This morning I sat down and had a beautiful and awesome update typed up and ready to post; we were even on track to be discharged Thursday morning! But this afternoon we went for x-rays and received the frustrating news that Malachi’s bottom screw has already popped out of his spine and is now in a muscle. We will have to go in and surgically remove it through his incision from yesterday (no surgery date set and is separate from the round 2 surgery). And then we are essentially back to square one.

His spine and skin cannot handle the round 2 fusion surgery he is scheduled to have in April. And since our Plan A hasn’t worked we now have to consider another approach. Our surgeon is consulting with colleagues this evening and speaking with plastic surgery to consider all alternatives and will present his plan of action to us tomorrow.

At this point it looks like halo traction may be in our future, which means living in the hospital for several more weeks.

I am discouraged. But we will figure it all out and life will go on. I just need to mope around for a few hours.

Here is the update I typed up before we discovered the complications…

Malachi took his time getting out of PACU and up into a room last night, finally getting settled very late last night. His pain is being managed well, he is very stable, and he is mentally clear!

Since 5am we have had at least 50 people floating in and out of his room from all the different teams on board….general surgeon, respiratory therapists, pulmonology, orthopedics, pediatric pain management team, x-ray techs, and all kinds of nurses and students. The door is opening nearly every 5 minutes right now.

This afternoon physical therapy came by along with someone from the wheelchair company and adjusted his chair for his new body positioning. He is expected to be several inches taller when we are finished fixing his spine!

We were able to get him in his wheelchair for a little bed break and went on a field trip to get x-rays. Malachi enjoyed the adventure.

Malachi got his chest tube out. He had some blood in his lungs from surgery but it is starting to slow down and his X-rays are continuing to improve. The biggest risk right now is still a secondary infection popping up so they are still drawing labs regularly to watch his numbers. He started to get a bit pale this morning so we are monitoring it closely and talking about blood transfusions if it doesn’t improve by morning.

We are realizing that the way this surgery was done was actually pretty uniquely. Usually all fusions are done from the back and not the anterior side (well, his was more of a lateral cut from the hip line up to the rib cage). But they were able to get some substantial hardware in there from those angles that they couldn’t have successfully done from the back.

This is the best before and after visual I can get for you right now and was taken from the side. Absolutely fascinating. He will get more hardware in the lumbar region when he is fused in April but the goal this week was straightening his pelvis.

Malachi is still on oxygen but we expected that and are focused on keeping him safe and comfortable so no rush on that one! He is getting some fluid in his g-tube with plans to start watered down formula back tomorrow.

Please be in prayer for my head space. Malachi was doing SO great and having the plans so drastically change and adding in another surgery (potentially this week) is so sad. My heart hurts for him.

And a short Levi update. He is doing well right now and staying busy and distracted!

Yesterday while I sat in the surgery waiting area I was able to read a few new books I had purchased just for this occasion. The first one I read cover to cover, titled “A Grief Observed” by C.S. Lewis and as I leaf back through the pages today and look over the things that I felt like warranted an underline I can’t help but reflect on the words I read and laugh about how I needed the reminders today.

“But supposed what you are against is a surgeon whose intentions are wholly good. The kinder and more conscientious he is, the more inexorably he will go on cutting. If he yielded to your entreaties, if he stopped before the operation was complete, all the pain up to that point would have been useless. But is it credible that such extremities of torture should be necessary for us? Well, take your choice. The tortures occur. If they are unnecessary, then there is no God or a bad one. If there is a good God, then these tortures are necessary. For no even moderately good Being could possibly inflict or permit them if they weren’t.”

And in the other book I started, “The Problem of Pain” also by C.S. Lewis I read this quote:

“Lay down this book and reflect for five minutes on the fact that all the great religions were first preached, and long preached, in a world without chloroform.”

My faith doesn’t depend of the outcome or the setbacks. It is rooted in truth. But every now and then I need an Elijah moment where I can lay down next to the brook in self pity and take a good nap.

So here is to an Elijah night. Keeping it honest and real over here in Nashville haha!

Sincerely,

Leah