Monday, July 29, 2013

Our journey continues...

Gracelyn had her most recent cardiology appointment in June. During that time her doctor told us that she felt like we could push her next heart surgery from this summer to next. We were ecstatic with this news. The last few years have been WONDERFUL! So another year to play, camp, swim, go to school and just be as "normal" as we can, was just what we wanted to hear.

Since March or so, I have been having the constant thought to get a second opinion on Gracelyn. This doesn't mean I don't trust our wonderful doctors here at Primary Children's Medical Center, because I do. I LOVE our doctors here and even more I LOVE her surgeon. I just felt there was something more, something different. I decided to contact a surgeon in Boston. (Children's Hospital
 of Boston is known to be the BEST. The best in the nation and possibly world.) I found this surgeon's email and sent him a little four sentence message. I simply wanted to know if he thought there were other options for my daughter's specific heart defects. Within an hour this very busy and brilliant man responded. He instantly won my love. :) He asked me to get him our records. We got them from PCMC as quick as they would give them to us and overnight mailed them to him.

On June 26th I woke up to my phone ringing at 7am. It was him, Dr. Emani. I wasn't prepared to talk to him. What he shared with me shocked us. He told me things about my daughter and her sweet heart that no one has ever shared with me. He told me about a new procedure that they are doing in Boston. Simply put, this procedure could take these little broken hearted babies from half of a functioning heart to a fully functioning, four chamber heart. He continued to tell me that he fells like Gracelyn is a great candidate for this procedure. Wow!  This news was a complete game changer for us. IF this procedure were to actually work, Gracelyn could end up living a long full life. Possibly living to adulthood and never requiring a heart transplant.This news was an answer to years of prayers and fasting. He ended by telling me that we would be put on the schedule immediately.

In September our little family will pack up and head to Boston. We know we will spend our first two days doing procedures and testing. Then we will have a weekend of family time. Then they have reserved the Operating Room for 7am the following Monday. That is ALL we know.  We have no idea what they are going to do, or if they are even going to do anything. Once they get inside of her heart, through a heart catheter, and after looking at all the imaging, everything could change. We could be told anything from 'go back home and do what you were going to in a year', or 'she isn't a candidate for anything-put her on the heart transplant list', or 'let's try to get her to a full functioning or and least 1.5 of a functioning heart'. We don't know. We have made the only decision that we can make at this point, and that is to take her to Boston and know that we have done ALL we can to give her the best life possible.

We are very grateful for this little girl and all that she has taught us. I wouldn't change any of it. NOT. ONE. MINUTE.  We are grateful for our other children who this definitely affects. We pray they can get through all this with out too much harm to their sweet spirits. None of them are aware any of this is going on. They don't need to know right now. Gracelyn doesn't even know anything is wrong with her. Her body tells her when it is time to slow down and she does it. We plan to raise her as though she has nothing wrong. We plan to raise her as though she can do ANYTHING. When the time feels right, we will explain to her just how special she is.

We are grateful to all that have stepped forward and offered help. It is a very overwhelming time. Jeff and I don't have the means to get her to Boston, but don't want to pass up this chance.  So many have offered prayers over the last few year and we are thankful. Please continue to pray for our family and sweet Grace.