Where do I begin? Grab some tissues. Hug your kids a little tighter. The cath was bad. Just devastating. It took the cath to tell us that Tommy was born with lung disease. We were all unaware. His shunt is closing and we don't have much time left. We are no longer good candidates for his repair. The pressure in his lungs is too high from the lung disease, and the operation would kill him. He is on 40% oxygen and his oxygen saturation levels hover in the 60's to 80's.
We can wait a few months to see if the pressures go down, but in that time, his shunt is closing up on him. We can try to upsize the shunt, but we are afraid the new blood flow would raise the pressure to an unsafe level and he would die anyway. Grim, grim, grim. I am watching my baby die. His doctor has gone over his results again, and has not let us know what he has decided. It is too tough a call, even for this skilled, gifted surgeon.
We were told the shunt has a month to 3 months left before it closes. There isn't a way to reopen it, just to put in a new one. If his lungs can tolerate upsizing, then we can do that and he will be on oxygen for 6 months to a year, praying they heal enough to proceed with the Glenn. He is in the pediatric cardiac ICU unit at MUSC in Charleston. Don't know for how long. If there is nothing more that can be done, we may end up home next week to play the "wait and see" game. But what if his shunt closes here at home, and he has a heart attack and dies in front of me? NO! I just want my baby well!
I have fought too damn hard for him! I prayed for a new baby, I planned for him! I want him! I came home for a night to shower and sleep in a bed, and I find myself crying, fighting sleep because he is not here. His presence is everywhere I look, and yet, the house is so empty. His Glenn was supposed to be a happy surgery. Stage two in a three stage repair. Road to recovery. I feel so cheated, robbed, my family violated by these terrible diseases wracking his little body! Why, oh why did Rob and I have to make decisions about his death tonight when he is still alive?
My tears have only begun to fall. By the time I have cried my last tear, this world will be awash in my sorrow. Please pray for my baby. Pray for a miracle, for the doctors to make the right decisions. Pray for time. Pray my little ones life will be long, full and joyous. Pray he will be a grandpa someday. Pray for my sanity. Pray for Tommy.