Today has been a good yet frustrating day. Gaines is still doing very well. He’s still on 3 liters because his doctor was not quite ready to wean him yet and I agree. I want to make sure he’s doing well on 3 before we attempt 2. I think her rationale is a little different from mine though. I think she is trying to wean him off of his lasix some first. I don’t think I’m in total agreement with that plan right now but I’m just sitting back and letting her try it. All along the way doctors have occasionally tried to wean his lasix but it never really goes well. For some reason he really responds to them. The doctors want to wean them because they are a pretty strong diuretic. They want him on gentler diuretics because the lasix can cause kidney and bone problems. Anyway, they cut out a dose yesterday and he gained a bunch of weight last night…3-4 ounces. He should only gain about 1 ounce a day right now. The doctor just wants to watch him to see if the extra weight could be “real” or just extra fluid before she gives the lasix back.
Now for the part I’m annoyed about. We could look at his oxygen requirement to see if he was requiring more oxygen today without that dose of lasix yesterday BUT the doctor changed his parameters (what level of sats they require) so now Gaines is requiring 70% oxygen. It doesn’t mean he’s doing worse, it just means this doctor wants his sats higher, so they have had to turn him up. I’m so frustrated. Two of our doctors have accepted lower sats so as not to over oxygenate him…or not give him more than he needs. This doctor wants his sats to be between 95-98 so as not to put extra stress on his heart. I’m not frustrated with this doctor’s requirements; I’m just frustrated that different doctors within the same group differ so much on their thoughts on this. The doctors change every week so that means the requirements do too. This may seem small but it’s enough to drive you crazy when your baby goes from 48% to 70% oxygen because of a new doctor’s parameters. Two weeks ago the doctor said, if he gets above 93…wean his oxygen. This one says, if he’s not above 95, turn him up. I’m so annoyed. Oh, and PS, we get another new doctor tomorrow…one we’ve never met. Don’t get me wrong, we love all of the doctors in and of themselves (we really do) but this changing philosophies every week is driving me crazy. I’d be fine with either philosophy…I just wish they’d stick to ONE!
But anyway…I got off track there.
He really is doing well today (he ought to be on 70% oxygen!). Today’s exciting news is that he took 43 ccs of his bottle this morning! That’s the new record. He is getting better with his bottle feedings but in typical Gaines fashion…he’s doing it at a snail’s pace. I have a specific prayer request for you today. Please pray that Gaines starts making better progress on his feedings. I talked with his doctor this morning about the increasing possibility of Gaines needing a feeding tube (a more permanent tube that would go directly to his stomach…right now his goes down his nose).
The big deal here (other than the fact that he’s not feeding well) is that it would require surgery. I asked if it meant he’d be put back on a ventilator but the doctor says not necessarily. I won’t go into all the details but it would depend on how strong a stomach/esophagus muscle is. I asked if his hernia surgery could be done at the same time and the doctor said it would be up to his pulmonologist. If all of this happens, he’d be transferred to Birmingham and released to a pulmonologist since he’s a “chronic” patient. Basically, so that he could have a pediatric anesthesiologist, they’d transfer him to Birmingham and let a lung doctor (pulmonologist) be his primary physician until he could get the surgery and be returned home (as I understand it). Doing the hernia surgery now could put extra pressure on his lungs as his intestines would now be back in his body where they belong. So…we’ll have to see what a pulmonologist thinks if this feeding tube surgery ever actually happens.
Speaking of home, we talked about that a little bit today too. I asked if October was a reasonable time frame and the doctor said, “I hope he’s home by then…I hope he’s home within a month”. Now…do NOT get excited about this. I’ve heard this several times before and we’re still here. But, I do think it would be reasonable to think that he could be home in 60 days. I know better than to get my hopes up about the 30 days but I know that I will and I’ll be upset next week when another doctor tells me I’m crazy…Did y’all know I’m psychic? Honestly I think that in 30 days we might be looking at this feeding tube surgery and then we’d deal with that and then he could come home. But who really knows? Please pray for my patience as every day it is harder and harder to leave him there. I know that’s where he needs to be right now but when I have to leave and he’s awake looking at me, its dang near impossible.
Anyway, I know this is a long one but I just wanted to fill you in. Please pray for Gaines’ lungs and feedings. I would LOVE to avoid this feeding tube situation.