Well, maybe not the greatest, but some good news. Tara's ejection fraction went up 9%. Her short Infarction (which her doc is most concerned with) did not, but there is defiantly some marginal improvement which is good. Now that is the hard part, the part that I have a hard time explaining. Her function got better right? Yes, technically yes. We are not up to where we were before, in fact far from it, and we will not ever be able to get up there again. Her doctor said something in passing as we were leaving and it cut like a knife, not at the time, but later when I had time to process it all. He said "we don't necessarily need an echo next visit, right now we can play the numbers game all we want, but the issue still remains". The issue? Her heart is still damaged, in fact it is damaged beyond repair, so playing a numbers game means nothing. We might gain a few points here or there, but she is still in Congestive Heart Failure. Short of a miracle we will be getting a heart transplant and trading her damaged heart for slightly used heart that a donor no longer needed, and a family so generously gave. Yes, the big "T" word was talked about this last visit. His exact words were something along the line of "Its not that we need it now, but we would be naive to think it won't happen". So my reality world is not as much fun as my naive world. Other things that we talked about, the fact that we are getting some oxygen for home use. We spent some time up in Big Bear over thanksgiving with some friends. It did not got as well as it could have. She got altitude sickness. Her sats were 88-90 all night long. That does not help a girl who is already in CHF. So we will have some oxygen next time, as well, should the need arise and we need it at home. WE also talked about talking to Dr. Jeffery Towbin, I guess he brought up her case to him a bit ago (when we first had the big drop), but more in depth we will be talking. Like having a 3 way call. So as I am typing this her records are being sent to Ohio to have the best Cardiomyopothy doctor look at her case and give suggestions. The transplant doctor at Rady will be looking at her case around February or March.
So yes, all these things of still moving forward with her heart, yet we got a 9% improvement makes me want to scream. WE IMPROVED. But the long and short of it, is its not a numbers game. Her heart despite the small improvement is failing.
We also increased her medications yet again. Which in short means cue headaches, dizziness, vomiting, and sleepy girl. I was finally started thinking we were getting back to somewhere near normal again with her, what ever that is. We will still keep her out of school til after Christmas break, and go from there. I could totally use a few hours of her in school right now….Can anyone say Santa has a 6 year old tagging along!
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