Surgery

This is the big one. The one I haven't wanted to write about. Talk about. Even think about. I kept saying I won't talk about his surgery until we have the date. Now we have the date and I have to think about it. 

July 8th. 

We are traveling to Cincinnati this summer for Jackson to have a Laryngotracheaplasty reconstruction surgery (LTR). They will cut out the damaged part of his trachea and take a piece of his own rib cartilage to reconstruct his airway. The top hospitals in the country do about 10 of these a year. Cincinnati Children's Hospital is the leader in the world for this type of surgery and they do 50 a year. We will go out the week before for Jackson to have a week of testing to see if he's a candidate. If he is, he'll have the surgery July 8th. Then he has to stay in Cincinnati for about 6 weeks to recover. 

I've had a weird relationship with this surgery for the last few months, looking forward to it with both hope and dread. 

It's been my last shred of hope that Jackson will get better and go back to his normal life. I've clung to it with all my strength. This is what we're working towards: keeping him healthy, getting him stronger, getting him to Cincinnati for surgery. And I'm terrified he won't be able to have the surgery. 

But I'm also just as scared he will be able to have the surgery. This surgery feels too big. He's already been through so much this year, how can we already be doing more to him? And what if it fails? When you've been holding on to hope so tightly, it's scary to let go. It seems too good to be true that the nightmare we have been through this year, could really be undone this summer. And aren't we always taught not to trust something that seems too good to be true? 

So I'm scared. I'm scared he won't have the surgery. And I'm scared he will have the surgery. But despite our fear, we're moving forward. We're making plans. On to Cincinnati. 

Jackson's driving the bus and we're along for the ride. 

Thank You

I still remember vividly sitting in the surgical center waiting room while Jackson was having his tracheotomy. It was after 8pm. His surgery had been pushed back several times. It had been a long day of anxiously waiting after an even longer 3 weeks of anxiously waiting and hoping he would get better. We had once again declined offers from family and friends to come sit with us while we waited during the surgery. We were drained, emotionally and physically, and just wanted to be alone. 

But as we sat in the waiting room I remember looking around to see families everywhere. Even that late there were several other families waiting. There was one in particular that must have had 15 people waiting. All in matching shirts with balloons. I have no idea what kind of surgery their kid was having or what kind of battle they were up against. Maybe it was an easier one. Maybe it was harder. But I just remember thinking they looked too happy and at ease to be in a children's hospital. It reminded me of when my father in law was fighting cancer and the whole family showed up to the hospital in matching shirts every single day he was there. The doctors and nurses all knew who the Parkers were. My father in law did not have an easy battle but I bet there were other patients and families who were fooled into thinking so because he had such a large team there to cheer him on, make him laugh, be his support. I bet there were times another onlooker thought 'they are laughing too hard to be at the cancer institute'. As I watched that family, thinking of our family, I turned to Hunter and said maybe we're doing this wrong. Maybe we shouldn't be trying to do this alone. 

It was after that night we stopped fooling ourselves into thinking we could do this alone. We let down our walls we had put up thinking they were protecting Jackson. Protecting ourselves. From what, I'm not sure. We let go of the thought we could do this all alone because we weren't meant to. We are fortunate to have such an amazing family and friends so willing to help us out.  Since then we have been absolutely and completely blown away by the generosity of our friends and family. Words will never do justice to the gratitude in our hearts for all of those that have helped us in so many ways. Jackson is stronger, healthier, happier for the love and prayers he feels from so many every day. Thank you. Thank you for your prayers. Thank you for your generosity. Thank you for your support. Thank you. 

Beautiful Noise

Jackson losing his voice has been a tough pill to swallow in all of this. It was one of those things we didn't even think about until after he had gotten the tracheotomy. When Jackson first got really sick and was intubated the silence in his room was noticeable. And we didn't like it. Hunter kept a steady loop of soft music playing for 2 weeks because we couldn't take the silence. We would torture ourselves watching videos of Jackson running around, yelling over and over just sobbing. Praying for the day when we would see him like that again. 

Because Jackson has so much scarring in his airway now he is not able to push enough air up around the tracheostomy and talk. Removing the feeding tube in his nose reduced a little pressure his esophagus was putting on his trachea allowing him to make some small noises again. But not enough for a speaking valve. 

But the thing is Jackson doesn't need his to voice to make noise. Lots of noise. Beautiful noise. We worried so much about how he would communicate with us. How would we know what he wanted. Or if he needed us since we couldn't hear him cry. But Jackson has picked up sign language so much faster than I imagined. And now he communicates better than he did before (which was mostly just a combination of pointing and yelling with a few bye byes thrown in for good measure). 

I put together a video of the signs Jackson has learned so far. The first clip is the last video I took of him talking on December 27th. Watching it doesn't make me cry anymore. It makes me proud to see how far he's come in his communication. Especially now that I know he will have no problem continuing to make noise. Lots of noise. Beautiful noise.