We leave in a week!! I have more questions!

[Lura]

Hi everybody!

We head to Spokane one week from today! Great way to spend Easter Sunday, huh?

I'm looking for any last minute advise. I've read the threads and have gotten some great advise. Did any of your children actually feel up to doing school work while in the hospital? The Shriner's Spokane says children go to class each day (perhaps the children with issues other than scoliosis surgery)? Do all of the children require P.T. when they get home? How long before they can go in swimming pool? I've got the chair and the memory foam mattress anything else for home? I drive a Grand Am, how awful is that going to be for getting Alex in and out? My dad offered his Nissan Murrano (a small SUV) is this better? See, lots of questions still!!

I feel like I haven't asked enough questions of the doctor or hospital, they keep telling me that all of my questions can be answered on Sunday and Monday before surgery, and I guess I am wanting to think they know what they are doing. Alex's total spine will be fused, no one else has talked about this. His "S" is such that this fusion is required. Since Shriner's does this surgery on a regular basis, I haven't questioned it, and I feel very uninformed! However, I am also very overwhelmed by the surgery itself, not to mention the recovery. Alex is terrible at taking meds. When he had his tonsils out, I finally resorted to suppositories (not an option with this surgery due to his size and the operation). I just don't want him hurting more than he absolutely has to. Alex's communication problems will definately make this surgery a bit more difficult.

You know the part that really "sucks", we have no options. Either we do the surgery, or our children become crippled or worse.

Okay, this was my final pity party!! I am still praying for Crystal and Trenton and their families, as well as Nicole and Genevieve who are to follow. Thank you to all the rest of you who have already gone down this path and are making ours smoother!

God Bless,

Lura

[nikyergen]

Lura,
Don't worry about taking any school work. My daughter really hasn't been up to do school work at all. As far as the kids going to school at Shriners. That is an option. It isn't mandatory, and trust me your's won't be up to it. Besides, they are only in the hospital about a week. Crystal got a bunch of work done before we left. The only things she has to do when she gets back to school is her quarter finals.

Crystal had no physical therapy. But, she was up and walking her second day after surgery, which is very unusual. The doctors attribute her recovery to her excellent physical condition.

Do you know of anyone that has a suburban or mini van. That would be much easier. We borrowed one because all we have is a one-ton pickup and you feel every bump in the road in it.

You will get to see your doctor the day before. We didn't know anything until the day before either, because of our distance. But, the doctor was very informative and made sure we were at ease and comfortable with the surgery. Crystal has an 88 degree curve and they got over 50% correction. She also grew 2 and 1/4 inches. She looks me eye to eye now.

Pity parties are okay. There are a bunch of us mom's that our husbands left the day after surgery. We sit on the automan's in front of the nurses station until late at night. The first night we were a pretty motley crew, now we look forward to our visits after the kids are asleep.

Lura, I'll write more when I get home. Crystal hates being left alone. I think it has something to do with being a country bumpkin.

Love and prayers to you guys.

'til later,
Nikki

[Risa]

Dear Lura,
Just wanted to let you know your family are in my prayers. I know this is a hard road to take, but your right we have no choice in this. it's the best for our children. Risa

[lorrie]

Hi Lura

Sounds like you really need a big hug - one virtual one coming to you with this posting!
I've been worrying about the journey home too - Geeve travels in her wheelchair and we have a converted van to carry it - not a lot of suspension.

Suppositories might still be an option for the pain control - I know we used them after one of Genevieve's ops when she wasn't keeping anything down and she was a bit older than Alex at the time. Unless you think it will just really upset him if you try it . Genevieve is fairly used to it as I have to give her enemas three times a week anyway.
You're right - the no choice bit really sucks. You think 'How can I let them do this awful thing to my baby?' and then you think 'How can I not?' and then you try to think 'I should be glad they can' - I'm not reallyvery good at the last one at the moment.
This reply was supposd to help cheer you up but it doesn't seem to have come out that way - sorry. I'm really down tonight as well - Genevieve had a big cry at bedtime and complained her back was sore when I was trying to put her pj's on. She cheered up after a cuddle and a back rub with ibuprofen gel - but I didn't!
Anyway - thinking of you and you're in our prayers.

Lorrie

[Lura]

Hey girls (Nikki, Lorrie, Risa)

Thank you so much!! How comforting to have you all around! I can't imagine the past two weeks without this site!

Risa, I told you this a great site, once I'm on the other side, I will try to be of more help to you.

Nikki, you were the first to respond to my first thread so I feel a kindof kinship with you! Thank you for all of your support and words of wisdom. I am so glad that Crystal has done as well as she has. The doctor suspects Alex will grow at least 2 in. as well, wow!

Lorrie, you and I are in the same boat waiting and having children with additional needs. I, too, am sending hugs to you! Is there anything harder in the world than seeing your child in pain???? I'm trying to keep Alex's life as consistant as possible, but I know I am giving him a great deal of slack, how do you not? I try to tell him each night that the doctor is going to fix his back, he used to tell me to "shut up", but the last two nights he has said "I know", I hope God is talking to him and explaining it in a way I cannot.

Well, you have all managed to make me feel much better! Thank you.
I'm sure I'll be posting like a maniac this next week, then you may not hear from me until we get home as I don't have a lap top. Any way,,,,

Thank you!

Lura

[AC13]

Hi Lura: My daughter, AC (age 13 1/2) just had surgery 2/15. She started back to school part-time last week and hasn't had a pain pill for a couple weeks either. AC mainly slept and read while in the hospital (6 days) and we tried to get her up walking as much as possible. No PT yet, doctor just keeps saying nothing for 6 months. I asked him about swimming if it gets hot but he just said she can stand in the pool. A life saver for us when we got home was a borrowed walker - she used it mainly for support to get up and sit down with - not really for walking much (trips to bathroom). She only needed it for the first couple days. I think the SUV would be better. We had a small compact car and she had a difficult time getting in and out of it without twisting or bending her back. Once she got in it wasn't so bad, she laid the seat back and put a pillow behind her and was basically comfortable. We made sure she had taken pain meds before we left and that they were working (sometimes it takes about an hour to really kick in). She was on Oxycodone and Oxycontin for her pain and that worked wonderfully - plus they are pretty small pills! She also had an S curve and a full spinal fusion with rods and screws - went from 67 degrees to 29 - yah! She got a lot done at school before she went in and teachers have been very, very supportive. Best wishes - hang in there. I really have to say (and so does AC) that it wasn't as bad as we thought it would be. Thank you God!

Melinda

[LindaRacine]

Hi...

Just for the record, the spine includes 7 cervical vertebrae, 12 thoracic vertebrae, 5 lumbar vertebrae, and the sacrum. It's actually very unusual for one's entire spine to be fused. I've only heard of two adults having it done, and only because their prior fusions failed. Hopefully, Alex doesn't have to have his neck or sacrum fused.

Good luck!

Regards,
Linda

[Lura]

Linda,

My degree is in Elem. Ed., not othopedic medicine. The doctor said Alex will have a total spine fusion and I assume he is not including the cervical vertebrae, however, they did the cervical x-ray because Down syndrome people often have an issue in this are. Once I get to Shriner's, I will ask the doctor for clarification so as not to mislead anyone. Thank you for your input.

Lura

[Lura]

Melinda,

What a great resource you are! Did they insert the rods into her hip bones (pelvis)? I was just telling my dad that I hadn't encountered anyone else with such a fusion. I am encouraged by your daughters progress!

Thank you for the advice about the car and the walker. I was wondering about a walker and you are the first to recommend one.

I pray for continued healing for AC.

Lura

[Lura]

Melinda,

I forgot to ask where your daughters surgery was performed?

Thanks!

Lura

[LindaRacine]

Lura...

Sorry if I came across as terse. I didn't mean to. I just wanted to reassure you that your son would most likely have some flexibility. :-)

--Linda

[Mary Lou]

Lura,

I'm sure not everyone has p.t. after surgery, but my daughter is currently going to p.t. and she is three months post-op. The main reason for her p.t. is to work on mobility. She wasn't allowed to bend, twist or turn at all for the first two months, so she needs to work on that. Also, most of these kids don't want anyone touching their backs after surgery and they have to get over that. Part of Jamie's therapy is done in the pool and at the end she sits in front of the jets and just lets the water hit her shoulders and back and she says it feel great! Before therapy started, I was the only one she trusted to touch her back and now, she could care less who touches her back!

Mary Lou

[susannajon]

Hi Lura,

Well, my daughter is 13 days post-op, and what a wild ride it's been! I thought I would offer a little last minute advice from a mom who's just been through it...

Q: Schoolwork in the hospital?

A: Not a chance... my daughter was bearly making it to the bathroom unassisted, much less doing homework. Wait for week three to think about that!

Q: PT?

A: Our doc said that we should think about PT about week 4 or later. Before then, they're just thinking about getting out of their chair without wincing...

Q: How long before they can go in swimming pool?

A: Most docs say 6 months before they get in a pool alone. Earlier with their PT.


Q: I've got the chair and the memory foam mattress anything else for home?

A: I sent a list to Nikki, let me know if you want me to post again.

Q: I drive a Grand Am, how awful is that going to be for getting Alex in and out? My dad offered his Nissan Murrano (a small SUV) is this better?

A: The Grand Am is way too small. Borrow the Murano, you'll be much more comfortable getting Alex in and out, and bring (or steal) lots of pillows. Do not leave without two or three pillows under your baby to make him more comfortable.

Q: I feel like I haven't asked enough questions of the doctor or hospital, they keep telling me that all of my questions can be answered on Sunday and Monday before surgery, and I guess I am wanting to think they know what they are doing. Alex's total spine will be fused, no one else has talked about this. His "S" is such that this fusion is required. Since Shriner's does this surgery on a regular basis, I haven't questioned it, and I feel very uninformed! However, I am also very overwhelmed by the surgery itself, not to mention the recovery.

A: Don't let them corner you on asking questions. Write them down, and submit them in advance, and insist you get a written response before you move forward. It was very comforting to me to read the doctors written response over and over while I was questioning my decision to let them do this to my only child and my reason for living!!!!


Q: Alex is terrible at taking meds. When he had his tonsils out, I finally resorted to suppositories (not an option with this surgery due to his size and the operation). I just don't want him hurting more than he absolutely has to.

A: I would insist on a meeting with the pain management team in advance. He's not going to be able to self medicate like most kids do with a PCA. He will need the team to manage his pain with your support and expertise.

Yes, Alex's communication problems will definately make this surgery a bit more difficult, and yes, it sucks that there's no other option, but Alex is SSSSOOOO lucky to have a caring and involved mom like you. You are "da bomb", and don't you ever forget it!!!!

Major hugs and kisses,

[Lura]

Linda,

I would like to apologise for my response to the information you forwarded. It is definately no excuse, but I am very scared and more than a little stressed going into this final week. I think the information you sent made me feel completely ignorant of what is about to take place with my son, this is not your fault but mine. Believe it or not, I am a very sensitive person, normally.

Sincerely,

Lura

[Lura]

Susanna,

THANK YOU, THANK YOU, THANK YOU!!!! What a shitty week I'm having and it's only MONDAY!! I was telling the girl who works for me how great this site is because everyone knows what you are going through.

Shriners called today and asked to move Alex's surgery up from Tuesday to Monday. They wanted us to check in Thursday rather than Sunday. This put me into a real tailspin. I don't do anything until the last minute, I own a daycare, Spokane is 4+ hrs. away, etc. etc. So I basically said "this doesn't work for me". Guess what? Too bad! Some how all Alex needs before surgery is blood work, so that is getting done here tomorrow, but what about all the people I was supposed to meet beforehand? (Surgeon, anetheisiologist, respiratory therapist.....). Now I get to check Alex in on Sunday and meet with the surgeon and anetheisiologist right before surgery. I have to admit, I'm not very happy.

Okay, sorry to vent to you, but you were the last one to communicate with me so you are the lucky one who get's to read me whining again!!!

I am so grateful for the answer's you provided to my questions, you sound like a pro!! Sending all my best to you and your daughter as she continues her recovery.

Lura

[LindaRacine]

Hi Lura...

I totally understand.

I'm sorry that Shriners is pushing Alex into surgery before you feel like you've researched everything. I can only imagine how scary it is.

Regards,
Linda

[Lura]

Linda,

The frustrating part is that they will have no time to get to know Alex's temperment. When dealing with children who are developmentally delayed, you really should develop some sort of rapport (sp?) with them or at the very least with the parent. Oh well, the important part is that Alex get the best possible care and we can get on the road to recovery.

Thank you for your thoughts!

Lura

[susannajon]

Lura,

I know I would have totally wigged if my hospital had changed the surgery date on us, because same deal... we needed every day to get ready and pack, not to mention the mental preparation.

I hope it helps a little when I tell you that the few days leading up to the surgery are the worst part. Once the surgery's over everything gets a little easier, at least in my experience. I guess with Alex's challenges, you have additional stress that I can't imagine.

As far as developing a rapport, his primary caregiver in the hospital will be you, with the guidance and support of the nurses, who might be someone new every 12 hours, so I don't think getting there early would have been any benefit to you. The less time in the hospital, the better!

Hang in there!

Susanna

[Mary Lou]

Lura,

Does the doctor have a nurse that works directly with him/her? I've found that our doctor's nurse is very helpful with a lot of things. Could you contact the doctor or nurse and tell them of your fears/concerns so that they will at least be aware of your concerns? If you have to, write a letter or send an e-mail with all of your concerns. I think if you could get some of this taken care of, you will be more relaxed when the surgery date arrives. Trust me, the day of surgery will not be a relaxed day, but it helps if you feel completely comfortable with the doctor and everything involved.

Mary Lou

[nikyergen]

Lura,
I am hoping that what I observed at Shriners will help. While we were there with Crystal there were several developmentally disabled children. The staff there was incredible. The parents took a very active role. You will find that you will be meeting a lot of Alex's needs and comforting him. There was a couple from Canada with a 14 year old daughter. She had numerous tough nights, the staff did everything they could to comfort her, but it was her parents that really comforted her. They were exhausted, and they were tag teaming, but when I left yesterday, things were going much better for them and anxious to get their daughter home in her own environment. Try to keep in mind that the Shriners Hospital deals with developmentally disabled children on a regular basis. This will not be new to them. I felt a little odd having a child that can completely function on her own. I was actually the odd ball as far as that goes. So, please feel reassured that with your help they will succeeed with Alex.

I wish I could say more, and I hope this will help.

Love and prayers to you.

'til later,
Nikki

[Lura]

Nikki,

Welcome home! Thank you for all your thoughts. I just read through all of your posts from today, you are "officially" as GREAT RESOURCE!!!

As you know, right now I am feeling very overwhelmed, emotion, and exhausted. I cannot imagine what I will feel like next week at this time!

I am a control freak when it comes to Alex, and my ex-husband is a completely void parent when it comes to the tough stuff. Alex's dad and wife are expecting their second baby on Easter Sunday (the day we head out), he keeps insisting he'll be there for the surgery and then go home the day after - so you can imagine what a help he's going to be. But he needs to be there for his wife, and I would prefer he not come at all. My mom will be with me the whole time, and my fiance (greatest man in the world) will be there as much as possible. Actually when all is said and done, my dad and his wife, my grandma, my mom's fiance, and my sister will all have been with us at some point ( I only include this because it makes me laugh). We have such a wonderful, tight knit, disfunctional (in the best possible way), family.

Any way, things are moving right along!

All my best wishes!

Lura

[Lura]

Hi Susanna and Marylou,

Things are better today, I spoke with Alex's care coordinator and expressed alot of my concerns, and she was very helpful. At this point anything that comes up or changes absolutely throws me into a tail spin! My dad is particularly upset with the change in surgery date, as he is returning from Arizona after 3 mos. and will be traveling to Spokane as Alex is in surgery (he'd prefer to be with me during the surgery). Oh well, @#*& happens.

Alex had to have blood work here today (this is the only way I avoided having to go to Spokane Thursday rather than Sunday). He screams through the whole process and then sits up, politely says "thanks alot", and heads right for the door. He's quite polite after all the screaming and kicking!

Any way, thank you for all your support!

Lura

[AC13]

Lura: Of course you're stressed. I felt like I was in a whole different world throughout this ordeal. Thank God for this website! Spouses, siblings, etc. can't relate - a Mom is the one who it all seems to fall to. As a lot of others have said - the worst part is the wait. I have to admit there were some other rough spots - but at least with those you're more in control and you can actually see progress being made. I guess I was misleading using the word "total" spinal - she actually had L3 to T6 fusion. This is all new to me - I'm still learning. She had her surgery at Doernbecher Hospital in Portland, OR. It's part of the Oregon Health Science University. So you'll kind of be in my neck of the woods - Washington State.
I think you should feel free to fax or talk by phone (or maybe even e-mail?)to the doctors with your concerns/questions. The anesthesiologist called us the night before AC's surgery and we talked for about half an hour - at one point she had us both on the phone. She was great.
I stayed with AC every night in her room and really didn't leave her much at all - the nurses were great about including me in any decisions and letting me know what they were doing or what was going to be happening - and answering my questions. She was so drugged up for the first few days, she really wasn't up to making decisions for herself if she wanted to.
God bless!
Melinda

[lorrie]

Hi Lura,
Sorry - I've been poorly (Genevieve shared her bugs - or maybe it was her sister) and I wasn't up to logging on - so I missed the bombshell they dropped on you.
It's so horrid when they change things about on you - you just about get your head round coping with one scenario and it must feel like you had the rug pulled out from under you. When you're coping at full stretch it only takes a little thing to push you over into full panic mode - and this wasn't exactly little!
However, it sounds like you have a good strong family to support you so I'm sure you'll get your head back in one piece by Sunday. I suppose at least it makes one day less to worry (that's called looking on the bright side!)
I really feel for you and you're in my prayers. Hang on in there.

Lorrie

[Lura]

Melinda,

Hello!

You're forgiven for the "total spine" issue, I, too, did some digging and discovered Alex won't be fused totatlly, but a scosh more than AC, T2 - L4.
I will be rooming in with Alex too, and knowing me like I do, I'll be lucky to leave him long enough to go potty!

I think good nurses are truly the key to a successful hospital stay, so that's what I am hoping for. My mom keeps asking me if I'm being nice when dealing with the changes the hospital is throwing at me, I told her "yes", and that I take my frustration out on my family!! I know I have to be nice to the people with the needles!!!

All my best wishes!

Lura

[Lura]

Lorrie,

I'm so sorry you were sick! Knock on wood, I'm feeling good, although exhausted! I agree with you on the fact that Alex won't have to be sitting around the hospital waiting for surgery now that it was changed to Monday. I just want to make sure I talk with the doctors before they head to surgery, and I have been assured that I will.

I don't think I have ever been so scared in all my life as I am about this surgery. Alex's fusion will be from T2-L4, which seems pretty extensive compared to some of the others. Today was his last day of school (Spring break starts tomorrow), so I took goodies and explained to his class what was going to take place. They are 5th graders so they had some good questions and added totally irrelevant stories of their own, it was fun. Alex has been fully included in classes with these kids since first grade, and they are the greatest group of kids in the world. They love Alex, look out for him, are considerate and thoughtful. Every one of them hugged Alex goodbye today and wished him luck. It was so hard not to cry.

All and all a good day, better than the last few!

Thinking of you and praying for Genevieve!

Lura

[lorrie]

Hi Lura
It's lovely to hear how interested Alex's class was when you talked to them. It really helps to find out how many people care about you. Genevieve's class has also been looking at what's going to happen to her - I got a note home in her diary today to say their physio has been doing some work with them about it because some of them were worried about her. I was really touched (sat and wept if I'm honest). The kids in her class all have cerebral palsy so it's quite relevant to them as it's not unlikely that some of them will also end up having surgery too.

A few years ago Genevieve had a big hip operation and was in plaster from her chest to her ankle (on one side) and knee (on the other) for twelve weeks. One of her friends had the same op a couple of weeks earlier and her school coped with them both in plaster - looked like bookends!
Regards,
Lorrie

[LindaRacine]

Hi Lura and Melinda...

You can see a spine diagram, with the vertebrae numbered here:

http://www.sisonline.org/pages/spine.html

Regards,
Linda

[Lura]

Linda,

Thank you for the site. I've been looking for something like this since finding out about Alex's fusion being T2-L4. So thank you so much!

Lura

[Lura]

Lorrie,

I think having Alex in my life shows me how much good there still is in this world. I have encountered very little negative responses toward Alex, and of those that I have, most have been fellow educators who were required to include him in their class. This has been particularly disappointing because when I became a teacher, I wanted to teach all children, not just the blond haired, blue eyed, straight A student.

Are you and Genevieve feeling better? Around here, everyone is getting sick. I took Alex to the Dr. Tuesday and had him give him a 5 day antibiotic just to be safe.

My day was very busy, as I discovered my dad's basement was flooded due to a worn out hot water tank. Water everywhere! Dad and his wife are due home from Arizona on Saturday, and hope to head to Spokane on Monday to be with Alex and I, so I'm hoping that still works out. The restoration people were at the house for 3 hours vaccuming up all the water and now there are a bunch of fans down there. Anyway, it gave me little time to dwell on surgery day!!!

Well, I only have 2 days to get everything together, then it's off on Sunday!
Ready or not!

Take care!

Lura

[Carmell]

Hi Lura,

I didn't see your post until today. I've been out with Braydon - he had his 7th rod expansion surgery on Monday. The others have given you very good comments. I'm sure you appreciate them all!

I agree with the part about talking to the pain management team BEFORE the surgery. Very important detail, especially given Alex's communication issues. Ask for the plan in writing so you can make sure the hospital staff follows the plan.

Also, talk to as many people who will be caring for him post-op about his multiple issues. I can't emphasize enough how important it is for them to see the whole picture.

Braydon had a fusion surgery done as an infant. He is fused from T5-L1. This is a big part of the spine, but it is amazing how much mobility he still has. I would imagine with Alex's hypermobility, his mobility issues won't be a big deal. Hopefully I'm right.

Know that you have many people sending our best wishes your way. I hope the surgery is a complete success and the recovery goes as smooth as possible. Remember to keep asking questions! Until you have peace of mind.

My best!

[lorrie]

Hi Lura,

Don't know if you'll have access to a computer once you get to the hospital so I thought I'd better put last minute good wishes on today. I'll be thinking about you and Alex on Monday and you're in our prayers too.
I've found in the past that it's better once you get to the hospital and get started - before that it's a bit like standing on the edge of the swimming pool and wondering how cold it is: once you're in you just have to swim. Just remember that you don't have to be Super-mom and don't be too proud to accept absolutely any help that's going!!
Luv 'n hugs
Lorrie

[Lura]

Lorrie,

Hi there! Well, in true fasion, it's 9:30p.m., and I am packing! Actually, at the moment I am at the computer crying like a baby. I know everyone feels like this at this point, but I am so very scared. I think Alex is starting to suspect he's about to encounter some unpleasantness, and in a way I think that is good.

We leave at 6:30 tomorrow morning. Spokane is about a 5 hour drive. I am hoping I've thought of everything I might need.

Well, I'd better dry these tears and kick it in gear! Thank you so much for the kind thoughts and prayers! I'll be chatting again soon!

Lura

[SarahH]

Please that you are all in my thoughts! Many hugs! If you can email me hudkins.fam@verizon.net I'd love to send Alex a little to brighten his days :)