We are home! It has been a journey to get here but we are feeling so blessed to be back together.

I left off last week’s entry with us being in a private room in the ICU. Late Sunday we were transferred to the main pediatric floor of the hospital and by Monday evening we were discharged. Malachi’s liver enzyme levels are continuing to drop by he is still technically in liver failure. When he was discharged we were at 930 and on Friday he had some bloodwork done and his level was at 237. Our goal is to get back under 54 but we are slowly making progress towards that goal.

Malachi had a morning visit from Spider-Man and thought that was such a special thing He knows it is really respiratory therapist Ryan, but to him he is a superhero anyway so the mask fits!

Until his liver completely heals and recuperates we are stuck on a seizure medication regiment that isn’t ideal. It is frustratingly difficult to find medications that don’t route through the liver. Malachi has intractable epilepsy (uncontrolled) and has multiple seizure types (he is up to 4). Each medication he takes helps control a different type of seizure that he has. We had to stop the medication that helps his tonic seizures (physical jerking ones) so we are seeing a pretty big increase in those right now and there isn’t anything we can do about it. We met with the epileptologist and decided it was best to choose liver health over seizure control for now.

Malachi is still very weak and pale as he is still healing from a pretty rough two weeks. It was a hidden blessing in disguise for us to have a quiet place for just he and I to go upon discharge. He had a few bad seizure days and being able to completely focus on him those days was vital. They removed the staples from his surgery incision right before discharge and it is healing up nicely.

Prior to all these emergencies Malachi and I had planned a trip to Nashville for just the two of us to meet with some of his surgeons. I had talked up the trip BIG time, promising him a movie at the theater, a trip to the zoo, and a night at the Rainforest Cafe. He was sincerely looking forward to the trip and activities and was upset that we didn’t do it. We will travel there next week for those appointments but it will be a condensed trip as Jake is now having to take time off work for those days.

On Thursday he and I went to a matinee at the local theater to watch the movie I had promised him. He was completely captivated and LOVED it. He can’t see well enough to follow a movie so I narrate it all to him and he was on pins and needles. We talked about it after and I asked him if he wanted to see it again with his dad and he signed YES YES YES.

On Friday he had some bloodwork done after his appointments at the hospital and I thought it would be a nice treat to stop by the zoo to visit his jaguar friend. Most times that we go the jaguar comes up to the glass so we have created a narrative that he and the jaguar are best friends and he gets excited to see Malachi. But unfortunately the last time we went the jaguar was sleeping, and Malachi cried and cried and cried. He was inconsolable. So I prepped his little 8 year old heart for the disappointment should the jaguar be napping again but praise the Lord he was wide awake and came to the glass by Malachi. He was giggling and so joyful to see his jaguar friend again.

After two weeks of abnormal and painful things it was so refreshing to give him a glimpse at fun and normal. He even got some pink cotton candy!

Staying away from Levi and Jake was so so hard for all of us. We reunited this weekend and it was as special as we dreamed it would be. I have hugged Levi at least 100 times.

Levi is completely back to normal and seems to have grown taller. Jake is still dealing with the after effects of his cold but relatively back to normal.

Our world is calm yet again and being able to finally release this breath I have been holding through all of this has been wonderful. There is an adrenaline that takes over during hospital emergencies and the “crash” from it doesn’t usually hit until a week or so after we come home.

So let’s talk about hospital life. Before having medical kids I had a picture of what life in the hospital looked like, and the real picture definitely doesn’t match that picture. I thought it may be helpful for me to explain it a bit to you all so you can better understand your friends who are dealing with hospital stays.

First of all, life in the hospital is bizarre. There isn’t a better word for it. Time changes in an inexplicable way.

Nursing shifts change at 6:30 in the morning and evening. And doctor rounds are usually 9-11 in the morning and evening. So you can always rely on those. But then there are the other visits from specialists. After things grew complicated we ended up with many of Malachi’s specialists on board. So in addition to the regular rounding and shift changes, Malachi would be visited and examined by the neurosurgeon, the epileptologist, the neurologist, the GI doctor, nutritionist, and surgery. But what adds to the chaos is that many of them send their nurse practitioner and/or resident doctor in as well before their visit to scope things out and report a summary to them before they visit. So all day long there is a steady stream of doctors floating in and out.

Add into that the nurses doing vitals checks (every hour in the ICU, every 4 hours on the floor), administering medications which was alllll the time for Malachi, housekeeping, and a few other random things.

There is no differentiation between night and day in the hospital bubble so all the days start to blur together.

The specialists this round started their visits around 6am. And each time they each want to physically examine Malachi whether he is asleep or not which you can imagine is not ideal.

There is something just so uncomfortable about waking up from a dead sleep surrounded by a group of medical professionals. So once that first rounding person wakes me up I stay up for the rest of the day. I was actually thankful for the masks this go around as it made me less self conscious about my morning breath! I set some goals for my sanity this time and tried to get a shower at least every other day, especially when Malachi became generous with his bodily fluids. But these required me to leave Malachi out of sight for a few minutes so they were as fast as humanly possible.

On that note, it is for the reasons listed above that we prefer to not have visitors during our hospital stays. It requires me leaving the bedside and taking my attention away from Malachi to go meet someone, even to bring them to the room pre-Covid. It also runs the risks of us missing a specialist that is stopping by. It is also the reason that phone calls are usually very short and concise as they are often interrupted by someone new entering the room.

A hospital room typically has a bed for the patient and a chair. But as far as cleanliness you know that blood, fecal matters, and other bodily fluids have covered the floor at some point and likely not been thoroughly cleaned up. I NEVER remove my shoes in a hospital stay unless I am crawling into bed with Malachi. And I also glove up and thoroughly clean any room we are assigned to as much as possible before setting anything down. Rooms are obviously designed for the patient so places for personal belongings are rare. I have a hospital backpack that I try to cram all of our supplies into but do everything in my power to not bring more than needed in to the room. In the first ICU room we were in there wasn’t even enough space for Malachi’s wheelchair so I had to take it down to the car. You learn to survive on no more than 3 outfits and a toothbrush.

There is a room with a refrigerator for all of the patients families on that floor and PICU to use but you can imagine how nasty that fridge can get. When you get discharged , cleaning out the fridge falls pretty low on the priorities list so the moldy food in there is the real deal. There is also the concept that many of the families using these spaces have children suffering from very contagious diseases and touching the same surfaces just doesn’t seem smart. So I avoid those as much as possible and wash my hands at least 50 times a day.

To pass the time there is a 0% chance that I will have the mental capacity to read a book or do a crossword puzzle- things people assume I knock out while inpatient. My attention is always 100% focused to watching Malachi and being very present for him. We watched at least 100 movies (maybe a slight exaggeration but pretty darn close) this time around, all of Malachi’s favorites over and over again at his bidding. Whatever we could do to take his mind off of things.

It feels like a weird psychological experiment sometimes, like how long can you go without breaking down. I did decent this time around but had two days of sobbing (oxy overdose day and liver failure day) but those felt warranted. I started to feel my sanity slip near the end of our stay when the room they moved us to had a shower that wouldn’t drain and hadn’t been cleaned from the previous person’s stay…I could totally paint you a word picture right now but I will be kind and not. As I was discussing the issue with the nurse I could tell that it wasn’t a priority to them and the idea of not being able to even get clean set my into a bit of a panic. At that moment I had three of Malachi’s bodily fluids on my and I was desperate to change but didn’t want to waste an outfit on a dirty body.

At that very moment when I felt like I was about to start crying a roach crawled across Malachi’s bed and made a beeline for the nurse. She shrieked and I knew it was the piece of evidence we needed to justify a room change. We were in a fresh new room within the hour and I had a glorious 2 minute shower and some clean clothes and the weight on my chest vanished.

It is all about survival mode, physically for Malachi and mentally for me. I am a poster child control freak and nothing strips away control more than the hospital.

I spend a lot of time listening to praise and worship music and letting the words sink deep into my soul. I desire so desperately to sing aloud but it isn’t respectful to the other patients healing around us. When Malachi was in the ICU the doorknob turning would set him into a seizure; knowing that I could possibly mess with another patient that way with singing is enough to silence me.

Monday evening as we drove towards the guest house I let the bottled up praises fly free and thought I might lose my voice. This morning at church we sang one song that the Spirit had put on my heart the entire hospital stay called “The Goodness of God”. I felt the emotions coming on but stifled them decently through verse one. Then verse 2 hit:

“I love your voice, you have led me through the fire. In the darkest night you are close like no other. I’ve known you as a Father and I’ve known you as a friend, and I have lived in the goodness of God.”

Ugh. Cue the ugly cry.

Then there is the chorus and bridge:

”And all my life you have been faithful. And all my life you have been so, so good. With every breath that I am able, oh I will sing of the goodness of God.”

”Cause your goodness is running after, it’s running after me. With my life laid down I’m surrendered now, I give you everything. Cause your goodness is running after, it’s running after me.”

Here is a link to the song if you need a worship session today: https://youtu.be/n0FBb6hnwTo

I reflected on the idea of God leading us through the fire yet again these last few weeks. And I realized that many people have that concept all wrong. They hear that and wonder why a God so good would lead us into a fire.

But the reality is that we ALL find ourselves in the fires of life, whether we know God or not. Without the Lord we desperately search on our own for the way out. But when you know God and you enter that fire you learn to look for Him, and cling to Him as He leads you safely out. He literally leads us through the fire.

And oh, His faithfulness is so reliable and comforting.

As Jake and I were driving today we talked about how our children’s challenges have dramatically impacted our faith. We literally have nothing else to cling to in our chaos but God. Walking through life with these precious children of mine has made my faith so…well…easy. I no longer doubt the goodness of God as I see it play out time and time again in the worst moments of my life. What a gift we have been given, and oh how we treasure it.

But getting to this point has required a heart of surrender. We no longer even try to tackle it without him. When I even feel the flames of life getting close I start calling out to Him so I have His hand to grasp when the flames engulf us.

What a beautiful and difficult journey these last 8 years have been.

The hardest part of our story is that while there is a definitive beginning there is no middle and no end. Each trial and challenge is simply a chapter. So our testimony is a fluid one, ever changing and evolving.

But this also means that I am frequently bracing for impact for the next hard thing to hit. And that is no way to live life.

So we cherish the in-between. These weeks, months, years of our normal. We make the most of them knowing that one day there is another chapter that has already been authored by God that lies up ahead.

On that note, it wasn’t until our appointments this week that I realized how scary Malachi’s condition was for medical professionals. They masked their fear oddly well from me, but confided in me at our appointments that they were very fearful that Malachi was going to pass away. One even told me that he woke up several times throughout the weekend feeling pressed to pray over Malachi. Another told me they had only seen liver enzymes that high in a child one other time. Another explained that he had seen several epileptic children pass away from liver failure just like Malachi’s.

I am so thankful that God’s goodness keeps running after our family.

Lamentations 3:22-23 “The steadfast love of the Lord never ceases; His mercies never come to an end; they are new every morning; great is your faithfulness.”

Much love,

Leah