Re: Cody home from hospital

[Guest guest]

What could anyone say , except---OH MY HEAVENS!!

That is way to much.-- How can you even remember all that!! it was even

more I am sure. Well, I do hope your CF Clinic & docs can get to this &

help him . -----and you. I am holding you all in my special thoughts &

wishes. Your precious ----all of you........

Love & hugs,

GrandmomBEV

Cody home from hospital

Well, we spent 4 weeks in the hospital (June 8-July 4th--yep, got our

independence on Independence Day!). LOTS happened, and it was a tough

stay--still struggling. Since we got home 2-1/2 weeks ago, we've been to

the ER 5 times and the clinic 3 times.

At his dr. appt. in May, his CF docs (which by the way are about 240 miles

away, so we travel to see them--will make sense soon!), said that he was

severely malnutritioned. He'd had a nissen when he was 1-1/2 yo, and had a

g-tube placed at that time also. Well, he had begun throwing up and

refluxing again, so his night feeds had to be stopped, as he would throw up

often, and was uncomfortable always. Prevacid wasn't doing a thing for him.

He would refuse food during the day also, as it was uncomfortable--he said

it felt like it was always " sitting right there " , meaning in his upper

throat. He did lots of Boost Plus shakes and Scandishakes, but those were

tough, too. They did another upper GI at that time, which showed level III

reflux. They wanted to keep him then, but I said I needed to go home and

make arrangements first, and we'd be back right after school got out. They

were fine with that. So we came home, and I made arrangements for my other

son, DJ, to go to my parents after school was out, and my daughter would

stay home (she's almost 15). My husband told his boss he would be unable to

travel for work without at least a 3-day notice, so he was home every night.

Cody got to finish out the year with his friends, and go through his award

ceremony for the reading trophy he worked so hard for.

First, when we got there, they determined he was too malnutritioned to do

surgery on, so they " beefed him up " by putting in a J-button instead and

feeding him through his jejunum. Once his blood levels were all good and

he'd put on about a pound and a half, they redid the nissen and moved his

g-tube. They had to move the g-button, since it had " migrated " --in other

words, it was still in the same " spot " it had been placed in, but as he

grew, that " spot " moved--and it had ended up sitting on his lower ribs,

which was painful for him. When they got in there, they found that not only

had his nissen slipped, it had also FLIPPED! It was pretty bad, and they

ended up having to use a large portion of his stomach to redo the wrap, as

the tissues that are normally used were no longer usable. As a result,

afterwards his stomach was VERY small, and could only handle about 1-2

ounces MAX. They put him on TPN nutrition and IV lipids, but he really had

problems. It was one thing after another! The surgeon had put a g-button

in, and he ended up having to go back under and get a G-J tube placed again

so he could be fed through his jejunum instead, and they also placed a new

port then too. I could talk forever about the problems we had in the

hospital, but just use your imagination!! Finally, his regular doctor (we

know the others, too, but love our doc!), came on as attending, and he said

that he felt Cody needed to get home and get settled into his home routine

again. He was getting tired and frustrated being there so long, and had

really begun to fight everything and everyone. We came home on 24-hour

jejunum feedings and 12-hour IV lipids daily, and looks like it will be that

way for the next several months, but at least WE'RE HOME!!

But, since we came home, he has lost his G-J tube TWICE!! Once crawling on

his brother's bed on the top bunk, he caught it and pulled the whole thing

out (and that thing is LONG!!), then we spent 9 hours at the ER waiting for

them to replace it (this is at the local hospital--ugh!). They didn't have

a pediatric size of g-j tube (OMG--it's a CHILDREN'S HOSPITAL for heaven's

sake!!!!!), so they " cut off " an adult size-- " Oh, don't worry--it will work

just fine!! " . Whatever!! A week later, he was playing outside much of the

day, then the boys came in and took a bath. As Cody was walking down the

steps, yapping away at me, he all of a sudden hollers at me, and says his

tube is coming out. The balloon had popped, and didn't hold it in

anymore!!! He was holding it, and my husband grabbed the tape and quick

taped it up against him, and off they ran to the ER AGAIN!! I called his CF

doc, and he said don't let them " modify " another one--just have them put in

a g-button this time, run the feeds slower (ok--MUCH slower!!), and since we

were going to see him in a few days, they would set up to have a new one

placed there at Fairview-University.

To top it off, two days before (on the 11th), Cody had begun complaining of

pain at his port site. It was the day to deaccess and put in a new needle,

and we had also had to travel to Bismarck (200 miles west of us) for my

daughter's skating competition. That morning, I deaccessed the port after

his lipids were done and before we left town. That night, I set everything

up, and put the EMLA cream on his port site. Grandpa took Mark and the kids

out for ice cream while I got his new feeding bag and IV set ready, and by

the time I went to access him, it had been at least an hour and a half.

WELLLLLL, when I went to access him, I took off the Tegaderm and noticed he

was all red and rashy--he is now allergic to Emla!! He said it really hurt,

and just SCREAMED when I accessed it. I was very uncomfortable with that,

but he needed his lipids. The next morning we watched a compete, and

again he said it hurt, so I called his CF doc, and he said take him to the

ER and have them draw some blood from his port to rule out an infection in

it, and to deaccess him and let the port rest until we got the results back.

Those tests came back negative, but he did have a skin infection. He went

on Cephalexin and got a Rocephin shot. After his 3rd dose of cephalexin, he

said his face itched. It looked fine yet, so I thought it was maybe just

dry. I washed his face off to moisten it, but it still itched. About an

hour later, it started getting red and rashy. Well, I myself am allergic to

cephalexin, and that's how it started for me, too, but I was dumb enough not

to realize it and I took one more dose--anaphylactic reaction!! DUH!! So,

of course, I didn't give him any more. He's had it before this and had no

problem, but not anymore!! The rocephin shot seemed to have done the trick

though, as it looked good, but now Sunday it started hurting again.

UGH!!!!! And we were going to start lipids again last night!! So we are

AGAIN waiting for blood tests to come back, and he will be going on some

other antibiotic starting tomorrow. VERY frustrating!!

Ok--sorry this got so long--my hands hurt from all the typing!! But as you

can see, there was LOTS to tell!

Talk to you all again soon!

S., mom to Cody (7, pwcf), DJ (8, nocf), and a (14, nocf)

[Guest guest]

,

All I can say is wow. I would recommend buying your self some wine and

getting a little tipsy but then of course, you wouldn't want to not be on

your toes. Who knows when the next incident is going to happen. We had

the same problem with the J/G tube. Emma pulled it about half way out

within a few days of getting it. Luckily it didn't rip out all the way

and we were able to simply use the G portion of the tube and that seemed

to be fine. She still vomited which was the reason for the use of the J

portion but she gained weight anyway so we never had the J part put back

in. Good Luck with everything, I hope your and Cody's troubles are over.

Keep your chin up.

- mom to the butterfly girls Emma 3 years w/cf and Isabelle almost

5 wo/cf

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[Guest guest]

,

How awful for you and Cody both. I hope that things get MUCH better

for Cody soon, the poor little guy!

Gale