We have officially been inpatient for 14 days now, with 10 more days until big surgery #3 (March 20). Malachi is up to 17 pounds of tension in his traction, and will hit his new target goal of 21 pounds on Tuesday morning. He will stay at 21 pounds until surgery, hoping to stretch out his spine, skin, and connective tissue in preparation for his full spinal fusion.

On my last update on Wednesday I shared that he was struggling with pain and still requiring PRN (as needed) pain meds. Thursday morning rolled around and it happened to be my birthday. I told Malachi that the only gift I wanted was a big Malachi smile, and it brought tears to my eyes when he gave me this treasured gift.

Bless his little heart, he spent the whole day smiling and giggling, working hard to make my day so special. Looking back, I should not have put that pressure on him. He was absolutely exhausted at the end of the day and fell asleep…for 19 straight hours. I got him to wake up for 3 hours and then he slept for another 13 hours. To go from giggly and smiling to this sleepy started to create a new anxiety in me.

Even a visit from the therapy dog didn’t perk him up. And he slept through his blood draws and weight additions.

I started having flashbacks of when he went into acute liver failure and we almost lost him after an emergency surgery a few years ago. His lethargy was incredibly similar, so I asked if they would draw labs and check his liver enzymes and blood counts. They graciously ordered the labs for me and everything came back in safe ranges.

After two sleepy days, today he has been a bit more like himself and he has not required any extra pain meds at all this weekend. His breathing is getting more junky and labored but it could be due to the increased weight pulling on his neck? He is so restricted positionally I worry about his ability to get enough air into his lungs and keep them clear.

Living in the hospital feels like the movie “Groundhog Day”, where each day he wakes up and things are the exact same as the morning before. Malachi’s doctors round at roughly the same time each day. His medication routines are identical each day. His visits from the respiratory therapist for breathing treatments and cough assist are also routine. Then in the in-betweens we cycle through his three different positions, trying to prevent bed sores from forming (and the one he has from getting any worse). Each position he has to be in requires a very strategic placement of pillows and postural devices to help the traction be the most effective. And there are still the normal tasks in between, like tube feeds and diaper changes. There isn’t really time for us to just simply rest…it feels like a full time job that doesn’t end, but just becomes one continual looooong day.

Again, a HUGE thank you to everyone that contributed to our family. We were able to purchase positioning pillow aids that have helped his breathing tremendously.

I am starting to get a little stir crazy and I imagine Malachi is too! We try to cycle through our entertainment options to keep us both distracted…toys and video games while in the wheelchair. Naps and music when he is side-lying. Movies when propped up in the bed. And every night he knocks out at least 2 hours of his audiobooks. He has already finished 5 large books!

Malachi is really enjoying all the opportunities to choose things. He has been really cute in that way, and I have all the time in the world to patiently work with him until we find the exact thing he wants to watch or do. I am so proud of him and the way he has been communicating with dozens of new people.

One of the highlights each day is getting FaceTime dad and Levi. We miss them so much. We have plans for a visit this week so please pray for health over Levi and Jake so we can make that happen.

We are seeing visible results of the traction, particularly with how tall Malachi is getting. If I felt comfortable showing you photos of his shirtless frame you would be absolutely blown away by the difference we are seeing in his rib cage and torso. The wheelchair company is coming by on Tuesday to get measurements for a new wheelchair as he is most definitely going to have outgrown this one when we complete the spinal fusion. I also need to order a new home chair that will keep his back in the proper alignment.

I have a lot of people asking how I am doing. I am in medical mom mode and just doing what needs to be done. I can’t afford to be selfish, even in my thoughts, so I choose to focus on the blessing I have been given to be the hands and feet of Jesus to Malachi 24/7 through this. God has made that task very easy for me, and it feels so right to pour myself out for him.

I am working hard at keeping my emotions in check and keeping a clear mind. It is really easy to slide into irrational and very hard to climb back out of that pit. The triggers for my PTSD in the hopsital run deeper than I even know, surprising me often. This week I kissed Malachi’s forehead and tasted salt on my lips, clearly from him getting worked up from pain and sweating. I instantly flashed back to moments of kissing Levi in the NICU, that same salt taste on my lips after and the sad reality that my children were hurting enough to sweat profusely. The helplessness that I often feel in this environment is so thick.

I ordered some DoorDash for my birthday and enjoyed a nice slice of cheesecake. I also got my hands on a memory foam camp pad, a legit pillow, and a real bath towel. So in hopsital terms I am living like royalty haha! Perspective is everything!

I shared this photo last week with you all and I have continued to look at it throughout the week, feeling like there is a powerful spiritual lesson that I needed to remember when looking at it.

Last night I was reading Romans and when I read this verse the Spirit pricked my heart…

Romans 5:3-5 “Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.”

I have watched my son go through something incredibly unnatural and painful. We have asked his body to bear a burden it was never meant to bear. And I have watched him struggle under the weight, each day compounding and increasing his suffering.

But after a day of increase Malachi starts to adjust to the change and his body starts to submit to the greater ask, for his good…something that would not have been possible without the suffering.

I have watched his suffering produce positive change this week and I have seen that the suffering serves a purpose.

And when you walk in confidence that suffering is producing something great within us it helps make that added weight seem a little more…well…tolerable.

Our suffering produces perseverance.

Perseverance produces character.

Character produces hope. And not a baseless, well wishing hope, but a confidence in Christ hope. So confident that we can REJOICE in our sufferings.

I haven’t crossed over that line yet. The “Count it all joy” line in the sand. I will get there eventually with this particular trial…but I can’t claim to be there quite yet. My heart still hurts so much for Malachi and knowing that more suffering is coming with another surgery still steals my focus.

But I am starting to see so many scriptural truths come to life. Earlier today as I sang worship songs with Malachi I looked at that metal contraption screwed into my son’s precious body and despised it as the source of suffering it is.

But then the Lord led me to Isaiah 61:3 “And provide for those who grieve in Zion- to bestow on them a crown of beauty instead of ashes, the oil of joy instead of mourning, and a garment of praise instead of a spirit of despair. They will be called oaks of righteousness, a planting of the Lord for the display of His splendor.”

These words were such a comfort to me this evening as I reflected on the fact that God gives us beauty for ashes and joy instead of mourning. This crown that is painfully attached to Malachi’s head right now will be removed and replaced with something beautiful…a functioning spine.

As we sang worship songs earlier I couldn’t help but smile, thinking about Paul and Silas sitting in prison doing the very same thing. I have joked with Jake about this room being a fancy prison cell (and the pit of despair from “The Princess Bride”), so the parallel made me chuckle. While the men were singing an earthquake shook the prisons the doors opened, and their chains came loose. They had the opportunity to escape that prison, but chose to stay. And as a result the jailer and his entire family came to know God.

Our time in the prison cells can sometimes feel wasted, but God is still certainly at work, accomplishing purposes only He can see. Sometimes we just have to sit back and praise Him through it.

Sincerely,

Leah