Sunday, December 13, 2009


The breathing tube is out - PHEW! They did it first thing this morning. The doctor woke me up at 7:30 am to let me know they were getting ready. By 8:30 am, it was out!
Jacob is having some obstructive breathing, so he does need the BiPap today. They will keep it on til tomorrow, and then see if we can start weaning him off the BiPap. He was so mad when they put on the BiPap, and he fought it vigorously! My singing and holding his hand didn't do anything for him today. With some Motrin and Chloral in his body, he has now been able to calm down.
The EEG is running, and his seizure activity is no worse than before his crash on Tuesday. That is GOOD news.
Our friends Luiz and Joe are arriving in an hour. They will sit with Jacob as I sneak out to see Sarah's Lucia performance at the Swedish school this afternoon. We'll also get some Swedish Christmas food and treats at the party, which I am looking forward to.
We'll see how it is to be back at the Lucia performance today. I am sure it will bring back memories from the party last year. It's today exactly a year, since Jacob had his first "crash". We went to his class with no suspicion of Jacob being sick. When we arrived at school, he had this awful cough. I felt like a guilty parent bringing a sick child to school...As Jacob was done with school an hour later, and Sarah was getting ready for her performance, Joakim sneaked out to get some Motrin for him. We could feel the fever coming on. After the performance, we had to drive home right away, since Jacob was really sick. We were hoping by giving him a bath and some more Motrin, we could settle him in for the night. At home, he still had a very high fever, so I turned around and took him to the ER. In the ER, I found out that Jacob had gone from healthy to respiratory distress and shock in 3 hours. He also had a full blown pneumonia. I saw for the first time how mitochondrial kids can crash. This event in itself is no worse than many other times for Jacob, but it sort of sets the beginning of Jacob's digression we have seen this past year.
As I listen to the Santa Lucia songs this afternoon, I will be very thankful that Jacob had a successful extubation today and that I have him in my life.
Peace of mind,

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