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.