more awake time

 This week wasn't as eventful thankfully, and Antonio spent some more time awake so that was nice! It's also a little scary because he seems to panic a lot, I'm sure it's hard to take everything in the less sedated he gets. 

Fredy and I got our house checked out by the medical equipment company and everything was good to go there. We are checked off on just about everything on our skills checklists too, so we're just waiting for Antonio to get on the home vent so that we can schedule our vent class and do our solo shifts taking care of him. We each have to do two 8 hour and two 24 hour shifts where we do everything including emergency trach changes. 

The chronic vent pulmonologist sat down and talked with me about the CT of his lungs they ordered. She said she wasn't surprised by any of it, but it does look awful. I stumbled upon one of the attendings who hadn't seen any of the xrays talking in the hall, he was shocked. He said Antonio looks nothing like his xrays, which I've heard a lot. The pulmonologist said that she still sees him off the vent and most likely decannulated by age 2. I expressed all of my concerns to her and the NP that will be following him as soon as he's stable on the home vent about how he has panic episodes and can't go a day without having pretty significant breathing issues. I feel like I've watched him have an asthma attack multiple times a day for the last 5 months. It's improved, a lot, but I can't picture him going home in less than 2 months at this point like they say could happen. They assured me that he will be stable, but not perfect, before we bring him home, and that it's all going to work out. I'm going to try really hard to trust and just be his mom each day. It's hard because we have a different attending doctor every couple of days and his nurse practitioners rotate every couple of days too, and the plan seems to shift constantly. I'm the only constant. The pulmonologist told me I should express those concerns to management because they have been trying to get the staffing inconsistencies, the fact that there are so many new nurses over on our side of the PICU, that there's a shortage of supplies, and much more changed for a long time but they think it would be helpful to hear the perspective from a parent. When we had to get the house inspected I asked the day before if we could just have a night nurse that has had him before since we've only ever missed his night time cares a couple of times and never since he got his trach. We just wanted someone who knows how we do things. They told me that the one chronic vent nurse on nights who has had him before would be there. When I called to check on him it was someone we had never even met. I know there were nurses there that night that have had him. We found out on Monday that there were no extra trachs in the size that he needs in the whole hospital. It took until Thursday night to get someone to figure it out and get more ordered. It's just very hard to trust. But I do believe that somehow we will get to bring him home and even if he's not doing as well as I would like, I think once we're home he's going to thrive like they say he will. Until then I probably need to try not to get wrapped up in the minor details that frustrate me and change so often. Once we're on the home vent the chronic vent team will take over management of his care completely so that will help! They are probably going to try him on the home vent early next week, but expect him to take a couple of tries before he's able to tolerate it.

Hopeful that as we continue to wean his sedation that we'll have more and more awake time. This week we got on the floor mat with therapy for the first time! That was a really exciting moment. PT was happy with his neck and trunk control and was just as excited as I was that he tolerated it all! She's been with him for months waiting to try it out. He also got a personal guitar and song concert from the music therapist that we loved, she also had great ideas for how to use music to help him. Praying that he will keep improving and that we will be patient!

Big Tone on his mat! >
floor time wore him out! >

more cuddly each day >




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