We're Back!

[NancyP]

Well, we are back from TCH. Kelsey had Capsulodesis on Monday. As she gets older, we have to wait longer for surgery. 12:30 was her scheduled time. We got into holding and met with Dr. Shenaq about the procedure, and then he talked to us about the gracillis muscle transfer for Kelsey. He said to do it this summer! I said ok, but was thinking "no way". Kelsey went off like she always does. Happy, talking, ready to smell the mask! (She has no fear). It didn't take long, and we were in recovery. (She was there 8 1/2 hours before we got a room. Every other child with BPI was in a room before us. I was so angry!) Tuesday she had a little pain while we were in the library, so we went back and got some pain meds and then went to the playroom. We got back to the room and her stomach started hurting and she spiked a 102.8 fever. They called the on call and he said just to give her tylenol, and he would check us in the morning. This was after one resident tried to send us home Tuesday morning. I called Lisa T and she said we were NOT to leave until Wednesday. Tuesday night the new Canadian Dr. that does the gracillis transfer came in and spent a lot of time with me about the procedure. He left in agreement with me that it was too soon, and it wouldn't hurt anything to wait. I was relieved. Wednesday Kelsey was feeling better with no more fever, so we got discharged and started home (we drive). We got to Dallas and Kelsey started with fever and tummy cramps again. I called Lisa Davis, and told her about it. She asked what Kelsey was taking, and she told us it was a 2nd generation penicillin (Kelsey is allergic). Not 15 minutes later, that dr. called me on my cell phone to talk about the antibiotic. HE said it was ok for her to take, but I told him NO. He told me not to give her any antibiotic, and just watch her. WHEW!! I was really glad this was our 4th surgery, not the first. I knew what to tell the dr's and to call one of the Lisa's if I needed anything.

The wonderful thing about the trip is that Kelsey is going to be on the front page of the TCH magazine they put out each month. A reporter called and is doing an article, then a photographer came and took lots of pictures. They are doing a feature story on the BPI clinic. Lisa T called and wanted them to use Kelsey. She is excited that she is going to be a star:)


We are all glad to be home!!

[francine]

Wow Nancy - what an experience. I'm glad you guys are home safe and sound and that Kelsey is doing well. Wanna send me a picture? francine@injurednewborn.com.

How is she taking to the splint? Have you done any decorating yet?

Nancy - you'll want to talk to Ivelisse - her daughter Jocey had the gracillis transfer a couple of months ago...actually she has given me pictures and is writing up text and it'll be on the site soon. It's certainly not an easy surgery.

So what's Kelsey's time frame for the splint? Everyone gets different length of time so I was just curious.

anyway I'm sure you are glad the surgery part is over and now it's just a matter of time for the splint. I hope things go well,

God Bless,
francine

[Tessie258]

Glad that hurdle is jumped!!! I hope Kelsey will recover quickly!!!
T.

[NancyP]

She is tolerating the splint just fine. 8 weeks full time, 8 night only. Dr. Nath came in during splinting and did rounds in there. He told us not to take it off for any reason for 3 weeks, then off only to bathe. We are working on the decorating. I will send a picture for injurednewborn.com when we are done.

Francine- I have been talking to Ivelisse about this one. She gave me great information so that I was semi-informed when we talked to the Dr. Jocey and Kelsey were in the hospital at the same time last summer. Such a wonderful family. We were blessed to meet them. There were so many people in surgery this time (9 for caps/mod quad on Monday) and a lot of them didn't know about this site, or any of the others. I passed on some information for them so that they can check it out themselves. I am always amazed at how many families are there for surgery each time we go.

Anyway, thanks to everyone for the prayers and good thoughts!

[Jocelisse's Parents]

Hi Kelsey and Nancy

This is Ivelisse. Sorry for do not went to visit you. I expend the whole week on my bed. First, I got the flu and then a respiratory infection. Also Jocey and Janey were sick too. Was a nightmare week.

I hope Kelsey is doing better now and without pain. When Jocey had the mood quad we bough four pillows to make her feel more comfortable all the time.

About the Gracilis Muscle Transfer is great you meet Dr. Klebuc. He is very professional and responsible. Great he do not want to do the procedure this summer. This surgery is the worse one, is a high risk surgery. I think it have to be performed to kids with mature mind, over seven years old and over 50 pounds.

The surgery was done to Jocey when she was 5.6 years. We prepare her for that surgery but it's not easy to stay five days on a bed without any kind of movement and your arm tied to the bed rail. The worse part was when she wants to do pee. She didn't want to use diapers because she said "I'm a girl not a baby". That was a trauma for her. Also she has been with a severe constipation, since she born.

But you could see the results now she is moving all her fingers a little bit, but now is only three months since the surgery and Dr. Klebuc told us the kids who had this surgery usually start some improvement six months after the surgery. Jocey started to move the index 10 days after the surgery.

Update us about Kelsey. How she is doing now at night time?