The Latest on Antonio

Thankfully it was another mostly uneventful week. We took the ativan completely away Tuesday, and I think that Wednesday he started to really feel the effects of that. The withdraw symptoms weren't as severe as in the past, but he wasn't himself. He also got 3 vaccines that day so Thursday he really didn't feel well. Today was better, but there were still some lingering issues. He was able to take 13mls from the bottle Monday, 10mls Tuesday, and then only 5mls Wednesday and today before spitting up. We didn't even attempt yesterday because he didn't even want the pacifier. Hoping that tomorrow he'll be back to himself. They didn't touch his vent again this week, which was great because he already struggled a little more with how he was feeling. Monday they'll talk about starting to make it harder for him to trigger breaths again so that he can work towards the home vent. Hoping and praying that he doesn't hate that too much! Grateful to have him here

 I'm going to do a bullet point update this time around, as there isn't as much to explain thankfully!  Tony got his VCUG (test to see if he has reflux of urine into his kidneys) last week after they saw swelling in both of his kidneys on ultrasound the week before, which required a prophylactic antibiotic on top of the antibiotic he was on for his SIBO (small intestinal bacterial overgrowth). I really didn't want him to have to take those and tried to run interference but the urologist was very unconvinced that it would be an issue. The combination of antibiotics caused him to have at least 3 bad days due to his belly hurting so bad, and it basically cancelled out the treatment for the SIBO for that time. He ended up having breathing issues because of it, which scared us because if he can't handle these vent settings the next step is re-sedating him. That is unimaginable at this point. Thankfully the VCUG showed no reflux and he ended the SIBO antibiotics this Monday.

Tony turned 6 months on February 1st, he'll be 3 months adjusted age on February 10th. 6 months in the hospital seems unreal, and was a hard pill to swallow when we realized. Thankfully the next day we had a major turn around.  Since the last update a lot has happened, until this past Friday not much of it was good. They trialed Tony on the home vent on the Thursday the 25th and he was left on it for 3 days. He wasn't tolerating it by the end of the first night, but we were told he needed to ride it out. The 26th he had moments that he was really struggling, but would wear himself out, so most of the times that he was being assessed he was sleeping and looked fine. They decided not to increase the vent support, but wanted to have a low threshold for increasing over the weekend. It was a PA that was fresh out of school who was supposed to be supervised by an experienced NP who managed him that whole week, I didn't realize that she was on orientation still until this week bec