We started the 4mL Captopril dose on Saturday and, let me be blunt, Lilly did NOT like it!!! By the evening, she was making strange noises and her arms and legs would tense up.....in the truck of all places. It scared the living daylights out of me!!! When we got home, I hooked her up to the pulse/ox and her heart rate was in the low 70's. Needless to say I called the Cardiologist and gave her a piece of my mind.
In the begining, I had my doubts about raising the dose, which I FULLY expressed, and it happened. I was SO VERY mad!
I am starting to get worried about going to Milwaukee because Lilly is so thin. I am afraid they will go "Oh I guess she will need to stay until we can figure it out!" Lilly will be getting alot of cookies and whipped cream this week, thank goodness it IS Christmas and the food is not in high demand.
I thought that the appt. was next Monday but I found out that it is next Thursday, At least I have some more time!
I know I AM blessed even with the struggles God puts on me, my daughter, and well, my whole family for that matter! It will be a hard few weeks, but being it is Christmas, maybe he can send a Christmas Miracle our way.....
We set up this blog to update about Lillyann's struggles and triumphs with Hypoplastic Left Heart Syndrome. Born March 24, 2009 ~ 1st heart surgery (Norwood) April 1, 2009 ~ 2nd heart surgery (Glenn) July 10, 2009~ G-tube placement September 22, 2009 ... 3rd heart surgey (Fontan) Sept. 11, 2012.
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