So after another few days in ICU and a cath, we have made it back to the 8th floor. Yay! Ry made the move perfectly this time. It is a blessing that she did so poorly on Sunday and we went back downstairs which led us to the heart cath. Her new medicine has worked quite well. We have started on the lowest dose and do see some improvement. It is administered every 6 hours... boo. But oh well, we might as well get used to it because post transplant we'll have plenty of those. The other bummer thing about the med is that she HATES it. Rylynn has always been great at takingher meds. She's done it since she was born, so I don't think it ever crossed her mind that she could fight us on it. But apparently the bubblegum flavor of this medicine just makes her sick. After two doses of gritted teeth, spits and tears I knew we had to do something. She had begun rejecting all her meds... this could be real trouble.
We have added just enough cherry syrup to the bublegum that its bearable and hopefully she'll resume back to her wonderful medicine-taking self before long.
Since being on the new med, she's come down to only 1L of oxygen and her sats are holding steady in the high 70s. After her first two doses of the Sildenafil she would get VERY flushed and her sats actually reached the low 90s!! They haven't been that high since she was just born.
We aren't sure just how long we'll have to be here on the floor and if we'll have to home on the oxygen, but we're getting anxious knowing it should be on or by Tuesday.
Thanks for all the prayers and well wishes. We are so grateful for our friends and family, ya'll are the best!
With love...
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