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View Full Version : Finally have a surgery date! Many questions...



Gryffindor
05-08-2010, 06:43 PM
My daughter has a surgery date of August 23rd (Shriners Hospital, Salt Lake City).

For those that have already gone through this process I have a few questions:

1. How long was your child's stay at the hospital? We've been told 7-10 days.
2. What items should we take with us?
3. What items should we leave at home?
4. How long was your child out of school after the surgery? We were told she would need to be out for 1 month.
5. If your child missed school due to the surgery and recovery period, what, if anything, were you able to work out with your child's school to make up for the missed days?
6. Is there anything we should do/buy to help make our daughter more comfortable once we return home after the surgery?
7. If you had to travel out of state, where did you stay? We're hoping to get into the Ronald McDonald House.

I'm sure I'll have a lot more questions as the date gets closer.

Carmell
05-08-2010, 10:49 PM
Hi,

It's good to have a surgery date, finally, but it also adds lots of degrees of stress knowing what the future holds. I CAN tell you that you are in wonderful hands at Shriners in SLC. They are very family oriented and take care of everyone.

1. 7-10 days in-patient is probably correct, especially for Shriners. They tend to keep kids a bit longer than a big hospital, just because they have that extra level of compassion. You should also remind them you are here from out of state and that you don't want to leave too soon. They will totally understand.

2/3. IMHO the fewer items from home, the better. What you do bring from home, make sure everything is labeled with her name. Everything! If she has a special stuffed animal/blanket/toy/trinket she would like to bring for a comfort item (even as a teenager) that is great. Just make sure it is labeled. Shriners does have some DVDs and games. The playroom is a huge area great for playing cards, foosbal, ping pong, etc. For the first several days she won't feel up to doing much of anything. I wouldn't worry about bringing much from home.

I would bring things for you. Chapstick, a water bottle, lotion, comfy slippers, etc. Hospitals are very dry, and in Utah in the summer, dry (I know you know dry). Plan for dry.

4/5. Call the school before surgery. Tell them her situation. Many families set up a meeting and develop a 504 plan for their child having scoliosis surgery. 504 is a federal law that states all public schools must provide equal education for anyone who may be physically unable to keep up. If your school has options for homebound help, you may not need a 504 plan. An ideal situation would be to arrange for work to be done before she has surgery. The first few weeks after surgery she won't feel like doing much of anything. Getting her strength back will be the focus. After the first few weeks, a homebound teacher may bring work home and help her complete assignments. Talk with the school about this.

6. What kind of bed does she have? If it is a firm mattress, you may want to consider getting a memory foam topper to help keep pressure points to a minimum. If she already has a soft-ish bed, no problem. She'll need to be careful with stairs, etc., as her balance returns to normal. They will teach her "no BLT" - no bending, no lifting, on twisting. It is easy to forget this but it is important that she doesn't do any BLT. When brushing her teeth, make sure she bends at the hips and keeps her back straight. When getting out of bed, she needs to log-roll over and push up with her hands rather than twisting to get out of bed. Things like that.

7. Shriners in SLC has a list of hotels that offer hospital discounts. One of the more popular places to stay in SLC is the Crystal Inn. They offer breakfast (included in the room charge) and have a pool for the day before surgery. We have stayed at the RMH (once). It is a great place for long term stays. If you are going to be there for more than a week, it may be good. The price is right, but remember that you have to clean your own room, including laundering the bedding, etc. before you check out. Not what I want to be doing when my child is having surgery, but again, if you can't afford a hotel (I can't) it is good to have an alternative. There is also a shuttle between the hospital and RMH. No need to rent a car. If you are driving from AZ, that's not a problem. The hospital is just up the road from the RMH (about a mile).

A couple of suggestions to start planning BEFORE the surgery. Make sure you speak with the docs about pain management. YOU need to know what the plan for pain control will be so you can make sure they follow that plan. Also, make sure you have a plan for constipation. Most people who have surgery have a problem with constipation. Constipation can set back recovery. You want to avoid this. Stool softners as soon as she is able to keep down clear liquids should be the minimum. Talk to the hospital about this.

Lots of things to plan for. You'll do great, I know.

Gryffindor
05-09-2010, 10:26 PM
Carmell: Thank you for your reply.

I was planning on buying a lot of new pajamas for my daughter to wear during her stay along with some slippers and a robe. She absolutely hates hospital gowns!

Yes, we definitely know dry. lol. At least it should be a lot cooler up there than it will be down here.

I have an email out to my daughter's guidance counselor about the upcoming surgery. Unfortunately, he's being forced into retirement this year and will not be at her school next year. He doesn't know who will be taking over his students.

I've been debating on whether we will need the 504 and I'm leaning more towards the idea that we should probably have one in place. Her school really dug into us this year with all of her absences (even with doctors notes, etc.) going so far as to send my daughter before the district truancy officers without even notifying my husband or myself!! Needless to say, we aren't very impressed with the school district's communication between departments and with parents. Things got so bad that it took the threat of our suing to get them to back off.

We have a foam topper for her bed already. Luckily we have a one story home. The only obstacles we'll need to be on the watch for our our dogs. We'll need to make sure they don't attempt to jump on her or her bed while she's in it.

Thank you for the advice about bending. There's still so much we don't know. How long does the bending, lifting, twisting restriction generally last? She's not enrolled in PE next semester but she is enrolled in an acoustic guitar fine arts class. Then there's the daily things of getting on the school bus, getting off, getting to and from classes, etc. We need to be extra careful as we do not have any form of health insurance. If anything goes wrong, SLC is very far away.

Thank you for sharing your experience with the RMD House. If we can get in, that's where we're hoping to stay. I don't have a problem with cleaning the bedding or our room. We simply don't have the money to stay at a hotel. At $100 a night that could be $1k! The local Shrine is paying for myself and my daughter to fly to SLC. They will only pay for one parent so my husband is going to drive up and take our luggage with him to avoid any unforeseen charges.

Thank you for the heads up about constipation. I've read that in quite a few posts as being a possible problem.

Snoopy
05-10-2010, 05:31 AM
I was planning on buying a lot of new pajamas for my daughter to wear during her stay along with some slippers and a robe. She absolutely hates hospital gowns!

Hi,

Carmell has given you excellent advice!

The only thing I can think of to add right now is this: Don't rush out and buy a bunch of pj's unless your daughter always wears pj's. My daughter took lounging pants and t-shirts to the hospital. I think it made her feel less like a patient and she didn't need a bathrobe. However, you might want to check with her doctor to make sure she will be allowed to lift her arms high enough to put a t-shirt on immediately after surgery.

When buying slippers, make sure they have good gripper things on the bottom so she's less likely to slip.

Good luck.

Mary Lou

ddb
05-10-2010, 12:11 PM
You've already gotten great advice - they have hit on all the points. I'll add a few of my experiences too...

DD didn't wear PJ's in the hospital... wore a hospital gown and another over her shoulders like a cape when she walked. She had a urinary catether in place for 4 of her 7 day stay.

School was and still is the biggest issue. I hope you can use our experience to prepare yourself. We were very forward with the school... months before surgery school was notified. One month before surgery had a meeting with Guidance and all teachers. All were sympathic and ready to help DD through this tough time. Asked about 504 (was advised about that on this board - school did not offer) was told no need. Homebound set up. Had to constintly remind teachers for work - the Homebound teacher would ask me to because her requests went unanswered. Two teacher never gave any work at all - One of those classes had to be dropped and she will need to retake in the next two years before graduation. I was on the phone with Guidance almost every day it seemed. Since your Conselor in leaving can you request a new one now before the end of this year so they can get up to speed before school let's out?

My advice from this side of Surgery would be get the 504 - you can cancel it if it's not needed. I think things would have been very different had we had one.

Dee

Gryffindor
05-10-2010, 01:35 PM
ddb: Thank you for your advice.

I feel we're really in a rough place regarding her school. There's a ballot initiative out for vote at the end of this month to help schools with their budgets. If it fails, which I think is likely, a lot of teachers will be receiving pink slips.

This makes getting anything set up for next year nearly impossible as the last day of school for this year is next week. The district won't know who their keeping and who they're letting go until likely at least a month after the election.

This keeps us from knowing which teachers to contact now in order to start to set up her school year for next year.

The next school year starts August 9th. We'll have only 2 weeks to get all of this sorted out with the district, school, teachers & guidance counselor before we leave for the surgery. It's going to be a huge mess.:(

Carmell
05-10-2010, 02:05 PM
Sounds like your school district is in a slight mess right now. You may have to wait until the teachers and administration return for the new year to finalize your plans for a 504 and other issues. That's not a bad thing. Just more work for you. Maybe it will be something to keep your mind off the surgery?

Also, in the 504 - or an agreement that everyone is on-board with - you need to list things like having two sets of books assigned to her. One for the classroom and one for home so she doesn't need to carry anything heavy in a backpack. This is very important for the entire year next year. Also, see about getting a hall pass to allow her to leave class 3-5 mins early so she isn't being pushed/shoved, etc. upstream between classes. Get her friends involved. Have them help her, especially in the first weeks back, by carrying things for her, including a pillow to put behind her back when she's sitting on the hard school chairs. Ask teachers if she can sit nearest the door for easy entry/exit. Things like this.

The no BLT should be in effect until the fusion heals - approx 6months to a year. However, if she's a quick healer, they may lighten the restrictions sooner. The last thing you want is a failed fusion (pseudoarthrosis). Not good.

Keep asking questions. Many here have great suggestions based on their experiences.

Beckymk
05-12-2010, 07:26 AM
All great advice. I will just add if the stool softener doesn't help, try Milk of Magnesia.

Even with the stool softener, etc... my DD needed the boost from that.

DD didn't wear PJ's in the hospital, just lounge pants & a t-shirt.

DD was out 7 weeks from school but my DD had a rougher recovery than what it sounds like most kids on the board. She didn't bounce back quite so quickly. She didn't need too much pain meds but she just didn't have energy to do much. I do know our homebound teacher came just a few days after she got discharged from the hospital but it was just for short amounts of time because that's about all she could handle at first. I was surprised ours started so quickly but they did. Our only problem was our teacher wasn't very good in Math and well...neither are we for the one graphing stuff they were doing. Basically DD never did learn that part even after talking to the regular teacher, asking DH who is good in math, having friends come over & explain it also. It was a lost cause on that one. Luckily, it's not a skill she will probably ever really need to know because I can not tell you anytime in real life I needed to graph an algebric expression (I think it was even negative numbers). We never ended up with a 504 plan but our school was way more than accomodating so it worked out OK for us.

I really never left the hospital room much other than going to the cafteria to get food. My daughter didn't ever want me to leave her side. It was quite out of character for her, so be prepared. It's like having a toddler with teen attitude. :p As they need help with everything.

DD basically slept on the couch for those 7 weeks because that is where she was most comfortable.

We were in the hospital for less than 7 days. Let's see her surgery was on Monday and we were discharged on Friday.

I know everything is tense for you right now and life feels like it's on hold until "after the surgery".

Gryffindor
05-21-2010, 11:09 AM
We received a letter from the hospital to provide to my daughter's school which states that she will be having surgery on 8/23 and that she will be out of school for 6-8 weeks and that they request Homebound Instruction be provided.

After contacting my daughter's guidance counselor, I was told that Homebound Instruction is only provided for children who will be missing 60+ school days (the school district's policy manual states differently - 30+ days). He also said if she entered the program that they could only give her 2 credits (2 classes) instead of the 4 that are required.

He came up with a solution that should work. We will be getting her homework each week from the school for her to complete at home and then we turn it in for her. Since all of the teachers have email, I'm going to push that we receive and turn in assignments via email. We can scan all of her completed assignments as PDF files and send them as attachments.

I've emailed her teachers for her first semester of the next school year informing them of her situation and what has been worked out with her counselor. I've asked them to provide her with her assignments from August 23 to the middle of September on her first day of school, if possible, so that she can get started on them immediately and get them turned in before she goes off for surgery.

She won't be able to do any homework while in the hospital and likely for up to 2 weeks after. I want to make sure she takes that time to heal and not stress out about possibly falling behind. I haven't received a reply from any of the teachers that I emailed.

I'm still working on getting our flight arrangements ironed out. There's only ONE flight that will work and even that one will be cutting it close.

ddb
05-25-2010, 09:44 AM
It sounds like there are a number of pending obsticales. It doesn't sound right that the homebound should count for less credit then no instruction. At least with a homebound tutor they can help with questions your DD will have with the work she is getting. Believe me - been there - doing the homework without teacher instruction of the topic is very hard. I strongly suggest you look into a 504 because your already hitting walls from school that I didn't have prior to DD being out. Knowing what I know now I would have pushed for the 504 even though the Guidance Con. said it wasn't needed. Preventing stress is what we tried also, but school was our biggest stresser.

This absence is not avoidable - your not having her miss school for an around the world cruise.

I'm not sure why I was steered away from the 504 plan, but I think that a lot of the "no we can't do that's" and "teacher don't have room for extra books in class - she'll just have to ask to share with a classmate" issues would have been mandated by law if she had one. I also didn't think I'd be constantly reminding teachers to forward school work - and that was at the request of the homebound tutor whose requests went unanswered.


Good Luck

Dee