Sunday, July 26, 2015

No Easy Way Out

I wrote this back in Feb 2015. I just couldn't press publish.  There has been some updates to this post and I plan to write again very soon.  I have to get it out of my mind.
For a long time (2 years or so, by now) we have known somethings about Chris' long-term health.  I am hoping that by finally blogging it I can let some of the stress/anxiety go.  A little back story, Chris was a premie, he was born with Subglottic Stenosis. You can read more about it here Not the MOST scientific journal, but it does give you the gist.

He was trach'ed at birth until he was seven, when he underwent a series of procedures to have a few of his ribs placed in his neck to hold open his airway. They nicked a vocal cord during and that is why his voice is diminished. Other then that it was very successful. He over his lifetime has had somewhere in the neighborhood of 70 procedures to keep his airway open.

About two years ago, while getting worked up for Gastric Bypass his ENT used very devastating terms to describe what could happen if Chris ever had surgery again. The ENT said things like living wills, discouraged unless extreme emergency, and catastrophic. He told us that in his opinion Chris' airway was much too fragile to support it. Beyond that, there were noted negative 'changes' in his airway since the last visit. We were blown out of the water. He had never been told that before.  We were sent into a tailspin for sometime. He was dropped from the RNY practice, we tried another hospital with better ENT coverage, his ENT still said no.  He saw top of top at Hopkins. No Again.

Now understand, because he has the airway he does, he can't just 'move more' it doesn't work. He cant get his heart rate up enough for his lungs to make the gas exchanges needed to loose weight. He has put weight on due to poor choices on top of that.

While all of this is going on Chris also has developed an umbilical hernia, it is large. He has had testing on it and it is fat filled. So that is good. But it has become a ticking time bomb. It is only going to take him picking up one of the littles for this thing to rip open. It is very large. I have taken on the heavy lifting, snow removal, mowing the lawn etc. He hates it. But there is not another way right now. RNY or no RNY  he MUST have this surgically repaired.

That brings us up to the now...

He has found an ENT out of UMMC that will support the surgeries (hernia and RNY) but with one HUGE string attached. He has to have a temporary trach placed. Now this might seem like a win. And in a very small way it is. There are however a shit ton of cons.... Temporary really is zero guarantee that they will be able to remove it. Ever. If temp become permanent Chris' entire quality of life will be effected. He looses his voice. there would be no more camping, no more beach days, a lot of social anxiety, he would have to carry suctioning equipment to work. This would happen with the temp one as well, but we would counting down the removal. They will have NO CLUE until it has been placed.


Going even further, the Trach just allows the surgeries to happen. The surgeries themselves carry huge risk.

I have let myself go to some dark places.
What happens if I loose him?! The girls loose him?!
I cannot bury him. I cant. My heart breaks to type those words. I cannot. I would have to move Lily's therapist in.

He is a walking wreck. Hates to talk about it. I hate to see him so sad.  We both have come to the conclusion that he needs to risk it, his body is working too hard. We are going to loose him early anyway if he does nothing.

We have had conversations lately that have been so sad. Truth be told. I didn't want to go back to work. I love being an at home Mom. He loves me being home. It works for our family.  However, he wants me to be established.  So off I go, with a smile on my face not telling my potential employer I am only interviewing because we have debt that my husband wanted paid off in case he dies. How terrible it that?! That is our truth right now. Is it sad that I want to not worry about the debt and plan a Disney trip, just in case. That this past Christmas he told me through tears that he was so afraid that this would be his last Christmas. What the HELL do you say to that?!


Of course the girls know NONE of this. They think Daddy is going to finally have the surgeries to get healthy and that is all they will know unless there is a need to bring them in. I guess all this worry and upset is for nothing because the Bypass/Hernia surgeon could still say no. But I don't think that will be the case.

He doesn't know that I cry a lot.  I worry even more. I am so scared. All of my Google searches have to do with dealing with the loss of a spouse, how do you get you kids through the loss of a parent... He knows that he must have a living will made. Who wants to do that at 36 years old?  With his family dynamic,  he knows it will be blessing to have his wishes written out for me to just follow.  I need to plan for the worst and pray hard for the best. Whatever that looks like. As far as I am concerned as long as he is still here he won.

It seems just so unfair. On so many levels.

I am so glad that I took the time to write this out. Sad as it makes me.

I just want see the future just 12 months from now and he made it through it all great.  We keep saying 6 months for 60 more years.  We can do this. He can do this. He has to.


Kathy said...

Oh Megan, I knew you guys were struggling but I didn't realize this much! Prayers, good thoughts, and a listening ear anytime you need it. Love you guys!

Reba said...

Megan, I had no idea you all were dealing with this. Will be praying and thinking of you often!