Well I am pretty emotional right now. A new team of docs started this morning and so far have been very good with me. I showed them the video and the one doctor looked pretty emotional. They talked to the lung docs here and they are not wanting to do the sleep study at all until A’s GI issues are figured out. Not surprising, and makes sense.
The ph probe showed severe reflux which I already assumed but he was also off meds at the time. GI from here will be coming to see me tomorrow to discuss adding another medication to his prevacid. Fundo has also come up. I have been against a fundo for so long but it looks like I might have to give in to my fears. We will see.
They are also going to do the initial bloodwork to look into some sort of metabolic disease. The whole workup for these are very expensive but if the two things they are going to look for are off slightly they will do the full.
His CO2 was also pretty high in yesterdays bloodwork which is concerning to them. They are going to repeat it in the morning when he gets up to see what it says then and compare it. Just one more thing that leads them to believe that it is central apnea.
NOW, the docs think that A has central apnea as well as obstuctive. They are calling ENT to come and do a scope. I am very scared about this because I have a feeling it will put him into one of his big spells. When we saw ENT on Wednesday he didn’t want to go all the way down in fear of this. When I brought this up to the docs they said that they have everything here on the floor needed to deal with it if he does. I don’t think I am going to be able to stay in the room when this is done. I have been dealing with such guilt feelings on things that A is having done and I think this will just be too much for me. I just pray that IF he does have a spell that he will be okay.
Next, if he does have central apnea then the doc said that we are looking at HUGE things happening ahead. I asked what and she told me that she didn’t think that I would want to know at this point. I said yes. Well that is when the trach came up again with ventilation. I am beyond heartbroken. I know that I can’t jump ahead but it is so scary to imagine A being on a vent. Nevermind the fact that I feel like I will be putting him through it. The life he lives now will just not be the same. I haven’t stopped crying since this came up.
So that is about it for now. Please pray for my little man. I am just so scared right now for him. I think I am also afraid for myself because I can’t imagine losing him. And I know that with these spells there is a possiblity of this happening.