10-29-10 The Day After

So rereading my post and then my wife's post today I was struck by their accuracy, but also how they aren't anywhere close to the feelings that were with me during the moments after surgery. It was horrendous and I could only look at my little one for around 10 minutes at a time before crying. The good news, was it all went great - she had the breathing tube taken out at 3pm (which was early according to the nurses). She started to get medicine in her feeding tube early this morning and she started feeding through it around 1pm today. For the first time in her short life (except for a very short time after she came out) my littlest one has no tubes in her nose or mouth!!!! She is phenomenally happy about it too.

I could not be happier about this for my girl. However Children's Hospital has been an experience that has changed me for the rest of my life. Michele and I have been giving $21/month for about the last 6 years to the Angel Fund here at CHOA due to a story about a mother who had her 2-3 month old out in a courtyard down here at the hospital during a rain storm. A woman asked her what she was doing outside with here baby - the mother replied that the doctors didn't think she was going to make it much longer and her baby (who had never been outside of a hospital since she was born) had never felt rain on her face. The mother couldn't understand how something so precious was going to pass from this world without ever having experienced that. That story got to me and still does, but I didn't get it until I was here.

In the Cardiac ICU there are around 60 children from age 0-4 who all are having some sort of serious heart issues or surgeries that could severly impact their heart function. Last night there was a little boy across from Riley's area who I did not think was going to make it till today. They worked on him from 4pm - 7pm; between drugs for his heart and breathing aparatus it was constant movement around him. He has been here for weeks and his mother sits with him most of every day wondering if this is the last breath her bay will take. Diagonally across from Riley there was a 3 year old boy who had surgery yesterday and when he came back from surgery his parents were here, but he was out of it. When I was with Riley around 4pm - he truly kind of woke up and mom and dad had gone somewhere for their older child - he started crying and screaming for his mom and dad. He wanted something to drink, but couldn't due to the surgery. The nurses tried with all of their special tricks to soothe him, but nothing calmed him down till about an hour later when his parents were finally able to get here. The boy is 3 - I remember things when I was 3; stupid things that impacted me like the first time I remember riding a train or holding a bunny rabbit, this little boy will forever remember waking up from heart surgery and his mom and dad not being there. There are multiple floors and multiple wings of this single surgical hospital.

The people here are wonderful not only in their technical skills, but in their spirit and caring. But even they lose children. I'm not a pixie dust sort of person - I know that children die every minute of every day of every year, but to watch it happen changes what you feel about life and where we fit. My little one is going to go home in days, she is going to snuggle up with mom and dad, she is going to dance with her big sister, she is going to feel rain on her face - so many children won't ever go out the doors again. Michele and I thank you from the bottom of our hearts for all the time and energy that have been put in to thoughts for Riley and us - I ask you that while she is doing good today, please take a second and think of the thousands of other kids here in this building that I am in today who need our thoughts. Every one of them should have the chance to feel the rain on their faces.