Alexander is home!

[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]

6 days and six nights at the hospital and home now

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]

answers to your questions

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]

Fusion

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]

Thinking of you!

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