Then at 7:15 am, the respiratory therapist came in. Seriously?? She only had to see him once today and she has from 7am-7pm to get that in. There wasn't possibly anyone else who needed say 4 treatments? I was very upset ... it wakes him up and he was screaming. But thankfully, he went back to sleep so I guess it was fine afterall.
Dr. Cartaya made his usual rounds. Nothing new.
Baby's heart rate is going back up again. I have noticed it's either a fever or pain which cause it to rise. And since he has no fever, I have to assume he has pain somewhere... just don't know where. (But I keep checking and looking.)
Dr. Cuenca (the GI) arrived. I got her to stay for a few seconds longer than normal. I know they want to take care of the acute nature of this stay. That's a no-brainer. But I also wanted them to start addressing the chronic nature of this. We're on his 4th jtube in 6 1/2 months. (And that's with us waiting 3 weeks one time while it wasn't working and this whole month where something was wrong.) So we need to get to the bottom of it.
It's possible, it's just a function of the nissen fundolication. Retching can be a side effect. (It's like taking a headache medicine and the side effect says "may cause headache".) I asked about a formula change ... she thought that wasn't it but we can address it again later. I asked about switching to separate j and g tubes and she immediately was like, "DON'T DO THAT." She explained why it would be bad for his situation and it does sound like a problem.
She said there are some surgeries to open up the bottom part of the stomach better for the gastroparesis ... but it's a bad surgery too. (And we're not there yet.) She suggested to vent him more. (We already do once an hour and all night ... but he might need 24 hour venting.) And the only other thing is to use a more powerful prokinetic. Reglan is the only one left. It has side effects so I'm not so sure that's a great idea either. But clearly, we have to do something.
She then came back a bit later and said she'd ordered him an ultrasound of the gallbladder, liver, etc. And ordered some more blood tests (at which point I cringed as I know how hard that is to get from him!) But clearly, she was thinking about the behind the scenes of this and not just doing the quick fix.
They aren't sure if the tube will arrive by tomorrow or not. We won't know until tomorrow. But if it arrives,we will definitely do the replacement then, start the feeds and if all goes well ... go home tomorrow (Monday). If not, we have to wait another day. So good thoughts!
Then we were sitting around talking to the nurse. Kaley and I were sitting on the couch, Manny sitting in a chair. No one moved ... nothing ... and his IV just popped out of his arm! Seriously. Not even kidding. I've never heard of such a thing. The nurse said, "If I wasn't here to see it myself, I would have NOT believed you!" (She told several nurses and they didn't believe her!) But it's the truth. He'd been complaining about wanting it off earlier in the day. Sure 'nuff ... once it came off, his heart rate went back to normal. He was in pain. Oh, and of course, he has an allergy rash all over his arm where the tape was. (sigh).
We were just about to go to the room where they put in the ivs when Dan and the kids arrived. They were only going to stay about 30-45 minutes (it often takes longer than that to get the IV in). So we did the visit first. They were funny ... at home they never want to watch Tinkerbell... but it was on the screen and they were GLUED!
Time flew and they left. It was soooo sad. When they left, I was holding Manny and he said, "Let's go Mama". He was confused why we couldn't go with them! I was at the doorway of our room and he was leaning saying, "Go Mama". If he could walk, he would have torn off after them!
Then time to go to the IV room. It was "only" 2 more sticks. (7 this week if you're keeping track, not to count the ones from last weekend.) But they got it. We're on the oncology/hematology ward ... so these people are used to blood, needles, ivs, etc ... and the charge nurse was the one doing it. She said it was a definite challenge and she wasn't sure she'd be able to get it. Oh, and I am once again glad I was here ... the GI doc told me they were going to do an amylase and lipase test. But she didn't tell the nurse. I insisted the GI told me there was a blood test to do ... glad I did. She looked deep in the chart and found the orders. Without me paying attention, they would have had to go back later for yet another blood draw.
Now it's 5:30 pm and we're back in the room. He's watching Diego on a video we brought and all is right in the world again.
tray, with dan, gang
Glad you're hanging in there. I LOVE the picture of the kids watching the movie. It just makes me happy to see his room FULL of all the people that love him! :-)
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