Chandra's Journal
December 5, 2005
11:55 PM
We’re “home”! They discharged Canon today around 5:00 or so and we wasted no time getting out. We actually were not totally prepared for them to let us go and didn’t have any other clothes for Canon at the hospital. So as I followed Drew through the hospital carrying Canon in his baby gown, who was resting his head on my shoulder with his blanket, we probably looked like we were bustin’ him outa’ there!
It was good day for Canon, really. He and I went to the playroom this morning and Julie, the child life partner, helped us fingerpaint on a coloring page and then right on the table! Tomorrow I think I might take him back sometime between 11 – 3 because Santa will be there, and seeing as how we can’t take him to shopping malls during holiday season, it might be our only chance to sit on Santa’s lap this year.
There are a lot of precautions we need to take with Canon. I knew we needed to be careful, but I didn’t realize how serious it is. If he comes into any contact with a child who is carrying chicken pox or flu (even if the child doesn’t know about it yet), they will hospitalize Canon and give him IV medications (called VZIG – varicella zoster immuno globulin; I know it sounds like I’m making this stuff up); so we have to be sure our friends know to let us know if their child ever comes down with a rash or anything and Canon has recently been in contact with them. He absolutely cannot get thrush (a fungal infection of the mouth common in infants) because it can spread down his throat and, because of his suppressed immune system, go all the way down and infect his new liver. Viral infections are especially dangerous to Canon because his body will be almost helpless against them. Now, he takes medications to address these things. Here… these are his current meds and their purposes:
- Prograf – immuno-suppressant; prevents rejection
- Cellcept – immuno-suppressant; prevents rejection
- Prednisone – immuno-suppressant; prevents rejection
- Magnesium – mineral supplement because the Prograf lowers the mag levels in his blood (if it drops too low, he could have seizures)
- Ursodial – thins the bile that flows through the biliary ducts in his liver (makes the liver not have to work so hard)
- Valcyte – anti-viral to prevent CMV
- Bactrim – anti-biotic to prevent a certain kind of pneumonia
- Aspirin – blood thinner
- Prevacid – prevent upset stomach (all the immuno-suppressants are really hard on his stomach)
- Nystatin – prevent thrush
I did that off the top of my head; I’m getting better. Basically we give him the immuno-suppressants to protect his new liver from being attacked and we give him the rest of the meds to protect HIM from the effects of the immuno-suppressants.
He did come home with the central line still in because we have to do blood draws on Wednesday and Friday so it will be easier on him if they don’t have to stick him anymore this week. You know how you pick up a toddler under their arms? Well, picture where your right thumb would be and that’s exactly where his central line actually goes into the vein. So it’s very hard for me to pick him up because I’m SOOO careful with that spot. And I’m VERY protective of his scar. He turned around on the couch and slid down on his tummy until his feet touched the floor, you know, and I freaked out thinking he was putting all that pressure on his incision. And when he leans on the coffee table, it’s right on his scar. It hasn’t seemed to bother him, but it scares me that those spots are so vulnerable right now.
Well, I can hear him moaning over in his bed. I’m going to go check on him.
Chandra