Sunday, October 14, 2012

[Too long]

Day +17.  Day 123.
It's been over a month since I posted.
Life's been a little busy.
About 42 kinds of crazy.
A whole lot unpredictable.
And has had lots of moments to celebrate, many moments spent in prayer, and a few moments of all out frustration/anger/sadness.
Today marks 17 days since Kenton received his BMT (bone marrow transplant).
123 days we've been on this crazy journey.
He's felt remarkably well during the past 17 days other than the typical tiredness associated with low blood counts.
There were a few days when Kenton was dealing with mucositis (sp?).
(The sores in his mouth/throat/digestive tract).
The doctors told us that once the sores developed, they would stay until counts recovered.
Through no small miracle (thank you for adding your faith and prayers to ours!), Kenton's sores are completely healed and he is able to eat.
TPN (total packaged nutrition) was given for less than one week.
Again, we were told that once BMT kids start on the TPN, they stay on it until counts recover.  Yet another miracle we are so grateful to receive.
There have been a few days when Kenton's mucositis has caused vomiting and even one episode of gagging/choking, but those have been incredibly minimal.
Last night when I put Kenton to bed, I thought he felt a little warm.
He was shivering.  I was worried.
At midnight vitals, his temp was 39.4 (101.1).
They gave Tylenol and drew blood for cultures.
Then around 1 his oxygen levels dropped into the 80s, so they gave oxygen.
His fever was down to 38.4 (99ish).
By 2, his fever was gone, and with oxygen, his sats were in the high 90s.
He was resting comfortably, we had a highly capable and QUIET (thank heavens for that!) nurse, and I went to sleep.
The next thing I remember is waking up a little before 7 to see Dr. Pulsipher examining Kenton (who was still sleeping soundly).
Dr. Pulsipher explained that the fever (and most likely soon and accompanying rash) are actually signs of what they call engraftment syndrome, which means that Kenton's body is preparing to engraft.
They'll use Tylenol as needed to control the fevers and give additional antibiotics and/or antifungals if necessary.
However, what I heard was fevers are good right now.
And, thinking back to rounds 1 and 2, Kenton always fevered before his counts started to recover.
When Kenton woke up, he ordered breakfast (yogurt and granola), ate, took his meds, and went back to sleep.
All of his counts are down today.
Platelets are being given.
Blood is ready to transfuse after platelets.
He's frustrated.
I think he thought his numbers would magically jump because of what Dr. Pulsipher said.
I kind of hoped to see a little increase.
We did yesterday with Hct and Hgb.
But everything is down today.
Thank you for your continued prayers and faith.
So many more stories to share.


cam said...

Thank you for the update. I'm so thankful both of you were able to sleep. My thoughts and prayers continue to be with you. said...

Deb, I just don't even know what to say about all this. Yes it is 2:20am and once again I am awake and thinking/praying for you guys. I just reread the blog and now through tears I am commenting. I just can't believe all of the miracles that have happened. It has only been 4 months since all of this happened. 4 very long months!!! Yet, reading other blog stories those 4 months are nothing. Knowing how things could be and how long this process could take, I am so grateful for all of the small and large miracles tha have been going on. We love you all very much and you know that we are here for ou whatever you need. <3 <3 <3