6.29.2008

The Scoop on Little Pom

For those who may read L's blog, and not know what's going on, I'm posting all of my email updates about Little Pom here below. He's happy & content as long as they leave him alone, and his numbers are improving, so that's good. LOT'S of people have been asking what we need. Visits are nice, although I can't promise we won't have to kick you out (just ask L!) at some point. Otherwise, $5 meal passes so that we can join him at meal times are awfully helpful. We spent almost $300 on meals our first few days here, before someone clued us in to the fact that we could pay a pittance & eat with Rory. Those are the practical, earthy needs. Other than that, prayers, healing energy and holding sacred space is very, very, very much needed.

Thanks all! Here are the updates so far:

Friday Morning-

Hi all,
For those of you who don't know, Little Pom (my little boy & only child, age 8) was admitted to Childrens Hospital yesterday. He looks, sounds, & feels fine; but some routine testing showed some really concerning issues with his kidneys. RIght now they they are filled with fluid and severely damaged. The Nephrology Fellow here at Children's estimates their functioning to be between 10-15%. She's not sure how much of this is acute & reversible and how much is truly permanant damage. They tried to get a catheter in last night to drain the fluid, but there is a blockage of some kind. What should have been a 5 minute, fairly easy procedure was 30+ minutes of torture & trauma for the kidlet. They never got the cath line in, so this morning someone from the Urology department will be coming in to visit. They will determine whether they sedate Little Pom & try again (we have told them that they aren't doing ANYTHING to Little Pom that doesn't involve sedation or anesthesia after that fiasco) or whether they take him straight to the O.R. Little Pom cannot eat this morning, as a just-in-case, and didn't sleep very well because they didn't even get the IV line in until almost 1am. We got here at 3:30 yesterday afternoon. If anyone wants to visit, we are in room 676 Bed 1 and would be delighted to have the company. Little Pom also hopes that someone will send him flowers, LOL. Anyway, that's all the news we have at the moment. I will send out another email as soon as we have more.

Please hold my son in your hearts. This is terrifying for him.


Friday Update #2-

Okay, they got the catheter in after sedating Little Pom. Kidlet got morphine & valium and was more than a little stoned when he woke up. Good news is that the catheter is draining well, apparently. Head of Nephrology came by and said that there was no change in LP's labs and that at the moment he is considered to be in kidney failure. If it weren't for the urinary tract obstruction, they would already be talking about dialysis, but for the time being, they are waiting to see how much fluid will drain from his kidneys and how much of the kidney function returns after that. From there, it's up to Urology to determine what to do with his obstruction and up to nephrology to decide what will happen long-term. And there *will* be long-term...this is something that he will be dealing with (in one way or another) for the rest of his life. Let's hope that all he'll need is medication, because the alternative would be dialysis.

Sunday Update #1-

So far, we're waiting out the weekend and praying for increased kidney functions. I should have his daily labs back soon and we'll know more then. He's putting out LOTS of fluids (he's on a fairly steady IV dose) which is good...he's not retaining anything thanks to the catheter. He's happy & alert & playing video games, LOL. His IV line clotted over, so they put it into his heplock line. An hour or so ago, they came and installed a new heplock in his other arm (this makes blood draws WAY easier, because it's one poke for all of them...instead of one poke for each) and it was really fast & he was quite brave.

Right now our biggest stress is getting him to take the oral meds. Iron he can swallow down no problem, calcium is yucky, but today I covered the pills in a spoonful of honey, LOL. It was still a struggle, but once he took it, it was okay. So hopefully tonight he'll know that honey makes it easier & we'll have less of a battle. Last night they tried to give him a potassium supplement (strangely for a kidney patient, his potassium was LOW. Usually it's too high!) that was truly vile. We fought and cried and cajoled and threatened and yelled and begged and bribed for nearly an hour to no avail. Finally, the doc agreed to put it in his IV line, but made sure he knew that we wouldn't be allowed to go home until they knew he would take all of his meds- including the yuckiest of them all. Thankfully, the Chief of Nephrology was in today and he says he thinks it's highly unlikely that we'll need the potassium at home. :-)

Nothing more is going on until tomorrow, when we'll have a bladder x-ray and a consult with urology. That's when they'll decide what the next steps are & whether or not he'll need surgery. We'll be here at least until Wednesday, we've been told. I'll let everyone know his creatinine levels (not that I can spell it) in the next update. In the meantime, send him "low, low, low" vibes....low creatinine means higher kidney function!

Hugs for now & thanks for all the prayers.


Sunday Update #2-

Little Pom's Creatinine levels have dropped to 4.4 (from his high point of 6, trying to get down to a normal level of 1), which means that his kidneys are now functioning a bit better. :-)

Keep sending those LOW, LOW thoughts our way!

:-)

1 comment:

Debbie said...

Oh my I can't imagine how you're feeling! I came from Lea's and wanted you to know I have Little Pom in my prayers! Give the little guy a hug from NC....

I'm hoping for good news in the coming week :)