Friday, June 12, 2009
Tears and Fears
From the title of my post you can well assume today was not a "good news" day, but rather a very long tear filled day up at Primary's. Today was Mason's 2nd ECHO since the one in April that showed lowered heart function (in scarier words: heart failure). We have prayed and hoped over the last 9 weeks that his new meds would improve the function, but unfortunately this was not the path Mason's little heart has taken, and there was NO IMPROVEMENT in his valve leakage or ventricle squeeze today. So basically he is in true heart failure :( Words I have avoided and hoped would never describe our little Miracle Mason!!!
What now? I met with a nurse practioner from the heart failure/ and transplant team. They started Mason on 1 more med Carvedilol which is also to help the squeeze (unfortunately it usually only has good results w/ heart patients who need better function in their left ventricle....Mason doesn't use his left ventricle.....that's the broken part of his heart....so he needs help w/ his right ventricle's squeeze.....basically, this is kind of like a last resort med). We had to stay for a couple hours after his first dose to monitor his blood pressure, because a side affect can be too low of blood pressure. His was fine. They also drew some labs (more tears for Mason and I both this time...he hates the lab...and I don't blame him) to get a base line of his blood work for our new heart team. And we will go back every two weeks to up his dose on the new med, monitor it, and begin working w/Dr.Everett.
Do we know if transplant is the answer? Not yet! Not everyone is a good candidate. Antibodies can be an issue I know. You can have too many sometimes. I honestly don't know very much yet. Just bits and pieces. They will also do more echo's and a heart cath before discussing transplant seriously. So many questions! So much wondering! And now we just wait.......
I've had many tears of joy as Mason has blessed my life these last 18 months. I've had many tears of gratitude to my Father Above for allowing Mason to live at times when he was so close to returning Home. But today, I've had tears because I am honestly scared! I have so many fears! Fears of the unknown! Fears of losing my baby! Fears of what lay ahead! Fears of making the wrong or right choices for Mason! Fears of adequately caring for my other children in the midst of Mason's heart worries...............oh, tears and fears!!!!
My heart melts as Mason smiles at me right now. He is so happy all the time and has no idea why Mom is so very sad today.