Monday, July 28

Dad before the fateful "accident."

A very comfortable position to sleep in.





Nurse Laurel, who was the first nurse Erin had.

Attending cardiologist Amy Shah. Amy did a number of the pre-natal echo's on Sheila.

Attending Fellow Molly Ball, who has been with Erin since the beginning.

Erin's wild hairstyle - bed head at its best.


Well, today was a big day. Bottom line (I always want to know the bottom line first), in the cardio conference, there was a tremendous debate over Erin's treatment. Led by lead cariovascular surgeon Dr. Mavroudus, it was decided that even the smallest shunt would lead to Erin oversaturating her blood with oxygen and lead to congestive heart failure. The thought was that she would so overdo it that they wouldn't be able to manage her oxygen levels at all. As a result, she is now off all oxygen and we will wait to see how she does. This is a 180 degree shift from Friday, where they literally were throwing in the towel.

Over the weekend, Erin did fairly well, although there were times where her sats were just too low. Saturday was fairly depressing, but she seemed to rebound on Sunday. Right now, with no oxygen for the last 90 minutes, her sat level is 84. She is also in a very deep sleep, which is where her levels tend to be the lowest, other than when she cries.

We are going to give her a few days to see how she manages with no oxygen, and then reconsider the surgical option. The upside is that we have yet one more shot at getting her home with no surgery, at least initially. The downside is that we are now faced with managing our emotions so that we don't get too excited and face another crushing letdown.

Erin also had her MRI about 1 pm today. We don't have the results yet, and may not until tomorrow. Needless to say, we are highly concerned about the outcome of that test. How ironic would it be for Erin to beat the heart problem only to face another undiagnosed issue?

One of the little joys we have (ok, not so little) is when Erin is awake and alert, and interested in what is going on around her. Just after her MRI, while Sheila went to pump, I fed Erin. When you feed her, she tends to stare into your eyes while she eats. She is a very good eater, by the way, knowing just how to pace herself and not gulp food. After feeding her, she sat up in my lap and seemingly enjoyed the surroundings while we shot the breeze with one of the nurses. Even while I changed her diaper after a massive bowel movement she continued to coo and have a good time. As I was changing her diaper, I was kidding nurse Katie that I would put myself up against any other father in the hospital in a diaper changing contest. No sooner had I finished bragging about my diapering skills and sat back down with Erin in my lap when she decided to let loose again. At first, I didn't feel anything. Then I began to smell it, much more so than usual. Katie started laughing and remarked that we were about to put my diapering skills to the test. When I lifted Erin up, I found a remarkably large green runny puddle all over my lap and crotch (fittingly). I maintain there was a defect in the diaper. Katie maintains I am incompetent. In any event, it was everywhere. On the plus side, Erin seemed quite pleased with herself and was quite content while I cleaned everything in sight and changed her diaper yet one more time. I failed to mention that during her feeding she decided to projectile burp all over my black t-shirt. I guess she felt that between the combo pooping on Dad and burping all over him as well, she was having a very productive day. I saw more smiling from her after those two incidents than I have seen in the past! Needless to say, I am quite glad we live so close, as I was able to buzz home and quickly change. The nurses and Sheila found the whole event quite humorous. To tell the truth, so did I. I got a good laugh which I badly needed.

So now we are back in the waiting and watching sats game. We shall see.