Half work and half dad make Doc a tired boy

Doc guest post:

Rowan saw our home for the first time a little after 1 AM 3/20/2012. I took off work to fly up so we could bring him home and although it took us an extra two hours and the rain was beating us down for about three of those, we are all home. It took three months to get here and we won't really have any answers until his repeat cath on April 17th, but we are home. He gets medicines every four hours, needs his IV flushed daily, his oxygen tank replaced if it gets low, and we keep his pulse oximeter on him when he is sleeping and we're not right by him. He gets blood thinner shots twice a day and is going to be coming off his drug habit the whole time he is home with us. He will have two nurse visits a week, a cardiology appointment every week, and throw in his hospital follow-up for good measure. Physical Therapy and Speech Therapy are going to evaluate him and see what they can do for him. There is a lot of crap going on for one little baby. What I am trying to get at is this: you can say this is a step forward, but only if you don't really understand what is going on with him.

We go back April 16th for his cath on the 17th and from that we will know whether or not our son is going to reach his first birthday. That is not a dramatization, an exaggeration, or even a gentle stretching of the truth. We can be optimistic about it every once in a while, but there is a pretty decent chance that things will not go the way we want them to go. That gives us about a month of trying to forget about how sick he is, whether his oxygen saturations are dropping, rising, or whatever other craziness could occur that would mean he is having trouble. Failing every minute to forget that we are going to have to bury our son. It might not be before his next birthday, but it will be in our lifetime. You will forgive me for my non-descript "ya, things are ok" answers when you ask how things are going. They're going really terrible, just like they have been for the last few months. A lighter shade of terrible is still worse than neutral by a long shot.

Tonight, we were watching Lady and the Tramp as a family and Evelyn put her pillow down by him on the floor and said "Im gon taka nap with baby ronan" and lay down next to him. What the hell are we going to tell her if he doesn't get to come home the next time...

Elle's Thoughts:
We know how bad this is. My husband and I, we know.  Rowan doesn't.  He has no idea he's sick or different.  Evelyn doesn't quite understand though she knows he is sick and she makes sure I notice if his pulse ox alarms while he's sleeping.  But she knows he gets diaper changes and formula just like lots of babies and that he gets medicines to feel better.  Speaking of feeling better, Rowan seems so much happier here.  He smiles more and is more active.  He loves to watch Evelyn and see what people are doing.  He sleeps better.  There are moments where I look at him and think "How can you be dying?  You look so much better!" Bringing him home is absolutely the right thing for our family. It's hard work, but we have support.  Doc and I, we know how truly tragic our situation is, but we are going to LIVE this month. That does not mean that our hearts aren't breaking, but you can feel joy and sorrow at the same time, and we're pros at it. Things are going terrible. But our son is home with us.  The four of us are together. We're trying to live each day, but don't think that once the kids go to bed we don't break down.  We struggle to stay upbeat and focused on what joy we feel.  Every single thing you do to help us keeps us stronger for a little while longer.  My friend and co-worker Camille brought us dinner tonight.  Just having a familiar face stop by and visit gave me what I needed to power through the evening.  Every one of you matter. Every single comment, like, text, act of kindness - it matters.