Thursday, December 19, 2013

Never-ending Story

Week three of illnesses that just keep coming. I had started a draft after Michaels last Cardiology appointment. The first sentence started out as "Michael is doing awesome!!". Now.... I'm not able to start this entry the same way.
At our last Cardiology visit I was extremely emotional. After the visit three months ago I was positive that the pressure in Michaels heart had gotten worse and that we were about to talk about his next surgery. On the way there I realized how unprepared I was. I sat and had a nice cry before going into Children's so that I would have less tears for the doctors.
We started with his ECHO and went on with all his vitals. I was surprised that he'd gained weight because he's still so skinny. He's now 22lbs! Almost a pound for every month he's had since his birth.
I was amazed at his other results. The pressure behind his Mitral valve had not gone up but instead had stayed the exact same! What?! I was shocked and thrilled and so happy. I couldn't believe it. The pressure for the last six months has been at a 13. Once this number reaches 15 is when we'll need to talk surgery.
We were referred to the Syanagis clinic again this year. Michael is eligible until the age of 2. We went in a few weeks ago on Monday for his shot (rsv antibodies to help fight the virus). By Friday night we went to Children's emergency room with a 105℉ fever. We were admitted that evening as he needed some extra oxygen and only ended up staying the night. We were released the next day with oxygen for at home use. He's been doing good at home as long as we can keep his congestion down. I had high hopes that we were at the end and now we're dealing with a stomach bug. I'm now washing bedding for the second time to get rid of the throw up. After his bath he fell asleep on me whispering "owie, owie". Poor thing. Hoping this passes before Christmas. I want him to have the energy to play with his presents. I love the holidays. Thank you to everyone for your help this last year. It's been a long and amazing journey. I'm so blessed to have the friends and family that I do. Merry Christmas and God bless us... Everyone.