Surgery 2/11/02

[alyssasmommy]

Hi all,

I haven't been here in a bit, but just wanted to say that we are leaving for Texas on Saturday for Alyssa's 3rd surgery - the Capsulodesis with Dr. Nath. This trip is a little harder for us, as Alyssa is now 4 years old (going on 16 LOL!) and she is really verbalizing her feelings of not wanting to go, and NOT WANTING A SPLINT! We have been open and discussing this trip with her, and lastnight we both cried together because she has so many fears, unlike the prior surgeries when she was really too young to know. I have read the posts on the Capsulodesis and hear that it is much more painful than the Mod Quad. Can anyone give me any advice that I may need from here out?

Please keep her in your thoughts on Monday the 11th along with the other children who will be having surgery.

Thanks! I will post when we return.

Sincerely,

Jody Gallette

[blakesmom]

Hi, Jody...Blake had his capsulodesis and bicep lengthening done 1/28 and I too was worried about the pain issue. The 2 nights in the hospital were a little rough, but once we got back to the hotel, he slept great and has been doing great ever since. He hasn't had any pain meds since Sat., and that was 5 days after surgery. He has been running around just like before. Blake is also 4. He said he doesn't want his friends to see him in his splint, but that was just one day and it is no longer an issue. I'm sure that Alyssa will be fine. I was so worried that I was doing the wrong thing and I didn't want him to be in pain, but he has more than reassured me!! Just a word of advice, the tylenol w/codeine hyped him up big time!!! He just about drove us nuts on the airplane. He usually talks a lot, but he is nonstop energy when he takes it....Good luck and I will keep you in my thoughts and prayers. Crystal S.

P.S. It hasn't all been fun and games, he dreads the dressing changes and scares me how he wiggles around when Daddy is holding his arm in splinted position. They use so much tape to hold the dressing on, he doesn't like it being removed. Now we use no tape and use the roll gauze and wrap it around and tuck it in to keep it in place.

[m&mmom]

You're in our thoughts.
Cindy

[francine]

Jody- I can't believe the time has come! And it was YOU that helped me so much in letting me know about the CT scan! We are truly indebted to you for your advice!

Jody- about the pain - you can get alyssa a PCA pump. This is "patient controlled anesthesia". Tell Dr. Nath about it when you see him and he'll set it up for you the morning of the surgery (if it's what you want to happen). Normally they give your child a shot of morphine in the IV and I think it's every 4 or 6 hours (forgot already). Usually it doesn't cover that whole time period, so the child drops down into major pain...then gets another shot of it - bounces up and then drops down again...

The PCA pump is a pump that they attach (in the recovery room) to her IV. In it is that one big dose of morphine. They give you a button. You're allowed to press the button once every 10-20 minutes (depending on the setting the doctor decides) and it delivers a very small dose of morphine into the IV. So she will be getting many small doses of morphine. The pain level never drops down (unless you stop pushing the button) so it keeps a child more stabilized / pain free. You cannot overpress and overdrug your child because there is a lock mechanism on the pump - the machine keeps track of time - and it opens the lock only when the prescribed time has passed.

Maia did terrible with mod quad - was on the ceiling with pain. I wasn't going to allow another surgery unless there was something done for her pain. This was just perfect. She actually needed less medication then before - came off the medication much earlier and was less fearful and upset because we never let her dip down. It was one of those compassionate miracles.
What do they say? "Dont' leave home without it?" Maia will never have surgery again without a PCA pump!

Has Alyssa seen the new building at TCH - if not - want to show her pictures of the new rooms and such on my TCH page?

Will it help at all if she seems Maia's surgical pictures? you take a look first ok?

Maybe child life can help alyssa with her fears? or even a counselor there?

I will keep you all in our prayers. I hope that things go easily for her and for you.

big hugs,
francine

[francine]

Ruchel Kraut will be there with Eli and Karrie with Kyle....I know there's more but I can't think right now...

[admin]

My son Justin (5) just had capsulodisus, bicep tendon lengthening and pectoralis release. I was surprised how well he did. He was most uncomfortable when he came out of anesthesia. He was very aggitated and was screaming for them to take the splint off. During the first few hours he had a few shots of morphine; by nightime tylenol with codein. He had the surgery on 1/23. We flew home on 1/24 (he slept the whole ride) and asked for his last pain medication on Saturday morning. He went back to school on Wednesday and is doing wonderfully. Kids are so resiliant. Any questions, please feel free to write. I will be thinking of you. Good Luck!

[Georgeann P]

We will be thinking of you next week. Best wishes and Good luck!!!!!

[Mom of Kelsey]

Could you tell me what is the capsulodesis surgery? My daughter had the mod quad done and we go back to TCH in July to talk about doing a surgery for her elbow? and I have been reading about this capsulodesis surgery but am just not sure what it is on and what it is for? thanks Denise

[Karrie -- Md.]

Jody, My son Kyle, also 4 will be having the mod quad on Feb. 12. I wish you all the best with your daughters surgery. I pray everything goes well for her with minimal pain issues. I hope I get to meet you in person. If you need to talk or just need a hug from someone who knows what your going through, just search for me. Take care & best wishes.
Karrie McDermott from Maryland