I don't like roller coasters, but the Universe has seen fit that I ride one this week against my will! Yes, Tommy has lung disease, and the fact of the matter was he was dying right before my very eyes. Rob and I started making arrangements....Then last night, his surgeon pops into our room and announces we are going in for surgery in the morning! He attempted to reconstruct Tommy's heart, but it would have been too much pressure on his little body, so he just upsized his shunt. It is just a band-aid, but at least I can stop with the dreaded "what if" death questions in my head! Now we have time to address his lung disease. Don't know what that is going to entail, but whatever it takes to keep my baby well. He will most likely be on oxygen long term....and I will be housebound....
So now, my baby boy is pink from head to toe. He is so beautiful. My life, my world, my heart, my soul all exsist in his tiny life. I never thought I would be happy to say Tommy had heart surgery today and I was thrilled all day long!
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Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries
3 comments:
Wow. What a miracle your son is. His life is truly an inspiration to me. We have our own little miracle named Faith and have been through many rollercoasters as well (in fact she is going to be trached next week) but still nothing compared to what your little one has endured. He has such a beauitful heart- God has some special plans for him! Your family in in my thoughts and prayers.
Jen Reming
That is amazing! I am so happy that they were able to do something.
Hun, there have been several times that I have been told by the specialists that they aren't sure there is anything that can be done to help Jessica and I am literally watching her die... then something comes up: either they replace her shunt, take down a conduit or put her on morphine that accidentally stops her lung bleeds... and she is still here. It's hard and my heart goes out to you. I'm so glad that they were able to do something to help Tommy and hopefully they will be able to help him with the lung disease too.
I had responded to you through pdheart ... I hope you got my messages.
(((hugs)))
Nancy
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