Monday, February 22, 2010

Flannel Sheets and Home

If it has to be cold, damp, and rainy, there are some creature comforts to be found in flannel sheets, electric blankets, and space heaters. We left sunny Florida on Saturday morning. The sun had already warmed the air to 68 degrees and it was only morning. By the time we drove into our muddy driveway in Virginia ten hours later, the piles of snow and 41 degree temperature told me that we were "up north." So as we crawled into bed Saturday night we were happy for our warm flannel sheets and we slept long and hard.

After attending church on Sunday, Paul and I spent the afternoon together and planned our week. It is good to be rested as we look to the future and the responsibilities that lie ahead. Kathryn visited her hematologist last Friday and during that visit the doctor discovered that she has a serious blood infection. He started IV Rocephin right there in the office and she has to return to the hospital for the rest of her treatments this week. The sores in her mouth and all over body bruising might have been a good indication that something was wrong but it was her red and white cell counts that told a better story.

While Qavah had a good time in Florida she also had diarrhea for 12 days. I took her to the children's hospital in St. Petersburg and discovered that her red cell count had dropped rapidly. I brought her home for another transfusion set for tomorrow. So our vacation is over, but I have to say that for three weeks it was good to get more rest and have less responsibility. Aunt Lil did all the cooking and I didn't even have to think about meals. She may never fully know what a blessing that was for me but I know she reads this blog and will know how much I appreciated those things.

We had a conference call from Cincinnati last Friday. Paul and I sat by the phone in our hotel room in Florida listening to the test results on Qavah. It is very humbling to see how much time and effort the doctors are putting into trying to find a treatment for our daughter. One thing of interest to them was that Qavah has very few Natural Killer cells. That means she has no ability to fight viral infections and her white cells do a poor job of moving to the sight of infection to heal her. That is why she has so many problems with her skin breaking down, and why she doesn't get over illnesses easily.

The doctors are putting together a plan of action for us based on that information. At the first sign of a fever we will need to take Qavah to the emergency room for an injection to boost her immune system and to get an antibiotic. I mentioned to the doctor in Cincinnati how difficult it was to have Qavah treated in an emergency room quickly when the ER doctor had to be given a crash course in Red Cell Aplasia first. That led to a discussion of putting Qavah's diagnosis and treatment plan on a memory stick that I can carry around in my purse. It can be plugged in to any computer and the information will be there for Qavah's health care anywhere in the world. That was such a great idea that we are talking about doing the same thing with Kathryn's records. That way we can travel with the girls again with less anxiety.

Paul and I have been thinking about our time in Florida with a happy sigh. It really was the best thing for us. Uncle Tony gave us a key to the house before we left and told us to think of it as a place to come and rest. I don't know how often that can happen, but it sure is nice to know it is there. As we drove home I told Paul how blessed we are by God. He has given us a hard mission, then blessed us with times of refreshing; showing us that when we are weak, He is strong.