
10/04/2024
So several people have asked for updates on Maria
lt’s been a week since we’ve been home last Wednesday but since then we’ve only had one night of nursing. Due to Maria being in the hospital for so long, our nurses have to find assignments elsewhere, rightly so. So I have been her caregiver 24/7 and when I say 24/7 I mean 24/7
We finally in the past two nights Have had 90% of the 6 hr night, restful. But the first two nights home were filled with horrific terrors and fear on our part.
When Maria gets sick Maria‘s motility completely shut down and her bodies response to pain in her G.I. track is to create secretions to the point she is drowning in them, and she her oxygen saturation decreases. So for the first five days, we would have two days where it was 24/7 high heart rates and desat, secretion. Then three days where it would be 12 hours of good and five minutes later you would have 12 hours of oh my gosh, do we need to go back to the hospital.
Talking to her doctor from day one, when I was in a panic, her pulmonologist said you’re gonna have to give her a week and it’s literally been a week till I finally feel like we are 65% back to feeling we are not loosing her. We still are getting below daily Volume feeds that she is required for a healthy nutritional intake into her but she’s looking good and we’re getting close to it. The problem is when her G.I. system says” I am done”, it’s done and we have to give her 2-3 hour breaks. The hourly volume that she is up to is only enough to sustain her if we were able to do it 24/7 and we are not. we’re only able to get about 19 hours of feed in a day but she still at a healthy weight and is resting more peacefully every day requiring less and less suctioning every day And I feel I can walk out of the room and fix dinner for an hour as long as we can hear monitors alarming.
I can not thank you enough for all your prayers. Please keep them coming for germ free house. Haha!!! With 3 kids in school and one whos’ Autoimmune is in the tank and who is always bring things home every virus out there.
Thank you All
Special Thanks to some angle on earth who donated 2 large air purifiers to Maria for her room and our Living room. Not mentioning names because I want you to have your blessing in heaven.
And thank you to Cherry Glade Mennonite church for the blessing of the amazing food. My boys could live off pizza and hot dogs for only so long. Even once I got home the left overs tasted so heavenly.