Again, I am embarrassed and apologize to any of you who continue to check in on our family. The lack of blog action doesn't reflect the activity level of our family, that's for sure!! We have been having a blast this summer...lots of baseball, soccer, running, swimming, pitchers upon pitchers of iced tea and lemonade! Along with the carefreeness of summer, we have been carrying quite a burden concerning Gracie's health and upcoming surgery.
If you have been here awhile you know the severity of Gracie's heart condition. Well, we are at the crossing point right now as we near what has been given us an estimated life expectancy for our sweet little girl. That is...without a procedure called the Fontan. In March of 2010, Gracie was scheduled for an extremely high risk procedure. At her pre-op appointments the day before the scheduled surgery, I was told it would not be done. We were devastated. All along, this was the procedure to give her some years--who knows what could happen if Gracie were given several years? Even 15? What advances would be made in that time? Instead, we went home knowing that the Mayo Clinic was reconsidering the plan for Gracie's life--a short term, rather than a long-term plan. Crushed.
Again, last winter, as Gracie became bluer and bluer and her activity level decreased, the Fontan was talked about. Again in March, we received the news that it was too high risk. Instead she was to have a shunt replaced, which would eventually wear out her one ventricle and she would have a short life.
With every procedure, every surgery, we have had peace. Even with the poor odds, even with the seriousness of the situation, we have had peace that she was right where she should be, we were putting one foot in front of the other, all the while praying for God to give us wisdom and to just follow His lead. This time...we have had no peace. I'm a searcher, a researcher when it comes to my children. I have spent hundreds of hours reading medical journals that way beyond my grasp--I'm really not that smart! Yet, I'm learning all I can about statistics, surgeries, treatments. Curtis, who is much, much more intelligent than I am doesn't work that way. He is so logical, yet the news is always so devastating that he has shared with me that his answer is not in journals, statistics, and all of that, but rather in prayer and Scripture. Perhaps it's because I happen to be the one who is at the hospital with Gracie, brings her to appointments, meets the other families who have sick kids. He is DAD. We cope in different ways, I guess. I think it makes us a great team!! Regardless, we have had no peace about this upcoming surgery.
Michigan. We have had no ties to Michigan whatsoever. I knew about Boston and CHOP--awesome heart facilities for children, but Michigan? In the past couple of months, several people had asked me "Have you thought of Michigan?", "I know__________, who was treated for a serious heart condition at Michigan", my mom sent me a newspaper article about a little girl with heterotaxy who was doing well after a few surgeries in Michigan. I began to look up University of Michigan and CSMott--ranked #3 in the US for pediatric hearts, specializing in Hypoplastic right and left hearts--Gracie has that with her heterotaxy. We prayed. The answer--Michigan. When we went for Gracie's cardiology appointment in June, I asked her cardiologist to send Gracie's records to Michigan. He did. He also told me that likely the answer would be the same.
Today I grabbed the mail as soon as we arrived home from a fun weekend of soccer. A letter from Michigan and it was small and skinny. That is never good news, is it? At first I opened it up and really couldn't understand what I was reading. Then..."Quite honestly, from my review of the data, I would not feel that a Fontan procedure would carry an unusually high risk." and "I would think a fenestrated Fontan would be a better choice." Woohoo!!
So what does this mean? First of all, we really want to keep Gracie at Mayo--perhaps the doctors will reconsider and perform the Fontan procedure. If not, we will schedule an appointment as soon as possible in Ann Arbor, Michigan. If Gracie's insurance isn't accepted at UofM, we will need to find somewhere that she can have this surgery that could perhaps give her a much longer life.
God speaks. He speaks mainly through His Word, but He also speaks into our hearts where we are to turn next. As stressful as these past months have been for us, He has given us this comfort that we just follow His lead. Sometimes, I believe, he places people and circumstances right into our paths--sometimes we call this coincidence. I believe they are God incidents instead. Divine appointment, so to speak. We rejoice with this awesome news today, not only the words from this letter that are so positive and hopeful, but mostly we rejoice that He continues to provide a way, He continues to lead me and guide me, He continues to reign here on earth and give doctors wisdom and children hope.
I'm amazed, simply amazed!
Gayle
