To say that I'm overwhelmed by all the support and prayers sent our way just feels hollow. I CANNOT BELIEVE how so many of you are pulling for our little X-Man and sharing his story with others so your friends can also join the fight and send up thoughts/prayers/positive energy. I'm humbled and eternally grateful. Thank you.
I've been told I'm an optimist. I've been told I'm a pessimist. I think I'm a realist who on any given day could be either one of the former.....Ari is doing about the same. What I fear I see as baby steps backwards may just be steps to the side. The doctor says we are still on the plateau waiting for a climb up. It is a known fact that our precious Down syndrome babes don't do much of anything quickly and that includes a return to health, but even the doctors had expected more progress by this point. Despite the discouraging factors, they continue to tell me that he isn't getting worse and the various things they are observing in him have been seen before. Okay...deep breaths...still no reason to panic.
The details:
Overall, Ari wants to wake up. Even seeing his eyes open quite a bit today. His different body systems are waking up...all but his respiratory system. So it's getting harder to keep him sedated AND we're having to take extra measures to be sure he's getting good oxygen and perfusion. Tough task. Today's big struggle was oxygen desaturation. Ideally you want that 97-100. Today he started hovering around 92-94. They checked his chest x-ray - that's continuing to get better (yay!). They checked his heart - no new problems there (yay!). They started giving him nitric oxide again, but it didn't do anything. So they don't know...but they are turning him. Apparently, some kids after being on the vent for awhile get an oxygen boost from being more on their stomach. So he's now on a paralytic and will likely be turned more periodically all night long. Reducing his PEEP on the vent yesterday didn't last long - he was bumped back up to 9.
His color isn't quite right. Docs see it too. Maybe a night of turning will help, but since I first saw him around 10 am this morning he wasn't pink anymore. He wasn't mottled, so that was good, but his skin had a yellow-greenish-gray cast to it. It was a color I had never seen on him before.
I can't wait to post good news. These past few days of holding steady is getting old!
Happy late night Mother's Day to all you other momma's out there. It is really hard to be a mom at times (now, being one of them for me - not hard to be a mom, but things are hard right now, you know what I mean), but I still wouldn't trade it for the world.
Love to all,
Dorothy
I've been told I'm an optimist. I've been told I'm a pessimist. I think I'm a realist who on any given day could be either one of the former.....Ari is doing about the same. What I fear I see as baby steps backwards may just be steps to the side. The doctor says we are still on the plateau waiting for a climb up. It is a known fact that our precious Down syndrome babes don't do much of anything quickly and that includes a return to health, but even the doctors had expected more progress by this point. Despite the discouraging factors, they continue to tell me that he isn't getting worse and the various things they are observing in him have been seen before. Okay...deep breaths...still no reason to panic.
The details:
Overall, Ari wants to wake up. Even seeing his eyes open quite a bit today. His different body systems are waking up...all but his respiratory system. So it's getting harder to keep him sedated AND we're having to take extra measures to be sure he's getting good oxygen and perfusion. Tough task. Today's big struggle was oxygen desaturation. Ideally you want that 97-100. Today he started hovering around 92-94. They checked his chest x-ray - that's continuing to get better (yay!). They checked his heart - no new problems there (yay!). They started giving him nitric oxide again, but it didn't do anything. So they don't know...but they are turning him. Apparently, some kids after being on the vent for awhile get an oxygen boost from being more on their stomach. So he's now on a paralytic and will likely be turned more periodically all night long. Reducing his PEEP on the vent yesterday didn't last long - he was bumped back up to 9.
His color isn't quite right. Docs see it too. Maybe a night of turning will help, but since I first saw him around 10 am this morning he wasn't pink anymore. He wasn't mottled, so that was good, but his skin had a yellow-greenish-gray cast to it. It was a color I had never seen on him before.
I can't wait to post good news. These past few days of holding steady is getting old!
Happy late night Mother's Day to all you other momma's out there. It is really hard to be a mom at times (now, being one of them for me - not hard to be a mom, but things are hard right now, you know what I mean), but I still wouldn't trade it for the world.
Love to all,
Dorothy
You are exactly the mother he needs. Realism is good.
ReplyDeleteThinking of you all. Hope we can schedule a play date with Rowan later in the week when I'm back in town.
ReplyDeleteContinued prayers & positive thoughts for little Ari & for you, your family, and medical staff. We appreciate your detailed information as it helps us to understand and to focus. I, too, am a realist with a positive spin because of my father's medical miracle years ago when he became known as "Amazing Graves!" Ask Mike---that experience revealed the incredible power of prayer! Love & Hugs from the scattered Romeyn family
ReplyDeleteKudos to you for your strength and fortitude. We r pulling for Ari and lookin fwd to a playdate when he had mended
ReplyDeleteDorothy, I just heard about Ari's illness. I'm praying for strength and peace for both of you today. I loved the pic of your daughter in her dance costume and with her brother--precious family!
ReplyDeleteAlecia Hamilton [UAMS Family Med Dept]
Thinking about you and hoping for good news.
ReplyDelete