Life isnt a test.

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

If you can take it, you can make it.

B has a procedure tomorrow. Another one. A short one, but another one under anesthesia.  I hate this. I think the night before a procedure is the worst.  You know its coming and all you can do is think about it.  "Will he be able to handle the anesthesia AGAIN? Will they give us good news? What if they find something that will put a damper on all our plans for him." The day before a procedure is .....well....it is what it is.... I dont even have the words to explain it.  Your whole day is consumed by the thought of that single moment at the big white doors, when you have to hand over your son to a stranger.  A nurse, and Im sure a really loving one, but still a stranger.  I can tell you every detail of that moment.  Ive  We've been there too many times. We have walked down that hallway too many times.  First, it started with him in an incubator, then I carried him, tomorrow Im sure he will be walking him self and not knowing where he is going. Then, we will come up to the big red STOP sign.  Like one you see on a street.  There will be 2 big white metal doors behind it.  The nurse will say " ok, time for hugs and kisses... don't worry MOM, we will take good care of him"  She says "mom" because I am the one who turns into a baby.  I hold him, I cry, I kiss him a thousand times.  And I say "i'll see you in a bit....be good....be brave.....i'll see you when you wake up" I've said that 8 times and counting.  8 times to many.

That is what the day before a procedure is like.  You play that moment over and over and over in your head.  You have a different train of thought.  Nothing in the world matters or makes sense. You mentally try to prepare for another long day at the hospital. Get some rest, they tell you.  But you cant. Too many thoughts going through your head.  And that one moment just plays and plays, and it wont stop until you relive it the next day.

The day before a procedure flat out SUCKS!

Tonight after we put B to bed, we sat and watched the movie "Unbroken".  Its about a WWII POW.  A true story.  An amazing story.  There is a line that he repeats to himself when the times get tough. "IF YOU CAN TAKE IT, YOU CAN MAKE IT"    I feel like B is a POW in his own life war.  We are pfighting to get out of this and over come it.  And this statement holds true to him US.  If we can take it, we can make it.  One day, after the times have been tough, after we have been beaten down with obstacles, we will make it.  We HAVE made it.   We have made it this far.  We have beaten the "live past infancy" obstacle, amongst many others. We are going strong.  HE is going strong.  He will make it. And with that little 9 word statement, our pfight continues.

I pray tonight that the doctors get good rest.  That B handles the anesthesia, yet again.  I pray that they give us ANOTHER good and positive report.  That these findings set us up for success for the big surgery in September. I pray for mental stability for Gabe and I.  I pray for our pfamily.  I pray for a fast and easy recovery for B. I pray for his pfight.  I pray for him.

gofund.me/pfightingpfamily


good night,
-S

its raining but we are SHINING!

WOAH... where has the time gone.... its been like almost 3 months since I have written!  I wanna say nothing has been going on, but life has been so busy, busy with a  VERY active 17 (almost 18) month old.  Lets catch up! Ready, set, go....

January.  Wow, what a beginning to the year.  We started off a little rocky, with B and I both being sick.  He got over it in one day, but I on the other hand took 1 week to get through it. Then we had a MAJOR incident with a new nurse.  It was scary, landed us in the hospital and ended with a nasty trachea infection.  My poor little B, he was miserable, and I'm sad that we had to go through that.  But after a strong round of antibiotics and lots of TLC, he was back to his old happy self.  Then the biggest part of our new beginnings was our big trip to The Cincinnati Children's Hospital for evaluation. It was a GREAT trip with lots of information.  Here is the break down.  We had a total of 7 appointments in 3 days. We saw their entire airway team, and on Wednesday, the biggest of the appointments happened.  His broncoscopy.  They put him under anesthesia and off he went into a cold little operating room.  They stuck a camera up his nose, and one down his trachea.  After 2 hours of waiting, we finally met with the doctors and got the news.  His trachea is FINE...its growing like a normal trachea should grow.  It is a rare looking trachea, since its all cartilage, but its something that they do see and they do follow.  HOWEVER, since his mid face is pushed back due to his syndrome, here is where the issue is.  While they were able to get a camera in his nose, it was a very small one, and it stopped once it got past the nose.  Meaning, his face is closing off his upper air way.  While we knew this from our team of doctors here in Austin, the Cincinnati team has a different way of approaching it.  The ultimate goal is to get his trach out.  To do this, he will need to have his mid face reconstructed. Our doctors here in Austin, want to do it when he is 6.  Cincinnati wants to do it when he is 2..yes 2..TWO... in 6 months. WHOAH... wait .... what? Here's the deal, its an ugly ugly UGLY surgery.  They will go in through his bottom eye lids with a "chisel" and break his face in half... I'M.NOT.EVEN.LYING. Then they will move his mid face as far forward as they can, put a retraction (halo) device on his face and head, and let his bones heal for 4 weeks.  During that 4 weeks, Gabe and I will turn the device 3 times a day so that it pushes his face back in to place slowly.  Kinda like the skull distraction device he had back in April, except instead of pushing out, it will pull his face back in.  They told us to think of it like silly puddy....they stretch it as faaaarrrrrr forward as possible, and then slowly move it back into the right place.  It will move his jaw out, open his airway, and HOPEFULLY if all sets well and goes well, we can work on getting his trach out...BY THE AGE OF 3!!!  This is when I started crying.... this could be the start of a NEW and DIFFERENT LIFE.  To hear that he can possibly be trach free by the age of 3 was just amazing. While I hate to put the little guy through this, I just know it needs to be done.  After leaving the hospital, we cried.  We celebrated.  We grew more as a family.  

This surgery is a HUGE decision.  Not only mentally, but physically and financially.  Its a HUGE commitment.  Lots of decisions to be made.  Will we stay there in Cincinnati for a month? Fly back after a week long hospital stay, then fly back for the device removal? Is 2 a good age? Will insurance help us with this? So many questions.  We will sit with our team here in Austin and discuss.  They don't do this surgery here. I cant even BEGIN to imagine seeing his face look any other way.  This is by far MORE than just a cosmetic thing.  Its a life changing surgery!  But if we could get his trach out by 3 years of age....that is HUGE!!! We could get him ready for a "normal" life.  School, sports, talking, eating....so many things could be different.  I pray daily for peace of mind with this decision.  We have AT LEAST 4 more trips to Cincinnati in the next year!  Pray for us all!!

February.  Whew... what a fast month!  B has become SUCH a different child.  He is OFFICIALLY walking/running all over the place.  He loves to play hide and seek in the pantry.  He climbs the stairs. He learned to blow and give kisses. and get this... he has a little "squeak" that sounds like MOMMA!!! yes... his squeaks are starting to sound like words!!  We went in for our 6 month check up here at the trach clinic and his speech therapist there gave him his passimere valve. Its a cover that you put on his trach that helps him make actual vocal sounds.  Its hard to learn to use, but he is slowly getting the hag of it.  He has been super healthy this month (THANK GOD) and is truly thriving! 

As I finish writing this, one of my favorite songs just came on... "you are the best thing" by Ray LaMontagne.  He truly is the BEST thing that has happened...well him and Gabe.  They have both changed my life and have made me a better person. I cant thank God enough for all the amazing life changes and blessings.  I cant wait to see what the future hold for us. I see bright skies ahead.  I mean it.  Our rough sea is starting to calm.  I cant thank each one of you for all the love, support and prayers.  

http://www.gofundme.com/58c7p4

A happy and calm momma,

-S