Today my Father-In-Law came down so that he can watch the kids so that Drayke's Mom and I can spend time at the hospital for the next 2 weeks. So far he is doing really good. He has not destat'd at all today. He was awake for a bit when his grandma and Aunt came to visit. He seemed to be happy most of the day. His nurse Pam asked to have him today so now she has had him for 2 full days. She seems to love him LOL. Who wouldn't honestly.
Nurses are now getting to know what Drayke is really like when he is not destat'ing all the time. He is so sweet and adorable. We know that him being good right now means that things are working. We are hoping for a miracle because he is a miracle to be here to begin with. He is currently 9 lb 9 oz. He has been losing weight and that could be because he was taken off of his feedings for half a day and put back on later. He is eating again. Currently he is on Morphine, Adavan (sp?), Lasixs, Versed, and some other diaretic stuff.
Thanks to all those that are praying for him and that are commenting. We read everyones comments and we appreciate all the support we are getting.
3 comments:
I'm so happy to hear that Drayke is doing better today. What a strong, brave little man!
We're keeping up the prayers on this end. Warm, comforting hugs to all of you.
Erin
I don't know if it makes sense to be working with more than one hospital at a time to have Drayke qualified for a transplant, but it couldn't hurt, right?
I was looking around a little more and discovered Dr. George Mallory at the Texas Children's Hospital (http://www.texaschildrens.org/carecenters/Lung_Transplant/Default.aspx). Dr. Mallory "...was the founding transplant pulmonologist in the St. Louis Children’s Hospital lung transplant program in 1990" according to their website.
I found out about Texas Children's through another website (http://growingyourbaby.blogspot.com/2007/08/preemie-beats-odds-with-rare-double.html) about a preemie (only 24 weeks) who had a double lung transplant at 5 months. I know Drayke's younger than her for his current age, but he was older than her at birth, so that may make a difference for the better.
What the heck, right? If there's more than one place that does this sort of thing, and if there's always a waiting list and the sooner you get on it the better? Maybe Drayke's doctors/nurses will say I'm wrong, but it wouldn't hurt to ask them, right?
Love & prayers to all of you,
M
wow.. I got this link from Thor's LJ and I couldn't stop reading. I am amazed by the journey your little man has had in his young life so far. I am keeping your family in my thoughts and with you all the best.
*hugs*
~Jonna~
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