I am yet again pretty confused about what's going on with Gaines...don't get me wrong, he's doing great, I'm just not sure what the current plan is. When I left this evening he was down to 4 liters, 50% oxygen and doing well with it. I was really glad to see this. I would like to be able ot fill all of you in on the plan for Gaines but today's doctor didn't call me like I'd asked him to so I don't know it. I was really irritated over this...to say the least. I really am over it now but I was pretty miffed this afternoon.
Anyway, he wrote orders for the nurses to wean Gaines' oxygen or flow as needed but this concerns me. Nobody wants Gaines weaned down more than me but I am so afraid of going too fast. I feel like that's what happened when we first got here. Because he'd been on a lot of pressure, he was able to take less pressure for a while, but he eventually backslid until he was up to 5 liters, 65%. I'm afraid he'll do well with his weaning so they'll keep pushing him until he bottoms out and has to start over again.
I'm fine with the nurses weaning the oxygen, I just wish the doctor would give the order to wean the flow. I kind of feel like once his oxygen gets below 50% or whatever and if his blood gases are good, then he's ready to wean the flow again...or some sort of plan so that its not just at the discretion of whoever happens to be on that day. Don't get me wrong, I love our nurses and I totally trust them with Gaines, I'd just feel better if a nurse and doctor agreed that he was ready. All I want is for Gaines to progress quickly but quickly hasn't seemed to be his thing so far and I'm very apprehensive about him being weaned too fast. Please keep his doctors and nurses in your prayers. I pray for patience and wisdom for everyone involved...doctors, nurses and me.
Also, this afternoon I was able to help give Gaines a bath. He got a bath in his very own bathtub and really seemed to enjoy it. His nurse yesterday asked that I bring his tub up there. He's also getting to watch movies these days too. He's been watching The Jungle Book the last few days.
I'm supposed to get to the doctor tomorrow and I hope to be able to voice all of my concerns with him openly. Please pray that I'm able to do this without holding back for fear of being rude or without getting upset. I got a little upset this afternoon on the phone with the nurses. I've just been so worried about having a new doctor and when he didn't call I guess I probably took it as him not caring about Gaines as much as I felt he should. I think any mother would want the absolute best care for their child.
Oh, PS...we passed the 100 day mark a few days ago. It just slipped right by me. I'm going to go for now. My eyelids are awfully heavy. Please continue to pray for Gaines. Pray for his lungs to heal and for him to get better at taking his bottles.
PPS...I realize that this post is a rambling mess but I'm too tired to give it the editing that it needs.
Love to all,