Saturday, November 23, 2013


It was a day or 2 after Makenzie was taken to the PICU that Dr. Swoboda came in to do some tests. There was a couple other people with her. One of the ladies looked like Christine off Greys Anatomy. That lady was the one that did most of the tests while Dr. Swoboda observed. They did an EMG and nerve conducting study with repetitive stimulation. I remember holding Makenzies hand and kissing her face while they did this test. It was not comfortable for her and she wasn't happy about it. I remember the test seemed like it took a while but I think it was only an hour or two. These tests helped identify muscular diseases, motor neruopathies and other neuromuscular disorders. After the EMG was done they did an SMN gene deletion test. They had to draw blood from the very inside of her hip/thigh. It was done with a giant needle and it made me sick to think about that in her. I sang to her while they did it but she was obviously in pain. I hated when she would cry because there was no sound. Just her face and tears. It was worse than any cry I have ever experienced. The results for this test usually took anywhere from 3 weeks - 3 months to get back. Dr. S. said she would try to speed up the process but it would take a while before we would know anything. Testing in the US was new. Its only been offered here in the last 6 months and only in Europe before that. The lab was in another state and they only did the test when they could test more than one at a time so they had to wait for another person to get tested for the same thing which is why the window was so open for when we would get the results.
Both my Mom and Ryan's mom came while they were doing these tests. We asked them to wait in the waiting room until it was done. After they were done Dr. Swoboda immediately had us sit down. We sat on my chair/bed thing. It was a tight squeeze. but we sat there next to each other. Dr. Swoboda sat across from us. She didn't waste anytime telling us what she thought was going on and what was wrong with Makenzie. I was not sure exactly what she was saying. but I remember repeating over and over in my head SMA. She kept saying those letters over and over. She said what it stood for a couple times and I tried to remember those words. Spinal Muscular Atrophy. I couldn't understand most of what she was saying to us as far as the medical side so I knew I was going to be rushing to the computer as soon as possible to do some research. She told us that SMA has different types. That they would not know what her type was until she either did or did not reach certain milestones. She could live a semi-normal long life. She maybe in a wheelchair and unable to walk but she would be alive. but the fact that she was already showing symptoms and weaknesses and that she was rather progressed in not having a lot of mobility in her legs led her to believe it was SMA1 but that there was no test that would tell us for sure what type she had so we would just have to wait and see.

After Dr. S ended our conversations assuring us she would be back tomorrow she left. Ryan and I sat there for a few minutes before we got up and went to Makenzies side. I remember so clearly looking at her. Kissing her face. Then turning to Ryan. I just lost it. I grabbed him and he held me up. I was shaking and my legs felt like they would give out at any minute. I told him over and over that I cant do this. I don't want to do this. I just cant do this. Its not fair. I don't want her to be sick. The Mum on the other side of the room left (she might have been a wee bit afraid).
Ryan told me to stop. That I needed to calm down.
At the time I was a little upset with him.
but I needed that.
It was not time for me to fall apart.
We had a very sick little girl in the bed next to us who thankfully was still alive.
Ryan told me that we could do this. That we were doing this. That its not just me. and that we needed to focus on Makenzie and not on us.
I needed to focus on what we had and what was to come instead of what we didn't or the unknown.

After I put myself together we went to the waiting room to talk to our Mums who were anxiously waiting. They were pacing the halls. We did our best to tell them what we were just told. So much of what Dr. S said went right over our heads but we did remember SPINAL MUSCULAR ATROPHY.

That evening during the shift change I went upstairs to the public computer. I updated my BLOG and I spent the next 50 minutes learning everything I could about SMA.
I had to be gone for a hour during shift change and I didn't spend anymore time than I had to away from Makenzie.
That night her nurses finally answered my prayers. What did Kenzie love more than anything? Water. Her baths. So thats what we did. Those amazing nurses figured out a way we could give her a bath. They said this never happens in the PICU. Lucky for us our baby was small enough she fit in the "barf bowl"

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