Anthony is still not taking anything by mouth. We have been trying like crazy multiple times a day and there's no progress. He acts like he wants the bottle but as soon as he gets some formula in his mouth he starts gaging like crazy and coughing. The speech therapist brought him a special bottle that will help control the rate of the drip, but that didn't really work either. He sucks on his pacifier like a champ, so it is so disappointing that he isn't taking anything by mouth. So, he still has the feeding tube giving him formula into his intestines. I think the doctor's are giving him this week and if he can't eat, he might need a tube place on his belly for feedings.
Airway Oxygen came by today to drop off his apnea monitor and portable suction for the trach. I also got a lesson on how to use them. It doesn't see too difficult.
I felt that today was an overall crappier day. Anthony is having lots of spit out of his mouth which is so unusual for him. I don't know if that is happening just because he is having trouble swallowing or what. Also, he is having more secretions from his trach and was needing a lot more suctioning today as well.
He also ended up having 2 more of his blue spells today. With the first one, PT was working with him and trying to do some tummy time. He didn't like it and it made him go into a spell. He stopped breathing, dropped his sats and his heart rate went into the 50s. He had to be bagged and came out of it after 45 seconds. Then when we changed his trach today he did it again. After these episodes he gets ghostly pale (even his lips completely lose their color). It takes quite a while for his color to come back. The doctors don't think it's a "tet" spell (related to his heart defect) or seizures. They say if a baby gets mad enough sometimes they hold their breath and cause these episodes. I would be okay with that if Anthony didn't have his heart problem, but he isn't like other babies and his heart needs to be watched very closely. It's so frustrating! Part of me thinks we should just go to U of M and see what they can do for him.
The hospital is telling us that we need to do a rooming in period where Tony and I care for Anthony completely on our own for 12 hours straight at different times. The more I think about this the more upset it makes me. First of all, there really isn't any time where Tony can do this because he works. He could do it on a Saturday but then I have to stay up all day with Sophia. Then if I do it during the week, I will have to take Sophia with me and Tony wouldn't be allowed to come pick her up after work. It says in the guidelines that we are allowed a 30 minute lunch and 30 minute dinner, gee thanks. We have to call the nurse to give meds and do all of his care for the day (even change his bed, seriously? I don't change his sheets everyday at home). I feel like I am being babysat. I'm sorry, but I know how to take care of my baby. We have gone through all of the trach teaching and have been taught how to use the equipment. I have been at the hospital everyday taking care of Anthony, but apparently that isn't good enough. Plus, there will never be a 12 hour period where either one of us will be alone with Anthony by ourselves, so why is it necessary to have to do that at the hospital.
So, this is the latest for the week. The roller coaster ride continues...hoping it will soon stop or at least slow down!
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