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Saturday, May 28, 2011

My heart broke on Tuesday

I went to Ava's Kindergarten program on Tuesday. Her class was very cute! I am so proud of all of her accomplishments this year. On the way home, I got a phone call from Christine. She is a mito mom that meets in our little mito mom group here in Memphis. She told me some very sad news. Emma LaCroix had passed away. Emma's mom Karrie was the first mito mom I ever talked to. We met in Indianoplis, In at a UMDF symposium. John and I went to one in 2008 shortly after Jackson as diagnosed. The LaCroix family are very near and dear to me.  I was and still am very heart broken.

I went to Emma's visitation on Friday night. Before I left, Charlotte took Jack's temp. It was 100.5. I was concerned but we had been out running errands and I thought Jackson may have gotten too hot in his car seat. We began the cool down process which includes Tylenol or Advil. I called to check on him and his temp had gone down to normal. When I got home Jack was still awake waiting on me to snuggle him. His nose was stuffy and I could tell he might be coming down with a cold. He kept me up off and on through out the night crying. At 4am I got up and mixed up the humidifier and looked for the thermometer. I took his temp and it was 101.5 I gave him Advil, fixed the humidifier and started thinking about going to the ER. I took it again 30 min later and it was 101.8. I calle mom and started packing for the hospital. Mom and I made it to the ER around 6. God was watching over us because we had a doc we've had before. She remembered Jackson and his protocol and did not waste time. Jack had an chest xray, blood drawn, and iv started quickly. We got up to a room and there was so much in and out and in and out and more sticks and in and out. Jackson was worn worn worn out!!! Respitory wanted to come in at 8 to do vest and I told them that would be to late. Jackson will be asleep and no one is waking him. They came at 6 at my request and put the vest on Jack. They seem to be short on vests so Mom is bringing Jackson's from home in the morning. I have also learned that Respitory runs on their own schedule for therapy times alway 8am, 2pm and 8pm regardless of what the patient does at home. I don't think this policy is working for them. These time will not do for Jackson. They are too close to feeding times. He will vomit if they shake him an hour after a feeding. I received some resistence to changing their time but in the end they (RT) saw it my way.  He finally fell asleep around 9. We are suctioning his nose, throat. He is on D5 for support while febrile and is being monitored. They took his temp at 11:45 pm and it is normal. I am hoping that this visit will be shorter than our last in Dec.

I know God is taking care of Jack because the resident that is taking care of Jack is the same one from Dec. that was so interested in mito went home on his day off and read about Leigh's. He remembered us and I was so glad I didn't have to pull out my mito 101 speech. One less thing...sometimes it's good not to have to explain Mito Jack.

Please continue to pray for the LaCroix family as they grieve.

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