Daniel Watches Jeopardy

There's been lots of Sofia updates so here's Daniel a few weeks back watching his favorite show.

Sofia is home again!

And happier than ever! She's back on CPAP w/ her new meds. She's not taking her bottles by mouth though so we'll be working on that over the next week and hopefully after that she'll be back on off the vent trials.

Daniel still has a runny nose but otherwise is pretty happy too and has figured out how to make all of his various (and pretty loud) toys work!

Hospital Pics

Some pictures of Sofia in the hospital.

During her gastric emptying test...


Feeling good enough to play...

Getting Better!

It looks like the new drugs are working and Sofia was really happy for Mommy today as well as doing much better. They are putting her back on somewhat more standard feeds and hopefully will start to wean her back to her vent settings tomorrow. Hopefully we'll have her back by the weekend.

More tests

Sofia had another test today where they checked to see how quickly she was processing food and it turns out she has a delay in moving food through her bowels. This could be what has been causing her to have bad episodes. Her chest x-ray came back clean as well.

So the Drs are giving her some new drugs to help move her bowels and hopefully this will resolve the issue. It is very likely she also had or still has some kind of virus which is making the situation worse (if only because Daniel and Mom have it too) so she's still on additional respiratory support and drugs.

We're hoping she's over the hump and will be home in a few days.

Staying the weekend

Sofia likes it so much she's staying the weekend in the hospital. Well actually she was doing really great yesterday (even though she decannulated herself yet again and needed to be resuscitated) but today she took a turn for the worse again. She's still doing much better than when we took her to the hospital but to be safe the Drs are putting her on some antibiotics and will try again to wean her back down to CPAP and the proper feeds before she comes home, target Mon.

Back in the hospital

Again.

We brought Sofia in yesterday early morning as she was retracting (breathing very hard w/ her tummy) with a very high heart rate and in general extremely unhappy and unlike herself. Of course all tests results and scans were negative but the thinking is she may have some virus that is causing her distress. She's back on ventilator support and on steroids and is tolerating her standard food again and appears to be on the mend.

The docs want to keep her for another day to make sure she is doing better before target releasing her tomorrow.

Mist collar trial!

Sofia started today on her mist trials, 15 minutes 2x a day off of the vent. She's doing one as I write this and is doing great, absolutely no issues!

We're on track to get her off the vent soon but due to her stenosis she'll be on the trach until next Spring at least.