Welcome to Coleson's blog. We've created it to keep friends and family updated on the journey we are about to embark on.. We appreciate your support and words of hope and encouragement during this time when it matters most.

Tuesday, February 11, 2014

T+200 and Leaky Hose

For those of you who are connected to my Coleson's Courage Page on Facebook, this will be pretty much a repeat of my post from this weekend.  For the rest of you, this will be new:

So my new analogy for this BMT rollercoaster ride is that it is like a leaky garden hose.  We tape up one leak just for another leak to pop up.  Last week his hemoglobin dropped to 7.7 so we had to spend another day in the Hospital getting a blood transfusion and IVIG.  Peyton and Rachel went with us as he his tolerance for hospital stays is minimal especially when you have to be cooped up in a hospital room for 5 hrs.  His blood pressure also took an unexpected rise over the past 2 weeks, requiring a couple doses of Irazipine and an increase in his amlodipine.  Also requiring frequent blood pressure checks which is just another thing I have to do "to him".  So far this week his BP has returned to "normal" so I'm hoping we do not have to go to yet another Dr. (Nephrology) He's been congested for the past 2 weeks as well, which just adds to the over all concern.  I think it's allergy related but it does seem to coincide with his steroid tapers.  We all had a bad case of allergies over the weekend (even Paul) so I hope we'll break out of this early allergy season (with the higher than norm temps) soon.
His echo last week was better than the last one we had in Phoenix which was on 1/13, I don't know in comparison to the one we had in Minnesota, but I'm hoping we can start nixing these weekly appts. off our schedule soon.
His platelets and WBC dropped this week compared to last (still within a normal range), probably as a reaction to the increase in hemoglobin and I hope next week all blood components will find harmony.  Dr. Douglas dropped his overnight fluids by 1/2 so he's only on 200ml of fluid overnight.  Now I only have to change his diaper once overnight which is a welcome relief.  We are continuing to taper his CSA which is what depletes his magnesium which is why he's on overnight fluids.  I long for the day we can stop them altogether.  It's a slow taper we started at 1ml/day total and we are not at .7ml/day total and will drop 1 ml per week.
Peyton is enjoying school, music, Spanish and gymnastics but not her new "Ben"...I replaced my stolen IPAD (Peyton's Ben) with a surface 2 (Microsoft tablet).  It doesn't have as good as apps for Peyton to play with but I like the comfort of a windows experience.  She has been such a good girl through all of this.  I constantly watch for clues that she is getting jealous or resentful of the attention Coleson gets and try to do things 1:1 with her.  This Sunday my girl friends took our kids to see the Cat in the Hat.  Kim and I even dressed up as Thing 1 and Thing 2.  

Paul has a bit of work travel this month and the Arabian Horse Show starting this weekend.  I know he doesn't get to ride Rafiko as much as he'd like and hope he can get back into doing so soon.
Aggie and Beth and Rachel's sister Mina are coming for a visit next weekend.  It will be nice to have the company.

And lastly the community garden I was formerly treasure of (no time nowadays) is having their annual plant sale on March 1st. so if you are in the Tempe area, stop by.