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.

Wednesday, December 11, 2013

T+138 Lights, Friends and Hot Chocolate

Coleson was released from the hospital on Thursday afternoon.  The echo from that morning showed that the fluid had decreased a bit.  We went home on Lasix and Steroids and back to weekly echos.  If the fluid doesn't go away, he most likely will have a "window" put in so that the fluid can drain out into his body and won't be able to accumulate again. Labs on Friday were good but it looked like his White Blood Cells and neutrophil count was trending down and he was really lethargic on Friday so I was still a bit worried going into the weekend.

Despite my worries, we had a nice weekend taking a drive on Friday night to see Christmas lights and did some stuff at our Ranch... (I haven't been there in almost 6 months) and stopped to see Paul's horse before coming home and watching Michigan State (my alma mater) beat Ohio State for the Big Ten Championship and a trip to the Rose bowl.  Unfortunately Arizona State did not fair as well against Stanford so I will not get to see both my alma maters duke it out at the Rose Bowl.

Sunday I woke up early to a cold Arizona morning (It was 56 degrees, some of you might not think this is all too cold for a winter morning), and put on my Coleson's Courage T-shirt for the Hot Chocolate 5k with some of my best friends.  The race benefitted the Ronald McDonald House and we got Hot Chocolate and Chocolate fondue with some tasty treats so it was worth the 5:30 alarm clock.    Then Peyton and I headed to good friend Grant's Firetruck Birthday Party and then to the FIGG Garden Social (FIGG is community garden I am (rather was) treasurer of).  A few of my garden friends designed the Coleson's Courage T-shirt and ran as well.

To my relief, today's labs were much better.  His White Blood Cells and neutrophils were back up, his platelets and Red Blood Cells were back up and though his hemoglobin was just slightly low to range, his reticulyte count was strong which should indicate the hemoglobin will be higher next time.  His next echo is tomorrow and I hope the fluid is continuing to decrease.

It's been a week since Johnny passed away and it was a highly emotional week for those of us close to his family.  Reading the posts and "watching" them from afar go through the grieving process and the funeral arrangements, etc. hits very close to home with me. A BMT is a highly risky procedure but for certain diseases and disorders really the only option available to try to save your child's life.  Though Coleson has reached his second "milestone" of being able to come home, he is and far from being risk free and in fact will never be risk-free.  It won't be until his 1 year mark that they will call it a successful transplant (as long as he's stable) and he will be able to resume some of the activities that he is banned from doing today.