By 1am, we were finally asleep. 5am the nurse was concerned that he still hadn't peed (more than 12 hours). So for the next hour, we worked on what to do about that... bolus? cath him? call the doc? other? Finally, we decided on a higher rate of fluids. He still didn't pee for about 15 hours, but finally did.
Meanwhile, another concern is his very low blood sugar. Typically, a person who is in the middle of eating should have a blood sugar of about 120-150 give or take. 2 hours after food, it should be more like 100-120. Below 70 is the start of people being slightly concerned.
Manny used to do that. Recently, he's been in the 60-70 range while ON food! (His "food" is basically sugar water with a few minerals/vitamins.) So they take blood sugar readings often. The strange part is ... he's doing better on this (basically IV fluids with double the sugar content plus a few minerals) than he has been on TPN. (Shouldn't be.) When we got here his glucose was 66. After 2 hours on the fluids it was 76.
This morning he was sleeping peacefully and was rudely awakened by another blood glucose level. It's just the small finger prick but that's not a great way to wake up! This one was much improved at 106. (And yes, this is WHILE eating so it's still way under what it should be but getting closer.)
|Photo from today, still feeling well enough to play his ipad from bed.|
Thursday: During the night, it was confirmed that this was another false alarm, he did NOT have a central line infection! Yay.
5am, they do a basic blood test for all patients on TPN to see their metabolic status. When Manny came in 36 hours earlier, his potassium was 4.5. This morning it was 2.9. (According to their system, this is a "critical value".) They ran around my room like proverbial headless chickens and got a heart monitor on him and immediately started IV potassium. Why? It can mess with your heart and there are no warning signs, your heart just stops working right.
8 hours later, they took the IV down and immediately did a blood test. It showed his potassium levels were within normal range again. And they discharged us.
This is where the story gets a little tricky. I wanted to go home. Afterall, he did not have an infection. BUT, this potassium level was not stable yet and it greatly concerned me. His regular hospitalist was not there and we had a newbie doc. I wasn't sure discharge was the right call. But I went home anyway.
Friday: I asked my pediatrician for the blood test (BMP) to show his potassium levels. I waited all day for the results! Nervewrecking for sure. 7:30 pm I finally got the call. The level was just out of normal. 3.4. Good news, right? Not really. It means we don't have to trapse right back to the ER but it's not where it should be. It should be stable. 16 hours after the 4.2 it should still be near there. But it's not. And we have no clue why it's falling.
Meanwhile, the GI docs in Gainesville are very concerned about this (they were shocked that he was discharged with the potassium issue). And add that with the glucose issue and they have reason to be concerned. Tonight, they have switched him from 18 hours on/6 hours off TPN to 24 hour TPN. He will no longer be getting a break. Which has pros/cons. Like he can't do the ethanol lock to prevent infections and it's harder on his liver. But it's safer than letting his glucose plummet. Tonight's level was 29. Uh, yes, you read that right. VERY dangerous.
So they set him an emergency consult/visit with their Endocrinologist first thing Monday morning. We just have to keep him stable over the weekend.
Always something, huh?