Gabriel is continuing to improve at the hospital. He is able to be on “room air” as much as possible. He spent most of the day without oxygen yesterday. Today seemed like a small step back as he needed the oxygen most of the afternoon, because his baseline number was lower than it should be. For the most part he is in good spirits.
We had a plan to start adding thickener to all of his drinks because he is getting fluids in his lungs. There are a variety of issues with his chewing and swallowing. Thickening his drinks will help strengthen those muscles and ultimately make him healthier. I am usually willing to try just about anything, but really raised my concerns about this because I know how stubborn he is and he is has several eating quirks right now, one is he wants food that is the same as other people have. He is very aware and suspcious if you try to give him something different or tweek his food. The OT (occupational therapist) who first suggested and introduced this got to see first hand Gabriel’s unwillingness to cooperate today. He has basically taken 2(yes literally 2)sips out of straws since we introduced the thickened drinks yesterday. Right now he is on an IV with fluids, so he is getting hydrated but clearly that will not be the case when we come home. The last word was the OT was going to talk to the doctor and see what other ideas we could come up with. Oy VAY little man 🙂
We are in the hospital until he is able to be on room air, or off oxygen, for 24 hours. We are hoping (and planning on double checking) that they are taking into account that his “normal” oxygen levels are low.
Thank you SO Much to everyone for the support! We know our prayers are being answers! Keep praying! The meals, delivered groceries, care package ,etc have been IMMENSELY helpful! The most helpful things right now are prayer and meals brought to the hospital. EEEEKKK…
LATE BREAKING NEWS: as I was typing this I got a call that Gabriel is now vomiting ;( Poor kid. So obvious step backward. Keep the prayers coming!