So, since my last actual post... Alivya was transferred and had the laser eye surgery that Taylor had on Monday... she did very well and bounced back nicely... The staff there worked with her every day, and by Friday she was nippling all her feeds. Friday night the doctor told us that she would be able to go home on Wednesday if her Monday follow up eye exam looked good... so yesterday it became official... Alivya is coming home tomorrow!!! We're are very, very excited. This will mark a whole new chapter in this adventure for us.
Taylor had a pretty rough couple of weeks. He was getting pretty tuckered out and working really hard to breath on the nasal canula when they went to six nasal canula and three C-PAP...so they tried six on six off... that was just as bad. Therefore, they decided to go back to three on three off, but Taylor was so tired that he ended up needing to go back on straight C-PAP for an entire day... During that day, he was doing his usual and fighting the C-PAP... so they decided to give him some PhenoBarbitol to attempt to relax him. This has seemed to help a little. His oxygen requirements have dropped down by about 10%. There is still a pretty long way to go, however. It was difficult over the weekend to see him because he was so tired and medicated that he really didn't interact with us at all. Yesterday, though, he must have been feeling a little better because he had a very nice alert period while we were there. This morning when I called, the nurse said that they were doing a six hour trial to see how he does. I am not sure why they think he is ready for this again, but maybe... The doctor also decided to give the steroids another shot to help his lungs. So hopefully we can start making progress again soon.
More pics comming soon!
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Wife, Parent, Nurse; my life raw and real, as I see it.
