Couch potatoes

Wednesday was a long day at the hospital. After the results came back from the lab, it was discovered that Keian's numbers were very low and that he would require a blood transfusion. Though he has required a platelet and plasma transfusion through his diagnosis, this was the first time he needed a full blood transfusion. Admittedly, it was a weird feeling for me. The most concerning for the nurses and doctors is to raise the hemoglobin, but Keian is also neutropenic, which means that his neutrophils, which are mostly responsible for his immune response, are very low. We've been told to stay away from public places until we go back on Tuesday to get his bloodwork checked again. During the time that Keian is neutropenic, he is at high risk for infection, including infection within his own body. Although we do have numerous bottles of Purell around the house, one of which is by the door so visitors can sanitize before entering, we will limit visitors during this time. He also needed to get Asparaginase via IM - this has a chance of anaphylactic shock, so he needed to be monitored for 3 hours after. They won't transfuse blood during this time, as they both have a chance of allergic reaction.

He was really scared to go to the hospital to get his LP - he cried a few times that morning. He told us that last time he had an LP that he remembers and that he could feel it and it hurt. They assured us that with the sedation they give him that he wouldn't. When we talked to the doctor, she told us that because Keian was doing so well with acceptance of the sedation, that she cut back on the amount. She assured us that she would increase the dose again for this and future procedures. This time went beautifully - soon after he was off in lala land and he didn't feel a thing. I definately had to call attention to Dr. Lucy - she cares so much for the kids...the entire time that we were in the procedure room, she sat at the head of the bed and gently rubbed Keian's head and cheek and talked to him in such a reasurring way. Things like this make such a difference, not only for the kids, but for the parents. It makes us feel like our kids are not only getting the best medical care, but also to make them feel assured and cared for in a personal way vs. a textbook case.

The day was filled with ALOT of video games! Keian and Joren both have a cough, and therefore, we were confined to a clinic room for the day and weren't allowed into the huge playroom.

Keian getting his blood transfusion

Hospital food is definately not enjoyed, so as Keian was stable, one of us was able to leave to go get lunch. Keian's request: Subway. I love that about him. Given a choice between any fast food item, pizza or anything considered junk food, he would choose Subway. Mind you, his sandwiches aren't exactly the healthy that you and I might get, getting lunchmeat and bread with tomatoes and cucumbers on the side make me feel alot better than filling him with greasy hamburgers.

I may not love the way our life is right now. I may not love what Keian needs to fight. But, I sure as heck love my boys!

~Chantal