Getty Owl Foundation

Hospital Update – Getting worse before it gets better

From Mark:

As we went to bed around midnight, I went off to the parent bedroom and Kate stayed with Getty. As Getty would fall asleep, her blood oxygen saturation levels (“sats”) would drop into the 80s (normal being 97-100, less than 95 being cause for concern, and less than 90 being bad news due to inability to breathe and absorb o2). They did quite a bit of work and extra treatments through the night to help keep her sats up.

When we first arrived, we thought an IV would be great to keep her hydrated and would allow easy delivery of meds. However, SMA kids are tough to stick with an IV because the veins are so tiny and the muscles are atrophied. After sticking poor Miss Getty in 7 different places with a needle, they gave up. All that crying for nothing. Poor thing. They tried again last night and got a stick, so that’s good. Now she is getting more hydration as she fights this.

This morning, Getty was still wheezing and moaning as she tried to breathe. She was having problems keeping her sats up, even with higher bipap settings and more O2 bleeding into the bipap line. We were doing more treatments, but we couldn’t do the treatments as well as normal because her sats would drop into the 80s every time we took her off bipap to try to cough her with the cough assist machine. Then she would have to do that much more work through her exhaustion to get herself back up into the mid 90s.

Adding to the complexity is that she is just plain tuckered out. She has not slept well at all since we have been here. We also have to wake her up to do the lung treatments, which probably contributes to wearing her out even more. She needs the lung treatments every 4 hours but she could have respiratory failure from sheer exhaustion. We kicked everyone out and this is mandatory Getty rest time. Kate climbed into the little pediatric bed with Getty and they are snuggling and sleeping together.

The doc came in an explained the patch of fog on her x-ray. The working theory is viral atelectosis (collapse of the lung sacs) as opposed to bacterial pneumonia because the affected area is “roaming” around her lung. If it was a bacterial infection, the bacteria would pretty much stay put on the x-ray.

The worst part of a viral infection is the third and fourth day, which is probably where Getty is now. So we expect today and tomorrow may be pretty rough on her, with some improvement on Friday.

Thanks again for all the love and support. Thanks to Grammy Nola, to Takoa, and to Morgan for stopping by for a visit.