Pulmonary appt.

So, we had the pulmonary appointment today. To be honest – it was a little bit of an emotional day for me. I guess being in that waiting room with other parents with their special needs kids – well I guess it took me back to being at the hospital again. We are part of a group of people that no one wants to be in and that’s just the way it is. I did get to talk to another mom – her 3 year old daughter has a trach. I think of Murphy and all the joy that we get out of hearing him laugh and talk (at 2 years old) and that mom has never heard her daughter do those things. We know what we’re missing, and that just makes us sad sometimes. We changed her trach on Sunday and in the split second the trach was out she made a sound. I had the new trach in before we even realized that she made it. Another mom told me that they would take a few seconds to put the new one in so they could hear their daughter cry. Ugh – the simple things we take for granted…never again!Well, overall, the appointment went fine. He educated us on all this oxygen stuff we’re dealing with. I’ll spare you the details – basically, because of her heart defects, we cannot expect her oxygen saturation levels to be in the high range (like a normal person). Her “normal” is just lower than usual. So, until they repair her heart, she’s going to need supplemental oxygen. And your body needs oxygen to grow – so clearly we don’t want to hold back now! We feel much better now. We were thinking that it was a goal to get her off the oxygen – and we were failing. Now we know better and that makes it much easier for us to handle and accept. Our nurse started on Monday. It was weird to have a complete stranger in my house taking care of my baby. But I think the relief of having some help outweighed the uncomfortableness. She will work M,W,F totaling 40 hours a week. We’ll see how that goes and make adjustments as necessary. Have you seen that commercial where a mom is talking to the babysitter and you think that they are going out to see a movie – but then the mom just walks into the living room to watch the movie on their own TV? For some reason that comes to mind. Well, that’s it for tonight. Hope you are all well.-Christy