Braeden update/advice needed..:)

[Guest guest]

Hi All,

I want to thank you for all the positive emails. I hope to catch up

with everyone this weekend. Braden came home a few days ago after

spending 5 nights at Children's. He still had allot of diarrhea and

just when I thought we were going to have admit him again he started

to take a turn for the better. He was actually himself yesterday.

Laughing, smiling and playing. I took the advice off the listserve

to have his back x-rayed when he was in the ER. The attending

physician didn't want to order the x-ray but, I think she finally

relented if only to have my husband and I stop pestering her.. It

showed a very small degree of curvature to the right of his

vertebrae but, it is way to early to tell if he will have any

problems in the future. The x-ray did show his lower front right

ribs are fused together. The doctor who gave us the info said " It

may or may not be an issue for him in the future " I soo dislike

those answers. So, we will add a Pediatric Orthopedic Specialist to

Braeden's team. Although, with his asymmetry we knew it was

something we would eventually have to deal with. His sister

Delaney, recovered from her bought of the flu at home. I don't

think I ever changed so many diapers, clothes and bed linens in my

life as I have the last few weeks!

Unfortunately last night, just as we we're going to bed Braeden's

pump alarm went off with a flow error. We were up until 1:30am

trying to clear it. We tried coke, warm water and cranberry juice.

I absoluteley can't clear the line. We ended up feeding him on his

continuous drip through his g-port at a reduced rate (He is normally

fed through the j-port). I'm really not sure what to do. I called

Interventional Radiology and they would accommodate us and put in a

new G-J for us whenever we got there since we are two hours away and

on a ferry system that shuts down at night. They actually even

remembered who Braeden was. His tube came out a few months ago when

I was changing his diaper. I couldn't believe how quickly it can

come out and it didn't even seem to bother Braeden. It sure freaked

me out. Anyway, I also spoke to the GI doc and he said since he

seems to be doing ok with the food going into his stomach, we might

want to go ahead with a mickey button tomorrow instead. We had

talked about possibly moving Braeden to a Mickey when flu season was

over (He is on Synergis and) and try to move to a bolus feed in the

spring but, if we do it tomorrow I know they will keep him in the

hospital for a few days to see how he tolerates his feeds and we are

going into a weekend(Limited Interventional Radiology services if he

needs them). Ideally, I would just like to clear the line until he

has another swallow study done and we can keep him out of the

hospital until Spring. I apologize for the length of this email (I'm

actually trying to keep to the short version). So, if anyone has

any ideas or advice on clearing the line or their thoughts and/or

experience. I would definitely be thankful and love to hear them.

I hope I haven't rambled to much. It has been an unusually

exhausting last few weeks. I'm thankful for this listserve and I

hope all are doing well.

Take Care,

Saundra

Mom to Delaney and Braeden(RSS) 16 month old twins.