Did you all think I forgot about you? Well, I haven’t
Since the girls have been home, we have tried vigorously to get life back to normal. And what a task that has proven to be. I have said before that Kelsey does not do well the days and weeks following surgery. Why should this time be any different? I know why, now we add a 5 month old baby into the fold and see what happens.

Enough philosophy, lets get to the point. While we have many indicators to gauge Kels’s improvement, we have seen a slight improvement in her resting heart rate. Over the past few nights, I have gone into their bedroom and seen the monitor above 100, somewhere in the 115-122 range. This would be around 3:00-4:00 am, when you know she is in a very deep sleep. That is tremendous by some standards, given that only 4 weeks ago her rate was around 73-77, dipping into the 60’s. From that alone, I at least, can see somewhat of an immediate effect from the surgery. On the other hand, before we dash from crowded forest to the mine laden field, this does not mean she is complete and we can count this journey complete. We were fore warned and highly anticipated these types of results. The brain and stem and have been under such an enormous amount of pressure, any release at all will cause a change. What we do not know is how constant this change will be. Dr. Feldstein told us not to expect to see any type of permanent change for at least 3 months. Basically the brain is trying out it’s new settings and may find that it is not happy with them.

On Friday April, 4th we met with Dr. Long, a pediatric cardiologist here in Savannah. He was recommended by a Dr. in Atlanta who is friends with Dr. Bohney from Columbia Presbyterian in NY. Did I tell you that the cardiologist in NY was named William H. Bohney, aka Billy the Kid. I pointed that out, but he did not find nearly as amusing as I did. Anyway, Dr. Long made a few comments that made us relaxed and let us know he is taking an interest in Kelsey’s case. First of all, he told us as he was reading her chart he saw some big names in the pediatric cardio field and he knew better be on his “A” game. Secondly he told us her heart condition is rare in children her age, but not totally unheard of. The problem is how do you correct it. Before we discuss a solution, let me identify the problem. First, lets imagine driving a fine German automobile, say a Mercedes. Imagine driving that car on an endless freeway with varying speed limits. Now imagine driving that car with one foot on the gas and one on the brake, the entire time. As you approach the higher speed zones, you press harder on the gas and less on the brake. But then you enter a lower speed zone, so you press slightly harder on the brake and apply less to the gas. This scenario goes on all day and all night with the heart. The brain raises and lowers the heart rate constantly throughout the day, always maintaining an even, gradual transition from low to high back to low back to high. You probably never feel it, unless you are startled, scared or experience any other type of emotion. With Kelsey, her brain will be driving fine with the gas all the way down, the the brain STOMPS on the brake. Then it JUMPS on the gas and the rate goes back up. What is not happening, is that the brake is never released, allowing the heart rate to go up to what would be a normal rate for her age group. As we all know, and we were told in NY, the body’s natural pace maker is the sinus node. Think of that as a battery. For that battery to be malfunctioning in a child Kelsey’s age is very, very. very. very. very (I think Dr. Long used 9 “very’s”) unlikely. Therefore, the problem has to be coming from the brain. We left there Friday morning with a 24 hour loop monitor. It recorded her activity for a full 24 hours and we hope to see a clear picture of what is going on. The downside to this, and this is what I was meaning before, is that the brain is still relearning its parameters. There is a good chance the monitor will show some abnormalities, and there is just as good a chance that it will not. This process, I’m sure, will have to be repeated a few time to get a real clear picture.

Other than that, Kelsey seems to be doing well. She is still on restriction from her scooter and other outside toys, but that comes off in about 2 weeks. Her whinning is still there, but that is normal with a 2 yr olf after surgery. Sunday morning during the church she was being a little loud, not quite disruptive but almost. Then she had to go the bathroom. While we were out someone walked by and asked how she was doing. I was actually very glad to say, “She is doing well enough that we have to have a talk about how to behave during the sermon.”

The pictures above are from this past Sunday. It was baby dedication day at Grace, so we had both Kelsey and Cambrie dedicated.

Nicole had an appointment with the pulmanologist today, and I am still trying to understand how that went. After I figure out what she wants to do, I will post another comment. I know I haven’t posted in a while, but please don’t give up on me.

God Bless,

A.