Met with our doctors here today

I wanted to give some of the latest info that we're dealing with now. We met with Dr. A. today, Peanut's pulminologist. He actually stopped in to see hubby briefly last night. So today we both talked to him. He had some reservations and concerns about what kind of life we were giving Peanut. Being on a ventilator 24/7 is extremely difficult to care for. It takes a real toll on you, the child, the family, and everyday life.

It's not that he thinks we shouldn't do that. He wants us to be aware of what we're in for. I think he wanted us to know this since we know that Peanut CAN be without a vent. She won't immediately suffer fatal consequences if her vent fails her. There are some kids he treats that this is the case. So he just wanted us to think about things. Especially since the ROHHAD team is doing things mostly as a study. Not that it's experimental or anything like that. But there aren't any real answers yet. We don't have a cause or a cure right now.

But, after talking with him today, he told us that we should certainly follow the CMH team's recommendations. He basically wanted to lift off the burden of us choosing. He didn't want us to struggle between two different medical thoughts. And it's not as though what they're doing for the ROHHAD team is hurting her in any way at all. He just knows that caring for a vented child, 24/7, is very hard on families. Which I totally understand that.

We also talked about the vent we chose when we were at CMH last week. We chose one that we thought would be best. However, we've since learned that most hospitals and pediatric respiratory units don't use it. They use the LTV. So, we've decided to go with that one instead. If something happened while she was on the Newport, and we came into the ER, whether it was here at LGH or at CMH, the staff there would almost certainly not know the Newport. Whereas the LTV is the standard. So knowing that, we knew that we couldn't take that chance.

The days here are becoming longer it seems. We're all getting bored of being in here. Plus she's still in isolation. The tests ate CMH came back negative, but then they wanted to double check here. So hopefully, tomorrow we can be out of isolation. Then we can start taking walks again. She's done hardly anything since getting back here.

I did want to say thank you to Kathy, Marianne, Mike, Nicole, and Joe for all stopping by over the past 3 days. She really loves to have visitors. Even if she doesn't seem like it when you're here, she does like to see new people. She doesn't need gifts, cards, books, or toys, just a person to talk to.

I'm sure you can only imagine what it's like, we've been here for 2 months now!! We still don't have any date for possible discharge. And since we changed vents today, they'll need to get us trained in that. But that's easy. And they're still waiting for the Medicaid waiver to get through, plus the home nursing agency needs to get the staff we need to get started. So while we really WANT to get home, we know there's a lot to take care of.

I think that's it for now...