Tuesday, April 29, 2008

Could have been worse, could have been better

Today's doctors appointment did not yield anything unexpected, which I am thankful for as I am not sure how much more of the unexpected I can handle at the moment. After a lovely LA commute of an hour and a half, Zoey and I arrived just in the nick of time for our appointment with her Cardiologist. Actually we saw our usual Echo tech first. Well, actually we saw our favorite  nurse Dacia who was oh so kind to administer Zoey's sedation. It was a simple liquid sedative that goes by the name of Chloral Hydrate and boy was Zoey ready for the much needed rest. At this point she will take it any way she can get it. Even in the form of drugs. For me it actually made me cry. Cry because I had such relief to see her body be granted a little reprieve from the last 5 weeks of total, absolute, sleep deprivation. I HATED that they had to wake her before we left. She was SOOO peaceful. Her body was in a complete restful state and her coloring was so beautiful and calm. Not that red , vessel popping color that we have come to call "the ultimate roid  rage "! She woke up ravenous as it had been hours since she ate. I fed her and awaited the report. Which of course I already had a pretty good inkling. After a multitude of Echo cardiograms in Zoey's little life, including pre-birth, I knew which measurement they were after. I knew we were looking at an increase in thickness but didn't know quite what the game plan was going to be. Dr. Badran, her cardiologist, came in and told me what I already knew and proceeded to call up Zoey's neuro and after some contemplation it was decided to hold off until Friday to see what the EEG says. Zoey's heart condition at this point is referred to as Asymmetric Septal Hypertrophy. In other words a thick heart. Which could possibly lead to a blockage. It is a known side effect of the ACTH but in Zoey's case her heart was already thick and now measures about double what it should. No blockage is great at this point but unless we start the wean process Friday it may mean a beta blocker to keep her from running into problems. Discouraging from the stand point that Zoey fought for 5 1/2 months to get to surgery. Surgery came and went and in essence gave her a new heart and now to think it is less then perfect again is a little scary. However, she continues to be in the best of hands and we thank God for that daily.We know her doctors will do whatever is in Zoey's best interest. We continue to feel blessed that we have been surrounded, this past year, with so many people who have come to love Zoey as their own. Friday will certainly shed some light on how this will unfold. I will continue to let go and let God lead me. This latest journey has been my ultimate test in that endeavor. As I have posted in the past, a quote I try to let resonate in my ears," If God brought it to you, He will see you through it". So, there it is in a nutshell. The upside of the day was that after some discussion they have sent us home with Chloral Hydrate to give to her before bed and maybe, just maybe, it will bring some rest to my littlest wonder. As you can see she is in need of it.

1 comment:

Denise said...

Not sure where I got your blog at, but wanted to drop a quick comment. Zoey is so precious, I wish Sydney was that little again..she turns 5next week. Glad you little princess was able to get some much needed rest. Sending prayers your way.