Not Sure What to Say About Today

I apologize for not getting this one done earlier, but Mason has kept Mama and Papa on our toes most of the day.

Generally, he had an ok day with some ups and downs. The cardiology team this morning was more encouraging and had some ideas for what might help Mason including going back on the Viagra and starting a new medication that is so specialized we have to have it shipped to our home when we discharge from the hospital. Pharmacies do not carry it. For you pharmacists out there, it's called: bosentan. So far, he tolerated the Viagra well with a little bit of desaturation, but not too bad.

Unfortunately, after the procedure yesterday, the pain and sedative medication all along, and the fact that Mason hasn't moved on his own since Friday, his gut is not moving well. Once again, we've had to stop his feeding so that his gut can catch up. Hopefully, by tomorrow morning, he'll be able to start eating again with the help of our old friend Lactulose.

Mason has been a little more touchy today and even had some tears while the nurse was doing things with his IV and his mouth care. We were able to manage his pain well with the medication, but it was still hard to see our little guy hurting. Given what happened just about an hour ago, I think he was trying to tell us that he just hasn't been feeling good today. Unfortunately, Mason had another spell of sorts today. He desaturated into the 80's and did not respond to the usual intervention of giving him extra breaths with the "bag." They did an emergent xray and found that his right upper lung lobe had deflated and was not moving air like it had with his 5:45 am xray today. Apparently, this is fairly common with intubation and can happen when the tube position is too low. Combine this with his lower lobes not being able to work as well as the stomach was pressing up on it, and it led to lower saturations. Thankfully, the pressure in Mason's heart did not increase with the episode and he's slowly coming back with some changes in the pressure of the ventilator and repositioning.

Just when we think we learn about how to intervene when Mason's in trouble, he throws us a curve ball. This behavior really needs to stop -- I'll be gray by the end of the week if he doesn't knock it off!