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.