Keeping the good vibes coming.
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Keeping the good vibes coming.
Wishing all of you the best. Be sure to take care of yourselves, as well as Nik, right now. You'll be more help to him if you're rested up.
If ya need anything, know we're all here for you!
M
bumpity
"everone up their post count by one today" -Endlessseason
ah yes... ^
Bump ^^^
^
My thoughts are with your child and your family EP.
I've upped my post count everybody...
So........ UP YOURS!!! :D
But seriously, a note to Erik--so glad for the updates and somewhat improving news! Keep the faith.
^^^^^^^
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Dropped way back.
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Update & BUMP
Thanks!
bump...
glad to hear that things are starting to look up, Erik. Still thinking and praying for Nik and your entire family
The only reason I go back to Powder:
"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?
double edit: Dex, don't answer this."
STAY STRONG EPS FAMILY. YOU'VE GOT MANY HEARTS WITH YOU.
Prayers sent again!!
and again.Quote:
Originally posted by Buzzworthy
Prayers sent again!!
^
Hope the little guy gets through it okay.
Always tasteful, am I.Quote:
Originally posted by Foggy_Goggles
edit: Tomorrow's my Birthday ~ Is is wierd to want a diaperfull of piss for one's birthday?
double edit: Dex, don't answer this."
Well, I guess not. Hope things improve considerably by the next update...
[QUOTE]Originally posted by Foggy_Goggles
[B]The only reason I go back to Powder:
edit: Tomorrow's my Birthday ~ Is is wierd to want a diaperfull of piss for one's birthday?
double edit: Dex, don't answer this."
Happy Bday and no its not weird to pray for a diaperful of piss for your birthday...in your case...its a blessing...continued prayers out to you and you boy and family:) :) :) :)
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Schtupp ^^
Getting up the good vibes for you and your son. How's the little fighter doing?
'Scuse the paste update:
Update 6 ~ Week 2
Yup - As of tomorrow, it's 2 weeks. Never would have imagined it. Well - Nik's still fighting this thing. We've done 2 full dialysis cycles in the last 2 days & removed 3 liters of fluid from him..He's tolerating it pretty well, other than high blood pressure due to the hypertension (because his kidneys aren't working yet) and the fact that he's retaining a lot of water still, so it elevates the blood pressure. He's taking meds to keep it down, and it does drop to well within regular limits during & for several hours AFTER the dialysis.
We had to completely STOP his food intake for a couple days to give his stomach a chance to heal & we finally got him to eat a good dinner last night. Kid was revenous. Guess I would be too if I hadn't had a meal since Thanksgiving. He kept it down until about 6am this morning, so hopefully we're making some headway with THAT at least. We've had a couple SMALL indications that there was some urine production, but not enough to get the Docs too excited yet. Realistically, we've only had about 6 days of complete dialysis because of all the problems we were having with the other procedures, so we're still praying that we're on schedule with this. Gets discouraging when we're getting ready to head into week #3 and we haven't had all the signs we were hoping for by now, but we do have some time to go before discussing other options. He's certainly complaining a LOT less about his stomach pain, so we're hoping he'll start to be able to et more regularly. Better nutrition should be a BIG help. The last couple days have been pretty good overall, he seems to be in less pain, and he's eating better, so I'll take that as progress.
The plan for now is to just continue with what we're doing. Speaking with the Dialysis Nurse this morning, she said it's not unusual for this process to take 3,4,5 weeks and HAS seen it take as long as six. So we're still doing ok, but obviously, we're hoping it's sooner rather than later.
I'm gonna try heading back into work tomorrow, as I've only got a couple vacation days left to burn before I stop making money & insurance doesn't get paid. Sucks, but I certainly can't afford to have THAT happen. Thank GOD for insurance, because it'd take a lifetime to cover what this experience is gonna cost.
Mom is kinda in a rough spot, cuz if she's not at work, she doesn't get paid. But the BIG bummer is that with the way her Company / Insurance works, if she goes BACK to work she has to commit to a 30hr. week. We just can't make that jump yet though, not until Nik's healthy & back home.
My Company is quite a bit more lenient, and with 8 years in, they're cutting me a lot of slack. I just don't wanna push THAT envelope too far. I lose MY job, we're friggin' screwed.
So ~ not much in the way of NEW developments, just more of the same. Keep on with the dialysis & wait for his kidneys to catch up. Frustrating to see him getting better in other areas, but to still be waiting for the kid to PEE! Man, the Docs weren't lying ~ I'll never be so happy to see a wet diaper.
Birthday? Well, I've officially hit the "getting older" end of the scale, but if I can still act like a kid, it's ok, right? Got a sports trivia book, which I've almost finished already, a balloon & a piece of vending machine carrot cake. Was good enough for me.
Anyways ~ keep the faith and thanks Maggots. (et al!)
Here's to hoping this week brings GOOD stuff!
Talk soon,
Erik