Today was another challenging one for us. Logan's tummy is tremendously distended from the enormous amount of fluid he's retained over the past several days. No one can tell what exactly caused the retention; the two potential culprits are either the c-diff or the inflammation in his gut. In either case, he's retaining liquid because his vessels are leaking it into places where it shouldn't be -- eg, the stomach cavity, the area around the stomach, the intestines, and so on. And as a result, he can't just pass it out via urine. Eventually, his tissues will have to reabsorb it, and then stop retaining. It's proving a bigger challenge for his little body than we'd like.
He'd actually managed to go for about 8 hours without spiking a fever, but ironically (groan) that ended as his morning nurse (Lisa) was preparing to give him his platelets. He received the Tylenol and Benadryl, and when she took his temperature, it was at about 100 even. A half hour later, it had risen to 100.2. Another half hour later, it was up even more. I think it topped out at roughly 101.3, but given that the whole 'hey, well at least he hasn't had a fever in 8 hours!' thing was our one piece of good news in recent days, it was... disappointing to see his temp up yet again.
His respiration rate is still ridiculously high -- frighteningly high. I had more than one moment this afternoon when I looked at him and wondered how long his little lungs could continue to labor at such breakneck speed; how much more he could possibly take. He's been taking an average of 70-80 breaths a minute, which is about 50 too many for a 4-year old. He's having to work extremely hard because the extra fluid is pressing his stomach against his lungs, seriously limiting their capacity and forcing him to take short, rapid breaths. (Mommies who have carried babies, you know exactly what I mean by this: Think 40 weeks pregnant.) The only reason he doesn't hyperventilate as you and I would is that his pH levels are screwed up. (I asked the resident Dr. Cute... er... George about it this afternoon, since I wondered how he wasn't light-headed from taking so many gulps of air.)
He was a tad bit more interactive today; at least, as interactive as one can be while frantically breathing. We worked on a puzzle and watched a lot of that nouveau Scooby Doo that airs on Cartoon Network. He dozed a little, but not much given how exhausted he must've been from the extra respirations. And he begged for water and food. He's still NPO since his fluid balance is SO off right now (he's taking in a LOT more than he's outputting), so all he could have were small bites of ice at a time. And even then, I couldn't just hand him a cup because we're supposed to keep very detailed notes on his intake. He was very irritated over not being allowed a cup of ice water with a straw, and very, very irritated when I wouldn't let him order lunch at 4:30. He implored me to hurry up and call because 'the wunch pwace will cwose before we can order!'
That was painful to hear, but the MOST painful line of the day (and maybe of the entire last two months) came earlier on. He'd just been to the restroom, and I was changing his pants. He saw my ice-filled McDonalds cup (did I mention how awesome hospital ice is? It totally satisfies my pregnancy-induced dirt pica for some reason) and assumed there was water inside (though nope, just ice). He looked at me pathetically and croaked 'I want to buy some of your ice water'.
How can that not break your heart? It was like an ice pick (no punniness intended) in mine.
Adam's dad came to stay with him so Adam, Abby, Isaac (who drove up from P-ton) and I could go to dinner. It feels weird being in restaurants now; I feel Logan's absence acutely. It feels wrong and uncomfortable and painful, even when Isaac acts crazy and laughs and gives me big, unsolicited 2-year old hugs.
But anyway, the big news of the day that I must be thankful for, even if it's tiny and even if I'm scared to pieces that it'll reverse itself tomorrow, is that his nurse (Mary Jo) drew a CBC this evening. After I'd put Abby and Isaac to bed, I checked my email and had a note from Adam that exclaimed '.6!' His WBC count finally took a tiny little step in an upward fashion. Given the past few days, I'm scared to be enthusiastic about anything at all, but I want to rest in that extra .1 this evening. I want to hope that the next few days will see a meteoric rise.
I want to believe; help my unbelief.