The Latest on Antonio

What a week. After Antonio's first trach change we spent the weekend getting him up in his little chair, holding him, and trying to do some tummy time. He was still very sedated, so he slept through most of it, but it was good for him and fun for us! We even saw Santa on Tuesday! He was having some issues with breathing hard when he would wake up, so we tweaked his vent settings back up. They had made some adjustments last Thursday and Friday because he was doing too good on his blood gasses, probably because he was super sedated. So all week they worked on weaning him down and messing with the vent. Tuesday morning we heard from a pulmonologist that she suspected that we would move to PICU within 24-48 hours. Everyone else said no beds were available. Wednesday we heard we were moving, then nevermind we aren't, then wait yes you are, and finally about 6pm they said we weren't. So we had packed everything up, only to have to dig some of it out to take care of him yesterday....

 Antonio had a pretty good week, all things considering. As usual he took a lot of sedation medicine to make him behave, but most of it was just him wanting to move and we couldn't let him do that. He had such good blood gas yesterday that they actually weaned a couple of his vent settings. The gas was probably so good because he's been more heavily sedated, but still better than doing worse than before! There was a good chance that could happen. We waited all day today and had completely given up hope that he was going to get his first trach change before the weekend, which then would have meant him lying in bed all weekend and not moving! Finally at 6:30 they showed up, changed it out, and Fredy has been holding him since. His trach stoma looked great and so did his skin. All good things! We're nervous about how he'll handle everything once the sedation starts being weaned, but he should be happier now that he can move and have his hands free and we can play with him ...

  Trach and G-Tube are done, everything went really well. Antonio is resting comfortably, we should be on track to do his first trach change on Friday. That is when the fun should begin (: Look at those cheeks!!! Pretty amazing getting to see his face free of tubes for the first time.

If you would have told me that I'd be excited about getting Antonio's trach scheduled a few months ago I couldn't have possibly believed it. Even up until a couple of weeks ago. He's on the schedule for Monday, and we're very at peace with it all. We've grieved what we knew could be the loss of bringing home a "normal" baby or even bringing home our baby at all for months now. I wanted to think that if I fought hard enough for him I could overcome the obstacles that were put in his way since the day that my water broke. Do I still think some things could have been handled differently, maybe allowing less damage to be done to his lungs by the vent? Possibly. Do I think that he would have been able to leave the hospital without at least a nasal cannula giving him oxygen? No. Do we know that we are blessed beyond measure that we still have him with us and that he's able to even have the trach in order to come home with us? Absolutely.  The home vent d...

Big Tone (new spelling after some input on the phonetics lol) had his airway eval today. It was supposed to be at 4pm, but for the first time in his little life we lucked out and got taken early this morning! That meant he only missed 2 feedings, which was great.  The ENT (ears/nose/throat) doctor who performed the procedure explained afterwards that she was pleasantly surprised with how textbook his airway looked. She is used to seeing swelling, breakdown, irritation, and narrowing in these babies from being intubated multiple times and for weeks. Antonio's basically looks like he's never been intubated. That is great news because that means that she suspects he will be able to have a normal voice and swallow normally someday. I'm not sure if that means while having a trach or after, I'm going to ask that question tomorrow. The only disappointing part that comes from such great news is that we now know that the deficit is completely in his lungs. We all thought that th...

  Thankfully we got some things accomplished this week. Tuesday BPD did their discussion about him at their biweekly meeting. I don't have all the answers yet, but according to our attending that was at the meeting, their recommendation is to move forward with a trach in the next couple of weeks. BPD did not see a need for an airway evaluation, even though everyone else seemed to agree that we should have that information before deciding anything. We don't have to do a trach just because they recommended it, but there wasn't really another plan offered other than to stay on these settings and wait. They also all of a sudden didn't see a need to wean him off his steroids even though that's why we trialed extubation, to give him a chance before weaning the steroids! We're weaning them anyway, just slowly. We are going to go ahead and do the airway eval Monday, that will tell us if there is something major that can be corrected or if there is something that can...