Friday, June 7, 2013

Long overdue transplant update

Sorry its taken me so long to update.  We've been busy having fun and living life at home.  But Caelen is doing well. He's happy and growing and talking and signing up a storm. His casts have slowed down now that his bosentan has been doubled and the weather has gotten better, especially the pollen.  The only negative effect he's had so far that was weather related, was the 2 days we had poor air quality about a week and half back.  Caelen was really struggling to breathe, just huffing and puffing and I had him on 3.5 L of oxygen, which is a lot.  Fortunately, when the air cleared, his breathing went back to normal.  So it's definitely something that I need to keep an eye on this summer, as Annapolis has a lot of poor air quality days in July and August.

As for transplant status, we still don't have an official answer, and this is because Caelen is doing well.  I got a call from one of the transplant nurses back in May saying that basically, because Caelen is doing well and there is no immediate reason to get all 5 critical doctors together, they have held off on presenting his case.  His cardiologist has approved this decision to hold off on presenting since they have all the data they need, the cath was already done, and again, because he's doing well.  Dr. Rychik (cardio) also said at our last clinic visit that he didn't feel that Caelen's candidacy will be a problem when the time comes.  So I haven't pushed the issue because I'm not trying to tempt fate or invoke the evil heart demons, or whatever you want to call it.  Instead, Caelen and I spend our days with teachers, therapy, car rides and play dates.

Speaking of play dates, we've been spending extra time with cousins PJ and Brigid at Aunt Cheryl's house, and playing at Ms. Jen's house with her two girls Norah and Audrey.  Ms. Jen has a small zoo and Caelen loves to play with their dogs, guinea pigs, chickens and fish.  Oh yeah, the crabs too.  He never wants to leave and giggles when the girls put their guinea pigs inside of the barbie cars and buses.  He actually calls the pigs "chickens."  When it comes to cousin PJ, Caelen is infatuated with him.  He wants to follow PJ and be wherever he is, doing whatever he is doing.  It's really cute to watch Caelen in awe of PJ :)

As for the move to FL, that's been held up by some technical issues, so for the time being, we're still in MD.

Here's some pictures that my mom took this morning of Caelen playing in the rains of tropical system Andrea.  He had a great time playing in the puddles and didn't want to come in.  Don't mind the giant bump and bruise on his head again.  He tripped on his shoes and fell on the exact same spot that he hit his head back in March.

Time to run, I can see Caelen trying to take my mom's ipad.

Love, Katye and Caelen

1 comment:

  1. Thanks for the update, Katye. So glad to know that Caelen is having a fun time with his cousins and friends. Glad you are enjoying this time together. God Bless. Love, Mary & Mike