Acute Myeloid Leukemia is quite a juggling act. Erin's ANC is still 100 today so apparently not enough of you did a dance for her. So, get up off your seat and do a little jig. Thanks! Don't you feel better? We are hoping that your calorie burning jig will send some good vibes so that tomorrow morning we'll find that her ANC is moving up.
John spent the weekend with Erin and he's been a better parent than I have at getting her to bed by 9:00 pm. It is so wonderful that I have someone so capable to go through this ordeal with. Even with Erin's longer sleep she was very grouchy today. I thinkthat she just didn't feel well because her hemoglobin was low. She got a transfusion (thank you all of you who are able to donate blood) but the transfusions always make her blood pressure go up so then the nurses are taking her blood pressure consistently every 30 minutes and that just drives Erin crazy. We just gave her nefidipine to lower her blood pressure and then I read her some stories and got her to sleep. Phew!
We have been doing some "training" on how to take care of Erin's central line and such. The central line is a tunneled catheter that enters the large vessels above her heart and then they come out of her skin mid-chest. Her central line's brand name is called a Broviac (I know you wanted to know that).
Due to the type of Leukemia Erin has she needed to have two tubes that come out of her central line because there are different types of chemotherapy that go through the different lines at the same time. Tonight I got to sit with the nurses and they taught me how to flush her central line and how to change the caps on the lines. I wish I could taking a nurse home with me so that they can help me do all these sterile techniques. I am so worried that we'll mess up and somehow get bacteria in her line.
I am going to make some big posters that have all the directions on them and tape them to my wall so that I can refer to them while I do all these new things. I know that soon enough they will become second nature to me, and I look forward to those days. It is nice though that we're getting our "going home training" done. That just makes me think that we will be coming home soon.
Today I spent at least an hour mulling over how we are going to get from here to there this week. It's really a pain to figure out each day who will be with Erin, who will be with Cecily & Caleb, who will be driving what car, and if that driver is even going to have a car to come home in, etc. It's a day to day battle that we have to deal with. I am so thankful for all of you and for your willingness to help us out. We often only know what we are doing a few days in advance so I appreciate it when you are so kind when we are so last minute. It's a true juggling act.
I'm sort of rambling tonight, but I wanted to write about something else. We are in ICS (Immunocompromised Unit) on the fourth floor and just happen to be directly below where the life flight helicopter lands. It took me a few days to realize that that is what I was hearing above us. The walls are really sound proof so we don't hear the life flight helicopter come in, but we hear it land *bump bump* and then I hear them wheel the gurney *rolling sound* and a door shut *bam*. I've grown to sleep through it but it just keeps reminding me that there are people out there who are suffering and I'm so thankful for those who dedicate their lives to sustaining life.
Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"