We're home!

[Carmell]

Sherie - it is quite common for narcotics to make a usually calm person feel agitated and uptight. That's one of the side effects of the medications in some people. Braydon tends to do this when he is given certain pain meds in the hospital. It is heartbreaking for parents to see their otherwise calm and happy child raging and so angry for moments at a time. Braydon even recognizes this and apologizes out loud when he's feeling this way. We try to avoid these medications but sometimes it is needed, hopefully only one-time doses.

My point is that Sheena will be your happy, calm child once her recovery is more stable and she's off the narcotic medications - I'd bet money on that (if I were a betting person). If the Valium helps calm her, that's good. Even just a dose at bedtime to help her relax and sleep better isn't going to hurt her for a few days.

Keep up the good work. You both are doing great.

[Sherie]

Thanks for the advice. It's a learning process no doubt.

Carmell, I'm sure I speak for many of us here, you've been through more than most of us and I really appreciate the encouragement. How is Braydon's leg?

[Carmell]

Hi Sherie,

Thanks for asking about Braydon. Man, this leg thing has been more than I bargained for. He is still on crutches (although last Monday he went all day on ONE crutch only). His leg seems to be less sensitive, so we're hoping the exercises he's doing is helping to stimulate blood flow, which promotes bone growth. He has an appt on Dec. 4 for another xray to make sure the bone is growing back in that tibia. He needs to practice more walking. He just doesn't seem to be able to get rid of the crutches yet. One day... He's doing well overall. This is just another "hump" to get over.

As for having gone through more than some, when its your child having any kind of surgery or medical procedure, it doesn't matter that someone else has been through more or less. It's YOUR child and you need as much support as anyone. That's what I try to offer - encouragement that no one has to go through any of this alone, no matter how insignificant it may seem to others. Funny how your perspective seems to skew when its your experiences (ie, I would never trade Braydon's structural issues for a child with cancer or heart issues or critically life-threatening problems - it's a different set of circumstances altogether). Your definition of "normal" changes with each experience. Our "normal" includes back surgery every 6-8 months, and various other medical appointments in between. "Normal" for us may be different than someone else's, but that's okay too.

Many gentle hugs to Sheena and to you, mom. You are doing great.

[Sherie]

I'm so sorry to hear he's still having problems. I hope he has a full recovery soon. I know it's difficult for us as parents to bear, but I never forget what these poor kids are enduring, I always keep myself in check with that thought. We do each have our own battles, but in your case, you have to face them over and over, you must be one tough cookie by now. My son has had 3 eye surgeries and we're not sure he'll ever be 100% ok but I'm learning not to live in the future and take things day by day.

Hugs to you too.

[laurieg6]

Carmell,
You really have been amazing the way you're able to help others while you are going through such intense health crises with your own child. I find that when I'm the most worried, it can be hard to offer much to others but you are always there, offering advice & support. I'm so glad to hear that Braydon's leg is improving but I'm sorry the recovery isn't going more quickly. When is his next back/VEPTR expansion surgery? Can that be put off until his leg is much better?

Sherie,
You are doing a great job too & thanks for all the updates. I wanted to mention that for the first week or two after Alexander came home from the hospital, I woke him up at night to keep up with his medication schedule. It was really worth the sleep disruption because he never woke up in excruciating pain. We were able to keep a steady flow of the pain meds & he stayed relatively comfortable. I don't know if you're already waking Sheena at night, but if so you could try doing it a little earlier maybe - before the 4am time when she wakes up miserable. Hang in there.

[Carmell]

Thanks Laurie. I'm actually the opposite - I tend to do better emotionally by sharing and "lecturing" others when having a mini-crisis at home. It's therapeutic for me to concentrate on others rather than wallow in my own problems. Yes, I'm wordy. The more stressed we are at home, the more I ramble online on the various email lists/messageboards I post to. The secret is out - I NEED you guys. I learn so much from other people, and hope to share with new families in the beginning stages of these journeys - scoliosis tops the list of "issues" for Braydon, but it isn't the only thing... we've done renal (kidney) issues, spinal cord issues, leg/foot issues, GI issues, etc. Scoliosis is our focus most of the time, especially with repeated lengthening surgeries for the VEPTR devices. He is scheduled for his next VEPTR expansion on Dec. 27, but we will probably push it back to at least February, if he can tolerate that. His body needs a rest. His ortho won't be doing surgery in January, so if it isn't done in December, we MUST wait til Feb. Cross your fingers he doesn't have any problems during January. See? I'm rambling... must be bedtime.

[laurieg6]

I'll cross my fingers & send really positive energy/vibes for Braydon to be able to wait until February for his VEPTR expansion & for his leg to continue to heal as quickly as possible.

[amae28]

Sherie,
Thanks for posting about your daughter, it sounds like she is doing pretty well considering all she's gone through... and it's nice to hear from someone who has the same surgeon as me! I will probably be asking you for more advice when the time gets closer. Did they take bone from her hip or is where it's hurting where there was a drain? I was told that I am getting bone graft from a sort of synthetic bone protein (not from my hip), i forgot the name of it. Good luck with everything, keep us updated!!

Carmell,
Prayers for Braydon! You two have gone through a lot and I can only admire your commitment and his will.

[flowerpower]

Carmell,

I've never thought of your posts as rambling...to me you are one of the most level-headed and informative people on this forum. I have learned so much from you. Many parents, like myself, have first come on this forum in a panic, and you've always calmed us down with what I think of as the Carmell "mantra"; "relax, take a deep breath, scoliosis is rarely an emergency situation". I'm not being flip, I repeated that to myself many times when I found myself getting worked up over the situation. I wish I could help you as much as you've helped me.

I wish you and Braydon all the best, sending good healing vibes your way, hope all goes well with the next procedure.

Renee

-

[Sherie]

Abbie

Sheena's having pain in her right hip which we assumed was from the drain sight because there's a hard lump under the skin. The pain is starting to ease up a lot, it mostly bothers her at night. She's been doing much better since yesterday. I also gave her a shower and washed her hair, that made her feel a lot better.

She did not have a bone graft, Dr. Lenke also used the BMP on her. Her back doesn't hurt often, just occasionally she'll get a muscle spasm. I have photos of her back if you'd like to give me your email address in a PM. I'm going to post her xrays here not her photos because she's very modest and probably wouldn't like me flashing her back all over the internet.

By the way, I was way off on the kyphosis, her's was only 46 deg. She looks perfect all the way around. She grew 2 1/2". I was very pleased with the care we received at the children't hospital and by Dr. Lenke and his fellow, Dr. Piklemann. There was an issue with the pain, but everything is good now. Just make sure they overlap your oral pain meds and the morphine pump.

[LorDon]

Well said Renee. I second that. Carmell, you are such a wonderful person who offers so much support and information on this forum and I always look forward to reading your posts. Your positive outlook is uplifting. Are you busy on December 12th? I'd like to pack you in my suitcase and take you with me to Chris' surgery! I'll need all the help I can get to get through his surgery. You must be such an incredibly strong person. Sending Braydon healing thoughts and a big THANK YOU to you for all that you do for everybody on this forum.

Hugs,

[MATJESNIC]

I, too, would like to be part of the Carmell fan club. I appreciate all of your advice and especially your caring. I think about Braydon often and pray that the next months go smoothly. Thanks for all you do.

Sherie, I think the whole thing with pain is never perfect. We had plenty of screaming and crying episodes at CHOP when Nicole was in pain. It is a lot of trial and error because we don't want to over-medicate them. We don't want them sleeping all day and developing infections. It is not easy.

If you are like me and Nicole, each day we woke up we were so happy to add another day to our port-op chart. If memory serves me, you should be about two weeks!!!! If so, she is turning the corner any day now!!!!!!!

[Sherie]

Melissa

That's very reassuring to me, you do wonder if it's just your child going through this much pain. Today is 2 weeks ago that she had surgery, I can't wait to turn that corner. She is doing better each and every day, as long as we keep moving forward, I'm happy.

Sheena's tutor is coming today for the first time. I think it's probably too early but wanted to give it a try. Her mind is jumbled from the pain meds, she tried to sit down and write (she's working on a novel) and just couldn't think straight. When were you're kids ready for school work?

[MATJESNIC]

I am pretty sure we waited until Nicole was 3 weeks. Then she went back to school part time at 4 and a half weeks. Full time a week after that. So she only had 5 tutors come out 3 times each.

[Carmell]

Sending a HUGE Thank You to everyone for your comments. I'll do my best to live up to them

I would LOVE to be at Chris's surgery on Dec. 12 - a cross-country trip would be fun! ROFL. I wish. Know that you will do great. The anxiety and anticipation BEFORE surgery is often the worst part (I know those parents still in the early days/weeds of recovery don't believe me yet...). I still have to consciously tell myself not to worry about things I have no control over. Much easier said than done. Please keep us posted on how things go for Chris.

Sherie - good luck with the tutor. Hopefully Sheena will be able to at least get a feel for the work she needs to catch up on and be able to do what she can, as her body allows her. She's doing great. Hopefully the Holiday Season will bring much peace and a smooth recovery to her. And a Very Happy Holiday Season to all!