10:45pm Wednesday ... the nurse had given us a second bolus of liquids and now she came in with a bolus of dextrose to bring his sugar up. (It's still way too low.) The doc ordered it to go in over 30 minutes but this nurse called the ICU and they said an hour would be better or it could go too high.
This nurse has just finished her Master's program she said so she is actually a nurse practitioner (nice to have). The baby was starting to dip on his oxygen. She felt it was appropriate to give him some oxygen just to make him comfortable. Clearly it was a good idea.
11pm the moved us across the hall. The other room wasn't set up for a respiratory care and since his xray shows likely pneumonia then he is respiratory care. As we were moving from one room to across the hall, they had to take him off oxygen. He slept through the whole thing but his sats went down to 83 just that fast. Hooked him back up and voila back up. I'm so thankful not to be fighting for oxygen tonight!
The bolus of dextrose is almost done and they did his blood sugar. 149 MUCH better. (The previous ones were 45, 63, 59 in that order). He has so many holes in him! Poor baby.
Doc just came in at 11:23pm and is relieved the sugar is up but is still quite concerned about him not peeing still. Not one drop out of this kid. She said it looks like early pneumonia to her but could be something more serious. They will repeat the labs in the morning. CBC and BNP. (Remember the BNP from last time? That's a measure of his heart function ... it's high again. 14 which is 3 times normal.)
12:15am blood sugar 109. Which is perfect.
12:20 here to do the nasal wash and viral panel, test for MRSA (he's going to hate this). And then start his iv antibiotics.
trail of people all night long.
5:40 they came in to draw labs. Long story short ... lots more holes in him and no blood. Lab or iv team will have to be back later to draw.
8am pulmonologist said he didn't think it was a true pneumonia on the xray and he sounds clear. He feels it could be some aspirated gunk in his lungs but felt the 34,000 WBC couldn't be explained by this. (So my guess is it's in his gut.)
10:30 GI nurse practitioner said from their perspective, they clear him for the jtube procedure today. Nothing fancy, just in and out. She thinks it came out due to his retching tendencies. But I think he retched because it was out of place. We will hope this time sticks put but if not, we will end up here again and they will try something new. They think it was just a fluke. I do not. Why? Because it was in for 4 days before we started having troubles. During that time, he wasn't retching. In fact, he wasn't coughing even.
From THEIR perspective they would send him home today after the procedure. But of course he now has this respiratory thing and the infection. So those have to be cleared before discharge. Also, these next labs will tell a lot about when we can go home.
And I cleared it up ... if I end up in the ER for dehydration again, I can "Demand" fluids based on his past history. They have laboratory PROOF on record and that should be enough. If we don't get it in a timely manner next time, I have them call the GI and THEY will demand it for us. Also, just the way this hospital's schedule works, if a jtube comes out of place, it basically always means a night in the hospital. She said if it comes out during the day we go to the office and they admit him from there. If ever after hours again, they will send him immediately to the ER and admit him through there. (Love having a plan.)
10:35 lab was here ... got it on the first shot! Amazing how some people just have the "touch" (and some don't). As a Mama who has watched her baby get poked (12 times since 5 pm yesterday) ... you really want and need them to get it the first time.
And if today is like last time, I will have very little warning from the time I know about the procedure until we're on our way. I learned from last time, put on my shoes now, grab my sweater, pack my purse with a snack and drink and bring my purse. (All the things I wanted last time and didn't have with me.)
This whole hospital thing is a learning curve and I like to learn it the first time so I don't have to repeat the same mistakes. It's one of the ways I spend my days and the awake portions of the evening ... figuring out the system and process and analyzing what worked/didn't, making mental notes and adjusting it for the next time. Like I keep a bag packed with the basic hospital necessary things. There's a list of last minute things that have to be grabbed at the end. I've got this bag packing down to an art.
12:00 Dr. Lam (The Hospitalist in a different group than Dr. Cartaya from last week) was here with the overall report. His labs are improving. Blood sugar 89, Co2 is 17, wbc 20,000, bnp coming in range. She says that if he keeps improving in his labs, we will go home in 1-2 days. GREAT news.
12:15 our tech Daisy brought me a guest meal tray. I didn't mention it earlier but Daisy was one of our very sweet techs from last May when we were on this floor. She was there during the days of diagnosis and prognosis. During that time she noticed I never leave him. EVER. And she started ordering me a guest tray. Today, she came in and remembered us. And wouldn't you know it, she ordered my tray. To which I said, "You DO know me well!" Such a small thing that means a lot.
2pm ... nurse just came in and said we are scheduled to do his jtube replacement at 10am tomorrow. They decided they want his WBC to come down better first and to see if this is pneumonia or not. At least we have a plan now.
Have the docs discussed placing a PICC line? That would enable him to receive IV stuff and have his blood drawn without having to be poked over and over. Poor little guy! I am praying for your family. Renee
ReplyDeleteThanks for the update. Keeping Manny in my prayers....and you...and the rest of his/your family. I hope when things settle down you will have time to write a book for other parents about all these things you're learning about doing time in the hospital. An invaluable resource that would shorten the learning curve a bit, or at least make it a little less steep, for newbies. <3
ReplyDeletePicc lines carry their own set of problems that include hospital stays for infection. Blah.
ReplyDeleteI am hoping you are out really quickly and dont see a hospital again for a very very very extremely long time. Sorry you are going thru this. hugs.
Be blessed
Ashlee
you are a true hero!
ReplyDelete