Saturday, December 29, 2012

Keeping you in the loop.

Last night Dave was with Ryan at CHOC, but I've called him a few times today for updates, so I just wanted to keep you in the loop with where he's at.  Overnight he didn't sleep as well as last night, probably because he slept so much during the day yesterday.  Plus, they were suctioning him a lot last night, and really who could sleep through that?  The cardiologist came by again this morning and Dave asked about the low heart rate again.  He confirmed that it's nothing concerning and that they are happy that it's low as opposed to high.  His body is doing a good job of fighting off the virus without working too hard, and it's not causing the pulmonary hypertension to flare up, so that's good.  I can't remember if I mentioned this already, but they did an echo the day he was admitted just to make sure the PPHN didn't show up again and need meds, and even with all the wheezing and extra lung pressures, his heart still looked good, so that was really great news.

When I talked to Dave at lunch time, they were just weaning down the flow on the high flow nasal cannula (HFNC).  He was on 15 liters, but I'm not sure what they brought it down to.  He's still at 55% oxygen, but if he does ok with the new flow, they'll wean down his oxygen tonight.  His sats were 98% when I talked to him, so that was really good.  We are on day 5 of the virus, so hopefully this will be the last really hard day for him and we can focus just on weaning down the oxygen and getting him home.

So, I can't remember if I talked about this here yet either, but while he's in the hospital we are going to try to catch him up on his appointments we had to cancel this week and see if we can take care of anything else that needs to be done so we won't have to make more trips out there later on.  I asked if they could do a head ultrasound to check on the "mild hydrocephalus" they saw in the last ultrasound, and the PICU attending said we could do it as soon as he's feeling better.  I also asked if he could order another ABR (the longer hearing test where he's supposed to sleep for 2 hours) because he was supposed to have one on the 27th but we had to cancel.  The hearing place is right across the street from CHOC and they can bring their equipment over to do it in the hospital, and they usually set those up for Mondays, so if we are still in, which seems pretty likely at this point, we might be able to get that taken care of.  We also had the nurse request a physical therapist to come up and work with Ryan while he's there.  When he was in the NICU, he would get PT work every M-F.  We are supposed to start weekly visits at CHOC next week, but we figured he might as well get a head start while he's already there, if he's feeling up for it.  Oh, we had to cancel the mickey button placement procedure on the 26th, so maybe they'll be able to do that while we're there, too.  I'm sure we'll think of a few more things, but this is probably plenty for now. 

I'll be heading over to CHOC to switch off with Dave as soon as Dani wakes up from her nap, so I probably won't get to update the blog again until tomorrow night.  Ryan had some more visitors yesterday...our friend Melissa, who is an NP at CHOC, stopped by to see us, and his 4th primary nurse (Lindsey) was working yesterday so she came by with another nurse friend (Beth) to say hello.  He is so blessed to have so many people who love and care about him.  Thank you all for keeping him in your thoughts and prayers.

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