Ryan is still in the hospital, but has been pretty stable the last week and a half. It has been that long since he desatted into the 30s/40s. He has been sitting mostly in the 70s with a few dips into the 60s this week. Dr. D says his catheritization will be pushed off until closer to the Glenn.
He received two, count them, two tissue expander injections, one on Tuesday and one on Friday. He tolerated both of them beautifully. Dr. D says he may be able to come home this coming week. Whoo hoo! I am waiting to get my hopes up – he has to have a solid weekend and tolerate his Tuesday injections then we can talk about him coming home with an additional tube – his nasal cannula for the supplemental oxygen he is receiving. That works for me!!
Additionally, he was assessed by a speech therapist and deemed unready for PO – food by mouth. I kindof knew that already since he started refusing the bottle two months ago (wow, time goes by quickly). She showed me some exercises I can do with him to start getting him used to the idea of a spoon. This will allow us to move straight to baby food and a cup. Don’t get too excited though. To get him to that point, we will most likely need to work for the next 4-5 months. Ugh! I am glad we are starting now. It looks like I should expect him to have the feeding tube for quite a while longer.
All in all though he is looking much better than two weeks ago. When he was having his desatting episodes, I could tell his little body was working hard – his brow was furrowed and he breathed with his mouth open. Now, he seems relaxed, is breathing his normal way, and is playing with his mobile. I’m not sure how long he has been reaching for things, but I saw him do it this week and I was beyond excited. The nurse and Henry told me they’ve seen him doing it in the last week or so. Yeah!!
So, we are praying Ryan will come home this week if he is ready.
Comments (11)
Just ran across your blog by chance – or maybe it wasn’t really by chance….
Took me a few days to go back to the beginning. You sure are humorous and so are your girls! I’ve had several good laughs. Just know I’m praying for your little guy and for you and the rest of the family. Blessings, Just a grandma in the midwest
We’re praying Ryan will be able to come home soon!
-Brent and Julie
thanks for the good news. hoping to soon read that he is home. love ya
Prayers that your sweet boy can come home soon!!
I’m praying that Ryan does well and is able to come home soon!!!
Does he reject the bottle because the feeding tube is just easier for him? i can imagine it would be quite low effort to eat that way!
Praying for you guys and posting for Ryan today!
Wonderful news, yeah Ryan, we will continue the prayers.
Wonderful! I’m so glad to hear this lovely news! Still praying…
Way to go baby Ryan. I think mommy needs to send me a new picture of you so we can make your new button.
What do you think, mommy?
I saw this story and of course thought of you..
http://news.yahoo.com/s/ap/20090714/ap_on_he_me/eu_med_heart_transplant
Her heart healed…