Can't believe it is July 1st already. I love the 4th of July. I think it is my favorite holiday besides Christmas. Aunt Wendy sent Meg a 4th of July dress in January that I cant wait for her to wear. When we were deciding if we should proceed with the Trach for Megan I remember being home in her room and holding her dress and thinking - she has to wear this dress on the 4th of July. As strange as it sounds it was a turning point for me in the decision process because I could not imagine her not being with us on the 4th. So the dress is more than just a dress for me at this point and so is the 4th of July.
Megan had her central broviak line removed over this past weekend slightly ahead of the scheduled date of July 2nd. She developed infection in the lines that had to be treated right away and removal right away so it would not turn into sepsis. Those lines are scary things. They dont belong in our bodies. I was so careful with it and she still managed to get infected. I think she did it on purpose so she could go in the pool again. It is a little bit more freedom for us. They got in the way A LOT. Her chest looks so bare now too.
Going back to the PICU was scary. I was afraid Megan would get a secondary infection and would get sick. It was nice that we had a private room so we did not have to share germs and it was really good to see some of the nurses that I became so bonded too. I have to make time to be able to stay in touch.
Summer is rolling by and we are still just taking it day by day. I am sad that we are not going away with Jimmy and Wendy this year, but we did not know how or what was going to be going on this summer. Still dont really!
Megan has ongoing seizure issues and it sounds like she is going to start the Ketogenic Diet. It can be helpful and certainly should have less side effects than ACTH. Have to go do some reading on it now.
Happy 4th of July!!