Life is wonderful and difficult... and I am grateful!

Tuesday, December 20, 2011

Home Again, Home Again

Kaitlin is home from the hospital! She is feeling better than she was over the weekend and is resting as she is tired. Her asthma is acting up a bit and she has a cough, but overall feels pretty good. Everyone slept well last night and that alone was a blessing. At one point over the weekend, I had been up for 41 hours straight and when a nurse commented on it, I told her how I had been in training for years with all of Liz's hospital stays. Still, sleep is so good and I needed it last night!
We decided to surprise the other two by walking in the door without having told them Kate was being discharged. Liz ran to me and cried and cried as I held her. I think that she had such a mix of emotions over worrying about her sister and missing me.

We'll watch Kate for fever or petechiae, just as we do with Liz, and she will have labs drawn again later this week. She will be seen by the Hem/Onc doctor on Tuesday when we go for Elizabeth's appointment. When the Hem/Onc doctor saw Kate yesterday in the hospital, she said we will just take things slowly and hold onto the fact that Kate could have been hit by a weird virus and her body reacted with becoming suppressed. I feel my stomach drop when I think of that because it is exactly what we were told about Elizabeth two years ago. Still, it is a real possibility and I remain hopeful that it will be the case for our Kate.

Jackson has a bad cold and cough and has been home from school the last two days. Our home is full of irritable people, but we are happy to at least not be in the hospital.
Ironically, Liz is doing great! With her immune system so compromised right now, and the way her colds turn into pneumonia or sinus infections that require a dreaded antibiotic, which in turn causes her Cdifficile to flare, I am fearing she will get Jackson's cold. If she can stay healthy through this, I will be ecstatic!

Liz has a gastric emptying study on Thursday in Nuclear Medicine at the hospital. Our hospital's nurses are going on strike that day and I hope it won't cause for a delay while we are there. She has only this test before Christmas and then won't have to go back for appointments or treatment until the 27th. Some days I feel as if I have a continous list in my mind where I check-off one trip to the hospital after another.

Christmas Eve I have the tradition (with Meg and Trav) of delivering meals with a group of volunteers to families who have children who are inpatient. Though we have spent a few holidays in the hospital - Easter and 4th of July this year alone- we have been so fortunate to not be in on Christmas. The group gathers at the hospital kitchen and picks up huge food carts full of meals which we deliver to each pediatric, PICU and NICU room. We also deliver a gingerbread house so that the family has the fun of that. It is a joy to be able to bring a tiny bit of cheer to the families who are there for Christmas.

Thank you for continuing to pray for our family.

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