Dwell

Sometimes I struggle coming up with a first sentence in my entries. The first sentence always seems to set the tone for the rest of the blog entry and this week I find myself wavering between lots of emotions. I don’t know how to start an entry and convey that we aren’t doing good, we aren’t doing bad, we are simply surviving in just one sentence.

The truth is that life has been incredibly hard lately. Yes, we are through Covid but we are still so far off track from all of the drama prior to that round of sickness. We are so thankful to be done with sickness and emergencies, but I still long for a baseline so I can get my bearings again.

Malachi’s seizures continue to be a daily battle. They are lasting for several minutes and he is having at least 6-8 a day. Most nights this week he slept just 3 hours and his body and mind are tired. We met with his epileptologist this week and I had to fight back tears, asking him to please please please help us find some relief for his body and brain. We had found such a great combination of seizure control meds prior to his liver failure. Being back at step 1 for control is so discouraging.

We have started a new regiment as we struggle to get some of his old meds back on board. Right now Malachi is on 4 different seizure medications twice a day. The medications cause his personality to disappear a bit and he is lethargic and sleepy. When he does fall asleep during the day he wakes up with massive seizures and vomiting.

We are just in a very hard season of life right now and I find myself feeling very ill equipped. Watching suffering never gets easy.

Malachi’s bloodwork shows that his liver enzymes are in a safe place and we are grateful for that! We have started a wean to get rid of one of his liver medications and we are hoping that helps clear up the intestinal issues he has been dealing with since his surgery in July.

Even through his exhaustion and mental fogginess Malachi continues to give 100% at horse therapy. Seeing that big smile was the highlight of my week.

Both boys absolutely love animals. A friend of ours owns a farm down the road and invited us over to play with their puppies before they go to their new owners, so of course we accepted and I took the boys over for some puppy cuddles.

We also got to feed the chickens and check for eggs. I don’t have many photos of Malachi as he is getting bigger and requiring both of my hands to support him and keep him safe.

Levi has been a mix of sweet and sour this week. I am told that comes with this age, but that doesn’t really make me feel any better about it haha.

There are times when he is kind and so sweet. We have been spending time talking about manners and kind words and hearing him use words like ”thoughtful” and ”rude” makes me smile.

And then there are the difficult times. The temper tantrums that are just now starting to frequent our home. The bad decisions and the consequences that follow. Parenting well and discipline requires a consistency that I am not always to provide when my arms are filled with a seizing Malachi.

He has been asking every night to play a game and loves to sit around the kitchen table as a family. He is so inclusive of Malachi, even asking for us to order Malachi his own mac and cheese at a restaurant today.

Psalm 91:1-12

“One who dwells in the shelter of the Most High will lodge in the shadow of the Almighty. I will say to the Lord, ’My refuge and my fortress, my God in whom I trust!’ For it is He who rescues you from the net of the trapper and from the deadly plague. He will cover you with His pinons, and under His wings you may take refuge; His faithfulness is a shield and wall. You will not be afraid of the terror by night, or the arrow that flies by day; of the plague that stalks in darkness, or of the destruction that devastates at noon. A thousand may fall at your side and ten thousand at your right hand, but it shall not approach you. You will only look on with your eyes and see the retaliation against the wicked. For you have made the Lord, my refuge, the Most High, your dwelling place. No evil will happen to you, nor will any plague come near your tent. For He will give His angels orders concerning you, to protect you in all your ways. On their hands they will lift you up, so that you do not strike your foot against a stone.

I bolded several thoughts that the Spirit pressed on my heart as I read this scripture and I would like to share those with you.

Dwells”. This word is one that has been placed on my heart so many times this week. How often do we play the back-and-forth game with God, leaning in when times are hard by leaning away when we feel like we have everything under control. There is a difference between speaking to God and dwelling with God. Dwelling is a long term rest in His presence. It isn’t a quick refill and then head back out. It is taking time to lean in close and rest in His embrace.

Rescues you from the net of the trapper and from the deadly plague.” Y’all, this one hit me hard. Sometimes we find ourselves in the net of the trapper and sometimes we get the deadly plagues. We are not exempt from attacks from the devil. You WILL end up in his net. We have to stop being surprised when the trials in life come- learn to expect them and spend the easier days building up your faith for the hard stuff of life.

This week we were talking about our puppies upcoming surgery to be neutered. Levi listened intently as Jake and I talked to one another and then he chimed in with ”The puppies have to do hard things?” This is a phrase we use often in our home, particularly around medical procedures and uncomfortable things. I am constantly repeating a motto of sorts ”sometimes in life we have to do hard things. And you CAN DO hard things.” No one is exempt from the hard things of life. Sometimes we need to be rescued, and what a faith building moment those rescues can be!

Under His wings you may take refuge.” Sometimes I get so focused on God swooping down to rescue me like we just talked about that I forget that the responsibility to nestle under the wings of God also lies on our shoulders. God won’t hold you prisoner under His wings, it has to be our choice to remain there and to take refuge. Choosing refuge is a decision, not a mandate from God. He offers those spots under His wings to give us moments of peace and protected respite.

You will not be afraid of the terror by night, or the arrow that flies by day; of the plague that stalks in darkness” When I read this verse it knocked the wind out of me. This is the struggle I have been in this week. My mind and heart have been at war each evening as I lay my head on the pillow, spinning as I process Malachi’s future. It terrifies me to think about losing him. I have found myself praying heavily over his death this week, whenever that time may come, that God protects Malachi from suffering. The thought of the future has been keeping my mind up at night, leaving me weakened for the arrows that fly by day. The constant arrows…the seizures, the medical mishaps, the “hard” stuff of our lives. This verse says that we will not be afraid of these things if we have made the Lord our dwelling place. When these thoughts at night overtake me and stalk my brain it means that I am not dwelling with the Lord. I have strayed and I need to find my way back under His wing.

For He will give His angels orders concerning you, to protect you in all your ways. On their hands they will lift you up, so that you do not strike your foot against a stone.” This verse is such a beautiful verse. The mental image it creates for me is so special, especially considering Malachi is unable to walk. I have this scripture in each of the boy’s bedrooms as a reminder to pray it over them. Knowing that there is a host of angels surrounding us and waiting for those moments when we trip so they can catch us is so special.

I can feel in my heart and soul that I have stepped a bit too far away from the protection of God. I have moments of dwelling, but they have been fleeting and just enough to refill that cup just slightly. This week I will be working to settle in under those wings again and thank Him for His faithfulness in our lives.

Malachi is ready for bed and that is a cue I would hate to ignore! We both need some rest. But I am so thankful for the many ways you lift our family up in prayer.

Much love,

Leah

Pride the Spiritual Cancer

This week we re-entered the world, very weak and shell shocked but so happy. Our endurance for everything has been challenged and it will take some time for us to return to normal.

Jake went back to work on Tuesday and managed well through his classes. By Thursday he was back to coaching soccer and trying a few things outside of work hours. Someone on the sidelines took this photo at the game and I couldn’t help but turn it into a meme.

The boys returned to horse therapy on Monday and they were thrilled to have human interaction with others. They worked very hard at therapy and both fell asleep on the way home. Malachi was the most excited about the barn- he hasn’t been to horse therapy since before his emergency surgery in July.

I have had a hard time with my energy level. At the beginning of the week I tried to jump back into things but my body reminded me that it needs some time to recuperate. I was hit with some pretty big waves of fatigue and some tightness with my breathing. I also broke out in another rash that we are thinking is poison ivy so I went back to the doctor this weekend to get another steroid to help with inflammation in my lungs and maybe relieve some of my allergic reaction to the poison.

But overall we are healthy and happy! And the boys got some much needed haircuts.

Random side-note: Levi has started a rock collection.

Malachi has an appointment with the epileptologist this week and I am so eager to talk to him. His seizures have been so aggressive lately and clearly this new medication regiment he is on is not working. In addition, the med combination he is on includes a vitamin for his liver that causes stomach upset. Today starts his 9th week straight of diarrhea. I am really hoping his bloodwork will be good enough for us to consider eliminating and replacing some medications.

He has struggled the most this week with energy. I grew worried about him mid-week as his color was off. I could tell he just felt a little unwell and his sleeping has been very disjointed, like his body can’t relax. He seemed to improve as the week went on but I will feel a lot more comfortable after some bloodwork on Tuesday.

Malachi’s g-tube popped sometime this morning, which normally would send us into a flurry but after the weeks we have had we didn’t even finch and got a new one in easily. It is so interesting how perspectives can change. “Worst case scenarios” tend to shift a couple levels down when hard things hit.

Levi is still a bundle of energy and a flurry of words and questions. He has been re-telling the story of the night “Daddy passed out in the kitchen” to people and hearing his take on it all makes me laugh. The details he retained from the night are impressive for a three year old.

I didn’t have the clarity of mind to share much of the funny moments with you from the last few weeks but we had several. They were such precious jewels to me as they made me smile through my tears.

On the first really bad evening I was trying to keep both kids hydrated with Pedialyte. It was 3:45am and I was up with two feverish boys. I poured a glass of blue Pedialtye to send into Malachi’s gtube and Levi asked for a glass. I poured some for him in a 2 ounce medicine tube and carried it over to him on the couch. As I was getting ready to feed Malachi Levi said ”Momma, momma! We having a party!” and then clinked his little medicine tube of Pedialyte against Malachi’s cup before taking a big drink. His joy over our “party” on the couch made me smile. He was so incredibly sick in that moment but found a silver lining.

A few nights later Levi started to get very loopy from sickness and extra dramatic. He would burst out crying and when I asked him what was wrong he would say ”My Chi Chi is sick” and start sobbing. Even in his discomfort he was concerned about his brother. So sweet.

Another night he was on the verge of sleep and gasped loud enough for me to jump. He sat bolt upright and said “MOMMA!! There is a HAIR on my leg!!!” And showed me a single hair (in the hundreds) that he had on his leg. I acknowledged his leg hair which seemed to satisfy him, so he closed his eyes and went to sleep.

I think we were all a little loopy by that point.

On Wednesday I was able to meet with my youth group for the first time in several weeks, and oh how refreshing it was to reconnect with them. I shared with them the spiritual struggles we have gone through in each branch of our recent challenges, and sometimes being honest and transparent about our moments of weakness can provide such guidance for others. When I prepare lessons for them I try to treat the opportunities as ”training moments”, hoping I can help strengthen their faith so that when they face challenges in the future they will have already learned how to combat them.

I also try to be extremely transparent about the different ways the devil attacks, and specifically on the topic of pride. I read a chapter from C.S. Lewis this week from the book ”Mere Christianity” and it struck my heart in a much needed way and I wanted to share it with you all. The chapter is several pages long so I chose a few paragraphs to share with you instead of its entirety, but I encourage you to google one of the paragraphs and read the whole chapter online as it is a powerful one.

”I now come to that part of Christian morals where they differ most sharply from all other morals. There is one vice of which no man in the world is free; which everyone in the world laothes when he sees it in someone else’ and of which hardly any people, except Christians, ever imagine they are guilty themselves.”

”The vice I am talking of is Pride or Self-Conceit; and the virtue opposite to it, in Christian morals, is called Humility. You may remember, when I was talking about sexual immortality, I warned you tha the center of Christian morals did not lie there. Well, now, we have come to the centre. According to Christian teachers, the essential vice, the utmost evil, is Pride. Unchastity, anger, greed, drunkness, and all that, are merely fleabites in comparison: it was through Pride that the devil became the devil: Pride leads to every other vice: it is the complete anti-God state of mind.”

”Many a man has to overcome cowardice, or lust, or ill-temper by learning to think that they are beneath his dignity- that is, by Pride. The devil laughs. He is perfectly content to see you becoming chaste, brave and self controlled provided he is setting you up in the Dictatorship of Pride. For Pride is spiritual cancer: it eats up the very possibility of love, contentment or even common sense.”

-Chapter 8, The Great Sin

The further removed I get from this recent wave of trials the more I am able to look with clear eyes and recognize the many ways that my pride made that battle so much more difficult. My flares of anger and frustration, every single one of my pity parties, each of my ”woe is me” nights of crying was a tiny spark that my pride turned into a bonfire.

*My pride convinced me we didn’t ”deserve” to be going through so many hard things, all compounded on top of each other. But my faith in God reminds me that these hard things are still part of God’s plan that He hasn’t revealed to me yet. Pride sometimes makes us foolishly think we should be able to share the thoughts of God.

But His Word reminds us ”’For my thoughts are not your thoughts, neither are your ways my ways,’ declares the Lord. ‘As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts that your thoughts.’” Isaiah 55:8-9

Faith is being content, even when we don’t get a glimpse at His plan.

*My pride convinced me that I could handle everything being thrown at us, when in reality I was not capable of meeting everyone’s needs on my own. I needed supernatural strength and clarity that only the Lord could provide. I needed a community to surround us and help lift up our arms each time they fell in desperation.

We are so quick to turn away help from others, seeing it as a sign of weakness. But those are actually the moments for us to practice our humility and allow ourselves to admit that we can’t do it alone. This is still very much a struggle for me. In my past I have had moments of people helping me with significant needs, then using those moments as weapons to shame me later. The hurt from these incidents has created such a dark hole within me that I feel the need to savagely protect from being able to grow any larger. It is easier for me to refuse help, knowing that I am preventing future hurt. As twisted as it sounds, that’s something that trauma can do to you.

Isaiah 40:29-31 reminds us ”He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; 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.”

We were never intended to do the hard things alone. We were never created to do the hard things of life alone. We WILL grow tired and weary, we WILL stumble and fall. It is in those moments that we are called to hope in the Lord and watch His strength be portioned to us. I believe firmly that God will not only freely give us His strength but He will also use other brothers and sisters to lift us up with their strength.

In Exodus 17 there is a story about Moses and the Israelites facing a battle against the Amalekites. The Bible tells us that as long as Moses held up his arms, the Israelites won, but when he put his arms down, the Amalekites started winning. Verses 12-13 tell us: ”When Moses’ arms grew tired, Aaron and Hur brought a stone for him to sit on, while they stood beside him and held up his arms, holding them steady until the sun went down. In this way Joshua totally defeated the Amalekites.”

God could have instantly given a portion of His strength to Moses, but there is a reason He didn’t. Sometimes God chooses to allow a testimony to be written as we watch our brothers and sisters in Christ support our weak and shaking arms. Sometimes our moments of physical pain and shaking muscles are never really about us, but are an instrumental part of a spiritual lesson for someone else. We need to be content in being a teaching tool that God uses in other’s testimonies. What an honoring way to be used by the Lord.

*My pride convinced me that I needed to maintain a reserve for myself and my healing. But In Philippians 2:5-8 we are reminded: ”Have this attitude in yourselves which was also in Christ Jesus, who, although He existed in the form of God, did not regard equality with God a thing to be grasped, but emptied Himself, taking the form of a bond-servant, and being made in the likeness of men. Being found in appearance as a man, He humbled Himself by becoming obedient to the point of death, even death on a cross.”

The world screams ”You can’t pour from an empty cup”, but the truth is that it honors God so much when we empty ourselves for others as it is an act that is completely void of pride and can only breed humility within us.

Psalm 16:5 ”Lord, you alone are my portion and my cup: you make my lot secure.”

When we recognize that the portion within our cup is not something we have created, produced, or secured but rather something that has been gifted to us from the Lord it seems so foolish to think we are to selfishly hang on to it.

Oh the faith it requires to empty yourself for others. But the strengthening of your faith that can come from watching God fill that cup again to the brim…simply because He loves us and feels honored by our continual obedience.

Every single day I struggle with this. Lately it seems that when my head hits the pillow there isn’t a drop left in that cup. And the fear of another empty cup the next day can taint my vision when my eyes open the next morning. But when I recognize that the empty cup keeps me closer to God it helps me see that Him giving me just what I need for each day is a blessing. His mercies are still new every morning. This is a verse that God has been laying heavily on my heart this month and I find myself reciting it every morning: 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.”

I could ramble on and on and on about the lies my pride allowed me to consider over these last 9 weeks of difficulties. The list is enormous and embarrassing. But as C.S. Lewis says at the end of that same chapter from above: ”If anyone would like to acquire humility, I can, I think, tell him the first step. The first step is to realise that one is proud. And a biggish step, too. At least, nothing whatever can be done before it. If you think you are not conceited, it means you are very conceited indeed.”

I want to encourage you to find the hidden pride in your life that has started to become a spiritual cancer. Look at the many ways it has eaten the possibility for contentment. Follow the paths of the sin in your life and trace their roots to pride. I believe that naming sins in my life is one of the most important things I can do, as they serve as an acknowledgment to God and the devil that I am aware and I desire to put them to death.

The true humility that we are called to as Christians isn’t something that we can create. It comes naturally as a byproduct of living a life like Christ. I know I am beating it into your brains but please please please read Philippians 2:1-18 this week. It is literally titled ”Be Like Christ” and is such a great place to start.

Goodness that ended up being a long entry. God sure did have a lot to say. I don’t know who each part of this entry was for but I believe with all of my being that each word on here was ordained by Him for some of you. When I started the blog my intent was to talk about one of the miracles from Matthew. Clearly God had another direction to go.

Isaiah 55:11 ”So will My word be which goes out of My mouth; It will not return to Me empty, without accomplishing what I desire, and without succeeding in the purpose for which I sent it.”

What an amazing God we serve!

Much love,

Leah

Accept Adversity

This last week was one of the hardest ones we have faced as a family, and as you know we have been through some real doozies. After last week’s updates Jake continued to slide in a negative direction with his battle with Covid. We reached a point where his needs surpassed my abilities but after speaking with several doctors we were told he would not be admitted to the hospital based on his oxygen saturations being above 90. We were able to start him on Ivermectin and by the middle of the week he finally started to get a bit of relief in his chest and breathing. Every night he went to bed scared and worried, which obviously alarmed me as well. We kept him hooked to the pulse ox and on a baby monitor so I could hear him if he started passing out again.

In addition to his escalating care, the rest of us all became very stagnant in our improvements. Malachi’s fevers came back and you could tell he felt terrible and weak. I was so worried that his liver would start to fail again with the amounts of Tylenol I was having to run through him to keep his high fevers/seizures at bay. He still is very weak with large, dark circles under his eyes but his demeanor and spirit is so much better.

Levi continued to vomit all week and we worried about dehydration so he ate popsicles for a week straight. Vomiting for him is just so dangerous as he is not able to close his airway to protect it. Because of his frequent vomiting he did not rest well at night, waking up many times to vomit.

I developed head to toe hives as a reaction from the monoclonal antibody injections. Literally all over my scalp, down my entire body, and even on the tops of my toes. It was incredibly miserable and the only relief I could get was from Benadryl. But unfortunately Benadryl clouded my thinking and I wasn’t able to care for the kids, so I had to just deal with the discomfort to make sure their needs were met. It grew so bad that my face and mouth started to swell and fevers started. One of our doctor friends let me do a driveway visit and was able to call in a steroid for me which finally brought some relief. The rash is still there but is no longer painful.

The virus took away my smell, my taste, and the majority of my hearing. I was down to two senses and absolutely miserable but had no one to help take over responsibilities. I had so many moments of desperation and the feeling of being completely overwhelmed. Every night I went to bed hoping the next day would be better but somehow each day was worse than the one before.

There were so many physical, mental, and emotional battles to fight. I am going to speak really honestly here even though it is ugly. I felt a seed of bitterness growing deep within me towards Jake that I knew was planted there by the devil. I was frustrated that he wasn’t able to help me with the boys. I was frustrated he didn’t prioritize the vaccine. I was frustrated he was asking so much of me. I kept repeating this verse over and over in my head, although admittedly sometimes it was through grinding teeth…

”Do nothing from selfishness or empty conceit, but with humility of mind regard one another as more important than yourselves; do not merely look out for your own personal interests, but also for the interests of others.” Philippians 2:3-4

This verse was such an encouraging fuel for me in caring for Malachi and Levi. And at times it worked for caring for Jake, but then the devil did his “thing” and started to try to pollute those words and use them for destruction. I kept flashing back to the many moments in my lifetime I have had to sacrifice my health, peace, or energy for others. The innumerable times that someone else’s needs came before my own. I started thinking “when will it be my turn to be on the other end of this verse God???”

But this verse isn’t simply about actions. It is about our heart’s condition. We don’t do these things to “earn”, we do these things because they come from a heart that is like His. Humility of mind is clearly something I am still lacking, and this week made that glaringly obvious.

God calls us to serve- even when it is asking more than what we are capable of. He wants our hearts, not just our actions. And sometimes we will be called to give our everything and trust God to refill.

The devil will try to get you to believe in scorecards and tally marks. He pointed out all the times that others took advantage of my kindness and my sacrifice. He pointed out all the times that people who should have been caring for me didn’t. He brought up past hurts and disappointments. He turned my vision away from God and directed it at myself. And you simply cannot do the work of the God if you are focusing on yourself.

The devil started to convince me that I was invisible. And there was so much sadness in this week for me. I was giving 100% of myself, sacrificing my own healing for others and it still wasn’t enough. Every night I ended up sobbing in the living room, sleep deprived but needing to watch my husband on one baby monitor and my medically fragile children on the other. The desperation I felt this week was unmatched by any other.

As the health and life came back into our family my heart also started to heal and I was able to start taking every thought captive again. Jake and I laughed (in a cringey way) about how much this felt like a Job story. Even down to his boils/my hives. I have never related more to Job sitting silently around a campfire, not even able to formulate words in his sadness and pain.

Job has always been one of my favorite books of the Bible. As a teenager it taught me what a relationship with God looks like. It opened my eyes to the nature of God as our Father, bragging about us to the devil. It helped me understand free will. It helped me understand the strategies of the devil. The lessons God showed me as a young teenager from Job were a staggering part of my faith.

I remember reading Job one evening when I was maybe 16 years old and praying that God would help me build a strong enough faith to catch the eye of the devil. I wanted God to be so proud of my faith that He would elbow the devil and say “Have you seen my servant Leah?”

I can’t tell you what God thinks of my faith- especially after a week of weak moments like the one I just had- but I can tell you that the devil has been after our family recently. He has been after our children, after our health, and after our marriage as our children’s needs trump spousal ones. He has been looking for spots of weakness in the armor to attack and it has highlighted some major areas that need some strengthening.

The night Malachi was born they were racing me down the halls into the operating room and the ceiling tiles whizzed by over my head. I knew I needed to pray, but I couldn’t even think of how to start. The Spirit pressed the words from Job in my heart and I recited them over and over again until the anesthesia took me away: “The Lord give the and the Lord taketh away, blessed be the name of the Lord.” That night as I processed this prayer rolling off my lips I convinced myself this was God’s way of preparing me for losing Malachi.

But Malachi lived! And that verse became a part of my song of thankfulness to God.

This week as I reflected on Job’s story again in light of our current struggles I decided to read it again. When I got to Job 2 I read a verse that struck my heart in such a good way: “ Then his wife said to him, ‘Do you still hold firm your integrity? Curse God and die!’ But he said to her, ‘You are speaking as one of the foolish women speaks. Shall we only accept good from God but not accept adversity?’ Despite all this, Job did not sin with his lips.”

Ugh, conviction. That one struck a deep cord within me and I could feel my face burning from embarrassment.

The verb choice there is so important: accept. It implies that it is a decision you make to open your arms to it. To open your arms to the hard things, the ugly things, the detestable things.

You don’t accept simply because you are a glutton for punishment, but rather you accept because you see that God is a refiner. Just as this week did for me, adversity highlights the idols we hold to over God. Adversity pinpoints our weaknesses and our egos and helps us see the ways we still rely on ourselves instead of Him.

Oh how shallow the roots of our faith will stay if we only accept the good from God and never the adversity.

As we travel back towards normal in our household we ask that you continue our prayers for health. We are all very weak and most tasks are much harder than they used to be. We spent the entire weekend sanitizing, doing laundry, and cleaning every surface in our home, eager to open it back up for Bible studies!

Here are some fun and happy photos to end the post this week. We got to enjoy some serious family time, filled with games and popsicles.

Thank you to everyone who sent sweet messages, prayers, and cards. We were so blessed by meals and kindness this week and I truly couldn’t have done it without your help. Thank you for carrying us when we were too weak to do so.

I have so many other things I really want to share with you all, but I am still needing to prioritize time a bit while we struggle to find our normal again (does that exist haha?). I am sure this blog was a jumbled mess like last week, but God can still work through the messy- I trust if He wanted you to hear something specific this week from this entry then He will make it abundantly clear to you. And if you need a devotion this week that challenges your faith in a beautiful way start reading through Job!

Much love,

Leah

COVID Round 2

If you have been reading my posts lately they have been saturated with a gloomy cloud of bad news that keeps following us. Believe it or not, this week life knocked us down yet again with all 4 of us testing positive AGAIN for Covid.

Last weekend Jake kept mentioning how exhausted he was. He spent every free moment napping, sleeping for 12-14 hours each day and still woke up talking about how tired he was. If I am being honest, I was not a trophy wife through that. I was running on 3-4 hours of sleep a night and hearing him whine day after day while taking on caretaker 100% of the time his complaints were becoming a point of contention. I was also getting over a cold and helping Malachi through his low grade fever. I snagged him the earliest doc appointment I could (Wednesday at 3) and tried to help him be as responsibility free as possible until then.

I took Malachi to the pediatrician on Monday where he was tested for Covid and RSV and in the process she did spot an ear infection so he started antibiotics. Both tests came back negative on Tuesday and we continued to monitor the fever (we were 6 days in at this point), which was staying low grade.

Tuesday night was a rough one and I finally got the kids both in bed and laid down in their bedroom at 4:00. I had been coughing and each time it woke up Malachi so I had been sleeping on the floor. About 45 minutes later I heard a faint noise coming from across the house, and Levi heard it as well and started screaming. I didn’t want him to wake up Malachi so I unhooked his g-tube from the pump as fast as I could and snatched him up and out of the room. I followed the moaning sounds into the kitchen and found Jake laying halfway in the master bedroom and halfway in the kitchen completely motionless on the floor. I asked him what was going on and he said “Call 911, I need to go to the hospital.”

I quickly called 911 and tried to figure out what was going on. Jake had gotten up to go to the bathroom in the middle of the night and started to feel woozy. He tried to make it across the house to get me and passed out in the process and when he woke up he was unable to move and could only see black. I checked his oxygen while we waited and it was fine but Jake was unable to even sit up. The EMTs finally arrived 30 long minutes later and came in to assess him. His blood pressure was dangerously low and as they were trying to figure out what was going on Jake started to pass out again. They loaded him up in the ambulance and took him to the ER. I packed a notecard with the medications he was currently taking and a timeline of this sickness he has been recovering from for the last 5 weeks. I also put down my name, phone number, and his social security number so they could contact me with updates in case he was unconscious.

Malachi stayed asleep through the situation and Levi was wide awake after they left. I got him calmed back down and back to sleep about the same time that Malachi woke up. Jake called me about that time to fill me in on the tests they were running (CT, X-ray, bloodwork, viral panel, etc). A few hours later he texted “Covid positive” and I was completely dumbfounded. Jake had already had Covid in late February and it was a legit Covid case- nothing mild.

I immediately gloved up and started disinfecting the house but in my heart I knew it was futile…we had already been exposed through the weekend with him. But the task took my mind off of things so I sanitized and prepped the basement for his quarantine. The hospital hooked him to some IV fluids and got his discharge papers ready shortly after lunchtime. I didn’t know how else to get him home so I loaded up the boys and a fresh mask for Jake and headed to pick him up.

I got him home and helped him into the basement, then washed my hands and got each of the boys out of the car. As soon as I carried Malachi in I could tell he was rapidly declining. I took his temp and he was at 103. At that point Levi was acting normal, but by sunset he also was running a high fever.

I had picked up some rapid at home test kits from the drug store while we were in town waiting on Jake to get discharged. I tested both boys and not surprisingly they were both positive. That night was incredibly challenging, as Jake was alone in the basement, fearful he would pass out. I put a baby monitor down there so I could watch him closely. I offered to move him up now that the kids were positive but he said he was more comfortable down there. The boys were burning hot and fever reducers weren’t budging the fevers. And I was running on maybe an hour of sleep from the night before. Everything just hit SO INCREDIBLY FAST! I set up camp with the kids in the living room and we did the best we could that night. I started notecards for each, trying to keep track of everyone’s medication routines. In addition to fever reducers and now added vitamins, each one of us is on at least one prescription antibiotic for the crud we have been dealing with leading up to this. Add into that Malachi and Levi’s regular medications. On our worst days I administer 45 different medications throughout the day.

I had antibodies from round 1 of Covid and also am fully vaccinated (since March). I was so hopeful I could stay virus free but by Thursday it was clear that was not the case. I administered a home test kit Thursday evening and was positive. By Friday the virus and sleep deprivation caught up with me and I was really struggling. Jake was slightly better but still struggling. Levi and Malachi were still randomly spiking fevers back up, and Levi was not holding down any feeds. We both lost our taste, smell, and appetite and a mental fog covered us both.

I had been updating Facebook as energy would allow and got a message from someone asking for us to contact them about the monoclonal infusion antibodies. There was a center about an hour from us that was offering them without a doctor’s prescription and even though the schedule was full they so kindly offered to contact us if they had anything open up on Saturday. They called us the next morning and we had appointments at 12:00! This was truly a God thing for Jake and I!

I felt safe enough to drive so we loaded the four of us up and made our way there. When we got there Jake was the first to get called out of the car and on his way out he managed to shut his finger in the door. He was in such a brain fog he couldn’t figure out what to do and knocked on the window for me to open the door and release his finger. By the time I figured out what was happening he had opened the door himself and I could tell he was in a lot of pain. I asked him, “Are you about to pass out?” And he shook his head no but as he walked off I could see he was struggling.

By the time he made it to the folding chair he was ready to pass out and they grabbed him ice. Then he apparently thought he was going to vomit so they dragged a trash can over. When he was stable enough they administered 4 subcutaneous shots into his belly with the antibodies and got him safely back to the car. My turn was much less eventful and after waiting an hour for side effects we were released to drive home. Jake said he could tell a difference within the hour. I am writing this about 32 hours after my shot and I feel so much better. Definitely still sick but definitely feel like I am winning the fight.

The boys are so so so tough through this round. It has been MUCH worse than the last Covid they had. They have been miserable, Levi waking up crying multiple times a night saying “Me SIIIIIICK” and burning hot with fever. Malachi’s seizures were out of control for the first 2 days; he was seizing harder and longer than I have seen in a long time. He was depleted of all energy and I was terrified that running these fever reducers so intensely might re-trigger his liver failure yet again.

So as of now, Sunday evening, here is where we are all at:

Jake- last night he had another bad night so we hooked him to a pulse oximeter overnight with the baby monitor pointed at the numbers for me to see across the house. His oxygen stayed above 92 throughout the night and he asked me to plug in the oxygen concentrator just in case. He has a tightness in his chest that was much worse pre-antibodies. His taste and smell is starting to come back.

Levi- is doing really well. Last night he slept decently for the first time in awhile. He has also gone all day only vomiting once, but we are running his feeds very small and slow for now. He has been fever free all day and not required any pain meds. He is definitely tired of being in this house but we are all too feverish to go outside and play.

Malachi- is still struggling. His oxygen levels are staying around 94 and his fevers have been controlled today. His seizures are calming down to his normal and he has been resting better the last two nights and taking naps throughout the day. He has not thrown up at all but has a lot of intestinal issues with this one.

Leah- since Thursday I felt like I had been hit by a truck. Very sore, running fevers, lots of head and sinus pressure. Thursday through Saturday were very bad but today I am feeling like I am on the other side. I am sure the vaccine shortened my symptoms based on what I am seeing with the boys. I have lost all smell, taste, and appetite and today I have been coughing so much less.

Aside from the physical challenges this week has brought, the mental challenge has been so much harder. These past few weeks have absolutely drained us physically, emotionally, and mentally. To have another big catastrophe hit our family is just too much. We have been trying so hard to stay focused on God but all of our attention has been focused on minute by minute care.

This weekend I received a message from a college friend and it had a photo of her mom who is currently struggling in the ICU with Covid and her husband by her side praying. The caption said “They are calling out your crew by name and I had to snap this picture of it. You have been on all of our hearts and my mom keeps asking for updates.”

Seeing the photo took my breath away and bubbled up so many emotions. I showed it to Jake and read him the caption and immediately he started sobbing. He told me that a few hours before he had been trying to pray but didn’t have the energy or mental clarity to formulate words. He said God pressed on him “It is not meant for you to pray over this, but for others.” When I shared the photo it was such a faith moment for him to see others that we have never even met lifting our family up to the Lord.

We have had lots of God moments this week, but right now I need to focus on my family. I hope next week we will be able to share stories of our healing with you. Until then, please continue to lift us up. We are so so so weary. We feel that we are under so much spiritual attack. We need peace.

We have had several people asking for tangible ways to help. Our church family has set up a meal train for our family so our family so food is covered. We have had friends mow the grass, drop off slushees, and bring goodies by. We are so thankful for our support system and have all of our needs currently met. We have never been one to ask for help, and still cringe at the thought, but also recognize that there is joy in helping others. If you want to help out with medical bills from Jake’s hospital ride, surprise gifts for the boys, or a movie rental on Amazon for them you can reach out to me at jacobandleah@gmail.com but please know there is no pressure and we are not in desperate need of anything at this time. As I always promise, I will be transparent if we ever reach the point where we are unable to pay our bills. I just know many of you have contacted us about ways to help.

Sincerely,

Leah

Camping In The Storm

Malachi is officially out of liver failure! His enzyme count was 58 from his blood draw last Friday. Praise the Lord!

This week Malachi and I headed to Nashville for his re-scheduled appointments with his surgeons. Originally this trip was going to happen in late July and last 2 days, 3 nights. Malachi was ecstatic about this trip and when he ended up hospitalized instead he was very disappointed as we had already planned out the itinerary.

With Jake back in school we couldn’t really afford to take the full 3 day trip so I worked with the hospital to get his appointments on the same day on the two different ends of Nashville. Jake got a sub for one day so he could stay with Levi and Malachi and I left for Nashville late Tuesday afternoon.

Since we had less than 24 hours for our trip I tried to pack in all the adventure I could so Malachi would feel like we hit *most* of the things from his original itinerary. On the way to the hotel I stopped and picked up a Crumbl Cookie that just his style!

He absolutely loved it! And since I was on the recovery end of a cold he got the whole thing to himself! Too rich for my blood anyway.

We jumped on the hotel bed and then snuggled up to watch Frozen 2 together. There are a few movies we don’t watch often at home due to their intense content and having Levi around so this was a special treat for him.

We drifted off to sleep but the new environment and the anticipation of the adventures kept him up most of the night. Early the next morning we headed to our first appointment with the spine surgeon at his office. He used to work at the hospital one day a week and we would schedule our appointment to hit both surgeons at the same place on the same day. But he switched with a coworker and no longer did hospital appointments so we snagged one of the early morning ones so we could get in and out quickly.

My plan failed and we sat in the waiting area for 1.5 hours before finally getting called back for x-rays. You all would be shocked at how many different pronunciations we get for Malachi.

Mall-ah-chee

Mall-ee-chee

Mall-ack-ee (my personal favorite)

But this time around we heard a new one Mall-ee-she and it has a very foreign flair as it rolled off her tongue.

Malachi did great for X-rays as he always does and we headed to a room to meet with the doctor. Malachi’s spine is at a 45 degree curve which is still in the safe range. This is only 1-2 degrees worse than last year so we are happy. He said that often puberty is when they see this biggest change that warrants surgical correction. So until we see major change we will continue to monitor annually. He offered switching us to the hospital provider so we could avoid the two separate appointments and I very gladly agreed. I had planned three hours between appointments but at this point we were going to be cutting it close to make it across town to the next one 45 minutes away.

Malachi’s orthopedic surgeon is one of our favorite specialists and has incredible bedside manner. Unfortunately Malachi’s brain is telling a few foot tendons to tighten up and they do need surgical intervention. I explained about our recent medical issues, and particularly the liver failure, and we are going to try to postpone this surgery for a year from now if we can get away with it. If it gets much worse we will take him sooner. It will be an outpatient tendon release which he has had done before. “Routine” some may call it haha…we all know that routine doesn’t always happen with Malachi.

One of the oral medications Malachi was on pre-liver failure helped relax his muscles but we sadly had to stop that one since it metabolizes in the liver. So we really have no other options except for surgery. What is frustrating about CP is that these tendons were totally fine a year ago. His brain just recently activated those to pull tight. It is a battle he will fight for his lifetime.

With all the medical appointments done we had just 3 hours for some fun before heading back. I let him decide if he wanted to go to the zoo or the Rainforest Cafe and he voted to go to the Cafe. They seated us right next to the tigers, which he was giddy about. What we didn’t know is that the tigers were malfunctioning and instead of roaring noises they mechanically squeaked, like they needed some WD40. I told Malachi it was the baby tigers squeaking at him which seemed to be enough to keep him happy. His smiles in all of these pictures are such genuine smiles.

He truly enjoyed every minute there and we walked around to visit with all the animals and look at the fish. We stayed through 2 of the thunderstorms, covering his eyes for each one to keep the flashing lights from triggering a seizure.

We went from there to Build A Bear and Malachi got to choose the type of animal he wanted to make and an outfit. He chose a bear and a Batman suit and was so happy with the finished product. He was super sweet and this picture is one I treasure so much.

Then he went to the Disney store to pick out matching tshirts for him and Levi. He is very opinionated these days and having the power of choice is very important to him. Levi had picked out some things for Malachi on his Ohio trip so we had put that one in the original itinerary as silly as it sounds.

Finally we went into the middle of the mall and took a ride on the carousel. The only seat option for us to sit in together were the circular teacup seats. When the ride began it swirled us around so fast and hard I thought I might puke. My reaction set Malachi into giggles and it is safe to say only one of us enjoyed that ride!

We made it back home by 9:00 Wednesday evening and Malachi relayed all of his adventures to Jake and Levi, giggling as we talked about each one.

Thursday we recovered from our travel day and played on the playground with friends.

Unfortunately Friday evening Malachi started running a fever and has had one since. He and I also developed pink eye in both eyes so we are taking antibiotic drops and trying desperately to not give it to Jake or Levi. I am suspicious of an ear infection with Malachi, as driving through the mountains to Nashville has always messed with my ears. Levi has also frequently developed ear infections after Nashville trips. We will likely end up at the pediatrician tomorrow just in case since he can’t communicate the source of pain. I thought he was getting sick last weekend but aside from a sore throat it never progressed into anything.

Levi is still doing great. He is going a bit stir crazy in the house and finding lots of mischief to get into but he is also growing in so many ways. His vocabulary is so big right now and he asks so many questions. So. Many. Questions.

This past month has been a very difficult one for our family. We had gone through a season of calm, with very few unexpected medical issues and very few hospitalizations. I actually told a friend a few weeks ago that things had been eerily calm and I suspected a storm was brewing.

It was exactly one month ago that Malachi and I headed to the Emergency Room for his stomach blockage. Through all of that, as intense as it was, I felt secure in the hands of God.

As the weeks have progressed we continue to get hit with waves of sickness, new upcoming surgeries, and so many medical/medication changes. Right now I am administering 35 medication doses daily. I am keeping logs of all them to try to keep everything straight and life takes my full focus to make sure I don’t make a deadly mistake. Malachi has had diarrhea for over 30 days due to a vitamin for his liver. Each day asks a lot of each of us.

Jake and I had a raw and honest talk this week of how much we feel like we are under attack from the devil. Jake is still very weak recovering from whatever junk had ahold of him but the mental hold on us right now is pretty strong. We are each giving 100% but it doesn’t feel like quite enough.

We find ourselves craving normal. Even normal sickness. Just simply normal.

A normal weekend. A normal night of sleep. A normal hour. Our normal 13 daily medication doses. Normal poop.

We encounter storms often in our medically complex world but there are times we are called to set up camp and live in the storm for a bit. We call these the Job moments. The days when you can’t help but wonder what else is about to happen. We still fully believe that we are in the hands of God, but sometimes His hands pause in the storm for a bit and we begin to feel the elements.

When I am camping out in the storm I tend to have a looser grasp on my inner thoughts. This week Malachi slept one morning a bit longer than normal. I was up with Levi and watching Malachi sleep on the monitor and I couldn’t help but wonder if he had passed away in his sleep, as it was so odd for him to sleep that late. I started to go down the mental road of “what if” and it made me sick to my stomach.

Bracing for impact sometimes feels harder than the impact.

And there is so much danger in the bracing.

We aren’t called to focus on the what ifs, as they strip us of our faith in God and His plan for our lives.

But I admit that when I am camping in the storm I slip into those thoughts a tad bit easier than when I am simply just passing through the storm. I give footholds to the devil so easily that allow him to climb the walls I have put up against him in my life.

I am trying desperately to stay Jesus focused right now and just tonight I have had some sweet and tender moments with Levi that remind me of the importance of modeling a Christ centered life to my children. When I am in a dark place I try to be very intentional with talking about and to Jesus. I have a few Levi stories that might make you smile…

The first one is from a few minutes ago (yes, 12:45am) Levi stole my iPad and started pretending to type away. He looked at me and said “Me blogging mommy!” I asked him what he was blogging about and he said “Jesus!” What is special about this story is that he doesn’t know what I type on here, but that is what he wanted to write about.

Earlier today we went for a drive in the car and Levi said “Mommy, praise and worship music!” My car radio has been broken for months so we cranked up some worship on my phone and he sang his little heart out. I didn’t even know he had those words in his vocabulary, so that one touched my heart for him to be so specific. I even asked him: “Do you want Veggie Tales music?” And he said “No, praise and worship!”

The final moment I am hesitant to share with you because I am opening the door to some major parenting judgment, but it made me laugh a bit so I will end on it….I am not bragging about my methods on this one so don’t feel the need to correct me.

When Malachi is sick we set up a sickness station in the living room. Because of his brain damage when he gets fevers they trigger hot spots in weird placed on his body. So the only way to accurately get a temp for him is rectally. In the “sickness bin” I have a rectal thermometer that we clean with alcohol prep pads after each use. We keep these out of Levi’s reach but he has been extra fascinated with the bin this weekend. He has also learned how to scale things to reach whatever he wants.

Knowing this, I told him on Friday that if he ever touched that specific thermometer (Malachi’s butt thermometer we call it- super creative huh) that he would likely get very sick and have to go to the doctor. He has been popping everything into his mouth and the mental pictures I was seeing were not pretty. He has so much PTSD right now from doc visits and COVID tests that I assumed that would be enough to squash the temptation, and it did for two days!

But tonight as I typed the blog the little rascal climbed up on a bucket he snuck from the playroom and grabbed the thermometer. I turned around to see him examining it closely with his hands. I panicked and shrieked and he immediately started yelling NO DOCTOR NO DOCTOR!!!! I took him in to the bathroom and scrubbed his hands which he says is the only part of him that touched it. He was in hysterics by the end of the hand washing, convinced that he was going to have to go to the doctor. He was so upset that Jake came running out of the bedroom from a dead sleep to see what big catastrophe happened.

I tried to calm him down and reassure him that he would be okay but he wasn’t hearing any of it. I explained that he probably wouldn’t have to go to the doctor but he couldn’t get ahold of his emotions. I told him that we couldn’t take back touching the butt thermometer but we could pray and ask God to keep him from getting sick from it. He was all about that idea and clasped his little hands together and poured his soul out to God. His intensity made me smile (which I obviously hid from him) and we prayed that Jesus would protect Levi from the butt germs and help him stay well enough to not need the doctor. We also prayed that God would help Levi listen and obey much better.

I never imagined that I would verbalize a prayer to God for protection against “the butt germs” but here we are.

I snuck a photo because I knew I couldn’t describe the intensity of his little prayer any better than a visual.

Sweet precious little boy.

But as I look at this photo I can’t help but think of the smile on God’s face to see a 3 year old turning to Him in a moment when he is scared and feeling helpless.

And I am also challenged to continue laying things at the feet of Jesus and making sure I model that to my children. We weren’t made to carry heavy things. What a beautiful lesson to teach my children before they encounter the heavy things this world has to offer.

Please pray for our family. We are ready to pack up our campsite in this storm and move out of it’s reach. But we are waiting (impatiently) for God’s timing to match ours. Please pray for our endurance and strength, both mentally and physically. Pray for health in our family and that we all are back to 100%.

Thank you for taking time to check in on our family and listen to my ramblings.

Love,

Leah

Acceptance=Surrender

I have mentioned the post-hospital exhaustion to you many times before, and this week it overtook us like a wave. Malachi’s stamina for anything that takes a lot of thinking or physical exertion is very diminished so we spent most of the week taking it easy at home and catching up on all the “things”…phone calls with insurance, cleaning, laundry, grocery pick ups, and paperwork. There is an incredible amount of paperwork in the medical momma world.

His new medicine regiment is still taking a toll on him. It makes him more lethargic, but also keeps him from sleeping which I can’t wrap my head around. He is sleeping only 4 hours each night. His seizures are also pretty nasty these days, but more on that in a minute. He still doesn’t have his color back yet which makes me a little nervous.

Now Levi on the other hand has the energy of a thousand Mountain Dew drinking children and has been doing circles around the rest of us. I had the house completely mopped and cleaned up and on Thursday he accidentally dropped a can of Pepsi from overtop his head. The can exploded and started spinning circles, and before I could jump on it like a live grenade it had done some major damage. It left a trail of Pepsi spray on all walls and furniture within 15 feet of the can. It somehow managed to spray everything at floor level and all the way up to 8 feet tall as it gained momentum. It also sprayed each person and dog in the house.

As I surveyed the damage I literally had to start laughing. What a metaphor for our lives right now. One day you are feeling good about how things are going, then BAM a Pepsi can hits the floor. I didn’t even know where to begin on that cleanup process.

This week I have been so incredibly thankful for our dogs. They have taken the brunt of Levi’s attention and built up energy, and done so with such submissive kindness haha. Shiloh even earned a silver medal from Levi.

I am also incredibly thankful for the playground and the trampoline. They have been the highlights of our days and having those things right outside the front door is such a blessing. This happy video will offset the other one that is about to come:

Malachi had another liver enzyme check on Friday but we have not heard the results yet. His seizures are very aggressive and lasting up to 4 minutes and I am so desperate to get him back on some of his former meds. We have to let his liver heal some more before that can happen, but the helpless feeling seeing him get stuck in such rough seizures is difficult.

But words cannot describe how happy Malachi is to be back at home with his family and his dogs. This is most definitely his happy place. Me too buddy, me too.

On Thursday we had a scheduled appointment with the Cerebral Palsy Clinic at the hospital. This was in place pre-chaos so it worked out to get some of Malachi’s bloodwork done while we were there anyway. The CP Clinic is a group appointment where each of the boys gets to see the Neurologist, Orthopedic Surgeon, and Physical Therapy for an assessment and measurements on muscle tone. They called the day before and told me that they needed baseline x-rays for Levi’s hips, feet, and spine so we were told to get there a litter earlier.

Levi’s PTSD has been ramped up a bit with his recent RSV fight. While Malachi and I were inpatient at the hopsital Jake had to take him to the pediatrician to figure out why he was sick. They ran all the tests, including a Covid swab, step test, and a blood draw. So when I mentioned the doctor again he immediately went into high alert, even waking up the nights before the appointment in tears yelling “NO DOCTOR MOMMY”.

He cried the entire way to the hospital and I explained that they were going to take pictures of his feet, hips, and back and that it wouldn’t hurt. X-rays are a new concept for him and oh boy what a process that was. Add into the mix that the hospital wouldn’t let Malachi into the x-ray room and told me to stay with Malachi and they would take Levi alone for his X-rays. Ummm….that’s a hard no. He was already losing his mind at this point so much that he was vomiting in the waiting room. The idea that I would make him go in without me by his side was just not settling well with me. And when he heard their suggestion for me to stay with Malachi, Levi grew even worse. I turned on music for Malachi and decided that he would just have to stay in the waiting room alone for a few minutes and prayed that he wouldn’t have any seizures. Last minute they were able to snag a nurse from another department to sit next to Malachi. I understand not wanting to expose kids to needless radiation, but we are talking about Malachi who has had hundreds of x-rays, not to mention CT and MRI. I don’t often ask for exceptions but this one warranted it, specifically with how out of control Malachi’s seizures have been.

Here is a video of the madness. I was sitting in the waiting room catching vomit from a hysterical Levi and listening to Malachi laugh at his brother. I took a quick video to share with Jake later as I knew words wouldn’t adequately describe the scene we were creating in front of all the other patients:

When we finally made it up to the exam room to meet with doctors Levi was still a sobbing mess and Malachi went into another large seizure. The neurologist witnessed this one firsthand and made the decision to increase one of the new meds we put him on. He wanted me to use rescue meds on Malachi (a medicine we keep on hand for seizures lasting longer than 5 minutes) but when that happens I have to call 911 and take him legit into the hospital ambulance style because it slows down his breathing and he needs oxygen support. Thankfully by the time we finished that discussion Malachi started to pop out of his seizure.

Funny side note- the orthopedic doctor was new to us and asked “Are they twins?” I must have looked at her like she had two heads because she immediately retracted the question. I have realized over the years that doctors quickly try to find categories to make things make sense in their heads when it comes to abnormalities. We often get asked if they are adopted since we have two with such varying medical issues. On the night that Malachi was born the hopsital staff asked me dozens of times what I had been doing that weekend, trying to find something that would line up with a placental abruption. I told them that we took the youth group caving and somehow it got in my file that “Mother fell while caving.” All of the oddities surrounding his birth were attributing to me “falling” which was something that never happened. But in their minds it was an explanation that made sense so it was declared as fact. This was such a sore spot for me, as it removed the urge from them to figure out what ACTUALLY prompted the abruption. Thankfully my OBGYN knew better and prepped Levi’s pregnancy accordingly; I abrupted spontaneously again with him as well.

After our appointment we went down to the blood lab to get his liver enzymes checked. While we were in the ICU Malachi infiltrated at least 4 IVs (blew the vein they were in). Finding a vein to even poke for blood is very difficult right now so it took a few sticks before we got enough for his sample. Malachi is so incredibly tough though and rejoiced alongside of us with a sweet smile when they finally started getting some flow.

Late Thursday evening Malachi and I started showing signs of sore throats, which was super disappointing since we had stayed away so long to prevent catching what Jake and Levi had. Thankfully it hasn’t progressed into a full blown cold, just a menacing sore throat for now and it seems to get better each day. On that note, Jake has continued to struggle with the after effects of his cold- it has officially been over three weeks since his symptoms began. He went to the doctor on Saturday for an ear infection and also a Z pack of antibiotics. And I know you will ask, but both Jake and Levi were tested for Covid and it was negative (Levi at the start of his sickness and Jake on Saturday).

Malachi and I are scheduled to be at Vanderbilt late this week but will be letting our symptoms and health dictate that trip.

Needless to say, it wasn’t a week full of beautiful moments and rays of sunshine. It was a pretty difficult one, each day focusing on just making it to bedtime. When Malachi is only sleeping 4 hours a night it means the days often blur together and having multiple days of that can mess with my psyche.

This week the Spirit continued to put the same verse on my heart:

”I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all things through Christ who gives me strength.” Philippians 4:11-13

I know I talk a lot about contentment on the blog and how it is something we often have to choose. This was definitely a choose contentment week as things weren’t as easily accepted as “good”. But these words resonated with me this week as I reflected on this past month of ups and downs. In the last month I have been in need. I have been hungry. I have been living in want. And as our minds naturally do in those dark days I was drawn to the “living in plenty” moments and the “well fed” moments for my comparison.

But contentment isn’t meant to be an easy and natural thing, as it is not the same thing as joy. Contentment is choosing to be satisfied with things just as they are. And this cannot be accomplished apart from God.

Acceptance of the hard things in life cannot be done apart from God. We often see acceptance as surrender…but isn’t that what faith does? Surrenders our ideals to God’s plan.

But like Paul says in this verse, we have learned the secret…

”I can do all things through Christ who gives me strength.”

Before children I always used to apply this verse to my moments of triumph and victory in something. It was my way of giving glory back to God and acknowledging Him in my success.

But now I apply this verse in my moments of human failure. It my “end of the rope” moments when I have nothing left to give. It has become a heartfelt prayer to Him, crying out when I have nothing more of my own to offer a situation.

In life there are lots of things that you can say you will never be able to do. I could never _________.

But there are things in our life that we were never meant to do alone. There are things that you simply cannot do apart from the Lord.

When God comes alongside of you in your weakness and shares His strength you will most definitely find an inexplicable contentment knowing that He is right by your side.

I am rambling…and totally recognize that haha. I hope that you take time this week to read through Philippians 4 and see what God wants to highlight in your life. It is one of my favorite chapters and I have memorized most of it to help me through the hard moments in life. If you have never experienced God speaking to your heart through scripture I really encourage you to take time to read this chapter and watch what He can do!

Please be in prayer for our family still. We are still in shambles a bit and need a solid week of health and strength to get our footing back. And please continue to pray for Malachi’s liver health so we can get him back on some seizure meds that will work.

Much love,

Leah

The Goodness of God

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

Valley of the Shadow of Death

It is overwhelming to even know where to begin this post. Last week we left off with Malachi simply recovering from a surprise emergency surgery and we were hoping to be home by mid week. Unfortunately things got more complicated and Malachi was transferred to the ICU and we are working at getting him stable enough to head back out to the regular hospital floor.

So what exactly happened? We had a few events take place that initially seemed separate, but I am not convinced they weren’t directly correlated now that we have more of a whole picture. I will summarize as best as possible with just the main points.

Monday was a great day for Malachi. We were continuing to work towards discharge and were told we may even be able to leave Tuesday if he took his feeds well. Monday was a great night filled with Malachi laughter and silliness. You couldn’t tell he had even had surgery except for the periodic winces when his incision was touched. (Side note- we removed the gauze and the “4 inch incision” is definitely 9 inches).

Tuesday morning rolled around and Malachi was extremely tired. I let him sleep a bit but in the back of my head I was eager to wake him up and get his feeds started for the day, hoping for a hospital discharge that evening. After two hours I asked if they thought I should wake him up and they said “I wouldn’t worry mom. He just had surgery and I am sure he needs the extra sleep.”

After three hours the housekeeping staff came in, opening trash bags and clanging around and I was secretly happy, thinking that the noise would wake him up and we could continue working on getting out of there. But Malachi didn’t even move with all the racket.

I spent the next hour anxiously watching his monitors for any changes and I noticed his pulse started to trend lower and lower. I started to get this feeling in my gut that something was wrong so I tried to wake him up. Malachi was non-responsive and had his eyes rolled in the back of his head. The doctors and nurses initially weren’t concerned as his numbers were all still safe ranges and just kept assuming that he was simply tired from recovery. They called in the surgery resident and I explained my fear to him and they decided that maybe his shunt was malfunctioning and passed the buck over to neurology. We went down for a CT scan and while he woke up for a brief few minutes to look around on the field trip down there, by the time we got back up to his room he was out again.

At this point I was getting sick to my stomach. We were just waiting around to see if his shunt had malfunctioned but we had no back up testing being done should it not be the shunt. Results came back that the shunt was fine. And everyone breathed a sigh of relief…except me.

His night nurse from the previous night came back (thank the Lord) and when she walked in and saw Malachi she was extremely concerned. The starch contrast between the two days was very scary, enough so that she called a Rapid Response Code. This code is used very sparingly and when it is called 15 people storm the room ready to act quickly. Respiratory therapists, PICU doctors, etc. They came running in and immediately started to evaluate Malachi. They tried sternum rubs on him (an extremely painful thing that should produce a reaction) and Malachi didn’t move. They poked him for IVs and blood draws and Malachi did not move or wake up. He was completely unresponsive.

Very long story but the short version- the theory is that Malachi was not metabolizing one of his high level pain meds (oxycodone) and it caused him to have an overdose in his system. We stopped all pain meds cold turkey and by the next day he was starting to wake up a bit. He had stayed in a sleep/non-responsive state for a full 24 hours. Obviously this stopped all progress towards going home so we started back at square one on feeds.

He had a decent day Wednesday but by the afternoon he was in a lot of pain and started acting more and more sick. In the middle of the night he started screaming uncontrollably and his heart rate stayed up near 190 for several hours, even after we administered pain meds. Thursday morning they drew up labs and his numbers for everything were completely out of whack.

The team went into emergency mode, hoping that it was a bad blood reading but the re-draw said the same thing. Malachi’s liver enzymes were at over 5,000 (safe range is 5-54) and several other levels were also dangerously off due to the liver not functioning. Malachi had gone into acute liver failure. If left untreated other organs also go into failure as the liver interacts so much with other things.

We were transferred to the ICU and things moved at incredible speed to try to get him stable and safe. The liver filters blood and Malachi’s coagulation was very much affected. So we quickly had to do fresh frozen plasma to get that under control. His blood sugars were off, so we added sugar into his IV fluids. His bilirubin and ammonia levels were very far from normal so we started medications and injections to get those under control. Since infection can be a cause of liver failure we started antibiotics to get ahead of that while the doctors tried to figure out what was going on.

There were lots of theories: 1) the liver was knicked and injured during surgery: but the surgeon was confident that was not the case 2) there was a blockage in the vessels to the liver: but ultrasound ruled that out 3) the liver was enlarged: but ultrasound showed it to be the normal size 4) infection: which stayed on the table for a few days but has since been ruled out 5) medication issue: which seems to be the lasting theory.

One of the livers jobs is to detoxify chemicals and metabolize drugs. Malachi takes several routine medications a day that filter through his liver, specifically a few of his seizure medications. The thought is that when we added in Tylenol and some of the other pain meds that are also sent through the liver that it overwhelmed it and went into failure.

At this point we had intervened on all that we could and we simply had to watch and hope it was enough to get the liver to start functioning again. We did lots of blood draws to monitor and within 24 hours his liver enzymes had gone from 5,000 down to 2,500. As of Saturday morning they are down to 1,500 and I am still waiting on results from today.

As if things were chaotic enough, since 3 out of his 4 seizure meds are filtered through the liver so we had to stop the 3 cold turkey. We added one seizure med that does not route through the liver, but when adding and taking away those meds there usually is a titration process, where you add and remove very slowly. Malachi started having some pretty big breakthrough seizures, triggered by any and all noise. We were in a shared room in the ICU initially, separated by a curtain that is porous a the top. So if they turn the light on it also turns it on in our half as well. The first time that happened it set Malachi into a pretty nasty seizure and the staff worked to keep that other half empty for his sake.

We were able to transfer to a private room in the ICU on Friday and it has been so much better for Malachi. Selfishly I am much happier here. They were requiring masks 24/7 in the other room and there was only a chair to sit in, no surface to recline or lay back on. I tried getting in bed with Malachi but the movement caused more seizures so I stayed up the first night with him.

Step 1 is getting his liver functioning again, then step 2 will be transferring out of the ICU and going to the main floor to pick up where the surgery recovery left off- getting him up to full feeds and managing pain.

Step 3 is going home. But even that has grown complicated. On Monday Levi started complaining to Jake that his ears hurt. Jake took him in Tuesday and found he has a double ear infection and RSV. Yes- you read that right. RSV is so incredibly dangerous for a child with a complex airway, and if you remember we were told by surgeons in Cincinnati to expect an ICU stay if Levi gets a common cold. Obviously this set us into a panic in an already stressful time but God has been so so so good and Levi’s oxygen levels have been safe. Jake has also contracted it and I will not be able to take Malachi home until it clears our home. We have a family at church that has offered their guest home to me for as long as it is needed, but upon discharge it will be so disappointing to not be able to be together as a family.

And interesting side note- our dogs were acting off during all this nonsense so Jake ended up taking them to the vet. Tuck has pneumonia and had to be admitted to the dog hospital for three days. Bizarre. So Jake dealt with sick dogs, sick boys, and now sick Jake since I have been here with Malachi. The dog sickness is in no way related to the RSV. Just annoying irony.

So now let’s have some honest talk here. As you can imagine this has been a very hard week on Malachi and therefore hard on my momma heart.

There have been two distinct times this week that I thought I was about to lose Malachi. The night before our unresponsive oxy overdose I was praying about this whole situation with God and He led me to Psalm 23:

“The Lord is my shepherd,
I shall not want.
He makes me lie down in green pastures;
He leads me beside quiet waters.
He restores my soul;
He guides me in the paths of righteousness
For His name’s sake.

 Even though I walk through the valley of the shadow of death,
I fear no evil, for You are with me;
Your rod and Your staff, they comfort me.
You prepare a table before me in the presence of my enemies;
You have anointed my head with oil;
My cup overflows.
Surely goodness and lovingkindness will follow me all the days of my life,
And I will dwell in the house of the Lord forever.”

As I read these words that night I reflected over our situation- that the surgery was as textbook as it could be and “simple” considering it was an emergency. At that point Malachi was recovering well and we were heading home the next afternoon. I want you to read that chapter again with those things in mind and see what parts your mind cues in on.

I went to bed that night with such a fullness in my heart and feeling so blessed.

But when the next day came and Malachi started to decline with the oxy overdose I started replaying this chunk of scripture and my heart was clinging to very different parts. Read it again with a very sick child in mind.

Hebrews 4:12 tells us “For the word of God is alive and active…” If you have never understood that verse, maybe this glimpse will help you realize that the words of God are so much more than a historical text. You can read the same words 20 times and God’s Spirit can continue to teach you new things through it.

So as I read it the first night my heart was overflowing with joy on how God had led us to quiet waters and green pastures. And when I read it the next day my heart was stuck on how we had now been led to the valley of the shadow of death. I was so busy noticing the quiet waters and green pastures that I didn’t notice we were being led into a valley of shadows. The darkness of the verse settled deep in my soul, and as I stared at my lifeless son I started to process whether this was Malachi’s time to “dwell in the house of the Lord forever”.

The first time that thought hit I got physically nauseous. We have always been aware that we will likely be by his side when Malachi is called heavenward. But I didn’t want it to be now. I didn’t want it to happen when Jake couldn’t be by his side and Levi couldn’t have given one more hug and kiss…one more “I love you Chi Chi.” I found myself pleading with God. And then I felt myself realizing the selfish nature of my prayer and changing it to God’s complete and perfect will being done.

Malachi means “My Messenger” and oh what a messenger of the Lord he has been since day one. We have been blessed to be able to share his testimony with anyone who will listen and how beautiful it is to think that God can use a child that has never spoken a coherent word to teach the world about Him. He is such a heavenly minded boy. He has no fear of death and no fear of evil and that is such a gift from the Lord. I am confident his pure and unclouded view and excitement of heaven is a pleasing aroma to God.

Right in the middle of my God conversation that afternoon I was holding Malachi’s hand and he suddenly woke up. He had been unresponsive all day and he looked right at me. I thought that this was a gift from God for me to be able to say my goodbyes to Him, and y’all, that moment wrecked me. I didn’t want my final words with him to be riddled with fear so we talked about the goodness of God and the excitement that Malachi could sing with the angels and be in the presence of God. He was listening intently then drifted off to non-responsive again after about two minutes.

I have spent this week in the valley of the shadow of death with my son. Yes, it is an evil and dark place….it is a tangible darkness that you can taste as it envelopes you. This week has been clouded with suffering, and watching it happen to someone that you love seems to intensify the pain more than if it were just happening to me. But even in the thickest parts the rod and the staff of God are extended to me. The comfort that comes from tightening your grasp on the outstretched hand of God can overpower any darkness. We aren’t created to withstand the shadows of death alone and please know that you will fail every single time without God’s help.

Malachi and I have spent our time in this valley of death and darkness singing praises to God. We have spent each night telling Bible stories and talking about times in his life that Malachi has been a part of a big God story. As I laid there with him in the ICU I couldn’t help but remember that it was in that very same building that Malachi was born without a heartbeat and spent 15 long minutes in the arms of the angels as they tried to resuscitate him. There is such a clear reason that Malachi is on this earth, and while I may not always see the purpose in the suffering I know that God sees such value in Malachi’s life. He has given him such a great job description for His Kingdom, and oh how beautiful it is to see Malachi continue to tell his God story with a smile on his face.

I *think* I see a clearing and maybe some green pastures up ahead this week, but there is something so faith building about dwelling close to God in this valley. He has been restoring my soul and anointing me with oil. I have watched Him turn my mourning into dancing even though we are still surrounded by darkness. And that is something only God can do.

Please continue to pray for progress and health in our family. Pray that there are no more sudden setbacks and that Malachi’s liver begins to function again. Please also pray for protection from any sickness and that Levi will continue to remain stable and strong through his RSV.

Even after discharge this will be a very complicated process for our family as we try to get his seizure medications figured out and get him back to baseline. He is very weak, understandably. I am admittedly nervous as his caregiver because we have lost all signs of a baseline. When I don’t have a “normal” for comparison or monitors to reassure me it makes caring for him very nerve wrecking.

Please also continue to pray for my endurance. I have reached my emotional threshold, which is not an easy thing to do. As hard as hospital life is, leaving here will be even harder as I am 100% responsible for his care. Hospitals are the worst possible place to try to “rest up” so I am already extra sleep deprived, getting 2-3 hours per night.

Much love,

Leah

More Prayers Please

We have had a lot of up and downs since my last post. Malachi is now in the PICU with acute liver failure and docs aren’t able to figure out why. He has had a really hard week and is absolutely worn out. At this point he is mostly healed from surgery and we have just moved on to more complicated things.

We got a call from the pediatrician today that Levi tested positive for RSV on Tuesday. In addition he has a double ear infection. Thankfully he is doing really well and breathing safely at this point.

We are thankful for all of your prayers and would like to ask for more as we navigate some hard things right now. If I get a chance I will type an update on Sunday but please pray for our boys.

Not Consumed

As I write this update we are still inpatient in the hospital with Malachi as he recovers from his unexpected surgery on Friday afternoon.

Wednesday morning Malachi woke up with a tight tummy. He always wakes up with a wonky stomach so we spend the first two hours of every day venting him and getting him in a comfortable place to medicate and feed him. He got his morning feed at 10:00 and we usually try to feed him every 4-5 hours. When 2:00 rolled around I checked his residual (undigested food) and his whole 8 ounce breakfast came out meaning he hadn’t digested any of it.

This is not normal for Malachi. Sometimes when things are moving slowly through his gut we may have a 1-2 ounce residual but it have a whole feed come back out was a huge red flag. He was very uncomfortable and his belly was swollen and distended so we spent some time trying to medicate him and get him comfortable but to no avail. Around dinner time Wednesday I decided to take him on to the emergency room and rule out some of the big things that often pair with these symptoms.

Unfortunately the ER was packed and they put us in a SHARED room. I was dumbfounded that with Covid still lingering they are doubling up patients in the same tiny rooms separated by a curtain. Not to mention an immunosuppressed kid like our Malachi. But something just felt so off with Malachi. On the way to the ER he started vomiting so much that I stopped by a Dollar General to buy bath towels to catch it all. I am sure the family in our shared room was cringing each time Malachi started a puking spell. Malachi was lethargic at this point, sleeping through IVs and vitals which is never a good sign.

I expressed my concerns about a bowel blockage or a shunt malfunction and they ordered a chest x-ray, abdominal x-ray, and a CT scan to check the shunt function. They also ordered a CBC and some other bloodwork and started an IV since he hadn’t processed any food that day. All of the tests and images came back clear and without issue with the exception of a slightly elevated white blood cell count. The doctor felt that maybe he was coming down with something viral so after a few rounds of hydration we were sent home. I was so relieved to hear it wasn’t one of the “big issues” I feared it was when we went in.

That night Malachi continued to vomit every drop of pedialyte or medication I tried to get into him. When he gets sick I chart everything and by the time this morning rolled around Malachi had thrown up more than 50 times in under 2 days. When his stomach was empty he began throwing up stomach bile, and when that color started to change I got even more concerned.

Malachi was telling me exactly where on his tummy he hurt and it was near his side where his appendix is located. The next day after our ER visit he still wasn’t improving so I took him to the pediatrician. They ran more bloodwork and ran another IV for fluids since he was clearly dehydrating quickly. The bloodwork showed the same numbers as the ER, so if this were viral he wasn’t getting progressively more sick. They were concerned about the appendix and suggested that I take him in on Friday if we didn’t see any improvement. He also started running a low grade fever.

Thursday night Malachi continued to worsen, crying out in pain often and projectile vomiting a very dark green stomach bile every 30 minutes. I started noticing chunks of dark, old blood and I kept thinking about his appendix and as soon as the sun rose for the day I loaded him up and took him back to the emergency room. I asked them to do an abdominal CT to check for appendix issues and they got him down there relatively quickly. Malachi was still in a lot of pain and continued to vomit stomach bile.

The ER doc pulled up the scans and it just so happened that a surgeon was in the ER at that very moment. She called him over to take a look and gave him a quick history on Malachi and he spotted what looked like a twist in the small intestine. He knew that Malachi had a VP shunt and any leaking of intestinal contents (common with a blockage) could easily make their way into Malachi’s shunt tubing which could have severe consequences. He came in the room and told me that he usually likes to wait 48 hours to see if the twists self resolve but in Malachi’s case he felt he needed to go to emergency surgery right away. He said there was a chance that we would find a part of his intestine that had been damaged by the twist and would need to be removed. This surgery would take several hours and require at least a week in the PICU.

As he said all of this to me I just nodded in affirmation, trying to stay focused. He stopped and said “I’m sorry, but you seem very unemotional about all of this.” The call out caught me off guard and I simply explained that Malachi has been in severe pain and very sick for since Wednesday- what a blessing it was that he had figured out the cause and had the ability to address and fix it! It is so interesting how being a medical momma completely changes your perspective on things. More on that in a minute.

For most moms hearing “emergency surgery” would cue panicky tears, and I won’t lie- that was my first instinct. But we are used to emergencies and we are used to really bad news. I have been told that my children stopped breathing and were being resuscitated. I have been told that surgeries failed and we were out of options. I have been told to run quickly to my child’s room before they were whisked off to an emergency surgery that no one expected him to survive. When your mind is littered with worst case scenarios, a low-risk emergency surgery seems like such a blessing.

I reassured the nurses listening in that I wasn’t a serial killer void of emotions, just trying to reserve them for later when Malachi wasn’t listening in. One of the hardest parts of medical momma mode is convincing the boys that what’s about to happen is no big deal. If I am trying to do that amidst sobs and tears then I am sure they aren’t buying into it. I go into robot mode, convincing myself even that this really isn’t going to be a big deal and hoping that the emotions are contagious with the boys.

Within 30 minutes of finding the twisted intestine Malachi was in surgery. With Covid protocols I ended up waiting in a room where I gave myself a solid 15 minute ugly cry, then called Jake to tell him Malachi was in surgery, and then continued to wait. After 1.5 hours the surgeon came in to tell me that when they opened Malachi up they found lots of scar tissue from previous surgeries. As he was heading towards the problem area, hacking through it like a machete in a rainforest jungle, he found one large band of scar tissue that had pinned down a chunk of the small intestine. In doing so it had completely clamped off that portion and created a blockage that nothing could pass through. He snapped the scar tissue and immediately everything started sailing through and out. The medical students that were in the room re-played the scene later for me and they said it was fascinating. The surgeon snipped the scar tissue and BAM the intestines “inflated” and all the backed up contents shot out. No damage was found on the intestine itself meaning we caught it wonderfully early. And interesting to note- the blockage was over by Malachi’s appendix, right where he indicated to me there was the most pain. Smart boy and amazing.

The outcome was the BEST possible outcome.

Malachi came back from the OR with a 4 inch incision, an NG tube coming out of his nose to clear the intestines while they heal, and a catheter for his urine. He was miserable but for the first time in days he was not vomiting. He insisted I sit close enough to him to hold his hand all evening and we talked about how brave and amazing he is. We did not end up going to the PICU which is such a blessing. In the PICU there is no privacy, no bathrooms, and you witness a lot of things and situations that stick with you for a long time. We are in a big room and have been playing lots of UNO, watching lots of movies, and snuggling. This morning we held our own church service snuggled up in bed singing praise and worship songs.

The did a nerve block so Malachi wouldn’t feel pain from the surgery site for 2 days. As of this afternoon (Sunday) the meds have worn off and Malachi is definitely feeling it. We had made some great progress the last few days but took several steps back today, going back on oxygen and battling some very large seizures induced by the pain that he is in. You can see the progress and the regression in the photos. I was feeling SO good about possibly being discharged on Monday but now I am thinking we will be here an extra few days. I hope I am wrong.

Jake is home with Levi and we have chosen to divide and conquer on this one. We FaceTime with dad and Levi several times a day and share stories. Levi was so excited that Malachi had oxygen tubing on his face. He kept saying “oxygen like me!” His excitement over the tubing made Malachi puff out his chest with pride, and is now a badge of honor in his eyes. Surgery is a common word in our home, so when I shared with Levi that Malachi had surgery Levi didn’t skip a beat. I love that they have another medically quirky bro to relate with.

Covid precautions are still in place and they are not allowing visitors. Thankfully some of our Hopsital buddies have come by to visit Malachi, and he was THRILLED. He started giggling and smiling for the first time in days. It brought tears to my eyes to see how happy he was, and to know there are so many people who love him.

Here is a video of Malachi and his hospital buddies:

My gut told me this would be an inpatient stay when we headed to the ER for the second time so I packed enough stuff to get through several days. I have spent over 300 nights in the hospital with my boys so I can pack a hospital bag insanely fast- maybe there is a Guinness World Record for that. Someone sent me a gift card for Door Dash and WOW that is a game changer!!! Being inpatient on a weekend is extra tough because everything shuts down in the hospital at weird hours on the weekends. With Door Dash I can order a meal from any local restaurant and have them meet me in the lobby of the ER, meaning Malachi only has to be alone in the room for 2 minutes. Amazing!

Mentally we are all holding up well. Obviously the situation isn’t an ideal one, and watching Malachi suffer never gets “routine” or normal. But I do have to say that I have felt God allllll over this one.

Sometimes during our medical issues I feel like we are under attack spiritually. But I never felt that with this one. God was so incredibly clear with me on when to take him in, which is something I specifically pray for. He was very specific on leading me to the issue and the words to help advocate for Malachi. God was so present and pushy (can I say that about God haha? Is that allowed?) that I knew His hand was on the situation.

When you see God working so actively it is hard to justify mourning over a situation. Instead I get distracted thinking “What is He up to?”

“I remember my affliction and my wandering, the bitterness and the gall. I well remember them, and my soul is downcast within me. Yet this I call to mind and therefore I have hope: Because of the Lord’s great love we are not consumed, for His compassions never fail. They are new every morning; great is your faithfulness. I say to myself ‘The Lord is my portion; therefore I will wait for Him.’ “ Lamentations 3:19-24

I don’t think I can find a better verse to explain what has been happening in my heart this week. As you know, I have some pretty severe PTSD in this place. I have to close my eyes when I pass certain seats, certain doors, and certain doctors. It is like I am watching a movie and can replay the moments we dealt with bad news in each of those situations. I can literally tell you how my ankles were folded and what shoes I was wearing when I called Jake to tell him that Malachi had been diagnosed with Infantile Spasms. I can tell you what table and chair I sat at in the dining hall when I got a phone call from the NICU about Levi. This place is a walking scrapbook of some of my most horrible moments.

But even in this dark, sad place I have hope. I can remember the relieved faces of surgeons as they entered rooms to tell me they witnessed a miracle and my son was alive. I can tell you what chair I was sitting in when I felt the Holy Spirit enter the room during brain surgery and offer me a comfort only He could provide. I can see God in the moments when the ER doc says “As luck would have it, one of the surgeons walked in just as Malachi’s scans were sent.”

We have been sent into the fire an incredible amount of times with our children. But I can testify that we have never been consumed. The flames have touched our skin and left marks, the scalpels have pierced and left their scars, but we have never been consumed by the flames.

Because of this we have learned that the flames in life are not meant to be feared or avoided. It is in the flames that you see the invisible embrace of God. “Because of the Lord’s great love we are not consumed.”

His compassions never fail.

And oh how great is His faithfulness to our family. This hospital is a living testament to that, and in the ashes of all of my memories in the fire here I see that we have never left the protection of my God.

So like the verse says, I continue to believe wholeheartedly that the Lord is my portion. And I will continue to wait patiently for Him to reveal our passageway out of this fire that we are currently in.

And lastly, I feel deep in my heart that there is more to this surgery that we haven’t seen yet. For the first time in YEARS Malachi is able to pass gas, leading me to believe that this scar tissue has been partially blocking him for quite some time. As you know, his seizures are triggered the most by tummy pain and knowing that this might help that excites me so much.

He is so proud each time he lets one rip. I told him it is his new superpower. Today I was telling the nurse that he passed more gas (something we document for the surgeon) and he pushed with all his might to pop another one out for her. When he succeeded he was so proud. Such a boy.

Please pray overtime for Malachi, specifically for his pain management. He is such a warrior and has been handling this so incredibly well. We are canceling our trip to Nashville this week and he is dealing with the disappointment from that. I hyped it up BIG TIME talking about all of the fun things he and I were going to do in between appointments. Now that those fun expectations have been replaced with surgery and pain he is understandably sad. Thank you for helping lift us up during the tiring times and thank you for listening to my dump out my brain and heart each week. It continues to amaze me that so many strangers love my children- what a special thing.

Much love,

Leah