Update on Ciara

[Guest guest]

Hello everyone, it has been a while since I last updated you on Ciara's

status. Here is what has been going on lately:

Ciara ended up being out of the DBB for one week straight (no casts either)

due to the severe pressure sores that she had bilaterally. She then went in

for casting the week before Thanksgiving in order for the sores to heal. Due

to the holiday, Dr. Dobbs figured she would be ready on Dec 4th for the DBB

again. We came back to Shriners that day to remove the casts and try out the

DBB. Due to my lack of brain cells (seems to be a pattern lately) I left

her DBB at home. Dr. Dobbs said that he thought her feet looked " ok " and to

try the DBB that night when I got home. I didn't like that idea and I don't

think his nurse did either from the look on her face when I glanced her way.

Against my better judgement as a nurse myself, and as Ciara's mother, I put

the shoes on that night around 7 pm even though I thought her sores would

not do well with the pressure again. They were not healed all the way, there

were two scabs.

Ciara screamed from 7 pm to 1:45 am (off and on, like fall asleep and then

move her feet and realize she had the DBB on and start wailing again) when I

took the shoes off to check her feet. Poor baby was screaming for a reason.

Her right heel was bleeding again and the scab had fallen off and the skin

underneath the scab was raw. I threw the shoes across the room and emailed

Dr. Dobbs in the middle of the night asking him " Ok, what time do you want

to see us at Children's for another set of casts? "

(He had said that if she didn't do well for whatever reason that I could

bring her to Children's that Friday if I needed to)

Back in the casts again for another two weeks. Took those off on Dec 18th

and saw the brace shop at Shriners. A guy there named Eddie (awesome guy)

cut the back of the heel out of her shoes on the DBB and put some foam type

padding there. They look great! They look almost like sandals and they look

like they were meant to be that way~ I was impressed. The bar that Ciara

had on the DBB from Children's was yellow and if you look under Ciara's

pictures in the CFPics you can see how straight across that bar was. I think

that was the root of most of the evil problems that she had. Dr. Dobbs told

Eddie to throw that bar away and give her the red " adjustable " bar from

Shriner's. BIG DIFFERENCE!! Ciara has not had any pressure sore issues

whatsoever...just the usual adjustment that I think everyone else seems to

have gone through with their babies (from what I read on this site). This

bar curves a lot more than the yellow one that we had putting pressure on a

different area of the feet than that yellow one did. Wow did I wish I had

noticed that the yellow bar was different than other kids red ones' back in

November!!

There are two questions I have for everyone now. Ciara's left foot (worse

one from pressure sore) is healed completely but to the side of where that

area was, everytime I take her shoes off one hr a day, I notice that the

skin looks as if it was " pinched " in a line about a half inch in length and

about ======= <--------- this wide. I covered the area after the second

day and it is still there. I use a fresh bandaid everytime. Anyone have any

ideas on how this could be caused or what to do? I have tried putting the

shoes on in a different order and I have ensured that the straps are on the

same hole and laces are not too tight but not too loose. Tonight I have

tried the " blister block " sterile cushions on both heels to see if that

helps. The right heel still has an area from her previous pressure sore, but

it is not open or anything.

Ok, the second thing is: this foam padding that Eddie put in back of her

heel....is like the packing material that you see in boxes, not the peanuts

but the little mini discs....that is what the heel area looks like. The

problem is this: Her feet sweat and I don't think that padding " breathes " so

her feet are damp. In the heel area when I take her shoes and socks off, it

looks puffy and the skin is wrinkled and paler than the regular color on her

feet, as if she had soaked in a tub of water for too long. After one hr of

the DBB off her feet START to resemble normal feet and then it is time to go

back into the damn shoes. HELP! Anyone have experience with padding that is

not the same as that plastizode stuff?

Let me know anything you think helps.

Thanks!

Gia Shelby, mommy to Ciara (8-1-03) bilateral CF, DBB 23/7 STILL!