Cody home from hospital

[Guest guest]

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)