Christmas Day came and we thoroughly enjoyed spending it together in the comfort of our home!

Levi woke up with a head cold and was feeling off most of the day; when Levi gets sick we know it is just a matter of time before the germs hit Malachi. Sure enough by Thursday it had also hit Malachi and he tanked pretty quickly, requiring supplemental oxygen right away. We also started his respiratory regiment (nebulizer, cough assist machine, and CPT shaky vest) to try to prevent a trip to the doctor or hospital. We always run the risk of him picking up something worse on visits to the doctor.

After 12 long days, today was Malachi’s first day being able to sustain a whole day off oxygen!

Levi bounced back pretty quickly and we were able to sneak away from the house and do some fun things close by with family!

Truthfully, this Christmas break has been one of the most carefree ones we have ever had! Yes, both boys were sick but we were able to stay home and just spend time together as a family. And the simplicity was such a gift.

Having Jake home was also a huge blessing, allowing me to catch up on paperwork and phone calls with our insurance battle. Still no final resolution but we are close.

One of the programs we are trying to get as a replacement for the insurance he is losing has some pretty high qualifications to get approved. You have to be able to meet “institutional level care”, meaning that Malachi has to qualify for care that requires skilled nursing services in a hospital or residential institution. This qualification is actually really hard to get, even for a child that shares many of his diagnoses.

This program is our “Hail Mary” play, one final desperate attempt to get secondary coverage for Malachi to cover the things that his primary does not. We have had several zoom meetings, and met with a third party evaluator and we finally received a letter that he qualifies for institutional level care. Jake and I read the letter and high-fived each other, overjoyed for this small victory.

But when I finally sat down to really process it stung a little bit and didn’t feel like much of a win. We focus on what Malachi CAN do, so these last few months of focusing on all of his deficits have been mentally and emotionally challenging.

We still have several papers to complete to make it to the next step but it seems our backup plans may be fruitful.

Changing gears to share a cool story…

Last week I had an appointment with a new ENT and in our conversation the topic of Levi’s airway came up. The doctors eyes lit up and he shared that he did his residency at Vanderbilt and asked if Levi was a patient there. I told him that we transferred him to Cincinnati for an experimental procedure called the Anterior Posterior Cricoid Split (the first experimental surgery we tried on Levi). He excitedly told me that he had done several of those on children at Vanderbilt with the same condition as Levi (bilateral vocal cord paralysis).

I smiled and said “I bet it was after January 2018!” He thought about it and said “Yes, it was later that year that we started doing those!”

Back in December 2017 we were desperate for solutions for Levi’s condition that didn’t involve a trach. In our intense research we found an article about this new procedure that Cincinnati Children’s Hospital was doing for kids like Levi and talked with the surgeons there who were very excited to take on Levi’s case. At this point they had done 19 of these surgeries.

Our secondary insurance said that they would only cover the transport and surgery if it wasn’t one available anywhere in the state of Tennessee. So the phone calls began to prove that no one in the state was offering this surgical option. We had to call all of the big hospitals in the state.

Our Chattanooga pulmonologist called Vanderbilt and asked about the procedure. The Vanderbilt doctor was intrigued and read the article we had found. He replied “No, but we are going to doing them now. Send him over.”

I panicked. I wanted Levi to have the procedure done, but I didn’t want him to be the first one at a hospital who had never done it. But without the Vanderbilt surgeon explicitly saying “No we do not offer this” we would not be able to get the transport to Cincinnati and the subsequent care covered. We asked the Chattanooga doctor if he could call back again and the Vanderbilt surgeon finally begrudgingly agreed saying “I will tell you no this time, but if you call tomorrow with another patient then I will tell you that yes, we do offer this procedure.”

So fast forward to my appointment with this ENT. To hear him say that they had done several of these on children with Levi’s condition starting in 2018 made my heart leap for joy. Yes, they very likely could have found this article on their own and started offering them for a reason other than us. But being able to be a part of the process towards OPTIONS in Tennessee for children other than a trach is absolutely amazing. I think about the hope that experimental procedure offered us during some dark days. Being able to share that hope with other parents is special.

I don’t even know where to begin with a devotional thought tonight. The amount of God moments from the last 14 days is completely overwhelming, and to share those stories with you just doesn’t feel appropriate as they involve so many others outside of our family. We have seen and experienced God’s provision, protection, guidance, and love. We have watched Him make a feast with 5 loaves and 2 fishes. And we have seen Him be glorified within incredible suffering around us.

This week I am treasuring those moments in my heart, and thankful for a God who allows me to witness His goodness.

And finally, here is a video of Malachi from this morning; it was his first oxygen free morning in a very long time and his sweet giggles brought me joy; I hope it does the same for you.

Much love,

Leah