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edit: Yikes, this one's long. Whatever you're drinking or smoking, reload it NOW.
Hey all ~ Update from Friday 12/26 to today, 12/29:
Rough coupla days. Friday night, as I was leaving work at 7pm to go pick up my sister at the airport, I got a call my Aleecia (Mom), totally hysterical.
Without going into ALL the details, something was definitely wrong.
Turns out that Niklas had a siezure. They thought at first that he was having a stroke. Short story is that he'd gone into dialysis at noon on Friday, and over the course of a couple hours, Aleecia could tell that something just "wasn't right". She told the nurse several times that something was wrong, that he wasn't acting right, but the nurse insisted that he was just tired because of the dialysis, and everything was fine. Apparently, he just kept turning his head to the side, eyes just staring off, and everytime Aleecia would try to get close to him, he just got irritated, Not like him at ALL.
The nurse tried to get his blood pressure a couple different times, but he kept getting agitated & fighting with her about putting the cuff on his arm or leg. The nurse told Aleecia to just stay with him & try to get him to settle down & she'd come back in a little while to try again with the cuff. So, Aleecia convinced Nik to lie down with her & take a nap. Apparently, when Aleecia woke up about 2 hours later, she knew something was wrong. He was awake, but virtually unresponsive. He had his head turned to the side, eyes fixated, and he was drooling. SHe picked him up and ran him out into the lobby to the Nurse's station. They grabbed him out of her arms & immediately paged a team of Doctors who took over from there.
They took a set of labs & did a CAT scan which did show swelling on his brain, but the labs apparently showed that everything looked fairly normal. One of the medications they gave him was causing him to breathe erratically, so they had to intubate him. He was rushed back to the ICU & they kept on with the tests.
We were finally let in to see him at about 12:30am on Saturday. By then, he'd leveled out, they'd taken the tube out, his pressures had normalized and was doing better. He was completely drugged out, so he was barely able to open his eyes. When I walked into the room & he heard me say "Hey Buds! (one of my little nicknames for him), he opened his eyes for just a second & whispered a hoarse "Daddy!" & pointed up to the IV bags & then his arm where they'd just started a new IV. It wasn't until that moment that I realized we might be OK. He tried to talk for a couple seconds, but because he was so drugged, worn out physically from the siezure, and his throat all messed up from the tube, I couldn't hear what he was trying to say. After a few attempts at trying to talk, he finally just closed his eyes & went back to sleep. Aleecia was ecstatic to see how much BETTER he looked and as she was explaining everything that had happened, I just completely friggin' lost it. For the first time, it was HER keeping ME strong & telling me that he'd be okay. Without a doubt, the most difficult night of my life.
Aleecia stayed with him Saturday, while I went home & got my Sis & niece settled at our house. He gradually started coming around during the day on Saturday, but he was still acting very agitated, couldn't decide what he wanted ~ God save anyone that has ever tried to come between he & his blankets..But because of the seizure, it threw his behavoir for a loop. He wouldn't allow his blankets on his BED, let alone in his face. They'd tried to do an MRI on him to verify that everything was ok, but he was just fighting too much. Rough day for Mom. He kept asking for me & wouldn't let Aleecia cuddle him, which I know hurt her feelings. I got to the Hospital about 3pm on Saturday for MY shift, but by the time I'd gotten there, one of the Nurses had kinda taken over with settling him down. She was patting his back & he'd finally fallen asleep. He'd been awake since about 4am, so he was just completely exhausted. Again, he stirred when he heard my voice, looked up & said "I want my Daddy" to the Nurse. I went around the bed, started stroking his head & he fell right back to sleep. He woke up later on & was doing MUCH better after he slept for a few hours. He ate very well, he was talking fine, moving his arms & legs no problem, pointing to things, answering questions, etc. Made me feel a lot more confident that he was ok. The Docs said that they THINK it was just a mild siezure brought on by the hypertension. His blood pressure's been doing BETTER, but it's still tough to keep level. It's not getting as HIGH as it was, but those fluctuations are very difficult for the body to regulate. Apparently, it just got to be a bit too much. So far, he's been stable and everything looks like it's going to be ok. Yesterday, he was acting SO much better. If he didn't have wires & tubes sticking out everywhere, you'd never know anything was wrong with him. Docs said they probably going to keep him monitored for another couple days, but they'll likely put him back out in a regular room today or tonight, and there's a possibility that *assuming* everything goes well during the week that he may be able to go home by the END of the week. He's getting that MRI as I type, so within the next couple hours, we'll get a status on the swelling, and identify whether there may be any potential risks / problems associated with the swelling on his brain, etc. They said not to be surprised to see him fluctuate in his behavior, because it'll take about 10 days for the swelling to go away, and it could affect his behavior. But we're hopeful that he's weathered the worst of it & we can get back on track with his kidneys. Now for THAT explanation:
His kidneys have opened up an incredible amount. Over the last 4-5 days, the kid's peeing like a racehorse. The last CAT scan & ultrasound showed that there was an improved blood flow to the kidneys, and they'd opened up a GREAT deal more. Where before we were hoping for ANY urine output, he now at the stage where his kidneys are hardle even slowing DOWN. He's got a soaked diaper at least once every hour or two. Yeah, that's GREAT news, but his labs were still showing elevated creatinine levels, which would indicate that although they've opened, they still have started functioning. It wasn't until yesterday morning that the Doc told me that despite the still high creatinine levels, there are other indications which MIGHT mean that kidney function has at least STARTED. He was very cautious about the was he phrased it, but it's a positive indication no matter HOW you look at it. He did dialysis yesterday, and again did VERY well with it, so we're going to keep that up as long as we have to. I'm not sure how I put it in my previous post, but yeah ~ even though we may be going home by the end of the week, we're still going to be doing dialysis 2-3 times a week. I'm almost more comfortable with him STAYING at the Hospital. Especially considering everything that happened the other night. But again ~ knock on wood ~ seriously. Knock......
......we're past that now & Nik can continue the healing.
I'll update again soon with the MRI results, etc.
BTW ~ Those that have sent PM's, please check YOUR PM's. You've gotten responses, and several are still showing "unread".
Thanks again everyone. Even if you could take a second to whisper "C'mon Nik!" to yourself....Every bit counts & helps.
Erik
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"How full of creative genius is the air in which these are generated! I should hardly admire them more if real stars fell
and lodged on my coat."
Henry David Thoreau, 1856
