Bonni - There's an update today on the Powder board.
The news seems good, but I think Erik's kind of beat. So here it is, on his behalf:
Tues ~ Thurs update:
I absolutely GOTTA get some rest, so I'll be brief.
Continued "speedbumps". As I mentioned above, we decided to ditch the PD. (Peritoneal Dialysis) His first round of hemodialysis went very well, we took a liter of fluid out of him. We did the same this morning ~ another liter. (Thursday)
Which means that the hemo IS working much more efficiently, but we're not getting the Lab results we were hoping for. His counts are still low, still losing too much blood, and he's still having extraordinary stomach pains. We did an ultrasound on his stomach last night, but it didn't reveal much other than a lot of air and fluid is his digestive system. We had to do a CT scan on him this afternoon to rule out a couple other suspects, but fortunately, it came back clean.The culprit SEEMS to be colitis, which is inflammation of the digestive tract ~ Intestines, stomach, bowels ~ and by God, when my boy does it, he does it right. So again - we're keeping our fingers crossed that it'll clear up in a couple days & that'll be one less thing to worry about. He did eat a couple bites of hot dog & macaroni n' cheese yesterday, which he kept down for several hours, but it came back up last night. They did another dialysis this morning, which went ok ( I could only bear to watch about 20 minutes of the 2 hour process. Seeing his heart rate bounce around like that was a bit much for me at this point.)
They decided to run him on a smaller hemo machine that runs continuously. (They refer to the big machine as the HOG.) This machine is much smaller, but will run 24/7 until his kidneys decide to show up for the party. In the meantime, they're also giving his stomach a couple days to clear up by shutting off his feeding tube & giving him a high-calorie solution through (yet another) IV. Kind of a neat process, considering they're trying to pull excess water OUT of him. But the machine does it all ~ Cleans his blood, gives him fresh red blood cells and pulls all the fluid, leaving behind only the caloric benefit of the solution. Heart breaking to watch, I'm due for a panic attack any day now, but interesting medicine nonetheless.
Momma just called & told me they had just removed the PD line from his stomach and the remaining fluid looked cleaner than they thought, so that's good news. We don't need an infection on top of everything else. She's there with her Parents, Nik's grandparents, and he's apparently MUCH happier & talkative than he's been yesterday or today. I'm hoping that will relieve some of his stomach pain. It's what's been causing him the MOST pain. Maybe between removing the PD line & the colitis clearing up in a couple days, his bright & happy personality will start coming back too.
One thing that did make Mom & I feel better ~ A couple of the Nurses were taling with us & they both agreed that Nik was one of the most secure kids they've ever seen in the ICU. He knows that we're never gone for long, but even if we have to step away for awhile, we'll be back soon. So I guess that's one thing I don't have to beat myself up over. Guess we've done at least THAT much to make him a better & stronger person. Knowing unconditional love is a good feeling.
He's also comfortable enough & confident enough to speak up if he needs something. The Nurses that get Nik for their shifts are always talking about what a trip he is. Last night while I stepped out for a smoke, he started calling "Nurse, Nurse" (in a cute 3yr old kinda way)... Well, he was watching his favorite movie, "Mighty Joe Young", (about a giant gorilla)and there's a scene where there's a Veterinarian taking care of Joe ~ Well, Nik wanted to point out to HIS nurse that there was a Nurse of TV taking care of Joe! He said "See? Nurse!"
She got quite a chuckle out of that..And it made me happy to see that he's his usual observant self. Amazing to watch, actually. Just by watching, he had actually figured out the PD routine. Knew that when the nurse came in & filled the bottle, the water was going to go in his tummy, and knew when the alarm went off that the water was coming out of his tummy & he was gonna fill up the bag. Of course, he explained this process to me one night while I was half asleep at his bedside. Kids are sharp little people....
Still fighting this nasty thing, but we're hopeful that our agressive attitude will pay off soon.
Thanks again all, I'll update again soon. So much for being brief. You should all be grateful I'm not leaving you voicemails.
edit: Tomorrow's my Birthday ~ Is is wierd to want a diaperfull of piss for one's birthday?