Ahh so many changes and updates for this update. I don’t quite know where to begin. Malachi is still scheduled for his full spinal fusion on Thursday morning. This surgery will be several hours long and they will be removing his halo while he is in the operating room.

We are eager and ready for surgery day. He is up to 25 pounds of traction, although it feels like much more. It is so much weight it is actually sliding his body on the bed. We put him to bed in one spot and overnight he slides several inches up the bed, being pulled by the head from his weights. Just process that for a minute. Not being negative here, just being transparently honest and sharing our real with you for a minute. Sometimes when I type I find myself unknowingly trying to protect you all from the harsh stings of our trial.

Alright, well let’s start with the updates that I put in the “inconvenient” category.

On Thursday afternoon they decided to move us to a different pod in the hospital. They presented this as an exciting thing, but I immediately felt my stomach drop. By switching pods we were losing our continuity of care. We have several “primary” nurses, meaning that anytime they are on shift they are assigned to Malachi. He has been working so hard to communicate with them using his signs, and they finally were starting to understand his non-verbal cues. Starting over with a fresh staff and just a few days away from a surgery was pretty discouraging.

I can’t imagine how discouraging it was for Malachi, feeling like all the hard work he has been doing to build those relationships was a wasted effort. Again, the psychological aspect of this decision was ignored. It sometimes feels like there is an active attempt to break his spirit, although I want to believe this isn’t intentional.

They assured us that this was in his best interest as the nurses on the new pod had more experience with traction, but if that were truly the priority they would have moved him over there 2.5 weeks ago, not 6 days before his traction is complete. I advocating and explained my hesitations but they fell on deaf ears and stated that this was a decision made by management. I really wish the patient’s needs were the priority, not just logistical comfort for management and schedulers.

We got settled and unpacked in our new room. When bedtime came I unrolled my sleeping pad to make up my new bed on the couch and a bed bug crawled out of the rolled up pad. I am not sure if it came from the old room or the new room but it definitely didn’t come from our home. And the camping pad was a birthday present to myself last week and shipped vacuum sealed from Amazon.

Very long story short…I was able to catch the bed bug in a ziplock and hospital policy kicked in and they double bagged up all of our items, including all positioning pillows-wheelchair-breathing machines- and moved just our bodies into a new room (3rd room in 6 hours). The next morning they came in to present “options”.

Option #1 was to take our items home in the bags they placed them in. This was not even reasonable as we aren’t going home for a few more weeks, and there are things we HAVE to have, like Malachi’s wheelchair. Not to mention the fact that bagging bed bugs does not kill them. So we would be taking potentially infected items into our home…to deal with post op….after a traumatic hospital stay and 3 (now 4 but more on that in a sec) surgeries.

Option #2 was to treat our items with high heat in the basement. I am trusting that this is actually what they did but if I am being honest I have lost a lot of confidence in the ethics and policies of this hospital. We slowly received our items back over the next day. My new camping pad couldn’t be treated so I made the decision to throw it away. And I will be sleeping in a chair for the rest of our stay. There are already new patients in the contaminated rooms we left.

Now let’s transition to the “significant” update. As you can imagine, Malachi’s neck has been stretched an alarming amount through this process. He has been in pain since the weight increase Thursday with high blood pressures and high heart rate. We have needed to rely on narcotics again to keep him comfortable.

When the orthopedic resident rounded I asked him if this was the typical stretch and he said he would send a photo to the surgeon to make sure there weren’t any concerns. They came back a few hours later and decided to take him down for x-rays to verify things were still good. Malachi has to sit in a modified adult chair so he can stay on traction for these transports.

Side note- Levi and Jake visited this weekend and Levi made my heart smile in so many ways. When Malachi got rigged up into his chair Levi said “Ooooh Malachi I am SO JEALOUS of you right now.” I asked him why he was jealous and he said, “Because he gets to sit in a cool, fancy chair and I don’t! Malachi, I am just so jealous. You are so lucky!” Which made Malachi put on his proud face and absolutely melted my heart. Look at our little Levi, showing us wildflowers in this parched valley.

The imaging came back and showed that Malachi’s shunt tubing has broken. This is a really big deal, but I will have to take a second to explain why.

Malachi was born without a heartbeat at 24 weeks gestation and required 15 minutes of CPR at birth. The oxygen deprivation caused his brain to bleed and clog the ventricles in the inside of his brain. Spinal fluid could get into those cavities inside of his brain but not get out, causing hydrocephalus. When he was a few months old he had a brain surgery to place a device under his scalp called a VP shunt. This device has two catheters, or “straws”- a short one that goes through the skull and into his ventricles, and a long one (like 5 ft long) that runs from the VP shunt all the way down his body and is coiled up in his belly. This takes all the spinal fluid from his brain that can’t get out and re-routes it int his stomach cavity where it can be absorbed.

Shunt malfunctions happen often for most VP shunt kids. When they do it is typically an emergency brain surgery to repair the issue as the shunt is performing a very important job. If the fluid is not rerouted and builds up it can be a fatal. Because of this, we are OFTEN checked for shunt malfunctions. Anytime Malachi has to be taken to the ER for vomiting or lethargy this is one of the first things they check through imaging.

So Malachi’s shunt device IS working but the long tubing has become disconnected. They are telling me that they have imaging on file that shows this has been broken for 6 years. But that is hard for my brain to accept as we have had MRIs, multiple CT scans, and dozens of x-rays in the last several years and no radiologist or neurosurgeon has spotted it. I have spent the last day gathering all of the reports and imaging from his CT scans and x-rays from the last several years to see if this was noted when they were specifically doing the imaging to look at his shunt.

Some of the biggest indications of shunt malfunctions are headaches, lethargy, vomiting, and several others. It is hard to confidently tell with Malachi that his lethargy is shunt specific. And hard to determine if he has headaches consistently.

So we are still investigating all of this and trying to figure out the best course of action for Malachi. He will need to have another surgery to replace the broken tubing. We are trying to decide if this is an emergency need, if this can be paired with Thursdays surgery, or if this can wait until we get back from and try again in a month or so.

There are lots of other minor updates but they feel so unimportant right now.

Jake and Levi came down Thursday night and it was such a bright light getting to see them!

The amazing nurse practitioner even helped us take a family field trip down to the koi pond!

Jake and I had formed a plan when we were in our original room to switch places for one night, me going home with Levi and Jake staying the night with Malachi. We planned for him to learn how to take care of Malachi all day Friday and then we would leave Friday afternoon. We also made this plan based on his primary nurses being present and helping Jake, since they knew how to properly position Malachi. Now we had all new staff and limited comfort items to work with. With the bed bug incident I didn’t have any of his positioning pillows or even his chair to help teach Jake how to position him comfortably.

I was exceptionally discouraged and just told Jake that we would need to abandon our plan. We had already told Levi about the plan and here we were having to disappoint him as well. I got emotional talking to Levi about it and he just came and hugged me tightly, offering such grace about the change in plans. Jake felt confident though and so we worked all day Friday getting everyone on the same page and Levi and I made the drive home around midnight.

Spending time with him was so special. He kept bursting out with giggles, just so happy to have time with mom. We had so many good conversations about him, Malachi, and God’s plan. We acknowledged the hard. We cried. We laughed. We slept in the same bed.

The next morning I was able to go to our kids soccer ministry league, as it was the final game and medal ceremony. It was so precious getting to see those kids again! Their faces lighting up when they walked in and saw me was a gift. This year we had 122 players sign up, and I have been feeling like I let them down.

Levi and I wrapped up the league Saturday afternoon and headed back to Nashville. We ate a quick dinner as a family and Jake and Levi made the trip back home. Levi sobs every time he has to leave the hospital and it breaks my heart. I asked him when he and I left why he was crying and he said through his sobs “I just don’t want to leave Malachi.” He loves his brother so much.

Jake and Malachi had an uneventful day together and Malachi enjoyed the change of pace. Jake was impressed by how much Malachi likes to read books- he has finished several books series while we have been here and they are his first choice of entertainment these days.

It definitely felt odd being home without Malachi. I was in a known environment but not having everyone home with me made it feel empty. I did enjoy a consistently hot shower though and having access to anything I could think of that I needed. And it felt amazing to sleep in a bed uninterrupted for a few hours!

I am so thankful for my husband. He sees the yoke I am carrying and gladly straps himself in to help lighten the load. We work together, side by side, putting aside our needs to carry our children through heavy things. That kind of selfless love is a treasure, and being Kingdom minded instead of earthly minded has been the driving force for our relationship over the last 12 years.

While we have been here we have also been battling small fires in the other medically complex situations in our world. This week Levi lost his secondary insurance from the state and he doesn’t qualify for the same waiver program we were able to get Malachi on for medically complex children. In addition to airway needs and 31+ surgeries, Levi regularly sees specialists for his cerebral palsy, epilepsy, vision loss, a g-tube that requires monthly supplies, and several prescription meds. Just this week Cincinnati Children’s called to schedule Levi’s next surgery for June 5th. Removing his secondary insurance is devastating for our family. The state has done away with giving complex kids secondary insurance for presumptive disability and now only looks at income, and Jake as a high school math teacher makes too much money to qualify. It just feels like too much right now and I am so, so tired.

Personally speaking, I have become a bit dulled. I can feel the fight in me wavering. Like when you tread waves for such a long period of time that you just want to stop for a minute and let yourself sink to the bottom to feel release from the exertion. But my arms are holding a child above those waves so sinking just isn’t an option. But functioning in my own power is also not an option…it is an impossibility. I have no power left to give.

“He gives strength to the weary and increases the power of the weak. But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 40:29,30

I keep repeating this verse over and over again, as it feels like it the perfect verse for the mental space I am in. It fills me with hope, knowing that when I start to sink the Lord’s hands carry me back up to the surface. I don’t have to be strong. God’s strength is enough. It isn’t a back up plan for when my strength doesn’t cut it….it is the ONLY strength that can be relied on.

Too often I find myself using God’s promises as my back-up plan instead of my primary one.

Seasons like this one humble me quickly and remind me that my illusion of control is never enough. It is a house of cards.

My faith isn’t based on seeing God working. Faith is believing He is always working, even when I can’t find the evidence when I hunt for it. Those moments where we can tangibly point at the evidence are such a blessing but not a certainty when you are walking with the Lord. But I am selfishly praying that this is an evidence week for our family. That we can be encouraged by SEEING the good that God has been working through our hard.

This week is a big week for Malachi! We still have a lot of things to navigate and need to get some answers and plans established for the week. Please lift up his body, heart, and brain in your prayers this week. And that he continues to handle things like the superhero he is.

And please pray for fruitful, seasoned with grace conversations to continue with all the providers on his case. Pray that God takes all my word vomit and translates it before it hits the ears of his providers to we can all be the best teammates for Malachi.

Blessings,

Leah