MAINTENANCE AND BROVIACS

Kristin went to school "almost" everyday last week for finals. It was a struggle, but she gave it her best. On Monday she came home and slept for three hours. The next day she took four cat naps. By Wednesday I knew something was not quite right so I called to relate this to the Doctors. I had a suspicion that her HGB was running low. She was pale all over and had been having headaches and not much of an appetite. I have been told over and over that she should be feeling and looking much better in Maintenance. Well, I have been waiting....and wondering when that would be. We did labs and her HGB 8.6, WBC 2.0, ANC 1600, PLATELETS 200. She was running low on red blood cells but not low enough for a transfusion. (they transfuse at 7.0) This is fine as I do not want to expose her to any more blood products unless it is absolutely necessary. Even though so many precautions are taken now, there are still some serious risks involved with each transfusion. She has had more than her fair share of them. You should see the consent forms we sign with each one; they make me nervous, but they are life saving and necessary. I hope that this is not a pattern that will follow her throughout maintenance. It will make college very difficult with counts like that. I am pretty sure the Methotrexate is the guilty party here. She takes this once weekly and will continue to do so for another year and a half.

We went for a consult to have the Broviac removed. yipee! The Dr. Stumpf wanted to do it in his office under just a local anesthetic. He did say she could do it in the O.R., but that it would be more of a hassel to schedule and more expensive. So what! Remember, this is inserted directly into the main artery of her heart. There is a small cuff just under the skin where the port comes out of the chest. Kristin went pale when this was presented. How awful! I talked to Dr. Hastings and she said,"Kristin has been through hell and back and having these removed can be very unpleasant. It is always done being sedated. She should not have to endure the procedure awake. Absolutely not. Sometimes doctors are not very aware of what these children have endured." I also talked to Kevin Lasko and he did not recommend doing it this way either. As we walked out of his office I supported to her because the very thought of doing the removal awake caused her to go weak in the knees! She climbed into the car seat with tears in her eyes. I promised I would not let him do it under just a local and reminded her that he left the option of doing it in the OR open, and would call to reschedule the appointmen tomorrow. Dr. Stumpf's office was very obliging and they are going to schedule the procedure in the O.R. Thank you!

As the days go by, I find myself grateful for every moment we have to enjoy Kristin and her brothers. I cannot let a day go by without saying I love you and giving each one of them a hug. I know there are many parents who wish they could have just one more day to do so. So, if you are reading this, hug your children and tell them you love them because you can!