Grayson didn't have a very good night. He will not take a bottle so we had to have a tube placed through his nose into his stomach for feeding. He is not tolerating his feedings at all. For a baby his size he needs about 20 cc of formula every 3 hours. Unfortunately he is only keeping a few cc's down.
It's afternoon now and Grayson is doing OK. Dr Hall, a neonatologist, suggested we increase his oxygen from 1/2 liter to 1 liter. All of his breathing is unassisted, but without oxygen his o2 sats are 80%; which is not good. His color looks much better on the extra oxygen.
We keep hearing rumors that we might be able to go home today, but there is so much to get set up. It has always been our wish to take little man home no matter how sick he was. Home is a much better place for him than the hospital. Before we can leave we have to have oxygen at home and hospice needs to be set up. Every time I say Hospice thinking about our son it makes me cry. Hospice is supposed to be for someone who has lived their life not someone who is just beginning to live.
Kristi and I decided that we would celebrate everyday of Grayson's life as a birthday. We got this idea from Eliot's parents in 99 balloons. Eliot was a little boy with Trisomy 18 who lived for 99 days. His parents are amazing and did a wonderful video and posted it on youtube; 99 balloons. So everyday at 1208 pm Grayson gets a gift for his daily BDay... just so happens he is a huge fan of monkeys.
HAPPY 1 DAY BDAY GRAYSON. The Sock Monkey is your first monkey gift.
By late afternoonLittle Man started tolerating about half of his feedings. Word here is a hospice nurse from Arkansas Hospice will be to the hospital to get us set up and the folks with the oxygen will be here by 3.
After a few hours and a long long time pacing the floors.... GRAYSON THOMAS THOMPSON is going HOME!! We had our car seat test, hospice is set up, and we have a nifty little machine that will make all of Grayson's oxygen.
We made it home a little after 6pm. No matter what happens from here out, Grayson will live his last moments surrounded by family in our home. We are so proud of you Little Man!
2 weeks ago