Wednesday, June 22, we had our appointment with Dr. Everett , the heart failure/ heart transplant cardiologist. We had changed it from the 15th , because of Mason's fevers and hospital stay. The appointment was to up his carvedilol dose, do an ECHO on his heart, and talk with Dr. Everett about Mason's future medical plans. It was a day full of emotions.
The good news is.....Mason gained 7 oz since he got his G-tube!! And hopefully even more now (because now it is the 27th when I'm finally finishing this post).
The not so good news is..... his ECHO showed no improvement once again :-(
Each ECHO since April, showing him in heart failure, has made his need for a transplant more and more a reality. Then when we were sent home that day with a "transplant packet" (a thick stack of booklets and pamphlets about heart transplants) it really hit Mark and I that this is the path our little Miracle Mason is headed down. Even though I was pretty sure since mid June transplant was our next step, this meeting with Dr. Everett and receiving the packet of information filled me with a lot of emotion, mostly scared, but also a feeling of confirmation that this is TRULY what Mason's body needs to extend his life here on earth!!
What is the plan?
Mark met me at Primary's in time to meet with Dr' Everett that day. We had a lot of questions for her and we are very appreciative to her and her nurse Michelle for spending so much time with us. Emotions were high because she presented to us different options....one being fore going transplant even if he can't have the Fontan (the surgery which would have been next if he weren't in failure) and just let him live until his meds and oxygen can no longer sustain his life....the other option is transplant.
Okay, for me there is no question about exhausting every last resort to give my baby a chance at life!!! So, having said that, there will be a long road ahead, but definitely one we are willing to take and fight through storms as we go....to give Mason a chance at a longer life. If he is able to receive a successful transplant with no rejection his quality of life will be such much better than his half of heart (and failing too) could ever offer him. Now, it's just getting from point A to point B that will require a lot of faith, hope, and endurance.
We go back again on August 3rd for one more dosage change and monitoring of Mason's blood pressure. That will put Mason at the highest dosages on all his heart meds. Then we will return back on August 17th for another ECHO. If there is still no improvement in his heart function, which we are not losing hope for a miracle, but medically it is not expected, then we will start the process to get him on the transplant list. The plan is to draw labs that day to check his antibody level and also to schedule a cath within a couple weeks. The heart cath will give us a more exact measure of his pressures and function.
Dr. Everett said she thinks he will be put on the list within the next 3-6 months. Why the wait? If he's maintaining his heart function and not getting sicker then a little time to put some weight on and get stronger would be good! If his heart function gets worse then we would get him on the list a lot quicker.
I copied the following quote from Gracie's blog (thanks Michele) because when
I read it I felt like it was meant for me at this time. I am grateful that I do know I can pray to my Heavenly Father for guidance and comfort especially while facing this storm with my sweet baby and his broken heart.
"Mortality is a period of testing, a time to prove ourselves worthy to return to the presence of our Heavenly Father. In order to be tested, we must sometimes face challenges and difficulties. At times there appears to be no light at the tunnel's end—no dawn to break the night's darkness. We feel surrounded by the pain of broken hearts, the disappointment of shattered dreams, and the despair of vanished hopes. We join in uttering the biblical plea 'Is there no balm in Gilead?' (Jeremiah 8:22). We are inclined to view our own personal misfortunes through the distorted prism of pessimism. We feel abandoned, heartbroken, alone. If you find yourself in such a situation, I plead with you to turn to our Heavenly Father in faith. He will lift you and guide you. He will not always take your afflictions from you, but He will comfort and lead you with love through whatever storm you face."
Thomas S. Monson, "Looking Back and Moving Forward," Ensign, May 2008, 90