When you take any sort of test, there is usually ONE correct answer. There may be good answers listed, but there is only ONE definite, right answer. Life is not a test. There is not just ONE answer to Life. Last week, we were given that lesson.
If you have kept up with our journey, you will remember that back in January, we traveled to Cincinnati to visit their airway specialist and we were told that since his mid face is pushed back and that is ultimately what is causing his air way obstruction, their crainofacial team wanted to do surgery when he was 2, so that we can work on getting his trach out. (You can read that update here: http://pfightingpfamily.blogspot.com/2015/03/it-raining-but-we-are-shining.html)
When we came back home and visited our craniofacial dr, Dr. H, and told him what Cincinnati's plan was, he quickly stepped in and said he would do the same surgery when B was 2 and there was no need to go back to Cincinnati.... but first he wanted us to meet with a new ENT, Dr. C, who studied at Cincinnati Children's. He felt that she would be the best for us and as proactive as we wanted. So we did. After meeting with her, she wanted to take a look at B's airway herself and consult with Dr. H on her findings, so that they can come up with a plan and time line of surgeries. So we scheduled and in May B had his procedure so she could see what the deal was. While he was in recovery, she sat down with us and quickly went over her findings. We were shocked to hear that it was more complex then we had ever been told. She said that the office would call us and set up a conference with his team of doctors to discuss their plan and what they think would be best for B.
That conference was last Wednesday.
Gabe and I went in expecting to hear what WE wanted to hear, not what THEY wanted us to hear. We were told that his case was a little more complex then we or they had thought and that he would need a little more surgery. But because his air way is protected with a tracheotomy, Dr. H felt that it would be in B's best interest to wait until he is 6 years old (as originally planned) to even start doing the surgeries. He thinks that the long term result will be better if we wait until his bones are thicker and more settled. They said that because B is growing, happy, and healthy for his syndrome, why take surgical measures. Just let him grow and let him be.
Cincinnati wants the trach out. They want to do his surgery when he is 2. They feel that the morbidity rate (YES, death rate) with kids with trachs is high, and why take the risk of having one if we can take surgical measures and work on getting it out. The sooner the better, right?
In short, they left us with the words "you have to make a decision on who you want to go with, what you feel is best for Brody"
So here is when you realize that life is NOT a test. What decision is right? Why do WE have to make this decision? Shouldn't there be ONE right answer? ONE way to do this? Who do we go with?Who's opinion do we trust? WHY... it seems that since he was born, I've been asking WHY!
I've been in a funk for a week now. This is weighing heavy on my mind. Do we live for 6+ more years with a trach or do we take measures to get it out. Being a trach pfamily is hard. Its work. Its scary.
How do we make the right decision?
I know we have to pray about it, and that God will send us a decision. But this isn't a test. We could get it wrong. I couldn't deal with the fact if we did get it wrong.
Im lost and at a stand still.
www.gofund.me/pfightingpfamily
-S
