Shizzy Cardiac Echo Results

That's right, shizzy. People who know me know that I have my own vocabulary at times. Can I point out the difference between this picture and the one on the top of this blog? Kate has become a totally different person since we started this journey. I can't believe we have been doing this for so long, and yet I can barely remember life without Marfans.

 I honestly thought we would walk in there and they would say that Kate had grown, she is now 5 6", and that her aorta had stayed the same size, or by some miracle had a smaller Z score because her body was now so much bigger and it had only grown a little. This happened last year, so I wasn't completely bonkers for thinking this.

Unfortunately, I was way off. A little lesson first. A Z score is basically measuring the dilation of the aorta. Her last Z score was 3.4 which was one year ago almost exactly. Her new Z score is 3.8. A change of .4 in one year. Definitely not the results we wanted. We asked a few questions and the doctor said at a Z score of 5, surgery is indicated. So I said we have until she reaches 5, and he shook his head and said no, we start talking surgery at a Z score of 4.5.

When Kate was first diagnosed, we knew this surgery was a possibility, but wasn't a for sure thing. And I had hoped IF it had to happen, it would happen later in life. Now we are just trying to postpone the inevitable. Very hard to hear, very hard to keep it together with Kate sitting right there. She was asked if she understood and she said that she did.

To slow down the progression we are going to add a medication to her current medication that lowers her blood pressure. One side effect is depression. That is the only one that I will really be aware of. Kate is such a happy and upbeat kid, I'd hate anything to change that. This new medication will help lower her heart rate, but we need to lower it only enough so she is still within normal heart rate parameters. She is wearing a heart monitor for 24 hours to get a baseline heart rate, then she will start a low dose of the new medication. We then go back in a few weeks and recheck her heart rate and increase medication as needed. This will likely happen 3 or 4 times until we get the correct dosage. Her positive on this, at least she doesn't have to wear the new uncomfortable brace for 24 hours.

We asked about her PE class at school and her doctor is convinced that the benefits outweigh the risks. We then had a several minute conversation about what Kate can and cannot do again. I think she gets it, but it's hard when all of your friends take off running and you cannot. So, that is kind of stinks. Least of my worries at the moment though.

Here's what is coming up. X-rays and doctor visit to see if new brace is working on November 3rd. Appointment with her cardiologist on November 5th to check heart rate. A visit to her eye doctor on November 19th to check on her lenses. We might have to throw in a weekend at Disneyland. Serious group therapy right there. Prayers are always welcome.

EKG and Cardiac Echo

 Kate and I went to her yearly EKG and cardiac echo on wednesday. The EKG is a breeze, in and out in 5 minutes complete with sticky sticker removals.

On the way into the hospital this time Kate and I were talking about how we have driven this road so many times it feels like we could drive with our eyes closed. Well, I could. For some reason the accident came up and I retold her the story of where I parked that night and how I ran across the street and burst into the ER and started banging on the window and yelling that my daughter was here somewhere.  She said they probably thought I was crazy. Haha. I told her that's probably why they gave me a person who didn't leave my side for the first 3 hours.

 But then Kate told me some things about the accident I didn't know. She said she fell asleep at the accident site for part of the time, that she didn't remember talking to me on the phone there at all. She also said that she woke up in the ambulance and was really fighting the paramedics when they tried to start an IV. She hates needles.

She remembers me coming into the ER room she was in, but she thinks she slept for a time because she didn't remember leaving the ambulance. None of these memories seem to her upset her, unless she tells me about the needles. Amazingly brave kiddo.

Back to our tests, we sat in the second waiting room for a while reading and playing games on our phones together. It sobers you up fast seeing all of the other children and parents in there. There's that story or saying about if everyone put all of their challenges on a table, people would still reach down and take their own troubles back. I still think that is true. Don't get me wrong, I'd give anything to take Marfans away from Kate. I still find myself going through those stages of grief, I mostly live in bargaining. Saying in my head and sometimes aloud all of the things I would give up or go through for Kate to not have these health issues. God hasn't taken me up on any of them yet, but I keep trying. 

 Time for the echo exam finally. Tangled was playing, there's always a movie on which is nice as the test took around 40 minutes. I used to try and figure out what I am looking at, but I only see obvious things and I convince myself I see things that likely don't exist. It is pretty cool to see all four chambers and valves seemingly doing their jobs perfectly.

The test took long enough that I thought Kate had dozed off. You can barely see in the last picture, but her eyes were closed. I asked her about it after the test and she said she nearly fell asleep but she thought it might change her heart rate and wasn't sure she should let herself. Smarty pants kid. We left the test absolutely starving so we grabbed a pizza on the way home.

New Back Brace

 Kate and I went in on Monday this week to get her new brace fitted. It doesn't seem to go as high as the last one, but it goes down over both hips where the last one only went down one side. Kate has two different curves to her spine, an S shape. Her old brace put pressure on both curves going in opposite directions. The new brace is only putting pressure on the lower, larger curve with the hope that the smaller curve above will straighten some by default.

Because it's a new brace with new pressure points, Kate gets to start the brace wearing adventure all over again. It hurts to wear so she is wearing it mostly at night at first, oblivion is nice if you can get away with it, then she will start wearing during the day slowly. Eventually it will be on for 20 hours a day.

She ended up choosing the same pattern for this brace as her last one. She is actually becoming a little fashionista as of late and I think this design is as close to white without being boring as they come. The straps are black this time which might put a damper on some outfits.

As per usual, Kate is a trooper. She never ceases to say something positive about her situation. Her brace gives her fantastic posture, or so she tells me. Love this girl.