Clarification

I know we have a lot of people praying for us and reading the updates on Kourtney.  I feel that I need to clarify a few misconceptions that may be circulating in the community.  I want to make it clear that in no way are we keeping Kourtney "comfortable", nor have we "given up" Hope that she will get better.  However, we have taken all of our cards off the table to make sure we are giving Kourtney every chance for her body to get better.

At this point we have withdrawn her from school and have not attempted for her to continue with her virtual school.  Her body is weak; we want her to preserve any energy she has into healing.  Her body is working very hard to keep up so until we know what we are dealing with Todd and I are in agreement that this is a necessity. We do know and fully understand that is it important to keep her emotionally well.  I believe all the visitors we have had as well the company of our caregivers have helped keep her spirits up. I realize soon that her brain will need more stimulation but I know that right now I would just become terribly frustrated if I tried to encourage her to do school work. She has started some physio as well and recognizes how important it is to keep moving.

What we do know is that Kourtney is not yet in "system" failure.  Her kidneys and liver are fine. Her heart is "OK" at this moment, but because the heart is a muscle the more it works the bigger and weaker it gets (opposite from what we would think - not like when we exercise). Kourtney's heart is beating so fast related to the anemia and malnutrition issues that the possibility of damage is a reality.
So what are we doing now?

To preserve our sanity Todd and I decided to switch Kourtney's feeds to the daytime instead of night. Todd (I seem to have the Lutzer gift of sleep) was very sleep deprived as Kourtney's feed alarmed almost every night due to Kourtney rolling on her tube as well a very finicky feeding pump. In addition Kourtney had to have her first round of her daily double at 0500 am. Sometimes it was so difficult for her to walk to the bathroom that she wouldn't make it on time. Keep in mind that there were dressings that got soiled. I think her feeds were running right through her as it seemed to come on so quickly.  This could be why her nutrition is so poor.  So now that Kourtney is home we are doing "intermittent" feeds during the day.  So far so good.  Kourtney said she sleeps better, and now Todd does as well. We are hoping that doing this may help slow down her bowels a bit too and increase absorption of her feed.  So far there have been no emergencies.

We as well have restarted her on an injection called EPO.  We had taken her off because the hematologist believed it wasn't working.  However, since she hasn't been on it she hasn't been making any red blood cells which she always have made in the past. EPO is what Lance Armstrong was using to "blood dope".  It stimulates red blood cell production and kicks them into high gear. We are holding out hope that this will help.

I think Todd looks a little bit like Lance Armstrong!!  

We still have not heard about a team meeting . . . but I do feel that the doctors feel we have to give this time to play out before there are any moves.

Once again, we ask for your prayers.  It is very difficult to have life in a holding pattern, especially around the holiday season. But as I have said before it is way more Peaceful around our house. The break has been much needed.  I have started getting out and enjoyed some Canadian Black FridaySales!!