So, this is a big week for the LaFata family. Anthony arrived to Ann Arbor via ambulance yesterday afternoon. I was able to ride with him and Tony came down later with Sophia after she got her 4 month shots. The ride down seemed to go pretty quick. When Anthony arrived there was a lot of people in to see him. His nurse, doctors, social worker. It didn't take me very long to realize how much better the care is here at U of M. Tony seems to think it's not as great because DeVos is a for profit organization. Whatever it is, there is a major difference.
I felt so out of the loop of things at DeVos. Just because I wasn't able to be at Anthony's bedside 24/7 doesn't mean I didn't care about him, but that's almost the way that I felt. Last week Thursday Anthony had been transferred back to the PICU because he was having some respiratory distress which had started Wednesday night when my mom was visiting with him. I had put a new outfit on him Thursday morning that was washed in a different detergent and soon after he broke out in a rash. The nurse in the PICU blamed me for all of his issues and said that it was all related to the detergent, breathing issues and all. Well, obviously not because he was having breathing difficulty 14 hours before he had the outfit on. Come to find out from the cardiologist that they thought the rash was from a medication, but nobody thought it was important enough to share that with me and the fact that he had an infection in his trach. It's so frustrating. If we do end up going back there, I feel the only way to get all the information will be to read his chart because nobody tells me anything. It's beyond frustrating. The staff up in the ICU expected us to do this "rooming in" with Anthony, but it was impossible to fit it in with our schedules. They never supplied us with enough of what we needed to do trach care and we were never educated on g-tube care, yet we were supposed to do this, um yeah? Anyway, I will stop rambling, but I do think I will need to file a complaint. Yeah DeVos might have a nice building but that doesn't mean jack if the care sucks!
So, more on tomorrow. Anthony's surgery is scheduled for 7:30am. I am not sure how long it is expected to take, but I can imagine it being relatively long. It will be a hard day, but we have lots of family coming down to support us. He will go to the PICU after his surgery and will probably be there at least a couple days. He is currently getting some blood to perk him up for tomorrow. He got a new IV today for the blood, but will get a central line in surgery which will be great for him!
I just want to thank everybody for there support. It has been hard, but it would be much harder without all of you. Thanks for all of the cards, we do appreciate them! Also, I want to thank my co-workers for their generosity! A bunch of them pitched in and got us $200 in Meijer gift cards. That is perfect because we can use them for gas, formula, groceries, diapers, whatever! Thank you guys! Also, I received 25 cards in the mail yesterday from an online group of moms that I belong to. I was so touched!
I will post updates tomorrow as I can. Thanks again...we love being at U of M even though it is far away!
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