Letter Seventeen

January 10th, 2008

Heather, 

Hey Friend how are you? I feel like I’m always writing people with bad news and I hate that. I guess this is the chapter of my life that is the hardest with the most trials. I sure hope the next chapter is full of happy experiences and ponies! lol. But I use writing as my therapy as I navigate this crazy ride Noel and I are on.

The last few months have been uneventful, I suppose. She has been eating fairly well. She doesn’t throw up anymore so that’s good news. Thanksgiving was spent with her dads family and Christmas with mine. Nothing big has happened with Noel’s health until now. 

We came to my parents house last weekend to participate in an MDA Muscle walk. I was happy to meet some other families who have children with conditions similar to Noel’s. Sadly we never made it to the walk that was suppose to take place on Saturday morning. Instead I had to bring Noel down to Children’s Hospital. 

I knew she needed some oxygen at least. She started looking a little dusky and was working hard to breath. Then she got really lethargic and could barely stay awake. These were all signs that she needed oxygen so I knew I had to take her in. When I started packing an overnight bag my mom asked me what I was doing, “Doesn’t she only need oxygen Tina?” “Mom,” I said, “ you can never be to prepared for a trip to the hospital with a kiddo like Noel.”

It’s a good thing I packed that bag. We waited in a room in the Emergency Room for 13 hours! When a room finally opened up it was 3 in the morning.  They have Noel on 2 liters of oxygen which is the most she’s ever been on. They also started monitoring her carbon dioxide levels and they said they were dangerously high. So the plan is to keep her on oxygen while we wait for the cultures to come back to see if she’s sick. So for now I’m sitting in a little Blue Chair in room 604 of the hospital while we wait. 

I hope you’re doing alright, hopefully the next letter I send you will be about happy times, after Noel’s back home. 

Love you Friend, 

Tina