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