Heart of Beckett

UPDATE 11/19/18

Today was an interesting day. Beckett had a pretty good night, but unfortunately his oxygen didn’t get weaned at all. Then this morning his heart rate was fairly elevated until the early afternoon and his oxygen saturation was lower than it has been. His cardiologist tried taking the oxygen off all together to see how he would do and that sadly lasted a very short period of time. So he’s still where he has been for days. They added a new breathing treatment today that has a special piece that makes his lungs vibrate as he breathes in the medicine. He didn’t like it the first time, but he was doing really well with it this evening. However, it made him cough, a lot, which is what it is supposed to do, but he coughed so much it made him vomit and they had to be done before the medicine was finished. He will get it three times a day so hopefully tomorrow goes a little better.

I was feeling pretty discouraged today as it seemed Beckett was actually getting worse and not better. So, I spoke with the resident for a long period of time and was able to get all my concerns off my chest. She took them back to the team for discussion. They did do another chest X-ray which looks better than the one from Friday, so that’s good news. She came in later to discuss things with me and my mom and I both specifically asked if they were at all concerned his heart could be playing a part in this. They are not, thank heavens. They continue to encourage us that this appears to be a very nasty virus, plus partially still recovering from the previous pneumonia, and it has just really knocked Beckett down. She said this kind of thing could really take a toll on a normal kid and Beckett is already high risk. They are even talking about sending him home on oxygen that we could wean as he continues to recover should they not be able to do that here quite yet. They don’t want to keep us in the hospital just for a little bit if oxygen. So, tomorrow is a really big day. We need to see some good improvement throughout tonight and tomorrow. If he can do that we might be able to come home Wednesday. We are hoping to spend the holiday with family, but we don’t want to take Beckett home and end up right back here again. Only time will tell.

Beckett was able to play tonight with my mom and sister and he even had school today with one of the Riley teachers. That helps break up the long days and keeps him learning while he’s here. He truly misses his friends and teacher and asks often when he can go back. They sent him the sweetest get well video today and his face completely lit up at seeing them. Thank you to all who have shared encouragement and support. It definitely helps us get through the days.

Daddy went home today to work and stay with Milo. Sweet Milo seems a little confused by all this as we have hardly been able to see him. We FaceTime every day but it’s just not the same. I was able to see him yesterday for a couple hours as I snuck away to my sister’s baby shower, and now Jonny is home with him. The sweet thing just clings to us like a monkey and yesterday he kept grabbing my face and giving me kisses. We can’t wait to all be back together. Maybe it will be over a nice turkey dinner!