Taylor's health is a constant roller coaster this week.
Most importantly, he is still seizure free. Lane frets anytime I write or speak that phrase. She worries that doing anything more than thinking those words will jinx his record. When Tay started back on the powerful ACTH steroid shots, the doctors warned us of two things...the first is that he would be incredibly irritable and uncomfortable most of the time. They were right. Since Wed Dec 15th, there has barely been 10 mins in his wakeful hours that he hasn't been moaning, groaning and swaying his head in general discomfort. It has been one of the saddest things in my life to witness...just having to stand by and constantly whisper encouraging words into an inconsolable child. The docs make a strong argument when they say, "If two weeks of extreme discomfort saves Taylor's life, then so be it."
The second warning was that ACTH actually lowers the immune system, making it easier for him to pick up colds & viruses...sicknesses that could progress into the more deadly pneumonia. Well, Taylor's temperature started to spike on Thursday evening and he developed a croopy cough that wouldn't subside. A trip to the ER on Christmas Eve confirmed our worst fear...pneumonia in 3 different areas of his lungs. I won't go into the details, but I can say this...of all 418 days of Taylor's life, I've never seen him look this ill.
Now the good news. Actually, the great news. 12 hours of pumping antibiotics, IV fluids, Tylenol, Ibuprofen and a slew of other holistic measures into Taylor has him turning the corner today. At 3am, Taylor looked like a new kid. He was suddenly very content, lucid and wasn't irritated at all. In fact, he almost looked like he was waking up from his 9 month stupor for the first time...taking in and understanding his surroundings. It was pretty amazing. We interacted together for 3 hours and had the best time. The docs think he will remain in the hospital for another 3 or 4 days, but that he should continue to heal and recover just fine. I believe it's a sign of even better things to come.
Below is a pic of Taylor snoozing in Santa's lap this morning.
Taylor loves you.
Praises!!! Dont be afraid to say he's seizure free-we are all so thrilled to read those words! I have everyone I could get in touch with last night praying for sweet Taylor-Isabel texted me early this morning that he was doing better...all I can say is that it made the Culpepper Christmas! Love on that angel for us-we will see you when you come back to Memphis! Love, Clay, Suzanne, Murphy and Madden
ReplyDeleteThat is a beautiful picture! Merry Christmas Taylor XOXOXO
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