I'd love to give you all an update on Gaines but I'm so confused at this point that I don't really know where to start. We got another new doctor this week and he is great but I think I would really like for a doctor to stick with Gaines for a while. They change every week here and its getting a little frustrating to me. I feel like once a doctor gets to know Gaines and starts forming a good plan for him...they are gone. This doctor is on for two weeks so I hope we can get a good plan mapped out and stick to it. He's also new and seems to subscribe to the breathing philosophy that we are used to from GW...not exactly but he's a good middle ground between these and the DC doctors.
So, scratch the old plan that we were on. Now, Gaines is on 4 liters (more pressure), a new type of cannula that provides more humidity (don't ask me why) and less oxygen. I'm not exactly sure where we go from here. The nurses tell me that right now we are trying several different things and seeing how Gaines reacts to each of them. I think then we'll figure out what works best for Gaines...more oxygen, more pressure, etc...a baseline...and then wean from there. They are supposed to be finding out what exactly the home health companies around here will support. Once we get that info, we'll know what Gaines has to be at before he can go home...once he stabilizes and starts taking bottles. I'm not exactly sure when we'll get to the bottles again. I think once we find a good baseline for Gaines. I really like the approach that this doctor is taking of not doing too much at once.
I got a little discouraged this afternoon. Beau met with the doctor and mentioned his personal goal of getting Gaines home before Reed's birthday in October. He feels like the doctor thought that was more of a reasonable goal than my Labor Day. I think we could look at Labor Day as best case scenario. Anyway, I just got kind of down about it...I mean, mid-October means we are only halfway there. I didn't let myself stay down long. I've gotten a new perspective on things again (I've gotten pretty good at giving myself little pep talks).
In the great scheme of things, that would not be that much longer and I'd rather not take him home before he's ready. Also, I'm trying really hard to think about how lucky I am to have these circumstances. I got a little irritated with someone the other day complaining about their baby being so fussy...I wanted to say, just be thankful that you have a baby at home to be fussing. Obviously, I didn't say it but thinking back about it now, what if someone with no baby, or a baby worse off than Gaines hears me complaining about a lung problem that he will get over in time. I guess you just have to keep in mind that someone always has it worse than you.
In other news, Reed slept in his big boy bed last night...all night. He's off to a good start on it tonight as well. He was so proud of himself this morning and kept saying, "My bed, my bed" this morning. Beau and I were really proud of him too. He's getting so big these days. School seems to be going a smidge better. They say he's starting to enjoy himself more but the drop-off portion of the day is still pretty rough.
I love my two little boys and can't wait to get them under one roof. Please keep praying for healthy lungs.
Love to all,