So, at the hospital today, the respiratory therapist came in to give Anthony a breathing treatment. Then she asked the lady teaching us the trach care if she had heard what happened to him when they changed out his trach yesterday (the first one since having it placed last Wednesday). Apparently he had a spell where he turned pretty white and pretty much passed out and his heart rate dropped...that would have been nice to know. Thanks guys for keeping me in the loop, it's seriously annoying to me sometimes the lack of information they give to me. Then tonight his nurse called and said that he had an episode where he turned blue, got stiff and his heart rate got into the 30s (which is EXTREMELY low, usually it is 110-140). They had to bag him (use a resuscitation bag) and he eventually came out of it. This sounds like his "tet" spells that he was having before. I was very disappointed to hear about them because I thought the trach would have fixed things. So who knows, maybe he will end up having his heart surgery sooner than later. I am planning on going up to the hospital early tomorrow morning in hopes of catching some of the doctors that will be rounding on him.
The other issue that we have is his feeding. Ever since Anthony was born, he has been an amazing eater! Now he is struggling with it. He has an NJ feeding tube to give him nourishment and he is working with speech therapy to try to be able to eat orally. The nurse tried to feed him this morning and he took the bottle, but then got really upset and started coughing and ended throwing it all up. Then I tried to feed him this afternoon and he just didn't want anything to do with it. I am hoping that he doesn't end up with a feeding tube and that he will soon figure out how to take his milk orally! So, I think we are still a ways away from going home unfortunately :(
Anthony with all of his balloons
Sophia & Anthony
Sweet Baby Boy
Sophia being so happy!
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