As you know we had our surgical appointment for Jackson today. It wasn't surprising, but none the less it was our worst fear becoming a reality. We haven't been able yet to compose to pick up the phone to call anyone, but at least wanted to get an update out that explained a little further.
The plan at this point is this:
January 24th- Echo/ekg and doctors appointment with our EP doctor.
Early February- They will use the data from the January appintment to present at a surgical conference where all doctors (cardio, EP, surgeons, etc) will be present.
Late February- Will get a call for another surgical consult where we will discuss everything that was talked about at the conference and shcedule Jackson's 1st surgery. Should be scheduled for something quite quickly after this consult.
1st surgery- PA band will be placed to condition his left ventricle to be switched with his morphilogical right ventricle. A dual chamber pacemaker will be inserted as well.
We then wait an estimated 6 months to a year for this ventricle to condition before we attempt what seems the impossible.... the dreaded double switch.
2nd surgery- The double switch is actually called one of the most difficult and complex pediatric surgeries. They will go in and actually flip his heart (to try to put it simply).
So, all in all, we could technically be gearing up for 2 major surgeries in 2013. We are somewhere in between completly devastated and relieved that someone actual has a plan since the day Jackson was born. We have lived with the stress of waiting and watching for a year and half and now we will switch gears to the stress of watching him suffer for a season.
To be honest, it is all still sinking in. It is much like the day of his original diagnosis where life seems like an impossible blur. I don't know how to get up and do tomorrow. However, this time we are in the hands of an incredible team. Today, 2 very important things were confirmed.
1) We will remain in Houston this next year. Our lease is up in a little over a month. We are having a really hard time finding something that we can afford that is even close to the hospital. This is an area that we are being streched in faith. We continue to tithe and continue to beleive that the perfect place is out there..... but truly we need to find something like as of yesterday.
2) Dr. Fraser and our team at TCH is the place to be. We won't be pursuing other opinions. We feel completley at peace with his care and his judgment. Something we had prayed that would be clear to us today.... and it was!!!
So tonight I wonder how I will ever look at my son recovering and sufferng. I wonder how I will recover as well from a parents worst nightmare. I know that Chris & I are strong, but this is something no parent should ever have to face. I wonder how to get up tomorrow and the day after that with all of this hung over our heads. It feels paralyzing. It feels like our life has come full circle back to our first appointment. Devastation.
What I can say is this. What I have seen in the last 2 years as it seems to have come full circle, is that we have seen with every turn that God has and will continue to be faithful. Where I have watched my heart ripped to sheds, He has made it abundantly full. When I have felt like our finances couldn't continue the fight, God's provided all our needs. So to him who He is able to do abundantly more than I could ever imagine, I lay all my fears, all the details, and all my deepest pain. I know He can take this trial, this test, and turn it into an incredible testimony. I am believng and clinging to that promise. That through the heart of my most precious that anyone who sees and hears the good work that is being done would taste and see that God is good!
Tonight I am going to be in denial, watch the voice, and toast my husband with a glass of wine. But, you better believe that tomorow I will be back at it..... gloves on and ready to fight!
thanks for the support, prayers, and love. We will all get through this! Keep this little face in your prayers... isn't he worth all of this??? What a sweetheart he is.