Hi everyone!
Well... not much to report on which is good news. Alex has been doing pretty good. Aside from the horrible mouth and throat sores, she's looking quite great. Not great enough to allow any photos though :)
Day 3 and day 4 have been pretty much the same. Yesterday Alex had the morphine pump installed. This will be a great thing for Alex because it administers a constant therapeutic dose of morphine all the time... and then she can give herself a boost when she needs it. This will alleviate the up and down level of pain she is in. Yesterday was pretty uneventful. The doctors are still having a hard time getting her anti-rejection drug, Prograf under control. It's been continuously high and I am unsure what that means or what it effects. I mean to find out tomorrow. Today things are pretty much the same. Alex is in a lot of pain from the mouth and throat sores and she is hardly eating anything. Which is understandable. Tonight I think they will put her on IV nutrition. It's probably a good thing. I think they will let her eat as many calories as she still can... but this will give her what she really needs. Alex has also gotten platelets today. I am in the process of making Alex another Beads of Courage necklace/lanyard. I started these when she was first diagnosed in 2007 and need to make another since her relapse. It's a pretty cool program that many hospitals have adopted. It's a way to keep track of everything your child goes through. There is a bead for all kinds of different things. Like a red bead is for blood... a glow-in-the-dark bead is for radiation... a white bead is for Morphine... This is what has happened since August 17th of this year:
E.R. visit - 1
X-Ray, tests, MRI/CT scans - 14
Lumbar/bone marrow biopsy - 13 (requiring anesthesia)
Radiation - 9
New port surgery - 2
Round of chemo - 15 (there could be many different chemos in one round of chemo)
Satellite visit - 10 (this is where a healthcare prof. comes to our house)
Dressing change - 22
Clinic visits - 6
Hair loss - 1
Morphine - too much to list
Blood - 23 (units of red blood and platelets)
Hospital admits - 6
Bone Marrow Transplant - 1
Here are a few photos of the necklaces that I have made before. It's hard to tell by a photo how long each of these are. They are about 4 feet long and there are 2 of them.
The wooden head beads are for when you lose your hair. The glow-in-the-dark beads (there by the head) are the ones you get for radiation. Every blue bed is a visit to the clinic. Every red bead is a unit of blood she has needed. The white beads are morphine but I always feel bad about clearing out their supply of white ones so I don't bother...
Here is Alex's new friend... the PCA morphine pump. This little baby sends a constant stream of feel-goodness to Alex.
Still getting O+ blood until her marrow starts making A+ cells
No comments:
Post a Comment