Friday was a bit rocky for our Superman. He still wasn't eating the greatest, wasn't sleeping great, and still struggling with taking his medication (if you know Alex, taking medication is typically easy). He was looking a bit swollen in his face and stomach. To help with the extra fluid on his body, the doctors increased his diuretic. We believe the act of taking his medication was aversive due to vomiting on his meds the days prior. :( He is also having very loose stools and very often (sorry if it's TMI); to the point that he's crying loudyl, cracked skin, and desaturations to the lows 80's (yes..now we all freak when he dessats to the low 80's).
Today was a bit better. Alexander started to eat more and tolerate most of his medications.There are still a few that we have to be creative with, in order for him to take it. His stools still aren't great but they are starting to improve as well. I have realized that I hadn't mentioned the fact that he is still on oxygen, but only 1 liter with saturations of 99 percent! The nurses are working on weaning Alexander off of it. I can't wait to see his face without it! Tears of joy will happen. He was also on an external pacemaker that was kept around 120 BPM. The external pacemaker is just monitoring his heart and keeping his heart rate up high to keep blood pumping quicker while his body recovers. Each day the pacemaker was turned down and as of yesterday, he's no longer on it!
We also moved to Cv Acute (the step down unit) yesterday. This means we are closer to going home. There is still a lot to figure out including going to the cath lab for biopsy this coming Thursday (12/15), adjusting meds, get him up and walking, and intaking food.
Praying today is another better day: no more loose stools, taking his medication better, eating more, and wanting to move more. <3
Everything is new for now with Alexander and his new heart. New things to watch over, new medications to take, new oxygen and heart rate settings, and what a child with a great heart function can do! We have a whole new "scary" to think about. The past was his single ventricle: low oxygen saturations, getting sick lowers the oxygen saturations even more resulting in hospitalization, pace makers, etc. Now we have to make sure that his body doesn't reject his new heart, and that he stays healthy and doesn't get sick.
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