Malachi is officially at Day 10 and it looks like we have 15 days to go until surgery. He will need to stay inpatient for that recovery as well but hopefully he will recover as well as he did from round #1 before the setbacks and we can make it home by the end of the month.

Today he is up to 9 pounds of weight attached to his traction, and by next Tuesday he will be at his target goal of 20 pounds, increasing by two pounds each day.

We were hoping that he would acclimate well to the weight increase each day but he has struggled a bit with pain management. He has been signing often that he is in pain and will isolate the area that hurts. So far it has been head, neck, or back pretty consistently. I am so incredibly proud of how well he has been trying to communicate and be heard. I tell him every night he is the bravest and strongest person I have ever met.

We have settled into a routine of sorts, Malachi going to sleep around 1am each morning and doctors beginning their rounds at 5am. We have a pretty steady flow of people in the mornings, and it starts to trickle down a bit by the afternoons. Nighttime is when Malachi comes alive and we spend time playing games and trying to get smiles out of him. Shark Attack, iPad games, Go Fish, Old Maid, flying drone, puzzles, music, audio books, and movies. Tomorrow I have a few more toys being delivered that I think will be a huge hit!

We reposition Malachi every 2-3 hours into a new angle for his traction: 90 degrees in his wheelchair, 45 degrees in the bed, and flat when side lying (his most comfortable position). Here are some before and after x-rays from today; keep in mind that the after shows what his spine looks like right now while in traction. Our goal is to expand that crevice right above his booty so it isn’t folding like it is in the “before”. I am also happy to report that no other screws front last week’s fusion have pulled out of the bone.

When Malachi is hooked back up to traction after a reposition he starts to breathe differently from the tension and pain, kind of like a chugging breathing that shows extra effort. We initially thought is was positional, like an airway obstruction, but it has consistently continued so I think its safe to say it is a pain response.

We are trying to keep Malachi comfortable with pain medication as needed and so far it has most definitely been needed. The surgeon told me today that most kids are off of pain meds by now when on traction but I think with Malachi’s lack of muscle tone at baseline this new regiment is a shock to his system.

We have had great nurses over the last 10 days! We are thankful for the consistency in care we have received, getting the same nurses several shifts in a row who know how to comfortably position Malachi and communicate with him.

I have been having a hard time eloquently expressing myself with the doctors. Malachi is doing such an amazing job telling me when he needs support and meds, and I have been trying to push for that on his behalf. But in the process of trying to do this I fear I have become an annoyance, asking the same questions about pain medications each day from the same doctors. I also think that my overflow of tears on the days of surprises has discredited me in some ways. I think I am being seen as an emotional mess, but truthfully I have moved past that mode and am in my standard medical mom mode. We are no stranger to hospital stays, even long ones.

This morning was an emotional morning for me as I had a hard conversation with a doctor. He believes that Malachi’s prolonged pain isn’t a reaction to the increased tension but rather anxiety, and that feels that he is anxious because I am anxious. He said other children don’t need pain meds to the extent that Malachi does and that when they are in pain parents can distract them from the pain rather than give narcotics.

I want to give grace so I will assume that I misinterpreted his intentions with his comments, and that they weren’t meant to wound in the way that they did. At the end of the conversation I felt like his team saw me as a barrier to Malachi’s healing…which is probably one of the most hurtful things you could say to a medical mom. I also felt that he perceived a selfishness in me, not spending enough efforts entertaining my child away from his pain. Again, that one stung as I have been working so hard to preserve his mental health while we have been in here. That has been one of my top priorities and I am Malachi’s biggest cheerleader!

I recognize that I am fragile. And when someone is fragile they can quickly build narratives in their mind. But tonight I am feeling pretty raw, unseen, and discouraged.

There are so many layers to the trauma hospitals can produce in everyone involved. But in the end this isn’t about me, it is about supporting Malachi through something hard. So I am going to move past my hurt and continue to advocate and translate for my son.

Hospitals can be such dark places, full of discouragement from many different angles. It is a place where the devil runs freely in the minds of parents like me. It is very easy to lose focus on the Lord and His purposes.

Philippians 4:8 “Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable- if anything is excellent or praiseworthy- think about such things.”

In 2018 I was sitting in an ICU in Cincinnati with Levi and this verse was pressed on my heart. I got out a sheet of paper and a pencil and sketched out this idea for putting it on a large wall in our home. We had moved into our new home just 6 weeks before Levi’s birth and the walls felt like a blank canvas for me. But I knew that our living room would be the space that I would need to cover with the Word of God, as we spend many hard hours in that space. As soon as I got home from the ICU I tracked down some barn wood boards and some paint and got to work. We started adding pictures of things that were true, noble, right, pure, lovely, admirable, praiseworthy, and excellent.

Over the years the photos have spilled beyond the original barrier of our canvas. As the boys have grown we have replaced many of the photos, each on chosen specifically to remind us of the great things God has done in our family.

This experience will undoubtedly leave another wound and another jagged scar. Most hard things in life do. We can easily choose to point at that scar and use it to remember the negative moments from this battle. Or we can choose to point at that scar and use it as a beautiful tattoo to show others of the goodness of God at work in our lives.

It’s all about looking for the true, noble, right, pure, lovely, admirable, praiseworthy, excellent….it’s about looking for the attributes of God….the evidence that His goodness is still very hard at work.

Preaching to myself tonight as I wage a war with my wounded heart. But sometimes wrestling with the things of God is necessary to build the muscles of our faith.

Please keep our family in your prayers. For stamina and clearness of mind. Pray that Malachi’s health remains strong enough to continue with our surgery plan in a few weeks. Pray against complications that may arise between now and then. And continue to pray for Levi and Jake. Separating our family is so hard on each of us, but especially Levi.

Finally, Malachi will be in the same room for the next few weeks. If you would like to send him a note of encouragement here is the address to send it to:

Monroe Carell Jr. Children’s Hospital at Vanderbilt (Malachi Carroll, Room 8531) 2200 Children’s Way Nashville, TN 37232

Thank you for loving our boy and continuing to check on him.

Leah