Gracie Update

Hi,

This post is way out of order. Sorry about that

As some of you know Gracie went to UCSF for another cardiac catheterization a few days before Christmas. First the good news. They were going to try to close up her ASD (one of the holes in her heart) while in the cath lab but they couldn't find it! Meaning it has closed up on it's own! AWESOME news! The second good thing is that they have determined that she no longer has pulmonary hypertension (this is what was preventing her from going to high altitudes) I guess she has outgrown it. They even did a altitude test to simulate the air quality to what it would be at a high altitude like at my dad's cabin and she passed with flying colors! Her sats stayed at 100 and she had no problems with her blood pressure or heart rate! The bad news is that her tri-cuspid valve is still leaking and continues to be a problem, it will need to be dealt with at some point but we are hoping it can hold out until she is bigger/older (5 or 10 years old) She also had her pacemaker checked out and and we found that her atrial lead is fractured. They were able to pull up the data and could determine that is stopped working on September 23. (I checked the calendar it looked like any normal Tuesday, no play dates or anything). The doctors at UCSF said that it probably was not from any sudden trauma, that it most likely happened over time. My understanding is that the atrial lead just monitors her heart rate and only "kicks in" if her rate goes above or below a certain range. The ventricular lead paces her heart continuously. Her cardiologist at Kaiser, Dr. Cooper, said that this has never happened to one of his patients before... This guy is in his 60's (I think) and has been in practice for many years so that fact that he has never seen this happen before concerns me. I am worried that the important lead could just stop working at any time...

We went to Kaiser today (1/13/09) and Gracie got all set up with something called a halter monitor. It is a device that she has to wear for 24 hours. It has leads stuck to her chest like an ekg (we call them buttons) the leads are attached to a device that looks like a PDA that they put into a little purse like thing and she is wearing it. She has actually kept it on all day. We will return the equipment tomorrow and the results well be sent to Dr. Cooper. We see him on January 30th. Hopefully, he will information for us then. I guess to replace the leads requires major (open chest) surgery. Which stinks because her pacemaker will need to be replaced in 2 - 3 years. My thought was that if they need to replace the leads they should just replace the whole pacemaker while they are at it... That way she wouldn't have to have another surgery for 5 years. I was told it's not that simple.

Also, we told Dr. Cooper that we would like to take the kids to the snow at my dad's cabin. His nurse called me and said Dr. Cooper said she still can't go to high altitudes :( as usual I was not given any explanation. It is very frustrating to me when I hear one thing from UCSF then another thing from Dr. Cooper at Kaiser.

Sorry for my jumbled thoughts, and thanks for listening.

I will update after her next appointment on Jan. 30

A bit of good news!!! Gracie walked on Christmas eve!

Love & Blessings,

Jackie

She is getting a altitude test. They have her in the bubble and are controlling the air to what it would be at a high altitude like in the mountains.

This is the monitor during the altitude test... Sats are at 99%!