Santa Baby

Here's our handsome boy in his Santa hat. He had a bad blood gas this morning after they tried to wean to a rate of 10 (for my non-medical people he didn't like them trying to wean him from the ventilator). His dialysis was also changed to 3 hour dwells at the same time and he was sitting up in a bouncy seat. Maybe all that change was just more than he could handle. I'm just praying he's not trying to get sick again.

There was a Christmas party at the hospital today put on by the "Heart n Hands" group. It's a support group for the families of pediatric heart patients. I had contacted them earlier on in the month and told them I wanted to meet someone who had been here for a very long time and had lots of complications and still had a good outcome. I met a little boy and his grandma that were here for six months before he got to go home. He had many complications and had to go home on a ventilator with a trach. Just seeing him walking around without any tubes helped me tremendously (no more trach either). There was another mom I met that said, "Just think, next year you'll be here visiting with him and you'll wonder how you got through it" - I really hadn't thought about it that way until she said it. Mav is such a strong little boy. I know we'll go home and be here to visit at next year's Christmas party. I just hope we're closer to the end of this journey than the beginning.

I was watching a tv show this evening in Mav's room with a little boy who had some severe medical problems and is now better. His mom said, "We walked through a valley, but the ending was glorious - he's just a miracle." Someday that's what I'll say, too. Thanks for everything. Love you all - jc

PS - Thanks to those known and unknown people who have blessed us this holiday season and throughout this time. Your generosity is overwhelming. May God bless you ten-fold.