Tuesday, February 10, 2015

19 days post transplant

Good afternoon, friends and family of our little boy!

We are 19 days post cord blood transplant and William's white blood cell counts continue to grow. Medically, tomorrow they will call this "stem cell engraftment" because he would of had 3 consecutive days of cell growth (this should happen tomorrow, anyway).  Engraftment means the transplanted cells (cord blood stem cells) are growing within the host (William.)  Look at me talking all fancy!

William will continue to be in isolation for another 6 weeks or more.  He hasn't been able to leave his hospital room since January 2nd, when they started to prepare him for chemotherapy.  There is a big window in his hospital room and he loves looking outside.  I cannot wait to be able to take him with us camping and other outdoor adventures.  I'm actually itching to do a fair share myself; I haven't kayaked since before my pregnant belly got too big to fit in my boat.  There are several rivers around here and I have already been to the local REI store putting "feelers" out to let people know we'd like to rent/borrow some gear.  So if anyone knows anyone that has kayaking gear around here, let me know.  One guy at REI said we could float in the river and watch the Pittsburgh Pirates play at their stadium.  Sounds like a winner to me.

After we are discharged from the hospital in 6 weeks or so, we will have to stay local for up to 3 additional months as William will need to be within arm's reach of his doctors.  We are planning on staying at the Ronald McDonald House (its a quaint one bedroom apartment) for that time.  Robert​ continues to travel to Salt Lake City weekly for his job.  He's not a big fan of leaving us behind in Pittsburgh.

William will continue to need transfusions, either blood or platelets for a little while.  He is getting a blood transfusion today (his 5th since we've been here).  He got platelets yesterday.  All normal and expected as his body begins to heal. 
He rests a lot and he doesn't move on his own very much.  PT and OT come in weekly to help stretch him and keep him moving as much as he can tolerate.  He does move his limbs on his own sometimes, but not very much.  He moves his arms a lot more than his legs and can still give me a "high five," although he really has to think about it before he does.  He never gives up.  He is so incredibly strong-willed.  Even with the transplant, his motor skills with continue to decline (its called peripheral nerve damage, all part of the evil Krabbe Disease that cannot be cured, but hopefully the deterioration will slow down dramatically because of transplant).  However, because of the transplant, he should keep his perfect vision, hearing and receptive language skills (ability to learn and comprehend what is going on around him), whereas without the transplant he would start to lose at 12 months old.  William is only the 25th baby to undergo this type of chemo regimen pre-transplant (they have done 200 total cord blood transplants), so his future is pretty much unwritten.  We do know he will have VERY limited motor skills and will need a special wheel chair (when they are children its called a KidKart).  He was measured and sized for one last week, so he will have his own custom-made chair in a few weeks.  He will need a lot of assistive devices in the future; Dr. Escolar's team will help us in the future with equipment.  I cannot fathom what we will need post-hospital stay, but we have a lot of help getting our ducks in a row.

William is not running fevers, his heart rate and blood pressure are all normal.

That's it in the nutshell.  Everyone has been so supportive, I cannot put into words how thankful we are to have hugs coming from all over.  We keep moving forward and letting our little man dictate what he needs.  He's a such a sweet strong little fighter. 

Robert and I are hanging in there taking it day by day.  There are more emotionally strenuous days than others, but we have family and friends that are giving us much needed "breathers."   Grandma Carolyn​ has been with us the past few weeks after my parents Ron​ and Marcia​ left (they will be back soon).  I'm looking forward to my good friends Megan​ and Sara​ coming to visit this week!  My sister Ronna​ and brother Adam are both planning visits, too.

Love, The Branches

Just an FYI - I was in the same town as Garth Brooks this past weekend!  I didn't see him, though!!

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