Alexander is home!

[laurieg6]

Hi Forum Members,

My son, Alexander, had his fusion surgery on July 12th & it seemed to go really well. The whole operation took less than 4 hours, although between pre-op & post-op stuff, he was gone for 7 hours. He was fused from T8-L3, which is two fewer vertebrae than originally planned. He was in the hospital just over 4 days & we've been home almost a week. His recovery has been steady, with daily improvements in eating, walking, attention span, etc. I kept really good notes about everything the whole time we were in the hospital (it helped me stay calm & focused) so I can answer any questions anyone has with lots of detail.

Alexander had a fever for a day or two in the hospital. We also had many scary moments with his pain & nausea & itchiness there. He had the morphine pump for the 1st two days & has been on oral pain meds since then. Since we've been home, his pain has mostly been manageable & I was able to lower his narcotic dose by 1/3 a few days ago. That really helped him to stay awake & to eat more. I'm actually a little concerned that he's doing too much already & I don't know how much to encourage him to do or not to do. He seems to feel he needs to push himself a little more each day, esp. to walk & eat. On one of our walks today he walked about 3/4 of a mile. I've had a lot of family visiting who aren't helpful & who don't seem to understand that moving too quickly isn't necessarily the best thing for him.

I do have a concern about his posture as well. I spoke to a nurse at our hospital who said this was normal but I wanted to ask any of you this too. Alexander's back looks much better now - it's flatter, longer & he grew over an inch from the surgery. I was told that his lower, more severe curve was improved by at least 20 degrees. BUT, his posture is still not great. He still seems to hold one shoulder higher than the other, to lean on one hip like he used to & he doesn't stand up straight. Straighter than before but still leans a bit forward & to the side. The nurse said it will take 2-3 months for his muscles to adjust to his new capacity for standing straight. Does this seem right/correct to you all? I thought our days of telling him to stand up straight were over but they're not? I'm trying not to worry that the surgery didn't completely fix Alexander's scoliosis & if anyone has any reassurance about this, I'd appreciate hearing it. I was really happy that the Dr. came out of surgery saying he didn't need to fuse higher than T8 but now I'm hoping that he did enough. I really don't want another surgery, ever, for Alexander & I can only hope that the Dr.'s positive/successful report about the surgery is accurate.

Despite my concerns about posture, etc., I am SO glad the surgery is over. It is such a relief not to have this hanging over our heads. I would love to answer any questions anyone else has about our experiences & about what I've learned throughout this ongoing process.

Sincerely,

[scoliboymom]

laurieg6
WE've been thinking about you. Soooo glad to hear everything went well and it's all over. It'll only get better from here on.
Regarding the posture thing Patrick is the same even 2 months later. He really leans forward which he didn't do before surgery and looking at him from the back he looks like a zig in a zigzag. His shoulder has come down a lot but when he walks his head still kinks sideways. I am still concerned about all this even though the surgeon told us at the 6 week post-op that this is normal and sometimes takes a full year to find it's new position. At any rate the surgeon was very pleased at how Patrick looked at this stage so I guess he must know something I don't. Guess we just have to give it time.
Hope Alexander continues in his great recovery and yes isn't it a great feeling to be on the "other side"
Take care
Ramona

[MATJESNIC]

Laurie,

We have all been thinking about you and Alexander since the surgery. We couldn't wait to hear that everything is finally over and it was a huge success. I can't wait until Nicole has hers and the worst will be behind us. I have some questions for you and the other Parents whose children had the fusion.

We are looking to buy Nicole a comfortable chair that she can sit in when she is not resting on her bed or couch. We know we can put pillows on any chair to make it more comfortable. Our kitchen and dining room ones are all wood. We want her to have a good place to sit when she is doing homework or meeting with her teachers or having visitors. It has to be easy to get in and out of. We saw some really nice ones at the office furniture store, but they all had wheels. I don't think it would really roll much on the carpet. Any suggestions?

We were told to get a seat for the toilet. Does she need the kind with handles. Do we see if insurance pays for it or just go buy it?

Does she need one of those grabbers? Is there anything else she needs that I should have on hand so that we are not scrambling after the surgery?

I bought some pillows. But should I also get a lumbar one and a full body one?

I would appreciate if everyone could give me advice so that I am really prepared.

Again, so glad Alexander is recovering so nicely.

[mariaf]

We are looking to buy Nicole a comfortable chair that she can sit in when she is not resting on her bed or couch. We know we can put pillows on any chair to make it more comfortable. Our kitchen and dining room ones are all wood. We want her to have a good place to sit when she is doing homework or meeting with her teachers or having visitors. It has to be easy to get in and out of. We saw some really nice ones at the office furniture store, but they all had wheels. I don't think it would really roll much on the carpet. Any suggestions?


Melissa,

We have a office-type chair with wheels in our basement by the computer. To get it to roll on the carpet we purchased a special matt at the office supply store. The matts come in different sizes. We got a relatively small one. Perhaps a large one would allow her to move around the room somewhat. Hope this helps.

[flowerpower]

Hi Melissa,

For the raised toilet seat I didn't go through insurance, I just bought one at the local drug store (no handles), Joe used it maybe the first two weeks.

He mainly used regular pillows to get comfortable in chairs, I bought a couple of lumbar cushions and he never really used them.

I didn't get a grabber, though it might be useful the first couple of weeks.

Renee

[MATJESNIC]

Thanks.

I don't want the chair to roll. Do you think one of those office chairs that feels comfortable to her and is easy to get in and out of would be the best?

I just called CHOP and they said that they will send home or have delivered anything that she will need for home care.

Any advice about giving blood? Should she start iron pills now? She doesn't eat any red meat and is probably low in iron. We are planning on having her give blood on the 13th or 20th of August.

[flowerpower]

It may be a little soon to start iron pills, but a daily multivitamin would be a good idea. Dark leafy greens (spinach, broccoli, etc.) on a daily basis would be good also. I don't like cooked spinach so would always add it fresh to salads. Protein powders/drinks, wheat germ (used in yogurt, smoothies, cereal, baked goods), oatmeal....other good sources of vitamins & iron.

Renee

[scoliboymom]

Patrick really needed head support when sitting. All the wheelchairs in the hospital had backs that were far too short and we couldn't easily prop a pillow behind his head. Same thing at home. Our computer chair was good, we just put a board against the backrest and then pillows so he could lean against the back with his head too.
We also got him a shoe horn with a long handle. He loved it. As for socks I had to put them on for him for the first 3-4 weeks after that he just got too frustrated with me trying to get them on that he figured out how to do it himself. A body pillow for bed was the best thing ever and he still uses it now.
Also a chair with arms to make it easy for her to lower herself down and back up. Although a lot of these things do make life a lot easier you'll be amazed at how fast she will no longer need any of them.
Regarding Iron supplements Patrick was started 6 weeks before his blood donation. Apparently if your blood iron is not good on the day of donation ie too low, they will not allow the donation

Ramona

[mariaf]

During each of my three pregnancies, my iron was low so I took a supplement. Also, I found that eating raisins helped bring my iron level up.

[Carmell]

Thanks for the great update, Laurie! I'm very happy to hear the surgery went well and seems to be a success! Great news for you and Alexander.

I think the biggest concern about him pushing too hard, too soon, will be twisting and lifting - things that could damage the fusion process. It takes 6-12 months for the fusion to be solid in kids, so he'll feel much better before its "safe" to twist and bend and lift like he wants to. Good luck convincing him it isn't in his best interest to be too active too soon. Walking should be fine, as long as his endurance tolerates it well. Walking is great. Walking helps with many things - eating better, bowels move better, endurance is better, etc.

The posture thing is probably something he can't control right now. The manipulation they did during surgery is huge, if you think about it. Try to be patient, and let his body heal (6-12 months) before panicking. There is not much you can do now about that anyway. Many kids who have scoliosis surgery have a balance issue or posture issues because their muscles have to get used to the new position of the spine. This takes time. Have they measured his legs to see if there is a difference in the length of his legs? After Braydon's VEPTR surgery, he limped much more and held his shoulder (opposite of the concave side) higher and stiffer than before surgery. We had his legs xrayed and measured, and he had a true leg length difference. Putting a lift in his shoe (built into the sole of his shoe) has made a huge difference for him. Just a thought.

Being less than 2 weeks post-op, he's doing remarkably well. You should be very happy and relieved about this. I'm sure things will only get better from here. Keep us posted, and continue asking questions.

Melissa - If Nicole is tall, she may want a raised toilet seat. Moving from standing to stiff sitting position can be uncomfortable those first days/week after surgery. A grabber is good so she doesn't twist or bend her spine too soon. You don't want to do anything to disrupt that fusion process (have I said that too many times? LOL). Braydon does best sleeping in a reclining sofa rather than his flat bed for the first few days after surgery. It is easier to get in and out of. If she does lay on a flat bed, remember to do log rolls, instead of twisting her body to get up and down. Lots of little things that sometimes the docs don't remember to tell you. Remember no aspirin or ibuprofen products 2 weeks before surgery. etc. etc. etc.

[MATJESNIC]

Carmell,

I appreciate all the advice and I can't agree more about letting the fusion have time to fuse and heal. I believe Nicole will follow this really well. She is a rule-player and doesn't want to have to go through this again. Nicole will be close to 5'7" after surgery and she has the longest dancer legs. We just bought bikes and she needed a bigger bike frame than I did.

When is it usually okay to ride bikes after surgery? Of course, I will listen to our surgeon, but just wondering.

In the recliner, is there any twisting or moving of the spine?

[Carmell]

Hi again, Melissa,

The problem with bike riding is falling. Her balance may be different after surgery (manipulating the spine into a completely new, and straighter, position) so care must be taken before trying anything that risks falling, like bike riding. I think the norm/average is 6 months post-op, but some docs are okay with bike riding sooner. The risk of damage to the spine in a fall is quite high, especially while that fusion is getting solid.

Recliner - Braydon likes the recliner because it isn't flat. Gravity doesn't play as big a role in getting up and down when you are reclining. She'll need to make sure she rotates her hips when getting in and out of any sitting/laying position, not twisting her spine. Maybe she needs to practice log rolling before surgery. Roll over to the edge of the bed and use her arms to push her body into a sitting position, dangling her legs over the edge of the bed. Something like that. If you have any questions about twisting or improper rolling, the PT in the hospital will be happy to show her (and you) the best way to move. Some people don't like recliners because they don't like that half-sitting position. These people do best either sitting or laying. Nothing inbetween. That's fine too. She'll just need to see what is most comfortable. My guess is that within 3 weeks post-op, she'll be feeling much better and will be able to lay in her own comfy bed, and sit in most chairs, etc.

[laurieg6]

Ramona & Carmell,
Thanks for the info about posture & your kids. I know it's only been a week & a half and I'm trying to let go of my worrying. I've been in worry-overdrive about Alexander's scoliosis for so many years now that it's really hard to dismiss it. Because of what you both seem to be saying, I think I'd better leave him alone about it for now. I've had so many relatives visiting me to "help" who are pushing me to push him to work hard at regaining his strength & I've had to tell them to leave me alone about it. I really appreciate your realistic input about his progress. It does seem to be great & if anything I already have to tell him (& my relatives) that he needs to take it slow.

Melissa,
We actually didn't buy anything special for after the surgery. I'm propping him sideways in bed using two regular pillows. He gets very hot in bed & doesn't like a lot of stuff in there with him so we decided not to get the body pillow. He can more easily push the two smaller pillows aside as well when he log rolls out of bed (by himself already). Alexander is much shorter than Nicole so maybe that's why we didn't need the toilet seat to be higher. He seems to be fine doing all his own toilet activities by himself because he never asks me for help anymore.

I am still helping him with showering though. We put a little kid's plastic chair on a bath mat in our bathtub so he can sit while showering. I have extra pillows everywhere for him for other activities. There's one on his kitchen chair which he uses while eating. We still have my old nursing chair which has become his most comfortable chair to be in since the surgery. We have two extra pillows on it - one behind his back & one behind his head. He also uses the reclining stool that goes with the chair. He reads in the chair with another high pillow on his lap to help raise the book closer to his face.

I had asked about a need for a hospital bed at first. I was told we'd only need one if his bed was unusually high or low which it isn't. I do plan to get him a new mattress & maybe a bigger bed once he's feeling a little stronger & can help pick out a comfortable situation for himself.

Regarding the blood donation, our most important issue was hydration. Alexander eats a lot of meat so his iron level for the donation was fine. But he hadn't had enough liquids the day of the donation so he fainted. Please make sure Nicole drinks a lot all day before she gives blood. For after the donation, I bought an iron supplement called Floradix - you might get some to give Nicole before the donation as well. It's a syrup made from fruits & vegetables & it also has lots of B vitamins & vitamin C. It's totally non-constipating. I took it when I was pregnant & it tastes pretty good. It's sort of expensive & you should be able to find it in a health food or vitamin type of store.

Good luck with all your decisions.

[Carmell]

Laurie,

Sounds like things are going well. And yes, I think you need to tell your well-meaning family and friends to back off - nicely. I hope you realize what amazing strides he's taking with this recovery. Very well done. Another example of how well younger kids do with recovery.

You also mentioned several things that are important - those little details that the surgeons often don't mention, mostly because they are out of touch with the recovery process. Braydon is very short (he's only 12, and less than 4'5"). Toilet seat height isn't an issue for him. Bed height isn't an issue either. Pillows are WONDERFUL to have behind every seat they sit on. Even when school starts, you may want to consider having a cushion or pillow available if he/she needs to sit against a hard chairback for very long. A stable chair/stool in the shower is a great idea.

I realize for most parents, over-planning and over-packing are the norm. You feel like you NEED to do things to help ease the anxiety. However, try not to overwhelm yourself with this. The important things (based on our experience only) are making sure you understand the pain management plan; keeping a notepad (small size is fine) with times of meds, etc.; having stool softners (at least) SCHEDULED not just as needed for post-op; having slippers/shoes with a rubber sole for both of you; etc. The rest of the stuff falls into place.

I'll be done rambling now...

[MATJESNIC]

I appreciate all the advice. Carmell, you are not rambling at all. I feel so much better to be armed with all of this information. I feel so much stronger to deal with this surgery because of all of you. Thank you again.

[Snoopy]

Melissa,

We didn't buy or rent anything after Jamie's surgery. We are lucky enough to have a walk in shower with a built-in seat, which she used for the first week or two and then she was back to showering in her own shower without a seat. She never needed a grabber thing, raised toilet seat or anything else. The chair she found most comfortable was a wooden rocking chair with a high back. We simply put a regular bed pillow behind her back to make it a little more comfortable.

Jamie only had about two hours total of tutoring and she went to school and sat in the library with her teacher without any problem. At meal time, she sat at the table as usual--no pillows or special chair needed.

Really, the only thing we did special for Jamie was to bring her bed downstairs. For the first two weeks, she slept downstairs and I slept on the couch. By the end of the first week at home, I could have slept upstairs because she just didn't need me. We put one of her sister's beds in Jamie's room and she started sleeping upstairs after being home about two weeks, but kept her own bed downstairs in case she wanted to lie down while watching TV (we don't have TV's upstairs), or take a short nap after school. Remember, Jamie returned to school p.t. at about 4 1/2 weeks, so she sometimes rested downstairs.

My advice would be to wait until you see how she does in the hospital before ordering anything for the house.

Mary Lou

[MATJESNIC]

Thank you so much for sharing your story. I think I am over-thinking things to deal with the helplessness that I feel. I appreciate everyone's advice.

[laurieg6]

Carmell, I never thought you were rambling - you always have good advice & input.

Melissa, I can totally understand the helpless feelings you have. One thing that really helped me with that in the hospital & even through today was keeping a notebook of everything that happened. Several people on this forum have mentioned it & it really helps. I kept track of everyone's names, ie. doctors, nurses, PTs, etc., as well as times that meds were given or that various procedures were performed. I wrote down all the info I was given by the OR nurse from the operating room and as much as I could remember of relevant conversations I had with all the personnel throughout our hospital stay. Now I am mostly just using the notebook to record the times I give Alexander his meds (I stopped recording poops, naps & other things that seem to be more back to normal a few days ago).

I realized I did buy one thing that was esp. helpful the first few days we were home: a baby monitor. My husband & I took turns sleeping on Alexander's floor (on a comfortable mat) the first couple of nights we were home but now I just use the monitor. It was also helpful during the day when he was napping & needed my help & I could only hear him on the monitor because of household noise. He usually needed my help getting out of bed but is now doing that on his own - he only needs my help getting the pillows in the right position before going to sleep.

He is still having pain but we have started decreasing the meds & he seems to want that. He seems to have a high pain tolerance because he has never said it was above a "4" on the pain scale (1-10). It is so hard to be patient when your child is suffering any kind of pain & there is not much you can do to help it. He is such a trooper & I am so proud of him for all his hard work. I had better stop rambling on now...

[MATJESNIC]

Laurie,

Thanks again for sharing all of the things that worked for you and your family. It is extremely helpful. I am so happy for you that your son is on his way to a great recovery.

We are having a huge "Let's Get it Straight Party" for Nicole. We are very busy planning that and that is keeping us all focused on something positive. Nicole is very scared to give blood. But she has to do it. It will be good for her to face her fear right before facing surgery.

Please continue to keep in touch. I am sure I will continue to have questions.

[laurieg6]

Writing about this seems to be therapeutic for me so I am glad you find it helpful. The party idea sounds great. I'm sure Nicole will do fine with the blood donation as long as she drinks a lot of fluids & is well hydrated before she goes. I've donated a lot of blood over the years & once the needle is in, you barely feel anything. She might just look away from the needle & take some deep, relaxing breaths while they're inserting it.

Alexander hasn't taken any narcotic pain meds today - he doesn't seem to need them anymore, less than two weeks after his surgery. He's only had a couple of tylenol so far. It's incredible how quickly his pain has diminished & how well he seems to be healing. However, his posture is still a work in progress. Everyone seems to feel they need to tell him to stand up straight because he is leaning forward & a little to the side. I was so glad to hear Ramona say the same thing about Patrick because it really normalizes it for me. I am trying to be the one who leaves Alexander alone about his posture as well as the one educating others to leave him alone about it. Per Carmell's advice, I may get his leg lengths checked out depending upon what the surgeon says at his 3 week check up in a week & a half.

[Sherie]

Hi Laurie

It's so great to hear how well Alexander is doing! My friend's son's recovery sounds very similar, he was off pain meds within 2 weeks too. He also had the hunched over posture, she was very concerned about it too but I think he's fine now. Have you been able to measure him to see if he grew?

Did he have any gastric problems (gas, bloating, etc)? That seems to be a big issue and seems to cause more pain than the surgery itself in some cases. Any advice there?

It's really wonderful to hear another successful surgery story. It gives me confidence that we are going to do fine. Glad you and Alex are back.

By the way, has anyone heard from Sam (New York)? His daughter had surgery several weeks ago.

[laurieg6]

Hi Sherie,

We measured Alexander on our wall chart the morning of the surgery & again the day after we returned home. He grew over an inch & his torso looks longer (& a lot skinnier). He did have gastric problems - lots of nausea in the hospital & constipation. He never complained of stomach aches that seemed to be gas-related. I guess being able to poop after this (or any?) surgery is a big deal. They were almost going to keep him in the hospital another day if he didn't "produce", but then it happened. The nurses had given him something to drink to help the situation & a glycerin suppository. I've been giving him stool softeners & acidophilus/bifidus capsules (the bacteria that's in yogurt - he doesn't like yogurt) to help increase his good intestinal bacteria. He seems fine in this area now.

Take care,

[Laura in JAX]

I am so happy and relieved to read everything went so well for Alexander, you have no idea!

Erica is scheduled next Monday with Dr. DeWald in Chicago. I could not be more nervous, but reading about Alexander helps.

All my best for his continued success!

Laura
52 L 34 T

[laurieg6]

Laura, I'll be thinking really positive thoughts about your daughter on Monday. I'm sure it will go really well for her. I wish her a very speedy recovery. Hang in there yourself too.

[Mom37]

My daughter will be getting fusion surgery this Tuesday August 1st. Sherie referred me to this thread due to all the good tips and I appreciate it. I recognize some others like Melissa, and wish you the best and thanks for everyone's advice. I am glad your son is doing well. We have been told it will be about 7 hours in surgery, but that may include all the prep, which I didn't think of. I thought that I was told shorter surgery time. Well I was wondering if we needed to get Pj's that buttoned up as wondering if it was hard to lift arms high over head, and if easier to have no bottoms, like a button up gown. I am worried about pain, and all your info was helpful.

[scoliboymom]

Mom37
I bought Patrick a bunch of button up shirts and he never wore them. He prefers his t-shirts a bit baggier. Now thinking about it, since girls fashions seem to be tighter buttons might be better but I don't think Patrick ever had any problems with reaching over his head. He was fused T4 to L1 so maybe if the fusion goes higher there may be restrictions. Also in the hospital it was just easier to use the hospital gowns. Not a fashion statement but comfortable enough....sorry for rambling,
Ramona

[mom2cole]

My son just got home today from having final fusion with two new rods this past tuesday and he wore hospital gown while there but today put on a t-shirt. I helped but he was fine putting hands thru sleeves. He has had alot of pain on and off the past couple days too but he did it. Good luck.
Stacey

[laurieg6]

Alexander wore the hospital gown the whole time he was in the hospital - he only changed into his regular clothes to go home. I helped him with his t-shirts, both on & off the 1st few days he was home but now he dresses totally independently again. He can even do his own socks & shoes. I'm glad all the info on this thread was helpful. I've learned so much reading about other people's ways of coping with this surgery & recovery. I don't know what I would have done without this forum. I am so grateful to everyone who shares any support or information.

Good luck with your daughter's surgery. I'm sure it will go really well & you will feel so much better when it is over. I will be thinking about you both on Tuesday. Please let us know about it when you can & don't hesitate to ask more questions if you have them.

[Sherie]

Hi Laurie

Thanks for the advice, I guess it's normal to have some constipation and is to be expected. My friend's son is still not eating well and has lost a lot of weight on what was already a thin frame so they think there is some other underlying problem.

Just wondering if Alex had to wash with some special soap before surgery and for how long?

Also would like to get your opinion, do you think Alex would have been ready for a 2 hour flight a week after surgery? We're flying to St. Louis and were told when she's discharged, she can fly home which is 2 hours nonstop to Houston. Is this realistic? This is a big concern of mine right now, also my son's birthday happens to be the week after her surgery and I would like to be home for that as well.

Sounds like Alexander is continuing to do very well, so glad to hear.
Take care

[Mom37]

Mom37
I bought Patrick a bunch of button up shirts and he never wore them. He prefers his t-shirts a bit baggier. Now thinking about it, since girls fashions seem to be tighter buttons might be better but I don't think Patrick ever had any problems with reaching over his head. He was fused T4 to L1 so maybe if the fusion goes higher there may be restrictions. Also in the hospital it was just easier to use the hospital gowns. Not a fashion statement but comfortable enough....sorry for rambling,
Ramona

Her fusion will be about the same. We go to preop tomorrow, and I guess we will ask questions. In hospital we would just use gowns there, but just was thinking at home, but probably will just make due unless told or feel otherwise. Thank you for your response.

[laurieg6]

Hi Sherie,

We did get special soap, some kind of disinfectant, that my husband helped Alexander with, the night before the surgery. They used it on his whole body & had to pay special attention to scrubbing his back with it & maybe left it on for a few minutes. I read the directions but don't remember that much about it really because I was not allowed in the bathroom during that shower.

Regarding the flight home, I think it may be difficult (& stressful like everything else about this surgery), but definitely possible so soon after the surgery. Although Alexander didn't feel too great on the 20 minute drive home from the hospital on day 4 after his surgery, he improved so much every day that by post-op day 7 he was so much more mobile & more himself than day 4. You'll probably have to have several pillows for her back, the right meds for Sheena to be comfortable & possibly sleep from, but that won't make her nauseous. A wheelchair to get through the airport would probably help too.

She might not even remember much about it & will be so happy to be going home that it will all be worth it. At home, she will improve so much more & you'll probably be glad you made the trip so soon.

I can hardly wait until Alexander's post-op appt. this Thurs. so I can ask the surgeon about his posture.

Please let me know if you have any other questions I could possibly answer.

Take care,

[Sherie]

Thanks for the encouraging words, I really feel better now. I think the prospect of going home will be a huge incentive to make it. I hope Sheena does as well as Alex, I would be so pleased.

I'm such a worry wart, I already bought a stool for the shower in anticipation of the surgery. My daughter has extremely thick, long hair and I think it's going to be hard for her to wash it herself. Does Alex have trouble raising his arms above his head?

[laurieg6]

I, too, am a huge worry wart. Even though the surgery seemed to go well, I still wake up worrying that something could go wrong. I worry about his posture still, even though many people seem to think it's normal this soon after surgery to not have great posture. I worry whether he had enough fused, even though I was so concerned before surgery that he have as little fused as possible. I worry that he might need another surgery if not enough was fused. I hope I picked the right surgeon because he is not as available to speak to as our 2nd choice surgeon might have been. But when I look at Alexander's smiling/cheerful/angry/whatever face, all my worries fade & I know he'll be okay because he has to be; he seems so strong & I am so proud of him.

Given the enormity of our situation including all the major decisions that have to be made, as well as the waiting & the stress of the surgery itself, I think that worrying is normal. People who aren't dealing with issues such as ours have no idea what it's like, I've found. So you can talk about your worries on this forum & we, here, can understand that they are "normal" parental worries for our unusual situations.

Alexander needed help washing his (longish for a boy) hair the 1st few times but is now showering on his own. While he was on the narcotic meds, I had a small, sturdy, metal & plastic kid's chair that I put on a bath mat in our bathtub/shower for him. He couldn't fully lift his arms at first, so I was helping him put on & take off his shirts; he hasn't needed help with his shirts for at least a week. His only minor problem dressing are socks; he doesn't bend well enough to comfortably pull them on but he doesn't want my help either.

[Sherie]

You're so right about people not understanding, but I've found so much support here and from friends I've made who are in the same situation. I honestly don't know what I would have done without the internet. Can you imagine trying to tackle this without these resources?

Shirley's daughter is having surgery today (MOM37), actually she called me a while ago and said she's finished and is doing well.

Thanks again for your prompt reply. All these kids are such an inspiration to me, everytime I feel like complaining about an ache or pain, I bite my tongue because I know it's nothing compared to what they're going through.
Have a great day :)

[laurieg6]

I don't know what I would have done without the internet & this forum. I've hooked up with two other moms in my area whose daughters recently had the surgery so that's been great. But it's not daily support, information & feedback like the internet provides. I agree that these kids (& adults with scoliosis) are inspirational & I learn so much from them, esp. about how to not let the small stuff get me down.

Thanks for responding to me so quickly as well Sherie.

Take care,

[Mom37]

My daughters Spinal Fusion surgery, Wed., Aug. 1st went very well. She had two titanium rods and screws, and hooks, as need to be able to do future MRI's to monitor her spinal cord. No spinal cord issues during surgery. Great correction and about an inch and a half taller. She is still healing, but we were able to come home yesterday and sleep in our own beds. Pain is manageable, but day 3-4 were tough. Her curve was at a 60 on July 31st at preop. It was upper thorasic curve later determined through an MRI as caused by Chiari I Malformation. She had Chiari decompression surgery Dec 2006 and she used Spinecor until then, almost 9 months. We live in the Dallas/Ft. Worth area of Texas. She had surgery at Texas Scottish Rite Hospital for Children. The two surgeons were awesome, and nurses, and eveyone there were great. A very special place. Since day one until now very pleased with them (TSRHC). Thanks for everyones support and advice.
I am happy to answer any questions if I can be of any help to someone else.

[Mom37]

Thanks for the encouraging words, I really feel better now. I think the prospect of going home will be a huge incentive to make it. I hope Sheena does as well as Alex, I would be so pleased.

I'm such a worry wart, I already bought a stool for the shower in anticipation of the surgery. My daughter has extremely thick, long hair and I think it's going to be hard for her to wash it herself. Does Alex have trouble raising his arms above his head?

We were given a bottle of skin cleaning wash and a sponge scrub with a long handle like a backbrush for the back the evening before surgery. The solution is called Dyna-HEX 2-containing chlorhexidine gluconate. It says it is for patient preoperative skin preparation. We also did in the morning with a washcloth as well. We had a good hair washing the evening before, as it will be at least 5 days before you can wash her hair, and at least 2 weeks before we can shower or bathe. Sponge baths are ok. At the hospital there was a table they could lay her on, and could add pillows, to wash her hair at 5th day, but she thought it would be too uncomfortable, so to be honest, we are trying to figure out how and when she will be comfortable doing it. Thick hair too. Also wanted to add that we are experiencing great difficulty raising arms above shoulder level, and do recommend if possible button up night tops. Also sitting is the toughest part and were told by both doctors and nurses that many females in particular say that, and more than one also said maybe because of the pelvis area on females. Also keeping a log of when and what meds really helps at the hospital and at home if need to call nurse at any time.

[MATJESNIC]

Shirley,

Welcome home and I am so glad everything went well. Please remind me of how much of her back was fused. I hope it is a smooth recovery from here.

[Mom37]

Shirley,

Welcome home and I am so glad everything went well. Please remind me of how much of her back was fused. I hope it is a smooth recovery from here.

It was from about t3-t11 approximately. Excellent correction. Thanks for your note. She is doing well and is 2 weeks post op and better every day.

[MATJESNIC]

that is wonderful!!! How fortunate that she didn't need any of her lumbar fused. Nicole will have almost her entire back fused. I'm so sad about that.

[Mom37]

Melissa,

I am sorry that Nicole needs a longer fusion. Please let me know how it goes. I am sure you are nervous too, but these kids heal remarkably. I was told don't compare today to yesterday, but to two days ago. It really is remarkable each step every two days. Our toughest thing was pain especially the 3-4th day, and my daughter sitting up in a chair, but now both are much better. We still have soreness and tired, but nothing compare to a week ago. I hardly can believe the progress. Thanks and take care. I will be thinking of you both in the comming month.

[Mom37]

Melissa,

I am sorry that Nicole needs a longer fusion. Please let me know how it goes. I am sure you are nervous too, but these kids heal remarkably. I was told don't compare today to yesterday, but to two days ago. It really is remarkable each step every two days. Our toughest thing was pain especially the 3-4th day, and my daughter sitting up in a chair, but now both are much better. We still have soreness and tired, but nothing compare to a week ago. I hardly can believe the progress. Thanks and take care. I will be thinking of you both in the comming month.

Saw on other post pain but doing fine. Glad to hear Melissa. Nicole is on her way to recovery. Take care. Shirley