So the good news first ... the blood transfusion went well with no complications (just like last time). Not sure why his body is so weak and overrun with infection that he NEEDED it, but he did.
He liked that transfusion so much that today he is sitting up and playing with his ipad. He's mostly back to himself ... except ...
for periodic bouts of very bad pain. I have some friends who are nurses here and they were here for one of the more mild episodes. He starts to sweat profusely, he increases saliva, he starts screaming "Owie help me" and is generally distressed. The one nurse had gallstones when she was pregnant and she said it looked like that kind of pain to her. (He doesn't have the stones, but the incredibly inflammed gallbladder.) Then the episode is over and he goes back to playing.
I got the blood results this morning and they look like you'd expect from someone who was very sick and then got a transfusion. Hope it's enough to keep him stable to fight this infection.
The night last night was long and hard. It started with him not able to go to sleep (it was just after the transfusion and I think it made him aggitated). Eventually he did sleep, about 11:30 pm and I decided it was my chance to slip away and get a shower. (Let's just say you should be thankful you weren't here to smell me yesterday.)
I was only gone a few minutes (maybe 10) and when I got back to the room, he was desatting. Now you have to understand, he was at 100% this whole time. He's never been below 98, even when he was non-responsive. He tends to go from "Fine" to "crash" because he's compensated for so long. So I did my usual thing of rearranging him, suctioning him, making sure the lead was on right, etc. (All the trouble shooting things.) And he was still dropping. Called for the nurse and she got the Respiratory therapist to come and give him breathing treatments. They seemed to help. The last thing we need is a respiratory illness on top of all this! And he tested positive for Rhinovirus (the virus responsible for the common cold, but can turn into much more).
I was up often suctioning and repositioning him. At one point, the nurse got scared and ran in here because he was coughing/choking and couldn't catch his breath. But this morning, after he woke up, he's better able to manage his secretions and has been at 100% all morning. Keeping a close eye on this.
Got the ultrasound report back. Basically no change from Saturday's. There is still a very inflammed gallbladder. There is still fluid (that shouldn't be there) outside the gallbladder. This is after 5 days of draining it. Waiting for the doctor to see what their plan is with it. So far, it's just to keep him on antibiotics and wait. I'm not so sure I'm comfortable with that plan since I know this thing could rupture easily as he has all the stages of advanced acute acalculous cholecystitis. I'm not convinced that it's not a slow leak into his gut in fact.
As the day drags on, I'm hearing more and more congestion. He's starting to "rattle" and that is NEVER a good sign. He's doing fine still and we must keep it that way.
Talked to the Doctor in the ICU and she was blown away at how alert and responsive he is today. (Blood makes all the difference!) She felt he was stable enough to go to the floor tomorrow as long as he is monitored pretty closely. I'm good with that. I will have a toilet, shower, bed and refrigerator there. (So HEAVEN compared to here.) And I know the signs to watch for.
The GI doc is trying to stabilize him and then get us to a motility expert. She said there are only like 5 pediatric ones in the whole country. I'm liking that she is taking this seriously this time. (Last time they didn't... how we ended up at Shands.) We have a lot of thoughts circulating.
"Doc" stopped by to see me and I told him my concerns in a round about way. He said, "I hear what you're thinking and I dont' have any answers." But at least we were still on the same page again. If the night goes well, we'll be transferred back to his service where he makes the final call on all these things. I like that because he has the whole perspective of Manny over time, how sick he gets, how fast he crashes, etc etc.
Bottom line is right now, there is an infection in his body (not his blood thankfully) that is raging out of control. It's causing pain, blood labs similar to sepsis, etc. We don't want it to get ahead of us.
Tonight, the surgeon stopped by. He wanted to come earlier but got swamped. He said that he and the Infectious Diseases doc were discussing that the gallbladder IS the only source of the infection raging in his body. He suggested it come out. The surgeon said that he is ready to discuss that possibility with the team tomorrow.
He will talk to Cartaya, the GI, Infectious Diseases, etc. and see if that is the best idea.
In the research I've done, they often find cholecystitis as an incidental finding while looking for something else. In that case, there are no symptoms, so no need to remove. Typically a round of antibiotics and it's all back to new. But in cases where there are symptoms, I can find very little evidence for the wait and see method.
Saturday the gallbladder was enlarged. Tuesday, it was bigger. They've drained tons of fluids out of him. In fact, he left last week weighing 13.2 kilos. Admitted (4 days later) at 13.8. Tonight he's 12.9. (And for those who don't "speak" Kilos, that says he has lost almost 2 1/2 pounds in 5 days.) I am telling you, they drained a LOT of fluid off of him. And yet, the gallbladder is still just as inflammed or "hot" as they call it. It's akin to an appendix about to burst. And the results are similar if it does.
As I write this tonight it's 9:40 pm and he's finally asleep for the day. He didn't nap, he was awake all day! It was a good day. The monitors are showing his pulse rate is slowing down. Not worried yet because maybe it's just a sign of his pain reducing and he's not as distressed. On the other hand, I can't help but consider it could be something else. Time will tell. And I love that he's on a monitor so we know instantly if something were to go "wrong". But normally he sleeps around 120 when he's well, not stressed. And it's around 90 right now (more typical for his age, but not typical for him).
His blood pressure is low and dropping. I'm hoping this is a GOOD thing. A sign of good things to come and stability. But my Mama gut says nope ... it's going to be a long night. Praying I am wrong.