Last night? He was in a lot of pain (probably c-diff abdominal cramping). So we did Tylenol all night and that seemed to help. He actually DID sleep a little bit.
The problem? That stupid machine. Every 4 hours, the Respiratory therapist would have to come in and do this treatment. He was not tolerating it well. She even was apologizing to him and would periodically let the mask off his face so he could just calm down. Heart rate was going ridiculously high. And there's me ... trying to be calm as to not make him even MORE scared. But truthfully ... tears were pouring down my cheek.
It would take me almost 2 hours to get him calm enough to go back to sleep. By then, it's almost time for another treatment.
I resolved to have a chat with the Pulmonologist this morning.
Thankfully he came in early and it was the one who is more "chatty" than the other one. We have a better rapport. So I asked what we could get rid of I voted for getting rid of BOTH of the new machines and going to what we have a home. He wanted to keep it all so we had to come to a compromise. Cough assist is toast. Yippee!! Then the medaneb will only be done during the waking hours.
So while I still detest this ... I can live with it.
And during the day today ... he still despises it but he is tolerating it a tiny bit better. Heart rate staying in a safe range, etc.
Then came in Jennifer, the physician's assistant for the GI. She is the one who has been seeing us for c-diff. She actually was suggesting maybe a consult with an infectious diseases doc to see if there's anything else that can be done for him.
Then the GI came in. She started him on Flagyl (round 4 since end of February) and something else ... can't remember the name since it's not been given yet. Doc said that she would only do vancomycin as a last resort due to the horrible potential side effects. But she said if his amount of diapers continue to increase, we might have to take him off feeds, put him on IV fluids until he can build up again. (This is what kept is in the hospital an extra few days back in February!) So we're hoping that doesn't happen. (So far, he's not cooperating with that plan. "Severe" c-diff is where there are at least 10 diapers in 24 hours. He's had 9 in 12 hours. Hoping the meds and the prayers kick in soon.)
Also, Dan ran by really quickly today. Just long enough to bring me a few needed items from home. He had Jacob and Zoe with him (since they're out of school). They were only here about 15 minutes and during that time, I took the chance to run to the cafeteria to get lunch and dinner for me. When they left, he was NOT happy for a while. Maybe they'll come back soon ... or even better, maybe we'll be outta here soon.
During the day, he got VERY bored. He's very used to all the commotion at home, all the kids, going on errands all the time, etc. And here? He's got one chair and one bed and me to play with. I brought toys and those have kept him busy ... until today. "NO WAY" was the response to every single toy offered. So I again asked if Child Life could bring up something for him.
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| Singing "ABC" song |
But better yet, they sent up a Child Life specialist! (The usual people we get are volunteers who just deliver a toy or two.) She brought colorful blocks, blankets to make a pallet on the floor, a musical toy and bubbles. That kid lit up!! And she's coming back tomorrow to have me fill out paperwork to better meet his needs. I asked what the "secret handshake" was so the NEXT time I'm in the hospital (hopefully a LOOOONG time from now) I'll know how to get the right person. She said she'll enter him in the computer and we should be all set for next time. Obviously the demand for this type of service is much higher than they can supply. But come on ... Manny should be a top candidate. (And she agreed!)
When he's here, it's usually for a long time. (Last time was basically the month of February.) Also, he is usually in isolation (meaning he can't go down to the playroom). And finally, it's not like he can get up and play and run in the room. He is stuck with whatever we bring him. Within a few minutes, he perked right up, was singing, clapping, dancing! HOME RUN.
We just got the confirmation of the specific virus Manny has. Rhinovirus. That's it. A "cold". THIS much trouble over a simple cold. Nothing fancy. Nothing dramatic or rare. Just a cold and it's landed him in the hospital with double pneumonia and a horrible case of c-diff. Can't imagine how bad it could get with something bad!
Just had a fun treat. My friends, Rich and Elsa (who I've mentioned every time we're in the hospital). They brought me chips and fruit! (YUM!) And Manny a rabbit. He was sleepy and now he's grumpy (Why am I naming dwarfs?) ... anyway ... I'll show him the rabbit tomorrow when he's happy (again with the dwarfs!). And post some pictures.
Headed to bed soon, hoping Manny has the same plans.
Oooops ... but not before one more torture session of respiratory therapy. (sigh)
Beth, is the cough assist and MedaNeb so hard on him because it scares him? Have they tried letting it cycle a few times on low settings and gradually turning it up?
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