Consensus

So today was different. I got an overload of information and found out they've given Christian a 9:30AM spot for trach and g-tube surgery tomorrow. My husband is really in support of this but I'm just still wondering if we're doing the right thing. He does cough occasionally but that's not enough to keep his air way clear. And as an infant who's still teething, he will have saliva that runs down his little throat into his lungs. The way the doctor put it - he could keep getting pneumonia after pneumonia, which could eventually kill him. Well, I guess that put things into perspective. And they just want to keep moving along, which I'm not opposed to. I just wish it was different.

The doctors and nurses are ALL in consensus. Not a one will bend on their position that a trach is the best option. A nurse came in to talk to me and I asked her what would happen if we just gave him a trial by taking out the tube and seeing how he does. She said she's 99% sure that he won't do well. She's never seen it happen without a strong and substantial cough and gag reflex. She suggested that I didn't seem sure and that we didn't have to go through with it but I told her, "There really doesn't seem to be any alternatives and nobody really wants to wait anymore." I'm struggling with this with all my heart because I wanted so badly for him not to have to get one. Add to that, getting a trach makes things a little more complicated, recovery wise. It's not the taking care of it, it's that it moves us into a different bracket of long term care needs. This is good in the long term aspect with regard to coverage, but in the immediate future and in relation to Christian's immediate recovery, the state REQUIRES him to go to a transitional long term care facility for at least 30 days in order to qualify for all of Christian's needs and long term coverage. Lovely insurance companies won't cover what he will need. Great.

And it gets better...the only transitional facility is in Phoenix. This is 2 hours away. I can't believe that with two major children's hospitals in this town they don't have one transitional facility??? And this is required by the state!!! If we take him home right from the hospital, as we planned, they won't cover anything. We're on our own. I don't understand why this has to be so difficult in an already difficult situation. The gist of this day was that I feel like all these people are making all these decisions and recommendations about Christian's care and I have no second opinions or alternatives. I feel like I'm at their mercy so I'm just praying we're doing the right thing for our son.

The surgeons explain the trach as a more temporary device, while the doctors and nurses suggest it's more long term. I'm just listening to the surgeons. He already has a cough, he just needs to strengthen it and then we can remove the trach.

So Christian is headed to surgery tomorrow for his trach and g-tube (feeding tube in his belly) at 9:30AM. Please say prayers for Christian and for us that we're doing the right thing for him.

ETA: I want to end on a positive note...two things.
1) After Christian gets his surgery there will be no yuckiness taped to his face and I'll be able to see my beautiful baby's face again.
2) I found a private neurologist who gives HBOT treatments and treated a boy with Christian's condition who came to them in a vegetative state. The boy is now running around. Awesome!