Most people know that Anthony has had quite a few hospitalizations and has been in the hospital more than out of it. On Monday the babies turned 3 months old, and we celebrated with a trip back into the hospital with Anthony. He was having more blue spells where he would stop breathing and his breathing was more labored. We weren't sure if this was related to his heart problem or if it was an airway issue.
Lots of doctors came to see Anthony and he was admitted to the PICU. It was then determined that these episodes were airway related. So his ENT doctor (Dr. Taylor, LOVE him!) decided that he needed a trach. There was discussions with his cardiologist as well as the cardiologists in Ann Arbor where he will eventually get his heart surgery. They felt that it was important for him to have the trach. So, that's where we are. Dr. Taylor told us that his airway was 75% of the way obstructed, no wonder why he was having such a hard time.
Having this trach will bring lots and lots of teaching. Being a nurse, I have had experience with them on big people, but not little ones. I will be quite constrained as to where I can go and what I can do with Anthony. I will not be allowed to drive with him alone in case something were to happen. They are strongly suggesting that we get a private duty nurse to stay with Anthony at night so that we can sleep because somebody has to be up with him all the time. Tony isn't too keen on the idea, but we'll have to do what's the best for Anthony. There will be lots and lots of supply needed so it should be interesting.
Yesterday the genetics doctor came by to see us. On Anthony's last admission, he saw him and did a workup to see if there were any genetic issues going on because his heart defect and spina bifida is a pretty rare together. But, the test came back with no abnormality, so that is good. He wants to see Anthony in about 6 months just to see how he is developing.
Today Anthony is doing pretty good. The worst part of all of this is that my baby can't cry. He tries, but only some air comes out of his trach, there is no sound. I also became a little sad because I won't be able to hear him coo again, and that was so cute. He hasn't smiled in 2 days either. I know he has been through so much and is probably uncomfortable, but I would love to see him smile right now. The speech therapist came by to see Anthony and he did really well with a feeding. He is at risk for aspirating on his milk with the trach, so they want to make sure everything is working right. He will be going down for an xray in a little while to make sure the swallowing is all good, then he can eat again like he loves to do!
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