Raegan Renee and Zoey Rae Moore

Welcome to our children's page. Raegan and Zoey both suffer from Krabbe disease. Raegan lost her battle with Krabbe on February 1, 2004 at the age of 19 months. Her sister, Zoey, was diagnosed prenatally, born on July 15, 2005 and she recieved a cord blood stem cell transplant on August 12, 2005.

Journal

Friday, February 9, 2007 10:24 PM CST

Alright, I'm giving in and updating again.

Here is the latest with the "Bug." We are currently up to 7.2 kilos...yea Zoey. However, we have hit yet another kink in the road to recovery from this transplant.

Zoey spiked a fever 2 days ago and so of course we had to head to UNMC, which is not really my favorite place. Once there they basically made us wait forever and said very little. Her white count was 23, and has been up for about the past month, but they felt it unnecessary to treat her. I had spoken with Duke and convinced UNMC that they wanted to follow Duke's request for starting IV antibiotics with all she was doing. They did thank goodness.

Yesterday, we returned to UNMC for yet another dose of IV antibiotics and while there Zoey's breathing was off the charts. Her respirations were 80 per minute and her heart rate 180. There was something about it that just didn't feel right to me and I was hesitant to bring her home worried that she might crash on me -- and I am not easily worried by my little peanut. They did admit her on an overnight basis which again was fairly worthless. They did very little in regard to monitoring her and mainly just made it hard for her to sleep. They discharged us this morning without checking any labs or having an answer as to what she was doing and why. Before leaving, I requested that they draw a CBC, after speaking with Sue Wood, to check her white count because they wanted to pull all antibiotics finding it unnecessary with her cultures being negative.

CBC comes back and Zoey's white count has finally dropped to 10 (hmmmmmmm, she is responding to antibiotics, but UNMC wants her off, I don't think so). Unfortunately, it appears as though her blood levels may also be dropping...but that is not a definite yet. So here we are on IV antibiotics at home, but still no answers as to what she is doing. The good news is that her respirations have slowed down to around 50 and her heart rate is at 140's. Clearly there is something there, we just don't know exactly what.

Another CBC will be drawn tomorrow and we will go from there. I am just thinking happy thoughts and praying that we are not headed for another round of hemolytic anemia...although there are worse things out there so I should be grateful.

Please remember all the children that are fighting so hard to live...the road is certainly not easy.

Read Journal History

Hospital Information:

Duke University Medical Center

Durham, NC

Links:

E-mail Author: amno20@yahoo.com

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