for your reply. I didn't even think to get hand sanitizer for the plane! I'll pick up some wipes today while we're out doing our last minute running around.

Cheyenne has to go to school this morning to finish taking the test they were in the middle of when the school was evacuated. She was able to retrieve her binder and books late yesterday. I'm trying to get her to use today and tomorrow to complete as much homework as humanly possible so we'll have something to provide her teachers with.

I'm hopeful she'll bounce back fairly quick after the surgery. It's the first three days that seem like they're the worst from reading other people's posts.

I called RMDH yesterday morning to confirm they had received the referral from Shriners. They had. Since they won't confirm your reservation until the day prior to your arrival, I asked if it looked promising for us to obtain a room there. They said "Yes".

This is GREAT news as it's going to save a lot of money for us. Plus, they're within walking distance of the hospital.

I still have to call in a few minutes to cement the reservation but I don't think it's going to be a problem.

ddb
08-22-2010, 01:34 PM
Please pass on to Cheyenne thoughts from us for a successful surgery! For you and your husband my thoughts and prayers are with you and your family during this most difficult part. Soon you all will be on the healing side :)

Oh and safe travels too.

Dee

Gryffindor
08-22-2010, 05:00 PM
We're here safe in SLC. The plane ride was uneventful. In fact, our flight was actually a lot shorter than what we originally thought.

SLC is a beautiful city. So much prettier than metro PHX.

I love Queen Anne Victorians and we must have passed at least a dozen on our shuttle ride to the hospital.

The hospital is beautiful although it's round scheme gets me all turned around. The front door is a HUGE revolving type door. I'll have to get some photos of it for anyone to appreciate just how very neat this thing is.

Cheyenne's room is very nice and we have a great view of downtown SLC.

Two nurses came in and gave us the rundown of what to expect for the next 10 days. Chey is scheduled for surgery at 8 a.m. tomorrow morning.

The only thing they're concerned about is she's a little dehydrated. They were having trouble drawing blood because of it.

On the very good news front, they no longer insert drainage tubes in the incision! Our nurse said they quit doing this a couple of months ago. For what reason she was unsure.

They did go over how constipation is an issue for nearly every fusion patient and their plans to help combat it.

Unfortunately, we do not have access to wireless internet here so Chey can't use her netbook.:( I'm using a very slooooowww computer in the parent's lounge at the moment.

I'll post more tomorrow after the surgery.

Pooka1
08-22-2010, 06:21 PM
Good luck to your daughter and you, Gryffindor. I wish you smooth sailing and a quick recovery.

Fingers Crossed
08-23-2010, 09:20 AM
Didn't have a chance to post on all the excitement at Cheyenne's school on Friday. Wow. Again, though, a "nice" distraction (ha):rolleyes:

Anyway, woke up this morning thinking about all of you. Today will probably go very slowly, as you wait and wait. But soon Cheyenne will be through this and on to the healing phase.

I agree that SLC is a beautiful city. Have not spent much time at all there, but have flown through several times. Lots of nice people there, too, and that is what you need during the long stay in the hospital.

Good luck! Post an update when you can!

Best -

CamsMomKelly
08-23-2010, 06:09 PM
I hope everything went well today :)

Chris43
08-23-2010, 07:12 PM
Hi Gryffindor,
I kept thinking of you and your daughter all day today. I kept hoping and praying that all was going well during the surgery. Good luck with the recovery. I know it will be a long couple of months for you. Wishing you the best!
Chris

Gryffindor
08-24-2010, 08:13 PM
The surgery took 6 hours. Her surgeon said he was able to get her very straight. He did mention something about one of her lower vertebrae but said that he thought it was more likely do to the way she was laying. I'm still not sure. I'm giving him a couple of days before I sit down with him to get the specifics as the entire hospital has been very busy with surgeries.

Chey had the entire CCU to herself last night. And, she had 3 nurses to watch over her.

The anethesia (sorry, can't spell right now), did make her sick and she did have to vomit a couple of times. The first time they went to roll her over onto her side she broke into tears due to the pain. They're rotating her every 2 hours (right, center, left). She also has to use the breathing thing they blow into to help with their lung capacity and to help ward away pneumonia every 2 hours.

Today has been cranky day for all of us. She's not happy. I'm not happy and her father isn't happy. Lack of sleep will do that. Her dad has spent the last couple of nights at RMD on a nice comfy full sized bed. I've been stuck on what I'm now calling the "torture bed" since our arrival on Sunday. Whomever came up with the idea of making a chair that pulls out into a bed should be drawn and quartered!

Chey wasn't happy that they won't let her have her cell while she's in the CCU and decided that it was somehow my fault. But, thanks to everyone's posts here I knew to expect today to be rough.

The physical therapist came in twice and sat her up. The second time she was going to attempt standing but decided not to when she became very dizzy.

They have her on morphine for the pain. They also had 2 separate epidurals running all day yesterday and disconnected them this morning.

Earlier today she was starting to run a mild fever. The nurse said it was normal and was likely due to her laying down for so long and that it should not be because of the surgery/incision.

Right before I had to leave on the shuttle to RMD I checked in on her and her fever had risen to 102. They were giving her Tylenol and antibiotics in pill form. She's been able to drink clear fluids since this afternoon. They have been checking for stomach sounds and all sounds good according to the nurses. They said one of the milestones is being able to pass gas, which she has.

Hubby will be staying with her tonight to give me a break.

One question: I don't think I've read any other posts that mentioned a fever as being normal after surgery. Is this normal, especially one this high?

CamsMomKelly
08-24-2010, 08:40 PM
It sounds like she is doing pretty good :)
I have stayed with my son thru all 3 of his previous surgeries on those pull out chairs LOL, I have found if u can get some extra blankets fold them up and put on top of the hard cushion, helps alot~
are they trying to get her to stand in the CCU??? is that like ICU? I didnt know they would do that until they got to there regular rooms?
My son did run fevers on two of his surgeries , scary but I was told that was normal too...

Pooka1
08-24-2010, 08:47 PM
One question: I don't think I've read any other posts that mentioned a fever as being normal after surgery. Is this normal, especially one this high?

Great that you are on the other side! Congratulations!

I'm trying to remember but I think both my kids ran a fever. I don't remember how high. I think it is the morphine? Anyway, I doubt any surgical infection would manifest this early so you probably should not worry about that. Linda might know.

My kids were told blowing in the spirometer would lower the fever and it did as I recall. It's hard to remember so I hope this is right. It sounds familiar anyway. :)

Good luck.

ddb
08-24-2010, 09:08 PM
My DD did have a fever - I too can't remember how high it went, but was told it was normal for that to happen.

So glad to hear all went well with surgery. I'll be thinking of you all - these first few days are hard. Getting some rest if you can will help.

Wish your DD a speedy recovery from us.

Dee

Sherie
08-24-2010, 09:54 PM
Good to hear from you! I'm glad Chey made it through the surgery ok.

Sheena had a fever, I think it's completely normal, don't worry it will pass.

Get a good nights rest.:)

Fingers Crossed
08-25-2010, 08:27 AM
I was SO GLAD to log in and see that everything went well with Cheyenne's surgery. My daughter ran a slight fever and was just VERY WARM the whole time she was in the hospital. She wanted the air conditioning CRANKED and I was glad I'd thought to bring some long-sleeved shirts, because she was freezing me out, practically (and I'm so sorry I forgot to mention this before, but hopefully you have some clothes to layer in case Cheyenne does this too?)

Hope you are feeling a little better today after a decent night's sleep. Don't forget to eat, drink to stay hydrated and take care of you, too. You are in for a long couple of weeks. Its almost like having a baby again, especially after you get home -- waking around the clock to give meds, etc. So rest up while you can -- take naps when she does, if at all possible . . . just like we were all supposed to do when our kids were babies.

Hang in there!

Pooka1
08-25-2010, 09:18 AM
I was SO GLAD to log in and see that everything went well with Cheyenne's surgery. My daughter ran a slight fever and was just VERY WARM the whole time she was in the hospital. She wanted the air conditioning CRANKED and I was glad I'd thought to bring some long-sleeved shirts, because she was freezing me out, practically (and I'm so sorry I forgot to mention this before, but hopefully you have some clothes to layer in case Cheyenne does this too?)


YES! Same here. I was wearing a jacket for the last several days with my second kid. I can't remember how it was with the first.... too long ago.

Gryffindor
08-25-2010, 10:07 AM
The CCU is the Critical Care Unit. There's now 2 other patients in there with her today. Another will be joining later this afternoon.

Surprisingly, it's really not cold in here. It's strange because the temp actually dropped down to 76 here (was 110 back home). But, it felt much warmer but less humid. My internal clock is completely off. It's an hour earlier here but I keep waking up at 5 a.m., which whould be 4 a.m. at home and something I never do. I'm usually up around 5:30-6.

Cheyenne's having a rough day today. Her fever is gone but she's having some pretty bad nausea. I thought they had taken her off of both epidurals and the morphine but they haven't. They're simply giving her less. But, they've started giving her Oxycontin by mouth. She gets it twice a day.

Right before I left her room her nurse gave her an injection through her IV of the equivalent of Valium so she's resting comfortably.

In about an hour the physical therapist is supposed to come in and see if they can get her to stand up. (Yes, they are doing this in the CCU).

She should be back in her patient room in about 2 days.

I'm going to go to medical records in a bit and see if I can get a disc of her pre-surgery x-rays along with the reports. I still need to spend some time with her surgeon to get more detailed info on exactly where they fused.

The nurses let me take some pics of her back yesterday while she was sitting up. Her hips and shoulders are now aligned and her rib hump is gone! Chey was very happy to see the pics.

I'll post more later on now that I know where I can find a computer that I can easily gain access to.

A Little Off Topic: When I first signed on to this computer and went to go to the forums the "Net Nanny" program blocked me saying it was due to "drug references". Lol.:eek:

Gryffindor
08-25-2010, 01:42 PM
Finally was able to obtain her medical records through yesterday.

Here's the Operative Report: (I'm abbreviating where possible as I don't like this keyboard).:)

Indications for Procecure: Painful left lumbar curve measuring approx 50 degrees. MRI and CT scans done previously did not show any interaspinal pathology. She had a prominent right illac crest with a slight trunk shift to the left. Her shoulders were fairly level and she did have a right waist crease. It was felt therefore that she could benefit from the above-mentioned procedure.

Description of Procedure (I'm only giving highlights for now):
.....We started affixing our pedicle screws starting at L3 distally and moving proximally. At L1, L2 and L3 we placed 40 mm 5.5 screws with a polly screw at L3. AT T12 we placed 5.5 screws and T11 6.5 screws. At T10 on the right we placed a 5.5 screw and also at T8 and T6 on the right. On the left side we placed 5.5 screws at T9, T7 and T5. The screws were inserted in the usual fashion for the anatomical landmarks and positioning small k-wires for localization followed by using the pedicle finder, pedicle probe and tap to determine the appropriate length and size. At L2, initially clinically it looked like the screw on the right was going a little too medial and we reoriented to go a little more lateral but I think at this point in time there was a break in the lateral cortex. We then placed the L2 screw so that the head of the screw would line up nicely witn L1 and L3. We verified the position of the screws on AP and lateral views and all screws appeared to be in good position. On one of the AP views the right T10 screw appeared a little bit low but it was removed and probed carefully and felt to be in good position and reinserted.

Gryffindor
08-25-2010, 01:55 PM
The facet joints were removed from distal to proximal apprx 3 at a time as we were moving up th espine with our construct. We then measured out the left-sided rod and contured it to a normal lumbar and throacic kyphosis and we used a stiff rod. The rod was then inserted and rotated 90 degrees which gave us essentially almost complete correction of the left lumbar scoliosis and excellent correction of the right compensatory thoracic scoliosis. We then inserted the right-sided rod which was contured in lumbar lordosis and thoracic kyphosis. We then took a long PA x-ray of the spine and it appeared that the spine was well balanced although the L3-L4 disk space semed to be opening up on the left side which was opposite to what it was doing preoperatively and this seemed to be tilting her to the right a little bit. We loosened the L3 screw on the right side and distracted betweekn L2-L3 slightly and we felt when she stood up that her righting reflex would bring her body over her pelvis and close down the L3-L4 disk space on the left side.....

It goes on to talk about inserting the epidural and how they closed her up.

She did have to have a transfusion of 1 unit of blood due to blood loss.

So it looks her fusion was T4-L3. The guess back in march was T 3-4 to L 3-4.

So, I'm a little concerned about the following sentences in this report:


At L2, initially clinically it looked like the screw on the right was going a little too medial and we reoriented to go a little more lateral but I think at this point in time there was a break in the lateral cortex.


although the L3-L4 disk space semed to be opening up on the left side which was opposite to what it was doing preoperatively and this seemed to be tilting her to the right a little bit. We loosened the L3 screw on the right side and distracted betweekn L2-L3 slightly and we felt when she stood up that her righting reflex would bring her body over her pelvis and close down the L3-L4 disk space on the left side.....

Can someone help explain these to me?

ddb
08-25-2010, 03:04 PM
I think the surgeon will be best to explain your last question, but I'll tell you that my DD still has a little curve below her fusion. Our Dr did not want to fusion her lower then L-3 because she is young and it would really restrict motion. He said that she may resolve that curve more now that the above is fused. It's hardly noticable to most, but since I've been studying her x-rays for years I noticed it.

I'm so glad your all on this side. First few days after are hardest - they really do move them fast. DD was sitting up in a chair in PICU and she was in there less then 24 hrs.

The healing has started - good luck to you all for continued healing :)

Dee

Gryffindor
08-26-2010, 09:54 AM
Cheyenne had a pretty rough night last night. They removed the ketamine IV and now have her on morphine (without the button for her to push), Oxycontin every 12 hours, Oxycodone and Valium.

Those of you that posted that your kids were very grumpy (putting it kindly), weren't kidding. Chey kept kicking hubby and I out of the CCU because she'd get upset with us. Apparently we "weren't helping her correctly". :confused:

Today she will be getting out of the CCU and back into her hospital room. She's really looking forward to getting out of there as it's packed with kids and staff.

Her nausea has subsided and she's been able to take pills and drink some sprite. They still haven't started her on soft solids yet.

They're getting ready to give her an enema right now. Her tummy is pretty distended. It's really noticeable considering how tiny she is. One nurse said she was going to feel much better after they do this.

Last night we received an automated message from her school's attendance office saying she's been absent. No kidding!:mad: At the 504 meeting I made it abundantly clear that we didn't want to hear a peep out of the attendance office and they promised we wouldn't. Yet, here we are again.

I called them again this morning and luckily did not get the rude clerk that runs the department but an assistant who was actually pretty nice. She apologized but sounded like this was the first she'd heard of our daughter being out of school.

I then called the school psychologist, the only one who was on our side during the 504 meeting, and let her know that her and my daughter's counselor were going to need to go into the Attendance office and remind them of what's going on.

I'll post more later today. I hope all of you are doing well and I can't tell you how appreciative I am to have found these forums. Without all of the information and advice everyone has provided, I'd be rather lost and completely having a nervous breakdown. Instead, because I knew/know what to expect, it's made this whole process much easier.

Pooka1
08-26-2010, 10:22 AM
Those of you that posted that your kids were very grumpy (putting it kindly), weren't kidding. Chey kept kicking hubby and I out of the CCU because she'd get upset with us. Apparently we "weren't helping her correctly". :confused:

Going through this with two kids, I have come to learn that sometimes there is just no right answer or I am incapabe of finding it - one or the other. While this was certainly an issue in the hospital, I would say it crescendoed after they left the hospital and higher drug dosages for home and the lower drug dosages.

The important thing is to never show fear and hold your ground. :eek: :)

For my kids, it was a matter of only a few weeks before they turned the corner and became themselves again. That said, those few weeks were draining on everyone.

You will be a star. Good luck. :)

CamsMomKelly
08-26-2010, 10:31 AM
ha ha I know how those crabby kids go, my son wasnt kicking me out he was chewing me out for "not doing things right" I would leave the room on my own to keep from exploding , when I would come back in he would be like where did you go! LOL IM sure it will get better soon and it will be nicer in a regular room...hang in there
DID they get her up walking? how did that go? Is her fever gone?

Sherie
08-26-2010, 10:54 AM
Sheena was only in ICU one night. We were glad, there was no rest in there.

Her tummy was very distended too, looked like she was 6 months pregnant. They never did an enema but tried to give her a liquid laxative that she promptly threw up which caused her to wrench her back. That was bad. I think an enema is probably a better solution. And the laxative they prescribe for home use, Senekot, didn't seem to do any good. I don't remember exactly what I ended up doing but I saw someone else mention using Miralax OTC and had much better success.

Concerning the school, several weeks after we were home, I received a truancy notice from the school's police dept. I was so upset, after all the notifications and meetings, I couldn't believe they still had marked her absent. I cleared it up quickly but you just have to wonder:confused:

Fingers Crossed
08-26-2010, 11:15 AM
Aw, the memories!:rolleyes:

My daughter wasn't crabby, per se, but she did have a day in the hospital when she was really down and crying (very unusual behavior for her; she is pretty stoic) about "why did we do this, it can't be undone" etc., etc. I posted here that night, I became so distraught about it.

She couldn't produce a BM (no distended stomach, though) and had to have an enema on day 5 at the hospital. She was absolutely mortified about it, and asked the nurse if she could refuse the enema as she believed it was a violation of her rights! Thank God for pediatric nurses who also sometimes double as adolescent psychologists, as she somehow convinced my daughter that it would all be fine.

I think all the narcotics are definitely a culprit in all this -- the changes in personality and of course the problems with digestion/bms.

We noticed that "turning of the corner" in just a few weeks and it did coincide with the weaning off narcotics. Of course anyone who goes through this major surgery needs the narcotics, but it is also a relief to not need them anymore.

Good job Gryffindor! You are a great mom and advocate for Cheyenne, and that is just what she needs now!

Gryffindor
08-26-2010, 05:33 PM
Going through this with two kids, I have come to learn that sometimes there is just no right answer or I am incapabe of finding it - one or the other. While this was certainly an issue in the hospital, I would say it crescendoed after they left the hospital and higher drug dosages for home and the lower drug dosages.

The important thing is to never show fear and hold your ground. :eek: :)


I've got two kids right now. One is Cheyenne. The other is my hubby. Both are driving me insane!!!!!

I hear you about the answer thing. She's doing the "opposite" thing right now with me. She'll ask for something and if I don't jump then she suddenly doesn't want it.

After reading how you said this actually will get worse, I think my night is now shot. lol.

I'm fortunate that every time that I get frustrated that I can call my mom and she patiently lets me vent to her without rendering judgment.

I've decided that Chey is pushing our boundaries to see what she can get away with and that I'm putting an end to it now. I know she feels horrible but if I don't start putting the brakes on this it's going to get worse. I do feel I'm entitled to tell her "no" when it's something frivilous. (for example, she wanted the tv off because it was making "too much noise". She just spent the past few nights in an overcrowded CCU that was 10x louder than the softest setting on the TV. When I go back up to the room the tv goes back on).



DID they get her up walking? how did that go? Is her fever gone?

Yes, this morning they had her walk across the CCU. She did well. The fever is back but it's much lower than it was before.



Her tummy was very distended too, looked like she was 6 months pregnant. They never did an enema but tried to give her a liquid laxative that she promptly threw up which caused her to wrench her back.

Concerning the school, several weeks after we were home, I received a truancy notice from the school's police dept. I was so upset, after all the notifications and meetings, I couldn't believe they still had marked her absent. I cleared it up quickly but you just have to wonder:confused:

Chey's tummy looked exactly the same. In fact when I was speaking with one of her Dr's about it I used that exact same terminology. lol. The Dr's said she looked more like she was only 3 months along.:D

The enema worked great. They took an x-ray earlier today to rule out any other complications as she was having very sharp pains in her stomach. The x-ray showed that her bowels were full.

According to her nurse she got a lot of it out. They had been giving her stool softener ever since she got out of surgery so that definitely helped too.

You'd think after being that uncomfortable that she'd say she felt better. Nope. I KNOW she has to feel better but is doing that "opposite" thing. Arrrrggghhh!:mad:

About school: After telling my mom about their call she actually called the school herself and read them the riot act. My mom is 80 and gets rather worked up when anyone messes with her kids or grandkids.

I was hoping for a return call from either the school psychologist or my daughter's guidance counselor after leaving a message for them but didn't get one yet.

Sherie
08-27-2010, 07:00 AM
I guess your doctor has never been pregnant then, you're hardly showing at 3 months. :) I'm glad the enema worked, I can't imagine how miserable that must be.

Hope Chey and you have a better day. You just have to take it one day at a time.

Gryffindor
08-27-2010, 09:38 AM
Last night was by far the worst yet. Hubby went back down to RMD for the night. At 11 Chey & I went to sleep. She was up every 30 min complaining of pain. Then she was complaining that I wasn't waking up fast enough.

She REFUSED to hit any of the 3 nurse buttons on her bed that are easily within her reach. She wanted me to do all of the talking.

By 2:30 after going through this for several hours I finally gave up, got up and got a big cup of coffee and called her dad just to let off some steam.

He shows up around 3:30 and then starts arguing with me about why he's up there, even though I told him to stay put. He then wants me to try to catch a cab at 3:30 in the morning to go to RMD. I said I was staying put, but if he could watch her and let me sleep that would be great. It seems like as soon as both of us were in the room with her that she calmed down. She can't play the "he said", "she said" game when we're both there at the same time.

She's having a lot of pain in her right shoulder. This is the shoulder where the muscle would have been shorter due to balance correction. Her pre-op photos clearly show the left shoulderblade as being higher and sticking out much more than the right. I'm thinking it's because that muscle has more tension on it is why she's feeling more pain in that area. She's having similar pain in her hips (likely for the same reason).

The night before last she was complaining of her urinary catheter burning. Last night she was complaining of feeling like she had to go but couldn't. If that were me I'd know I had a urinary tract infection. They removed the catheter this morning and took a sample for the lab to look at. They have to wait for a Dr. to sign off on it first though.

They've cancelled all PT and have her on strict bed rest at this point.:( They're going to be sending in a pain management specialist to work with her today to find out what's going on. The only conradication to this is that they removed her urinary catheter so she's going to HAVE to get out of bed to use the bathroom. She hates the bed pan as it really hurts her lower back.

She's starting to shut down to the staff now and not reply to their questions.

I'm at the point of asking for a psychologist/psychiatrist to come in and speak with her.

As for me, I'm falling apart. I have allergies and they kicked in pretty bad last night but I couldn't take my meds because they typically make me pretty drowsy. My on again, off again eczema is going into full swing due to the stress and all of the hand sanitizer. My skin absolutely hates alcohol and will react every time it comes in contact with it. I didn't eat lunch nor dinner yesterday because my stomach has been acting up since we arrived here. And, I just colored my hair right before we left and I already have a ton of grey showing. I feel 80 but I'm only 43.:o

To add to my stress, ever since our arrival last Sunday we've had:
1. A freak dust storm that knocked out power for over 6 hours.
2. The AC went out in our area of the hospital and it's been in the mid to high 90's here. I went to bed with shorts, a tank top, my hair wet and a wet washcloth on my forehead. I woke up at 3 a frozen popsicle as the AC had come back on.
3. Last night, right after they gave Chey her enema, (and she kicked me out of the room), the fire alarm went off. I was on my cell with my older daughter and she was freaking out on me asking what was going on. Turns out their fire protection company was testing everything but forgot to tell anyone.

Our departure date may change. The staff has gone from saying "when you leave on Tuesday" to "IF you leave on Tuesday".

If they sent us home now I don't know how I'd handle her. I don't know the proper way to rotate her or to get her out of bed. If this continues to stay this bad I'm going to need a home nurse to help because there's no way I could do this on my own.

Thanks for putting up with my venting guys. :)

Fingers Crossed
08-27-2010, 01:44 PM
Oh, I am so sorry about all this. Wanted to share that my daughter had a very rough day in the hospital at day 4. She also had what appeared to be a UTI, but was not(sample tested negative.) Apparently, the catheter caused some irritation that made her feel like she needed to go to the bathroom really often.

And all that getting up to go to the bathroom made her sore, I think, and she also complained of very localized, intense pain (her right shoulder). She was also very vocal about not wanting too much noise . . .

I think the valium helped most, as this intense pain was perhaps muscle spasm pain, or at least the nurses thought this was what was going on. I hope the pain management specialist is able to help her work through this!

Guess I don't have any great words of wisdom, but I think you will be amazed at how much better things will get in a very short time.

Pooka1
08-27-2010, 02:07 PM
Thanks for putting up with my venting guys. :)

Hey! Don't worry about this. These posts hopefully not only help you but will help others who come along later.

I am very sorry you are having it so rough. This is a tough road but luckily it usually isn't a long one. The pain issue is most concerning because getting and keeping the pain under control is really the game at this point and into the future. The times the pain got away from us were the very low points. But I think kids are so zonked that they really don't remember... to hear my one kid talk, it wasn't really a big deal. But I was there and it was a big deal... she just doesn't remember. And I wish I could forget. The other kid remembers but was saying it was worth it before she left the hospital. Of course she went from highly rotated to almost no rotation so I can understand her sentiment.

You have to be kind to yourself. You have to stand your ground so that you can get through this and still be in a position to help her. This is a huge thing and kids have to process it. They are going to lash out in response to both the pain and just the situation in general. Keep your eyes on the prize. That's my advice for what it is worth.

Sherie
08-27-2010, 07:51 PM
Sorry to hear about the rough time, but it's probably not that unusual (minus the dust storms, power outages and fire alarms, that's unbelievable!) Sheena had a very difficult time in the hospital. You really have to take it one day, one hour, one moment at a time. Some days may be worse than the one before but it will eventually get better. It seems like everyone has some kind of difficulties.

You also have to keep in mind that the narcotics are affecting Chey's judgement and emotional state. Sheena wasn't herself either. In fact, she took herself off the narcotics because she hated the way they made her feel.

The shoulder pains may linger for a while, it seems to be pretty common on this forum. Sheena also had this shoulder pain off and on the first year for no apparent reason. She also had pain in her hip but it's where the drainage tubes came out, they think she had a hematoma at the site that aggravated a nerve. I think you said Chey would not have drainage tubes, it's probably exactly what you're saying.

Just hang in there, it will get better. For us, just being home and out of the hospital was very good medicine. I was a little scared to be home and a 2 hour flight away from the hospital and doctor but it was so much better.

CamsMomKelly
08-28-2010, 08:19 PM
I hope things are going better for all of you. :).. how is recovery going?

Chris43
08-28-2010, 10:38 PM
Hi Gryffindor,
I've been following your posts. I wish things were going easier for you and your daughter. I've been thinking of you each day and keeping you in my prayers. I hope she will be better soon. Hang in there!
Chris

Gryffindor
08-29-2010, 12:13 AM
Hey everyone!

Things are still kinda rough. I was ready to jump on a plane this morning due to Chey's and hubby's attitudes. She got very bent out of shape when her surgeon said he would not write her a PE excuse for the remainder of school and decided that it was my fault. It went downhill from there.

As I was sitting in the parent room, (which has been a godsend), contemplating actually booking a flight, I received a call from my boss, who is also one of my best friends. His 4 mo old granddaughter passed away from SIDS last night. That pretty much put things back into focus for me.

The urinary catheter had to go back in because she could not pass any urine. She also has not had another bowel movement since the enema.

They were a little concerned because there was blood in her urine. After getting her lab results back, there's no infection and they're saying the blood is normal and should go away.

The Valium does seem to be working the best against her pain.

The nurses gave her a shower this evening and removed her bandage from her back. All that's left is the surgical tape that's holding the incision closed. Surprisingly, it doesn't look too terribly bad. The incision is shorter and thinner than I would have guessed.

Hopefully tomorrow we'll get back on track.

I'm still very worried about going home. I asked her surgeon this morning if their discharge criteria included: 1. Being able to use the bathroom on her own (both urine and bowel movements). 2. Being able to roll over on her own. 3. Being able to regulate her oxygen level (if she takes off the oxygen her oxygen level drops down into the mid/high 80's). 4. Being able to walk on her own. He answered "yes".

We're only 2.25 days from leaving (we leave mid-morning on Tuesday). That's a lot to accomplish in a very short time.

We have to give up the parent room by 10 a.m. tomorrow morning for another family to use so I'll be back to the torture chair tomorrow or RMD. RMD is ok but it has problems. Someone stole their cable box off the building so there's no tv and then someone stole the computer they had for parents to use. After hearing all of that I feel much safer staying at the hospital than there by myself. Not that their generosity isn't appreciated, because it most definitely is.

Well, I'm off to get some much needed rest. Hopefully I'll have some good news to post tomorrow about her progress.

Question: For those of you that flew to somewhere else for your child's surgery, did you obtain a note from your child's Dr. to provide to the airline so you could get a wheelchair and early boarding? When I asked chey's Dr. about this he looked like no one had asked for this before.

Sherie
08-29-2010, 07:28 AM
We didn't get a note from the doctor, we simply called the airline ahead of time and requested a wheelchair. We took a van taxi to the airport and they brought the wheelchair out to the curb. The hospital allowed us to take a pillow for the trip. Being in a wheelchair will automatically put you first in line for boarding. Believe it or not, they still had to wand her in the wheelchair.

I was afraid to be at home too but it was much better than I expected. Sheena started eating and was much more relaxed. It wasn't easy, many people have already told you it's like having a newborn but you will quickly learn how to take care of things. I started practicing helping her in and out of the bed and toilet in the hospital. Ask the physical therapist to teach you. I don't recall rolling over as being a discharge criteria because I was still helping her the first week home. Walking is not much more than a few steps up and down. In general, the hospital will also want to discharge her so the criteria to leave is not as cut and dry as it seems. Sheena stayed an extra day (8 days total) because of some problems switching meds but the bowel movement was hardly more than a smudge. Sheena literally had nothing in her system to pass, has Chey been eating?

Pooka1
08-29-2010, 07:54 AM
Things are still kinda rough. I was ready to jump on a plane this morning due to Chey's and hubby's attitudes. She got very bent out of shape when her surgeon said he would not write her a PE excuse for the remainder of school and decided that it was my fault. It went downhill from there.

Hang in there!

In my opinion, there was zero chance he would have written that note and your daughter should understand why the surgeon refused. That's why I asked you to please post about how that goes down.

The point of this surgery is to return these kids to a normal life in short order. After any restriction period, they are usually allowed to do everything except things like bungee jumping. Because of the ability of the new instrumentation to enable fusion, our surgeon said that 95% of kids need no physical restrictions even right after surgery. Five percent need the restriction to get a fusion but they don't know ahead of time who they are so they restrict everyone. Some experienced surgeons don't restrict kids at all at any point and play the 95% odds. Writing a note excusing her from PE after 8 months or a year restriction period is not consistent at all with all that.


I'm still very worried about going home. I asked her surgeon this morning if their discharge criteria included: 1. Being able to use the bathroom on her own (both urine and bowel movements). 2. Being able to roll over on her own. 3. Being able to regulate her oxygen level (if she takes off the oxygen her oxygen level drops down into the mid/high 80's). 4. Being able to walk on her own. He answered "yes".

The discharge requirements for my kids were the following as I remember:

1. stairs (which obviously includes walking)
2. use the bathroom (not requiring a bowel movement)

I doubt they will discharge Chey if she needs O2 but they might. I have no idea.

ddb
08-29-2010, 08:22 AM
Can't answer about the plane ride - we drove. Hospital was an hour from home, but I took it really easy so not to jar her. The drive was very non eventful :). Remember to try to plan out your pain med administration for your trip to keep her comfortable.

DD did not have a BM in the hospital - Dr said it could take days once home. Finally happened on the third day at home. She did not have any distress with this - did not eat much solids in the hospital.

Pt should show you how to help Chey move. That was a discharge criteria - we had to be able to help her out of bed, and to the bathroom. Steps were also in their agenda - it's to make sure she knew how to stay safe during her recovery.

I hope all is getting better. Pain, the meds for pain and the warn out - tiredness all you guys have been through can put all on edge. I would say to myself - this will get better, and try to let everything slide. It helped to keep it all calm even tho inside I was screaming at times.

Kids tend to lash out at the ones they love when things are out of their control - one day soon she will thank you for all you've done for her during this time. It's not easy going through this, but when that happens it will replace this feeling with such a warmth.

Sending healing thoughts your way.

Dee

Fingers Crossed
08-30-2010, 09:59 AM
I really hope all is a little better in SLC today. Have been thinking about all of you. This is a really rough surgery, no doubt, and it is hard on the whole family.

Hang in there Gryffindor, it really will get better. Once she is better able to move around, I think, the activity will probably help her.

Have you been able to have her hair washed? Those little things really made all the difference while my daughter was in the hospital. Our hospital had a beautician's sink, and one kind aide washed her hair (by leaning her back in a wheelchair that had a back that tilted) and I was amazed at how that perked her up.

Pooka1
08-30-2010, 10:36 AM
Have you been able to have her hair washed? Those little things really made all the difference while my daughter was in the hospital. Our hospital had a beautician's sink, and one kind aide washed her hair (by leaning her back in a wheelchair that had a back that tilted) and I was amazed at how that perked her up.

Completely agree with this! Exactly so for both my kids.

Gryffindor
08-31-2010, 08:57 AM
Hello again everyone.

The night before last was another rough one. We ended up with a nurse who needed a bit more training on bedside manners. I was so tired that I didn't wake up when Chey called me so she called in the nurse. What DID wake me up was her screaming because they were handling her very roughly (like they were in a hurry). This was at 2 a.m. Then the nurse decided that it was time for her to remove her pulse ox and her IV saline drip. I refused to let her do either as Chey was still setting off the alarm for her oxygen level dropping below 90. I also refused to let them remove the IV since she hadn't really been drinking anything and she was fighting a very bad bladder infection. The more fluids in her bladder, the better. I had requested earlier in the day that Chey be taken off the Oxycontin and the Oxycodone. Which her day nurse did. That left her with Tylenol, Motrin, antibiotics, senna for help with her bowel movements, Valium and something to calm her tummy. The night nurse disregarded the Oxycontin request was disregarded by the nurse!:mad:

Yesterday morning I asked that we never have that nurse as a caregiver again.

Yesterday morning we had made a pact that as a family we would go down to the cafeteria and eat together. We put Chey in a wheelchair and started down to the cafeteria. Once in the cafeteria she started to feel really nauseated so I quickly started wheeling her back up to her room. Before the elevator arrived on the 1st floor she threw up all over herself. Not only was she feeling bad but also embarrassed. I truly believe it was the Oxycontin that made her throw up. When she's off of it she's nearly her normal self and her nausea is gone.

The day shift nurses came in and drew some blood to do some more testing. It turned out that her blood level was still lower than normal so they asked if they could give her a transfusion. Funny, because the day of the surgery they had told me she was low and could need one. I told them to do it right away but they said no because they didn't like the risk of her having a reaction. (They didn't listen to me about the bladder infection either and finally tested her urine after hubby saw blood in her catheter line and completely flipped out on them). So, that's now makes twice that my mother's intuition knew what was wrong and I wasn't listened to.:mad:

She was in bed while being infused. She also started complaining of very sharp pains in her abdomen. The nurse practitioner and pediatrician were very concerned and ordered an abdominal xray. The result was......gas. She had several areas in her intestines that clearly showed big pockets of air/gas.

Immediately after receiving the diagnosis her physical therapist came into the room and had her up and doing laps around the ward. She seemed to be feeling a bit better but was still having some problems with nausea.

Last night before going to bed, her pediatrician came into the room to check on her. She was very upset that Chey was laying down. She wants her sitting in a chair or up and walking whenever she's awake. I wholeheartedly agreed.

We had a very good night last night. She's having no problems with urinating or bowel movements now. Her time of the month started a couple of days ago so she's having to deal with the normal things that go along with that. All of the stress caused my period to start 2 weeks early! Thank goodness I brought a lot of pads with us!

The plan for today is to try the cafeteria again this morning. Then, it's walking A LOT and sitting. I'll let her take a nap in the afternoon but then she needs to be back up.

We were supposed to be on a plane home today. That's obviously postponed now. We're now leaving VERY early on Friday morning. Our local shrine was very kind and paid for the cost of changing all 3 of our airline tickets. It was right around $300 (total) to change dates (because it's the Friday before Labor Day).

The Shriners had a classic/hot rod car show here last night. I wish I could have spent some time downstairs but neither hubby nor Chey were up for it. I was able to get some really good pics though.

Gryffindor
08-31-2010, 09:05 AM
Here's an after surgery xray, a pic of the hospital, her back bandaged after surgery (note her shoulders and hips are now level) and the "torture bed" they have parents sleep on.

Pooka1
08-31-2010, 09:36 AM
Wow very sorry that it is still rough sledding for you and Chey. Just ain't fair.

I obviously have no idea what is going on but I have the following thoughts which may or may not be at all relevant:

1. My two kids had comparatively different experiences, one harder than the other, for some reason. That reason might be a reaction to the drugs. They were on the same meds less total types of meds than Chey but one still lagged the other in terms of recovery. In terms of narcotics, they were both off morphine on Day 3 though they were switched to another narcotic (percoset) in pill form. That leads me to suggest that some med or combination of meds is slowing Chey's progress. Not sure what the answer is though.

2. Both kids ate practically nothing in the hospital and neither kid was nauseous as I recall though I might not be remembering. I never pushed food on them in the hospital or at home. They were thirsty and drank though. Based on this, if she isn't hungry she probably shouldn't eat unless it quells the nausea. The nausea might also be from low blood pressure. At least I sometimes get queasy from that.

3. I strongly agree that she should be sitting or walking and mainly using the bed for napping and sleeping. Moving around, sitting, walking, etc. made my kids feel better and I think this is a real key in the recovery.

Good luck.

Fingers Crossed
08-31-2010, 10:53 AM
Oh no! On top of everything, she DOES have a bladder infection. You know that has just got to be making her even more uncomfortable. What a bummer, I just sincerely hope she turns a corner soon.

Regarding the nausea . . . our daughter took a prescription antacid for several weeks, her doc just prescribed it as soon as she started taking oral meds, as part of the "cocktail." Is Chey taking anything like that? (And our daughter still asks for one once in awhile because, I think, the Tylenol bothers her stomach at times.)

On a more positive note: Wow! Awesome pics of her back. I know she was having a lot of pain prior to surgery and really hoping this will resolve that>

And, yes, that chair "bed" truly looks tortuous. My lower back is screaming just looking at that thing. :(

Gryffindor
08-31-2010, 11:34 AM
Didn't mean to alarm everyone. Most of what I posted happened early yesterday. By last night, after the transfusion and the x-ray showing there's nothing wrong with her intestines, everthing has been MUCH better!

She went to the cafeteria with us and finally ate! She's still not much on the drinking. She normally loves Powerade and now is sick of it. It reminds her of taking pills, which she dislikes very much.

We're in the hospital's school room right now and she's using her netbook to catch up with her friends. She's laughing and smiling for the first time since prior to the surgery.

We've had her up and walking everywhere.

She's starting to take the initative to get herself up out of bed (whew!).

If things stay this way, and we have no more setbacks, we could go home tomorrow but I think it's best we stick with our current flight arrangements.

Pooka1
08-31-2010, 11:39 AM
Excellent! It sounds like you have turned a corner!

Very happy for you and Chey!

Fingers Crossed
08-31-2010, 11:51 AM
Yay! So happy for all of you. You will all be so glad to get home!

I keep saying this but I truly believe it . . . most of these kids are resilient and heal exceptionally well.

Go Cheyenne!

Gryffindor
08-31-2010, 04:28 PM
We received the clearance to go home tomorrow morning! Yay!

All is still going very well.

Pooka1
08-31-2010, 06:03 PM
Very good!

Onward and upward.

Eyes on the prize.

Gryffindor
09-01-2010, 03:35 PM
We're finally home!

It took forever to get a wheelchair at the SLC airport.

Chey was having a very difficult time getting comfortable on the plane. I'm glad it wasn't a long flight.

When we returned home we found that the dogs repeatedly jumping on her bed caused it to break on the sideboard. Hubby is on his way to Home Depot right now to get the items needed to fix it so we can get her out of our room and into her own.

I'm exhausted and will post more tomorrow, including lots of photos.

Pooka1
09-01-2010, 03:55 PM
Congratulations!

Great work.

ddb
09-01-2010, 06:58 PM
I'm so glad you are all home!!! We saw great improvement at this point. I think just being home lifts the heart and healing just takes over. We will be 7 months out from surgery soon and to look at DD now it doesn't seem like anything happened - well except she is straight now:).

We start all over again in Nov with my oldest - when the scared sets in I look at my youngest and say it will be ok.

I hope Chey continues to heal without issues, and that every day becomes more and more pain free.

CamsMomKelly
09-06-2010, 03:29 PM
Hello, Its been few days how are things going? I hope better...

Gryffindor
09-06-2010, 07:28 PM
Yes. Things are going very well so far. I'm still trying to catch back up timewise.

Chey only has one more antibiotic pill to go and then she's done with those.

She hasn't been taking anything for pain. I think it's more of a matter of not wanting to swallow pills than not being in pain.

Her digestive system finally returned to normal for the most part so she's off the Miralax too.

Tomorrow I'm putting her back on her schoolwork so she doesn't fall too far behind. I'm going to schedule an appt with her primary care physician in about 2 weeks to have him check on her and to help me determine when she's ready to return to school.

Gryffindor
09-06-2010, 09:48 PM
As promised, I finally have photos to share:

The Hospital:
http://i5.photobucket.com/albums/y153/ihatearizona/ShrinersSLCHospitalphoto.jpg

Torture Bed!
http://i5.photobucket.com/albums/y153/ihatearizona/TortureBed.jpg

Hubby with Monster's Inc...in a hall leading to PT/Parent Rooms/School. A local theater had donated these.
http://i5.photobucket.com/albums/y153/ihatearizona/TimandMonstersinc2.jpg

The view from Chey's hospital room.
http://i5.photobucket.com/albums/y153/ihatearizona/Shrinersviewfromhospitalroom.jpg

The coolest rotating door I've ever seen. These photos do not do it justice!
http://i5.photobucket.com/albums/y153/ihatearizona/Shrinersrotatingfrontdoor3.jpg

http://i5.photobucket.com/albums/y153/ihatearizona/Shrinersrotatingfrontdoor2.jpg

http://i5.photobucket.com/albums/y153/ihatearizona/Shrinersrotatingfrontdoor1.jpg

Giant Chipmunks in the hospital lobby:
http://i5.photobucket.com/albums/y153/ihatearizona/shrinerslobbychipmunks.jpg

The hospital room's bathroom/shower.
http://i5.photobucket.com/albums/y153/ihatearizona/ShowerinRoom82810.jpg

A mountain directly behind the hospital. Considering you have to be a Mason to be a Shriner and the links to Masons and pyramids (the all seeing eye on the back of a dollar bill, etc), I found this to be rather ironic.
http://i5.photobucket.com/albums/y153/ihatearizona/Pyramidmtnbehindhospital.jpg

I admit I smoke (never in my house though). The only place smoking is allowed at the hospital is in what they call the "Butt Hutt". This little guy was in there with me one day. Kinda strange as all of the praying mantis' I've ever seen have always been green, yet this guy is brown.
http://i5.photobucket.com/albums/y153/ihatearizona/PrayingMantis1.jpg

This is the Activity Room/Gym. They were having the wood floors refinished while we were there. It's huge and beautiful.
http://i5.photobucket.com/albums/y153/ihatearizona/ActivityRoom.jpg

Gryffindor
09-06-2010, 09:59 PM
RMD House photos:

The room. Note there are no TV's in their rooms.
http://i5.photobucket.com/albums/y153/ihatearizona/RMDroom.jpg

The outside of the RMD House:
http://i5.photobucket.com/albums/y153/ihatearizona/RMDhouseoutside1.jpg

This is a video game that both Chey and I are very good at. It was nice seeing they had it there to help relieve stress:
http://i5.photobucket.com/albums/y153/ihatearizona/RB2atRMD2.jpg

Before Surgery Photos:

Pre-surgery x-ray. Note: The measurements on this are incorrect.
http://i5.photobucket.com/albums/y153/ihatearizona/82310Beforesurgeryxray.jpg

Pre-surgery x-ray where they stretch the patient:
http://i5.photobucket.com/albums/y153/ihatearizona/xrayPreSurgerySTRETCH.jpg

Photo they took of her back pre-surgery:
http://i5.photobucket.com/albums/y153/ihatearizona/PreSurgeryPhotoofBack.jpg

Bending photo they took of her back pre-surgery:
http://i5.photobucket.com/albums/y153/ihatearizona/BendingShowingribandshoulder-Photo.jpg

Chey just before they took her for surgery:
http://i5.photobucket.com/albums/y153/ihatearizona/82310cheyennebeforesurgery1.jpg

Gryffindor
09-06-2010, 10:09 PM
After Surgery Photos: (there's really nothing gory in these)

After Surgery X-ray:
http://i5.photobucket.com/albums/y153/ihatearizona/xrayPostSurgerySTRAIGHTSPINE.jpg

After surgery side x-ray:
http://i5.photobucket.com/albums/y153/ihatearizona/xrayPostSurgerySIDE.jpg

Back Bandaged:
http://i5.photobucket.com/albums/y153/ihatearizona/82410Cheyennebackbandaged.jpg

Our nemesis: The Pulse Ox! High powered pain killers + decreased lung capacity do not mix!
http://i5.photobucket.com/albums/y153/ihatearizona/PulseOx82810.jpg

Leg pressure cuffs:
http://i5.photobucket.com/albums/y153/ihatearizona/LegCuffs82810.jpg

The hospital room:
http://i5.photobucket.com/albums/y153/ihatearizona/HospitalRoom282810.jpg

A sample pack of hardware they put in her back. It's a good thing they don't show you this BEFORE your surgery! This bag only had about 7-8 screws in it and weighed about 3 lbs. Considering she has 17 screws and associated hardware I'd guess she has about 5 lbs of hardware in her back. This makes sense as she did not lose any weight while in the hospital, but instead gained weight due to the hardware and bowel/bladder problems.
http://i5.photobucket.com/albums/y153/ihatearizona/Hardware.jpg

The incision without all of the bandages:
http://i5.photobucket.com/albums/y153/ihatearizona/CheyBackTapeandStitches82810.jpg

That's pretty much it!

CamsMomKelly
09-06-2010, 10:34 PM
wow moving off pain meds that is a big step and so soon, love your pics , very pretty girl. Her xrays look great , her spine looks very straight.
My son was shown the screws and rods on a visit and the look on his face was priceless, im not sure if we should have showed him or not because he didnt look as interested in them as I was..LOL

Gryffindor
09-06-2010, 10:40 PM
She was definitely interested in seeing them. In fact, she's the one holding the bag and taking the photo with her phone. This was just an hour or so before we were leaving for home.

The only problems we're having are that she really doesn't want to get up and move around much. Granted, it's only been exactly 2 weeks since the surgery, but her PT at the hospital said he wanted her doing laps inside the house.

She's still complaining of some stomach discomfort but she is moving her bowels. She's complaining of some nausea but is eating. Some of this could be due to the GIANT antibiotics they gave her for the bladder infection.

Fingers Crossed
09-07-2010, 08:25 AM
I agree, your daughter is such a pretty girl. Fun to see all the pics. Her back looks amazing.

I hear you on having trouble getting her to move around much. We set some goals right after returning home. You know - today we'll walk to the mailbox and back, tomorrow we'll walk to the neighbors' mailbox and back (that kind of thing). It seemed to help get my daughter get going and was actually at the suggestion of a friend who had been through this surgery with her son.

I'm amazed that she isn't taking pain meds! Wow!

Good luck on the school thing. Reading about this in your posts always makes me feel I should count my blessings, that my daughter was able to have her surgery and recovery time in the summer.

rosa.smm
09-14-2010, 01:28 PM
My daughter, Kristen, is now scehdule for surgery April 2011. She went from the surgeon saying she would be fine (23 and 26 curves); refered to a new surgeon and found out the curves were (60 and 68) and thought it might be too complicated to operate. Now they are going to operate.

All the info about recovery in the hospital is great. But, what about long term? She is 19 and in university. When should she plan on going back to school? What about full class load? How long before she can travel (as we don't live in the same city as the surgeon.) Any insight would be great.

Thanks,
Kristen's MOM

Gryffindor
09-14-2010, 09:11 PM
My daughter's surgeon has her down to be out of school between 6-8 weeks.

Since your daughter is a bit older and has curves that are more severe than what my daughter's were you may be looking at a longer recovery period. It's hard to say because every case is different.

She will have weight limitations until her 6 week checkup. My daughter isn't supposed to lift anything over 5 lbs. There's also no bending, reaching, stretching, etc until that 6 week mark.

Total recovery is supposed to take 1 year.

Since your daughter is going to college, and I know the textbooks can be quite heavy (and expensive), you'll want to check with the school to see if there's any way they can help her out by either providing her a set of books to use only in class and having her buy the books she'll use at home.

Traveling in general isn't barred. We had to fly home after my daughter's surgery. As long as she isn't going to go sky diving, bungie jumping or anything that would cause any sharp jarring movement, she should be ok. But, as I said before, it all depends on the case. Your surgeon should be able to provide you with a lot of information. There's also a lot of VERY good information on this website.

rosa.smm
09-15-2010, 10:47 AM
The 6-8 weeks seems kind of common. OUr surgeon said 2 to 3 monthes (I think you are right about the age thing).

The weight is a problem. We are looking into getting an ebook to get all her textbooks on that, which should be much lighter. Not all are available, but it may help. We are also looking inot online classes which may help for a semester, depending how flexible the university is.

It is hard to know how to plan for the year when we have no idea how it will go.

Hope your daughter is doing great. The pictures were great. It is so nice to see some one who has come through this whole process. It really helps.

Kristen's MOM
(surgery schedule for April 2011)

Gryffindor
09-15-2010, 11:02 AM
rosa: If it weren't for this website I would haven't been prepared for what we just went through/are still going through.

I read your other post and if those fusion numbers are correct + it being a posterior and anterior surgery, it's far more complicated than the surgery my daughter just had.

rosa.smm
09-15-2010, 02:18 PM
The website is great.

Right now I am struggling to find something positive to convince Kristen that this is a good thing. She is a person who faints for immunizations. The thought of her going through this is inconcievable at this time. I can't imagine her seeing the photos or looking at the rods and screws without passing out.

Did your daughter ever think she had a choice in the surgery or was she okay with getting it done. Kristen keeps saying she may run off to Paris and live in NotreDame???

Kristen's MOM
(Surgery scheduled April 2011
71 and 68 degrees)

Gryffindor
09-15-2010, 02:58 PM
rosa: Considering your daughter's degrees of curvature, (this is just my personal opinion because I'm not an MD), I think she has to have the surgery. She's well beyond bracing. There are some alternative therapies out there but due to the degree of her curves I'm of the opinion that they would be a waste of money and time.

Very bad scoliosis can cause problems with the patient's heart, lungs and other internal organs. My daughter definitely had decreased lung capacity.

Then there's the pain issue. I don't think anyone should be expected to take over the counter or prescription pain medications for any extended period of time. Tylenol will eventually kill your liver. Ibuprofen will eventually kill your kidneys.

In my case my child hates to swallow pills. This was very problematic once we returned home. She would rather deal with the pain than take a pill.

I won't kid you and tell you everything will go well because I can't. During her stay in the hospital there will/may be:
*Multiple x-rays taken
*Photos of her back taken in various positions prior to surgery (this depends on the hospital)
*Numerous blood draws. (both through and then w/o a catheter)
*My daughter had 2 catheters in one arm and one in the other for receiving meds and for drawing blood. The one that really was scary was the arterial catheter as, just as the name says, it goes right into an artery in the wrist.
*Two epidural lines. One had morphine. The other, Ketamine.
*A bladder catheter.
* An enema (or 2 in my case). This is ONLY if her digestive system is locked up. This was the ONLY thing that I would not stay in the room for. I don't know how the nurses do it!
* A blood transfusion (or 2 in my daughter's case).
* Some hospitals use drainage tubes in the incision. Ours didn't.

She will be pale. Some kids look bloated and a bit bruised. Luckily my daughter didn't bloat or bruise.

My daughter wanted this surgery. She wanted to be out of pain.

The BIG thing that helped her over the decision making hump: "You'll be taller". I think it was that ONE thing that really made her want this surgery. She gained 3 inches. The nurses where we had surgery said the biggest improvement they've ever seen was 5 inches.

You'll have to approach this with your daughter in a manner that you think would be best for her.

Bring her to this website and let her look at some of the before and after photos.

rosa.smm
09-15-2010, 10:39 PM
It's still good to get the real picture of what we may expect. Even if is not all roses.

You are right. The problems that can effect the lung and the heart and in Kristen's case her kidneys (which are getting very squished) have to be considered. It might be too theoretical for a teenager to worry about.

She is getting in more pain, and she doesn't like taking anything for it either. Massages only help now when she is getting one. So that could help.

But the height thing could definitely get her. We have a chart on the wall, where I have measured her and her two sisters and her brother. Her 16 year old brother has grown past her. Her 11 year old sister is catching up to her. She was briefly as tall as her 19 year old sister, but has lost height.

I guess we just keep working on her. I know she needs alot of this information, but I am serious...both her and her Dad will pass out if they have to read or see any of it.

At least we have a few months to let it slowly sink in to both of them.

Did you need any special stuff once you got your daughter home? Does she need a lot of help at home?

Thanks and take care,
Kristen's MOM

Gryffindor
09-15-2010, 10:52 PM
We really didn't need anything once she was home. I was terrified of leaving the hospital as I didn't have the upper body strength to roll her from side to side like the nurses were every 2 hours.

I have a sister-in-law that's a CNA. She was going to come over and teach me how to do everything and she had a lot of medical equipment that I could borrow (like a walker, etc).

But, once my daughter received the medication for the bladder infection and the 2nd blood transfusion it was a whole different story.

She was able to walk with very little help. Just as a precaution I had her in a wheelchair for our trip back (didn't want her getting bumped into in the crowded airports).

Once we were home she was able to get around on her own. She was able to shower on her own. Able to use the bathroom on her own. I think just being home made a world of difference.

Other than one rough night where she did ask for one of the Hydrocodone, it's not been bad at all.

She's still very tired and wants to lay in bed most of the day but we've been forcing her to come out to the livingroom and sit in a nice comfy chair. She's still going through mood swings but that's almost normal for someone almost 15. I think around that age they start to go a bit crazy. I could tell you horror stories about my oldest daughter! lol.

Today she went to the mall with her father to get some clothes for school. She was good for about 1.5 hours before she felt she was pushing it and they decided to come home.

She still has the surgi-tape on her back and it's not curling yet, as I would have hoped.

QUESTION to those who have gone through this: How long did you wait to take that tape off? Did you wait for it to fall off or did you have to start removing it yourself? At the hospital they said it should start curling and when it did to cut it off as close to the skin as possible (said to use nailclippers). We're just past 3 weeks since the surgery if that helps.

Fingers Crossed
09-16-2010, 10:52 AM
My daughter didn't have that type of bandage. She had the dressing covered by a wide piece of tape, which the nurse took off 10 days post-op. Then, all was held together with surgical glue, which started coming out of her incision at about 3-4 weeks post-op. It was a little bit of a mess. Got all over a couple shirts and was really gunky and stringy coming off. I wasn't prepared for that at all!

But, really, I logged in to mostly tell you I am so glad Cheyenne's recovery is going well. I think going out to shop for 1.5 hours at only three weeks post-op is amazing.

I have only just recently begun to appreciate how much better (straighter) my daughter's back looks. All of her clothes fit better and no more crooked lettering when she wears a t-shirt with words on the back! And I know she feels better about herself, too. Her posture is amazing, in fact we tease her about her "enforced" good posture!

Gryffindor
09-16-2010, 11:11 AM
We have this type of bandaging: http://i5.photobucket.com/albums/y153/ihatearizona/th_CheyBackTapeandStitches82810.jpg (http://s5.photobucket.com/albums/y153/ihatearizona/?action=view&current=CheyBackTapeandStitches82810.jpg)

I had her try on a pair of pants she had bought prior to her surgery and they fit fine. She was a bit disappointed but I reminded her that they didn't do anything to make her legs longer. Plus she wears those low cut style of jeans. Where she was fused is higher than where the waistline is (which is a good thing comfort-wise). However, they were kind of bunched up at the bottom before and now they're straight.

I have noticed that she still has a shoulder out of balance. In the hospital it seemed like everything had balanced out with her shoulders and hips but the one shoulder being higher than the other is very obvious now that we're home. Could this be from her laying in bed using her netbook so much?

Do you think this will work itself out in time? Or, should she be doing some form of physical therapy? In fact, has anyone had their child in PT after a fusion? And if so, did it help?

Pooka1
09-16-2010, 11:17 AM
I have noticed that she still has a shoulder out of balance. In the hospital it seemed like everything had balanced out with her shoulders and hips but the one shoulder being higher than the other is very obvious now that we're home. Could this be from her laying in bed using her netbook so much?

Do you think this will work itself out in time? Or, should she be doing some form of physical therapy? In fact, has anyone had their child in PT after a fusion? And if so, did it help?

My one daughter had the opposite shoulder higher for several weeks. She was despondent about this and hammered me on the point. :eek: The surgeon assured us it would eventually even out and it did but it took a while. No PT involved.

The other daughter came out with even shoulders and it stayed that way.

This difference, along with the difference in correcting the compensatory curve makes me think they actually had two different classes of T curves (Lenke type curves) despite being identical twins. This is reason #8,908,483 why twins studies are most likely flawed when studying scoliosis because it isn't just genetics but also epigenetics and several other factors that are hard to control within a study.

Fingers Crossed
09-16-2010, 11:20 AM
Hi again. My daughter's right scapula protruded quite a bit after surgery. It is definitely resolving and looks much better. (She is also very thin, like Cheyenne, so I think everything probably just shows more?).

I really don't know why this is, except maybe that things were just pushed so out of place by the scoliosis that it takes some time to go back into place? And maybe Chey's is more noticeable now than in the hospital because there is less swelling?

I, too, would love to hear from others about this. I have heard of others having scapula surgery, so maybe all cases of this do not resolve?

ddb
09-16-2010, 09:30 PM
I would not remove the steri stripes. They will fall off when ready. At DD's 2 week ck up there was still tape in spots - surgeon said let it fall off on it's own.

rosa.smm
09-20-2010, 10:58 AM
Gryffindor:

Thanks for all your advice on what Kristen may need after the surgery. That makes me feel alot better, to figure out what we may need.

What do you think about stairs. We have bedrooms on the 2nd floor or the basement, but not the main floor. Do you think that is going to be really hard?

How is cheyenne doing this week? Hope all is going according to plan! Hope you are ding well, too!!!!

Kristen's MOM:)

Gryffindor
09-20-2010, 12:45 PM
rosa: One of the requirements for Chey to be discharged was that she would have to be able to do stairs (we don't have any). Her PT at the hospital took her to one of the fire stairways and had her go up and down several times, with him right behind her just in case she started to fall. She did fine.

Chey's doing very well. Finally, some of the tape is starting to fall off but the sticky portion of the tape doesn't want to come off her skin. It will eventually wear off in time so we're not too worried about it.

Her incision looks amazing. Our surgeon was absolutely correct when he said there wouldn't be much of a noticeable scar. Once it's healed I think it's going to resemble a very thin, pink, pencil line down her back.

She's gearing up to go back to school and trying to get caught up on assignments.

She's gone clothes shopping and makeup shopping and was able to hold up pretty well.

Gryffindor
09-26-2010, 08:46 PM
Chey's complaining of a sharp stabbing pain in one of her shoulders. I'm making an appt to see her primary care physician tomorrow but I was wondering if anyone had any thoughts on this?

She said it feels as though one of the screws or rods is stabbing her in the shoulder. I know that's impossible because of where the pain is located. It's too far away from the incision site. I'm thinking it's her muscle readjusting after the surgery. She's saying it doesn't feel muscular and really wants to go see her Dr.

Any suggestions would be greatly appreciated. We can't see her surgeon until they're back out here at the beginning of Nov.

Pooka1
09-26-2010, 08:55 PM
Chey's complaining of a sharp stabbing pain in one of her shoulders.

That sounds vaguely familiar with one or both my kids. I will ask them about it and report back.

CamsMomKelly
09-26-2010, 10:13 PM
we are just about 2 weeks out from surgery , just got home yesterday , my sons shoulder has been bothering him since day 2, the doctors said it is normal , hopefully everything checks out for Chey.:)

Fingers Crossed
09-27-2010, 07:42 AM
I hope this turns out to be a minor blip in the healing road for Chey.

My daughter also complained of very sharp pains near her right shoulder, and it seems like this was several weeks out from surgery. We would sometimes give valium if they were really making her uncomfortable. They did eventually go away!

Gryffindor
09-27-2010, 08:22 AM
Fingers Crossed: Did you have it checked out by a MD to see what was causing the pain?

I still think it's the muscle readjusting. Alas, they did not send us home with an valium, and even if they did, I doubt she'd be willing to take it. She hates taking pills that much.

twinsmom
09-27-2010, 08:23 AM
I missed all of this ! At least I help with stabbing pains. Both of my girls and now one of the twins are and have dealt with this. Valuim seems to work well.
Glad surgeries went well. The shoulder thing must hae been hard- glad it worked out alright!!!!!

Fingers Crossed
09-27-2010, 12:09 PM
Hi again:

Yes, I should have said I did call the nurse practitioner and after talking with her we both thought this was "normal" healing pain and it did go away. I think this kind of pain coupled with other symptoms like oozing or heat near the incision or constant (rather than stabbing) pain might have warranted a check to make sure there was no infection . . .

I often think back to when my daughter was being dismissed from the hospital, and the nurse told her that she would know when she overdid it because she would feel pain. And, still, she does have some pains now and again and usually she knows what she did to bring them on (too much bending, for example). So, I keep reminding myself too that this is going to take a long time to heal all the way/fuse and there are going to be new pains once in awhile.

Of course, I'm not saying you shouldn't check this out. In particular since it is bothering Cheyenne so much.

Gryffindor
09-27-2010, 10:53 PM
Chey is feeling much better today. I have an appt scheduled with her primary care physician for this Friday to get the go ahead for her to go back to school next week.

For those of you with daughters that have gone through this surgery:

1. How were your daughters able to shave their legs?

2. What about clipping their toe nails?

It's the small things like this that we really weren't/aren't prepared for. I never realized just how much bending it took just to get ready in the morning!

Does it get better the further away from the surgery you get? Do they get some/any/a lot of their flexibility back? Or, do they simply have to learn new ways of doing things?

ddb
09-28-2010, 11:30 AM
Wow - Chey is getting ready to go back to school... Congrats!!

Yes as time goes by it does get better and better. There were times I've have to ask if she should be doing that, and she'd tell me all good = no pain.

Now at 7 months post op not much stops her. Her scar is so faint in spots it's hard to see.

Tell Chey good luck with school. I'm sure she's ready to get back to normal.

Gryffindor
10-05-2010, 07:14 AM
Cheyenne's first day back at school was rough on her but she made it through the full day! She came home, ate dinner and immediately fell asleep.

She said that everyone couldn't believe how tall she had gotten. Everyone kept asking her where she'd been and she'd tell them the truth. I told her she didn't have to tell anyone if she didn't want to and that I definitely didn't want anyone touching her back.

The only part that she's having a really hard time with is the bus ride to and from school. Since she can't bend, she's having to sit on the very front of the bus seat. Every time they hit a bump she's getting flung up in her seat.

EDIT: She's up but in a lot of pain. I'm going to keep her home today. I knew the first week back was going to be "iffy". I honestly didn't expect her to make it through the full day yesterday. We'll see how she's feeling by mid-day. If she's feeling better, perhaps we can drop her off at school for her last 2 classes of the day.

ddb
10-05-2010, 09:21 AM
Sorry to hear Chey is in pain. It really wore Kate down when she went back to school. Just the long seated time (90 min classes) was tough on her back. She got used to it fast, and soon enough all was good again.

I drove her too and from school the rest of the year instead of using the bus. Here there are too many twists, turns and bumps on the way. No seatbelts either on our buses. We only had April -> mid June left to the school year tho.

Hope she feels better today!

Dee

scoliboymom
10-05-2010, 09:39 AM
just wanted to comment too that the bus ride for my son was also too much initially and I ended up having to drive him to school for a couple months. The worst part of school was the uncomfortable chair backs and even now there are issues with chair backs as he still has a significant ribhump

Ramona