Weekend Update

(This posted was started last week but finished this week so it may read weird.)

I didn't get a weekend update out last week so this week I am updating before the weekend. So let's see....last weekend consisted of BYU football Friday night; conference, gardening, and a movie on Saturday; and conference, Kearny, and Fablehaven on Sunday.

This weekend I am home alone until tomorrow. Julie and the kids went to Kearny yesterday because Sarah had a pediatrician appointment yesterday and one with the cardiologist today. Tonight and tomorrow I hope to get some cleaning and unpacking done without Lizzy undoing everything. Also tomorrow I hope that we can go to the fair. I know the kids are excited about it and I am actually sharing their excitement. I hope they have good craft and photography exibits. Man does that make me sound old. Anyway nothing too exciting.


The main reason I wanted to write today (apart from taking a break from cleaning) was to update on Sarah's heart. In order to do that I feel like I should give some background. Not because I think there are people that read this blog that haven't already heard it all but because this blog is actually more of a journal for me then a fun read for others. (Not that I don't enjoy haven't people read and comment it is just that if you were here for fun then you are not very good at the internet. There are sites that are way more fun than mine. I mean I don't even have a cool mp3 player on the side.) OK. Here we go...

So on June 21st Julie went back to our room in Kearny to get some scissors for Ginny (which has story of it's own that is nothing short of a miracle) and found that Sarah had stopped breathing and was already blue. She screamed and started giving CPR. I ran back and by the time I was back there Sarah was breathing but was still blank. I could still see the white outline where Julie put her hand on Sarah's face when she had given her breathes. Sarah had a distant look on her face, was lethargic and despite having Julie blowing in her mouth was not even crying. It was a frantic time and a lot happened during the next few minutes. It was clear that even though Sarah was breathing she still needed help but unfortunately both the ambulance and the medical helicopter in Kearny were out on calls. (Not a wonderful part of living in rural Arizona.) Julie and I loaded in the car and raced towards Superior and Mesa to meet the first ambulance we could. We were able to meet up at the fire station in Superior and they flew Sarah to the hospital from there. Once we got there they started putting oxygen next to her face and she really started to improve. We knew she was going to be OK but still were quite shaken up.

Julie and I drove to the hospital after the helicopter but Bruce and Andrea happened to be in the valley so they were there to meet Sarah. It was really sweet actually. When Sarah arrived she was crying pretty good and the nurse was not having much success calming her. Andrea asked to hold her and as soon as she took her, Sarah calmed right down. Anyway, Julie and I were mostly concerned about brain damage due to lack of oxygen but fortunately we had a fantastic ER doctor. Ssince Sarah had showed some sucking reflexes he was wise enough to look for the cause of the incident. Sarah's heart beat was extremely elevated (over 200 bpm) which was very high even considering the ordeal she had just had. He ordered an ECG right away and saw that her heart rate pattern was missing a wave. We were booked in the PICU and were set up with visits from cardiologists.

By the end of the weekend we knew that Sarah had a heart condition and that it was at least controllable with medicine and possibly a surgery around 7 years of age. There was also a chance she could outgrow it. Anyway, she was in the hospital for two weeks. She had a whole bunch of tests including a muscle biopsy and when we left she had 5 prescriptions but at least she was home. Her progress since then has mostly been OK but she has had a hard time getting back to normal in terms of her heart strength and size. The results from the muscle biopsy also seemed to show that she might have a mitochondrial disorder so things had been a little discouraging.


The strange thing with everything has been how normal she seems. The doctors seemed to be painting this grim picture but by looking at her you could never tell. She is the the happiest baby we have had. She smiles all the time. She is developing normally. She has even figured out that if she wants to get across the room she can just roll there. So anyway, I have had my doubts. Julie says I was in denial but I just figured doctors can be wrong and especially when it comes to disorders in the cells.

So the first really good news we had was about a month and a half ago when we got results back from one of the blood samples that she did after the muscle biopsy results. All was normal! Then last week she had an appointment with the cardiologists and he said that her heart looked perfect. We are so happy. The doctor has taken her off one of her medicines and has started weening her of another. Really this has been the best news ever.