How is Timmy Doing?

Yes, we know the big question everyone is wondering and praying about. 

"How is Timmy Doing?"

This is an easy question to answer, and a hard question to answer. Sometimes, Timmy acts well, feels well, and smiles a lot. But even in that, a little congestion or mucus in his throat throws him for a loop and he struggles to breathe and he hacks and coughs and sounds like he is dry heaving. 

Then there are days where something seems off. This week, he wasn't wetting diapers as frequently as normal one day. This is important because if he is not wetting diapers, it may mean that he is holding on to more fluid, and that is a problem for patients with congestive heart failure. The fluid builds up around the heart and lungs and makes it harder for the heart to work and harder to breathe. At the same time, his oxygen sats were going down much lower than normal, and he was panting more. If one thing gets thrown off in his balance of medicines, feeds or how his body is tolerating them, it throws a lot of other things off.

This week's medical imbalance seems to have been related to gas issues, and have been resolved. Timmy is back to being active and content most of the time. All the while, we keep finding out how many things we still don't know about caring for a child like Timmy. The steep learning curve continues. So we continue to ask questions (even ones we have asked before and didn't absorb the answer well), and continue to adjust in little ways to help Timmy out.

We are thankful for each new day and each new smile and strange look that Timmy gives us.