20:33 -- FINALLY. The CPAP is GONE! Nurse S. said she "had it" with his CPAP this morning and convinced Dr. D. it was time to let Max breathe on his own. Apparently Max had enough as well. My crafty boy had managed to wiggle out of it most of the time and was so miserable when it was inserted properly. I got to hold him as soon as I arrived, and we can now pick him up whenever we want. I didn't get much of a chance after this morning to hold him, as his blood transfusion began at 13:00 and lasted three hours.
Speaking of transfusions, Max did NOT receive platelets today. He last got them Monday; his count was at 32K Wednesday, and today it was...... 33K! We're not counting on this being a trend, but it's good news to report anyway. His bilirubin is down as well, so Dr. D. modified his testing to once a week.
And speaking of good news, the ultrasound results are in. Max does NOT have periventricular leukomalacia (PVL)!! "What is that?" you ask? It's the death of the white matter near the cerebral ventricles due to softening of the brain tissue, and for Max it could have been very very very bad; although babies with PVL generally have no outward signs or symptoms of the disorder, they are at risk for motor disorders (especially of the lower limbs), delayed mental development, coordination problems, and vision and hearing impairments. Thank God for wikipedia. It appears that although he suffered brain injury (bleeding), his brain is recovering. When Dr. D. told us the news, I couldn't react, couldn't wrap my head around it. I was waiting for the "but..." to come, but it never did. Of course a more definitive diagnosis about the extent of Max' brain injury will come with an MRI, and we do know there's a very real possibility of his having developmental delays, but the biggest hurdle has been jumped -- and cleared.
Dr. D. said we're going to try him on the bottle beginning Monday, giving him time this weekend to adjust to life without CPAP and to recover from his transfusions today.
Max loves being touched. At first when I held him, I put his chest to mine thinking he'd like to be held that way. Oh no, he kept trying to lift his head up and kept twisting all around. I finally switched him to a cradle position and he immediately stopped squirming. He did the same thing to Nurse S. and we decided he likes to look at who's holding him. While he was being transfused my sister had her hands on him and when she took them away he started fussing.
Well I'm drained; it has been a long week. So what's in store for the coming days: bottle feeding attempt starting Monday, another LFT on Monday to determine Max' inflammation, more waiting and seeing, and more waiting and seeing. Dr. D. is off for 2.5 weeks and next up is Dr. M. She's very, very nice.
Posting will be minimal this weekend, unless there's a major development.
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