The man with a plan

Plans make me happy :) Of course, I understand that plans can change... but in general, I really like having one. DB teases me about my morning ritual of "what's the plan" :)

Now, Samuel is the man with a plan. Again, it could all change in a moments time, but we can do nothing but hope for the best. Friday night was a nightmare... but he has spent the last four days getting, and trying to stay, stable. We are tweaking the "perfect storm" of JET ventilator settings all the time, constantly working on keeping his O2 requirement down, the CO2 level in his body down, and the pressure support of the JET down from the highest settings. Four days ago, most of the medical team was honest with us that they were unsure he could ever get to where he is now. Turns out, Samuel is up for a challenge!

Samuel is a fighter. We have heard it from Day 1 - now we know just how true that is! Over the last four days he has pulled himself up from rock bottom, and now he is hanging on. We are thankful for every day - every miracle. Our ideal plan would be to consider slowly lifting the sedation and paralysis in a little more than a week. He will have to be able to hang on when he's awake... this is the next big hurdle. From there, it's another waiting game. From what we understand, Samuel will let us know in the next 1-5 weeks what his little body is capable of doing. Whether it can keep up with him, and grow new lung and begin to repair some of the scarring, or not.

The ideal long term plan - of course, we have no idea what miracles look like - would be for him to come home near his first birthday, with his own lungs, on a ventilator. But today, we are still hopeful for tomorrow.

Every day with Samuel is a gift. In fact, this week has made me realize that EVERY day is a gift. When we are at the hospital, we hold Samuel's hand every minute we can... when we get home from the hospital, Olivia and George are in our arms until they go to bed... and when we are in between, I'm just trying not to get a speeding ticket. DB and I are taking each hour as it comes... nothing but hopeful and optimistic, but with pieces of reality sprinkled on top. Sometimes I hate reality - it makes me cry, a lot.