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, November 5, 2013

T+104 Still here for the snow

Day T+100 came and went and we did not get to go home as expected but we celebrated the day none the less. Coleson got released the Saturday prior to last but the still has some fluid around the heart so the Dr. put him on a month long steroid treatment as well as Lasix (diuretic) to try to try up the fluid.  In addition, he was put on more meds; antibiotics, inhalers, flonase, protonix on top of his existing 8 or so.  I have lost count of the number of meds he gets now.  He is having regular echos which still shows fluid but has remained stable for the past week.  He has another echo tomorrow and if the fluid has not increased Dr. Miller will release us to go home and we will continue our regular weekly follow up, labs and echos at Phoenix Childrens!

Meanwhile we said goodbye to two more families on Sunday who were fortunate enough to go home.  Coleson's BMT day "brother", Caleb was released on his 100th day. They were transplanted on the same day though Caleb has Fanconi Anemia.

 Also a sweet young boy, Eleafar, who has epidermolysis bullosa (otherwise known as Butterfly Kids) was also able to go home as well.  Caleb's family is one we are very close to and Peyton was best buds with Eleafar's brother, Gabo and both families will truly be missed.  I particularly am inspired by Eleafar's mother, Margarita, who has had to take tremendous care of him since he was born (I won't go into the graphic details) and also has 3 other kids. If there was one woman in the world Paul and I could help, it would be her.  She has sacrificed so much of her own life for her boy.  I tell you, if everyone could spend a day at a children's hospital or a Ronald McDonald house visiting and talking with families of seriously sick kids, there would be much more compassion and acceptance in the world...

We had a fun Halloween; Peyton was a kitty cat and Coleson, fittingly, a monkey.  The Cyclosporine makes him "furry" and it is literally everywhere.  He will be on it until his 6 month checkup in January and I can't imagine we will even be able to see skin by then.

Meanwhile we are starting to pack up in anticipation of getting released and trying to keep enough Cheetos and ketchup stocked to keep up with Coleson's appetite. Since he is back on steroids, he is eating morning to night, unfortunately his food of choice is Cheetos and Ketchup.  His hands are literally stained orange.