I write this blog for many reasons, but one of the primary ones is that it allows me (maybe ”forces” is the better word choice here) to process a lot of thoughts and emotions that I tend to stuff down out of my psyche. This week I have been avoiding processing a lot of things, so when I open the page to start typing I have to take a deep breath and break the walls I have built this week to separate the hard stuff from the everyday.

As you know, Malachi headed to the operating room this week for a bronchoscopy to look at his airway and lungs. I will do a quick summary for you of the findings…I try to include all the medical terminology and jargon in case other parents researching these terms need some insight for their own child.

Bad news #1- Prior to the procedure the pulmonologist suspected he was aspirating, and it was confirmed that he is silently aspirating his secretions. Aspirating essentially means that they are going down the wrong tube and finding their way into his lungs. Lungs are often not able to process the foreign bodies and infections can occur. Malachi’s cultures did in fact show that he has a current lung infection that is going to be treated with 14 days on amoxicillin. We are thinking that this may be one of the causes for the frequent random fevers he has been having.

This also revealed a new diagnosis through his CT scan called bronchiectasis, which is scarring of the lungs due to frequent aspiration. Malachi’s scarring is on the back side of his lungs, which makes sense due to the way he is often positioned in a slight recline.

Bad news #2- Malachi has a floppy trachea (called tracheomalacia). This may sound familiar as Levi also had this condition, but his has improved dramatically. Unfortunately Malachi’s is worsening as the years go by. When he breathes out he is having a 50% collapse in his upper airway.

Bad news #3- Malachi has bronchomalacia, so same concept but in his lungs. When he is breathing out the cartilage is flopping over the bronchi into the lungs by about 75%-80%, trapping anything that is finding its way into the lungs from being able to get out. So you and I can have a ”productive cough” and bring stuff out of our lungs when we are sick or congested. Malachi doesn’t have the ability to do that well. And then if he was successful at getting it out of the lungs it would struggle to get through the windpipe due to bad news #2.

The surgeon was able to clean his lungs while he was in there and test the samples, and Malachi’s breathing was EXCELLENT for the few days after the procedure. He even had an oxygen saturation of 100 post op at one point, which we haven’t seen for years.

So in summary, we know that foreign substances are getting into Malachi’s lungs and the chances of him getting them out are slim. So what do we do?

We treat on the assumption that he will have a lifetime full of infections and start preventative measures. Starting this week Malachi is on azithromycin (same meds as a Z pack) every Monday, Wednesday, and Friday for life. This is in addition to the 14 day antibiotic he started for the current infection. He will also be getting a shot that prevents against several strands of pneumonia.

Okay, so let’s go from medical jargon to mommy jargon.

Remember that switch I talked about last week? I superglued it into medical mom mode, trying to completely detach from the emotional side for the day. And I was successful…until I wasn’t haha.

When the time came to send Malachi back with the anesthesia team he was giggling and I was able to do the send off without shedding a tear. I kept my wits about me during the surgeon updates, and didn’t even think about crying through any of the parts that normally get me. I mean, we have done this 44(?) times now and have been through some really hard and really unknown outcome surgeries. A simple exploratory procedure like this one shouldn’t get me unraveled.

After the surgeon updated me I exhaled and sat down in a chair to wait for them to take me to recovery with Malachi. I watched the clock tick away and tick tick tick. Still no Malachi, and no updates. Aside from the surgeon updates no one else had given me updates on Malachi in the three hours since they took him from me and the procedure process from start to finish was estimated to be 1.5 hours (including prep and anesthesia). Typically I get a call when anesthesia and IV attempts are successful, when the surgeon starts and finishes, when Malachi leaves the operating room.

Three hours of silence.

I assumed he was in recovery since I had spoken with the surgeon. But as I processed the silence my imagination started wandering and I started to get a little panicky. After waiting a bit longer I couldn’t stand it any more and pushed the nurse call button. When she entered the room the emotion flood gates broke and I sobbed, trying to explain that I assumed this procedure would be like all the others and I would get updates and be able to join him in recovery as soon as possible.

She explained that due to Covid parents were no longer allowed in the recovery room, and this surprise piece of info made me panic even more. Malachi is not able to communicate verbally but I can read him like a book and figure out what his needs are based on his body language. The idea that he was back there potentially trying to convey something and no one could understand him tore my heart.

And then the mom guilt slipped into the picture. I had promised him he would get to listen to his favorite song the second he woke up. I had told him when he opened his eyes I would be by his side. I was mad at myself for making assumptions that this round would be just like the others.

I was also extremely disappointed in the hospital staff for not keeping me updated. I can’t help but wonder if Malachi was treated differently than other patients due to his differences. I don’t want to believe this is true, but I also fully believe that other parents would have been updated regularly had this been their first OR experience.

Malachi was finally wheeled back into the room and I was able to calm down. I snuggled him and then had to pop that switch right back into medical mom mode so I could get him out of there. Our day was delayed significantly and even though we arrived at our 7am scheduled time (for a 1.5 hour estimated procedure) we didn’t make it home until 4pm.

Malachi ran a high fever due to the lung intrusion but was back to his bubbly self after about 24 hours. The new medications are causing some pretty severe belly issues and creating lots of explosive crying from belly pain. I am also looking into the potential for more liver failure issues due to the new antibiotics being metabolized through the liver.

Little Levi had a very hard time with this procedure. As soon as he heard Malachi had to go to the hospital he burst out crying and physically clung to Malachi. The day before the procedure I heard him whispering to Malachi “Malachi, you should punch the doctor.”

As I put Levi to bed the night before he just sat silently with tears streaming down his face. His empathy for Malachi was so real in that moment and I spent some time snuggling Levi and praying with him for Malachi.

He was overjoyed to finally have Malachi back home. Their love for one another is just so special.

Ugh so much heavy stuff here. Let me take a commercial break and talk about some fun things from the week before we jump back to the hard things.

We spent the majority of our week enjoying the sunshine and getting some fresh air. The boys have been enjoying lots of rides on the little truck and playing with friends. Malachi has not been 100% due to all the medication changes, and it is weeks like this one that I am extra grateful for the ability to give him little bursts of fun but still remain close to home base for our medical needs.

Alright, back to the hard stuff.

It is incredibly rare for my hands to be empty. I typically have Malachi in them, and when he is not being held I am busy chasing Levi. So being in a hospital room for 3 hours with empty hands really messed with me. I struggle with anxiety (I wonder why haha) and have a tendency to self mutilate without realizing it by picking at my fingernails and the skin around them. The night before surgeries I always clip off all fingernails just in case and pack extra chapstick to keep me from biting my lip.

Passing that time is very, very hard to do. I used to think I could read a book or read the Bible but truthfully I am unable to focus well on anything. So I just have to let my thoughts run and pray that the time passes quickly. I spend a lot of time praying, but not in a consistent manner- more like a sporadic way when the anxiety starts to drown me.

It is hard on days like this one to even know what to pray for. I have a t-shirt that reads “Dear Jesus” then lists the whole alphabet and ends with ”Amen” and I truly feel like this is my prayer on surgery days. I don’t even know where to begin.

As I let my mind wander I couldn’t help but process that the rest of Malachi’s life will continue to be full of these procedures, waits, and bad news. Malachi’s body will only continue to decline without a miracle from God.

The amount of potential suffering that lies in wait for my son takes my breath away.

I found myself pouring my heart out to God and praying over Malachi’s death, and begging God that Malachi’s entrance into heaven would not be preceded by suffering. I love Malachi with all of my heart, and I treasure every minute, hour, and day I get to spend with him. But my mind wanders often to the potential ”lasts”.

I know I share this verse often, but this week its words soothe my heart.

“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.” 2 Corinthians 4:16-18

Those initial words, ”Do not lose heart”. I have been evaluating what that process looks and feels like, and I have realized that this is a temptation often in my life, and especially on surgery days. It is allowing discouragement to take my eyes off of God and giving them the opportunity (and excuse) to focus on current reality.

When I keep reading that verse I can’t help but think about Malachi’s frail, scar covered body that continues to fail him over and over again. The medical community has created such amazing technology to preserve life, but it also allows a firsthand look at the ”wasting away” that this verse refers to. As Malachi ages and his medical conditions progress these words pop off the page at me. And it is easy to allow my focus to rest on the doom of those words and stop there. But we have to keep reading.

”Yet inwardly we are being renewed day by day.”

So what does that process look like? It means that our bodies are designed to fail us. Malachi’s body will fail, my body will fail, and your body will fail. No one is exempt from this process. The words of this verse remind me that we are daily being renewed, and sustained, by God because He has more work for us to do on earth.

God will continue to renew Malachi day by day because He has more God honoring work for Malachi to accomplish. And when I fix my eyes on the unseen I remember that even the suffering that we may encounter, or our “light and momentary troubles” are being used by God in ways we cannot see.

I don’t know what lies ahead for Malachi. But I do know that regardless of the potential suffering leading up to it, the day that Malachi runs into the arms of Jesus will be the best day of his life. And that hope that I have in Christ keeps me choosing joy in spite of the hard days.

Please pray for our family as we enter new territory. Transitions into new medical routines is always challenging. We will be starting a new style of breathing treatment daily as well as trying to introduce several new medications into his system. That many changes can trigger his seizures and cause a lot of discomfort, as we are already starting to witness. Please pray that his body adjust quickly and that the benefits outweigh the complications.

Much love,

Leah