April 4, 2009

Hello and good evening. David here from Caden Marshalls room. Today has been relatively uneventful. Melissa and i spent most of the day away from Caden in a Parents Education session. CHW hosts these things once a year and we were able to participate. It was a very informative day that hosts many families with children with CHD. We learned more about the construction of the normal and the not so normal hearts like Cadens. We learned more about the at home monitoring program, which I hope we get to use on day, and we also learned about some limitations that we will have to impose on Caden as it relates to exercise, germs, diet, and growing up. It all seems minor to us as long as he gets to grow up! I think the best part of today is we met a bunch of families whose children have HLHS. It was great to meet a group of people with success stories of which we hope to become one.

The biggest update today is I dont think Melissa took even one picture. If you know my wife, you know that pictures are her thing and to go a whole day without taking one is worthy of a mention in our daily update.

Caden is still eating okay however he did not keep much of his 4pm feeding down. The doctors are really getting concerned with his low oxygenation levels and started him on yet another medication. This medication (Pentoxifyllline) is designed to thin the blood to improve the flow. This is a supplement to the baby aspirin his is already on. We have expressed the concern about low oxygenation levels and the effects on neurological development and they are listening to us and trying different things.

As of 10:15 tonight, his rs02 levels are in the low 80's which is much better than the low 70's where they have been for the last couple of days. Dr. Nancy thinks that his BT Shunt maybe getting outgrown which could cause the low levels, because blood may not be passing through it easily, so she added him to the blood thinner to overcome the restrictions of the shunt. They have also increased his oxygen levels to compensate which is the wrong direction to get him home but the right direction in preserving brain development and reducing the amount of injury to the brain. Melissa and I so badly want to take Caden Marshall home but we know that development is more important than a month home before the second surgery (bi-directional glenn). We will see what the next week holds.

Melissa and I got out for dinner tonight which we enjoyed. I am sure it was not as good as the fair that Chikos was offering today for the annual final four get together however we found a family owned italian place and enjoyed some pastas which I complimented with a nice glass of red. Yum.

We continue to be blessed with your support and we pray for additional support and for a day when you get to meet Caden Marshall Smith.


David & Melissa