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

Surgery Update

I am so relieved to share with you that surgery was successful. Malachi has had multiple abdominal surgeries since his birth and each one has left behind lots of scar tissue. The surgeon started snipping scar tissue that was in the way to get the the problem spot they noted on the CT scan and found a piece of scar tissue pinching down a chunk of intestine. Once they snipped it the gut started flowing immediately. No noticeable damage to the intestine that required cutting out and reattaching sections.

Surgeon is very pleased and said it was a good thing we didn’t wait any longer as it would have gotten much worse and most definitely never self resolved.

Malachi had a nerve block in the operating room so he isn’t feeling the pain quite yet and shouldn’t for 2-3 days. He is still hooked to a catheter for urine, multiple IVs, and a NG tube down his nose to allow air and stomach contents to stay out of the intestine while it heals. He is still getting some whiffs of oxygen to help keep his stats up.

He has a four inch incision down the center of his belly which will make handling him very difficult. Our goal right now is to leave him as still as he will allow us and let his gut rest. We are in a room on the regular floor and not the PICU which is a huge step in the right direction. The surgeon said to expect a 7 day stay but if Malachi starts bouncing back more quickly than that we will make it home sooner. He is setting the tone for his healing.

Obviously this has been a pretty dramatic week for us, and I should have plenty of time to write you all a thorough update on Sunday night. Thank you for the prayers and please keep them coming for pain management and no more surprises.

Prayers Please

Prayers needed. Malachi just went back for emergency surgery. They found a twist in his intestine and they will be going in to untwist it and repair any intestine damage/death they find. The situation is a bit risky as his shunt tubing goes from his brain to his abdomen. If they find that any digestive or fecal matter has leaked out through a damaged part of the intestine there is a chance it could somehow find it’s way into Malachi’s brain area. This is not typically a life or death surgery but would easily turn life or death if we don’t do it right now.

His Strength

Two more weeks. Jake goes back to school in just two more weeks and I have already started the mourning process. Having him home for the summer is an indescribable blessing and gives me a burst of respite care.

We had a week of adventure in the Carroll house as Jake’s family traveled down for a visit. We had a dozen people staying in our home and both of the kids thoroughly loved the cousin time. We held our first annual “Cousin Olympics” with temporary tattoos, seven events, and an awards ceremony at the end. The older cousins took turns helping Malachi compete in all of the events and he had such a great time. He even earned a 2nd place medal in the Sock Ball contest.

They also got to spend some time in the pool and got a glimpse of a rainbow one evening after a storm.

And of course, it wouldn’t be a cousin adventure without some sunset s’mores!

Jake’s family rented a giant 25ft water slide for the weekend and the whole drive over we talked it up to the boys, their excitement growing the closer we got. But when we got there we realized that it may be a little dangerous to try, especially with trying to protect Malachi’s body. But after all the hype we had given it we knew we had to make it work for him! We turned off the water portion and sent him down with Jake.

I took a brief video so you could see his sweet smile at the end:

Little Levi, on the other hand, was not a fan.

We have been working with Shiloh this week on retrieving things for Malachi. We have been watching both dogs to see which one has a better temperament for service and Shiloh seems to be the winner over Tuck. He and Malachi have a connection and he always wants to be close to him. He sits very still next to him to allow Malachi to take his time petting him. They are 70 pounds each now and 6 months old and we love having them in our world.

Malachi and I will leave next week for Nashville and I have been trying to map out a few fun things to do along the way in between appointments. He is very excited about getting to go on a trip with mom, and it is fueled by Levi’s tears as he screams that he wants to go too.

I started Malachi on a new medication this week called oral baclofen which we are hoping to use to reduce his seizures and help him sleep. It’s main use for kids with CP is to help tight muscles loosen so that is an added bonus but not the primary purpose for us. He was actually prescribed this in February but came down with COVID that same week so I put it on the shelf until I felt comfortable. The problem is that I really really really hate starting him on new medications. New medications tend to steal his personality from us a bit and then if they aren’t the right fit, weaning him off of a new med can take months. I finally felt like the time was right to start it, so here we go. He has been on it for 3 days and while he has been extra emotional it doesn’t seem to be doing anything negative to his system quite yet.

Malachi also got fitted for a new wheelchair this week, and this time he went with “Electric Blue”. He tells me he wants it to be superhero themed so I am finding accessories I think I can rig on there to make it special for him. It takes a few months for it to arrive, so it will be a fun distraction until it is ready for him.

One of my favorite chunks of scripture in the Bible is Isaiah 40. I am such an imaginative person and it paints such a beautiful picture of God. I memorized a chunk of this chapter in college and I didn’t realize how much it would ring true later on in my life.

”Do you not know? Have you not heard? The Everlasting God, the Lord, the Creator of the ends of the earth does not become weary or tired. His understanding is inscrutable. He gives strength to the weary, and to him who lacks might He increases power. Though youths grow weary and tired, and vigorous men stumble badly, yet those who wait for the Lord will gain new strength; they will mount up with wings like eagles, they will run and not get tired, they will walk and not become weary.”

I think weary is a perfect word for me. Our days require 100% from us, and because of the nature of caregiving I cannot simply take a day off. I haven’t had a full nights sleep in 8 years and the sleep I do get is littered with lots of wake ups to make sure the kids are still breathing and to check feeding pumps.

But as tired as I often get I have watched God take a limp and lifeless Leah and ask more from me. God doesn’t need my energy. He doesn’t need my best. There is nothing that God NEEDS from me. He simply desires my willingness.

In my own strength I cannot fulfill the expectations I have for myself. I cannot fill others expectations, or even God’s expectations with the meager portions of energy I have left each day. But it isn’t MY energy that God is looking for. He is looking for me to wait patiently on the Lord for Him to share His strength with me. That is what a real relationship looks like.

Jake and I find it humorous the things that God continues to call us to. Every time we think there isn’t anything left to give, God places another calling or task on our hearts and we walk in obedience. I often don’t talk about some of these callings because I don’t want to sound like I am soliciting glory from any of them. But I do have a point to make so stick with me!

Right now we are serving at the church as youth ministers. This involves leading Bible studies two nights a week and feeding them all in our home (30-40 of them) on Sunday evenings. I start cooking around 3pm on Sundays and finish cleaning and start blogging around midnight on. Most Sunday mornings I also serve on the worship team at church so we are go-go-go from sun up to sun down. We also do lots of events with them, including an upcoming overnight retreat for the girls in my basement.

Jake leads a men’s Bible study at the house each Saturday evening. The wives started riding along and now we have the men meet downstairs with Jake and the women meet upstairs for their own God conversations.

We are coaching the high school boys and girls soccer teams. This one is a calling, as odd as it sounds. Talking too much in detail about that doesn’t feel right, so I will leave it at that. This week they will be coming over to the house for dinner and bonding after practice.

I am still serving as the church secretary, which was most definitely something that God clearly called me to. My time in that role is coming to an end very soon, and I feel a peace about passing it on to someone new.

Even with all of these roles, all of these duties, and all of these expectations I still feel God tugging us to do more.

When you have faith in God, it also includes having faith that when He calls you to something He will also give you the resources, energy, and strength to complete the task.

When you have faith in God when he says jump, you jump…even when you don’t have any legs! God is the only one qualified enough to tell us our limits, as He created each of us with particular tasks in mind.

This rings true in my role as a mother as well as we have watched God time and time again carry me through WEEKS of three hour nights of sleep. He has carried me through over 300 days spent in hospitals at my children’s bedside.

This is obviously not written to bring any glory or compliments on Jake and I, but rather to encourage you to be a “Yes Man” to God. When the Holy Spirit tugs you in a certain direction just obey. Don’t overthink it. Don’t pros/cons list it. Don’t even give it a second thought. Obey and watch God give you a portion of His wisdom and His strength. Watching God use a lifeless Leah has built my faith and trust in Him way more than any powerful testimony I could hear.

Much love,

Leah

The Foolish

Our family is back at home after a week away with the teens. We jokingly say goodbye to each other whenever we embark on a youth camp week because we want to free each other from all other focus but the teens and their spiritual needs. Although we do spend a lot of time in the presence of each other at camp we try to keep our focus on the kids.

I was very blessed to have friends come along this year who were willing to stay with my boys at the rental house, allowing me to attend chapels and very late nights with the youth. Most nights I didn’t get back until 2am and they never complained! What a blessing they were to me.

During the day times we all loaded up and went to camp for the day. Malachi and Levi were both so excited to spend time with the teens and Levi would giggle each day when we arrived. This has been a part of Malachi’s summer since his birth so it is old news to him and something he thoroughly enjoys.

Each year as I pack for camp I ask myself why in the world I am doing this. It is always an extremely long week for all of us and sleep is even rarer than at home. But every single year God reminds me in His own subtle ways why He is calling me to go back year after year. The conversations I get to have with these amazing teens about God is something special. Being able to be on this spiritual journey with them for 7 years of their life is profoundly impacting my own faith. I get to watch God grow these children of His from babies to eating the meat of God’s Word.

This year it took about 24 hours for God to point out why He had called me there that week. I won’t be able to go into detail on here as I want to protect confidentiality, but WOW did God move…and quickly!

As the devil often does, he noticed my joy as the week progressed and started to attack in subtle ways. At one point in the week the teens all do an obstacle course in the mud. This is always a highlight of the week so I drove Malachi down to the course area and set up a chair right next to the first mud pit so he could hear them splashing. The air horn blew and Malachi was on pins and needles listening to the kids enter the mud and run through it. Their squeals made him giggle and his joy was contagious. The kids all finished the course and headed on to the next thing and Malachi and I sat in that chair for an extra few minutes. His smile faded as the kids left and as I watched him intently listening for them as they moved away I couldn’t help but get a lump in my throat.

I could feel in my heart how much Malachi longed to be with them. How much we wanted to get in that mud and splash just like they were. I leaned down at one point and explained that no other little kids were in the mud, that it was only for the big kids and that answered was good enough for him. But soon the day will come when that answer will be a lie. And soon the day will come when Levi is able to do all of those things and the isolation Malachi will feel already breaks my heart.

Special needs parenting is so hard in so many different ways. Some of those I have yet to even uncover, but these glimpses of them are so hard to process.

I truthfully don’t know how many more camps I will be able to attend as Malachi grows. Right now we can still toss him over our shoulder and carry him into non-accessible places, but as he grows that might change. I am cherishing these special weeks until that day comes.

The word that the Spirit placed on my heart this week was “Authentic”. Our ability to bring others closer to Christ is severely limited, and in some cases counter productive, if we aren’t authentic in our faith and in our walk with God. So many times we hide the real us in an effort to portray what we think is a better version of ourselves.

1 Corinthians 1:26-31 “For consider your calling, brothers and sisters, that there were not many wise according to the flesh, not many mighty, not many noble; but God has chosen the foolish things of the world to shame the wise, and God has chosen the weak things of the world to shame the things which are strong, and the insignificant things of the world and the despised God has chosen, the things that are not, so that He may nullify the things that are, so that no human may boast before God. But it is due to Him that you are in Christ Jesus, who became to us wisdom from God, and righteousness and sanctification, and redemption, so that, just as it is written: ‘Let the one who boasts, boast in the Lord.’ “

There are words in that verse that are compliments that people would love to hear said about them: wise, strong, noble.

Then there are words that we would cringe about if they were spoken about us: foolish, weak, insignificant.

But it is those seemingly shameful attributes that God sees a need for Him. He sees brokenness that only He can fix, and when God works in and through our weaknesses the glory can undeniably rest on Him and Him alone.

Authentic faith is so important. Being able to share the good and the bad pleases God. Some of my most powerful God moments were in my weakest and darkest moments. God loves to turn ashes to beauty and bones into an army.

We witnessed very authentic faith this week start to grow and take root in many of our teens. Listening to their hearts was such a blessing and made me take a fresh look at my own level of authenticity.

Please pray for our family as we recuperate from camp and prayerfully choose a route to go with the group. It is always a wonderful challenge to take the fire they have in their hearts from a week focused on God and do what we can to keep the flame shining brightly.

Also pray for our upcoming trip to Nashville to meet with Malachi’s spine and orthopedic surgeon. I don’t expect bad news, but it always reopens the conversation about Malachi’s future and leads to some hard conversations and reality checks.

Much love,

Leah

What Are You Doing Here?

We are a 9 days post op and Levi is officially back to his normal, rambunctious self.

Whenever they clean his lungs his body registers something foreign and tries to fight it off. It is common to run fevers and feel a bit puny after a bronchoscopy as the body tries to figure out what is happening. Other parts of the procedure tend to irritate his airway and cause him to vomit for several days post op. This go around he had three days of vomiting by leveled back out by mid week.

Malachi met with the gastroenterologist this week to talk about his tummy aches; they spark his seizures so keeping them at bay is a big priority right now. We were given an emergency med for the tummy aches last time but this time we decided to go ahead and make it a routine, daily med. Administering meds has become such a routine part of our world that I feel confident I could do it in my sleep. But it definitely is a lot of to keep track of. Malachi takes 6 meds in the morning and 6 in the evening and Levi takes 2 each night and a water flush.

We spent some time with family this week at the bowling alley. Malachi was in a cranky mood so we weren’t sure that it was going to go smoothly. Once I started narrating the game to Malachi, frame by frame and pin by pin he was hooked and his attitude turned right around.

When Malachi bowls we place the ball and he pushes his arm up to knock it down the ramp.

He is very invested in it each time he rolls it. He waits expectantly for the crash of the pins and for us to tell him how many he knocked down. He so desperately wanted a strike but didn’t get it this time. He ended up in 2nd place and was legitimately mad about it, telling me that he was sad. He is si competitive- it cracks me up.

Then there was Levi, who was way more excited about getting to wear bowling shoes than actually bowling.

I haven’t mentioned the dogs on here lately, so I thought it was time for a quick update on them. They are just shy of 6 months and 60 pounds each! They don’t look like puppies anymore but they sure do act like puppies. They are sweet to the boys and very tolerant but don’t realize how big they have gotten!They have retained most of their training and are very well behaved, but still have to be watched closely as they are starting to try to chew on things. We are trying to train them to stay within the property lines and they are doing really well with the concept. And since they have been at the house we have not had a single bear come up to the porch like they used to! Our neighborhood camera have been picking up a lot of bears but none are making it to our front door.

This week we will be heading to South Carolina with 47 teens/chaperones from our youth group! Jake stays with the campers and I rent a house a few miles down the road each year and commute. It is a week we all four look forward to and we treat it as our family summer vacation. It is always such a blessing to be able to connect with the teens and help them grow closer in their walk with Christ. Yes, it is an insane amount of prep work, fundraising, and stress but it is so worth it.

For the last few years I have had two very sweet nurse friends come along to help with Malachi and Levi. I wouldn’t be able to manage going without their support!

Each year I spend time in prayer about the direction we need to go with the group. We like to give them a challenge for the week spiritually and on the final night we meet and all discuss the things God showed us throughout the week. We start around midnight and usually wrap up at 3am- something Malachi has prepared me for. Oddly enough I am usually the most wide eyed for these thanks to my years of training haha.

This year God led me to 1 Kings 19. If you haven’t read it, I want to encourage you to look it up. This chapter in itself is a devotional on so many levels and has so many relatable moments for me. But the things I am about to share with the teens are also so applicable for me as well, so I thought I would share them with you. This morning at church the pastor preached from this very chunk of scripture which made me smile in a God-moment type way.

In 1 Kings 19 we see Elijah going through a valley moment. He is running from an evil woman and he loses sight of his faith. God speaks to him and asks him one simply question: “What are you doing here, Elijah?”

God already knows the answer, so why did He ask the question?

Elijah, in his moments of weakness, had focused inward. This is something all of us tend to do in stressful moments. We forget all of our previous successes and focus on the current failure. We mourn over it, dwell on it, and put our eyes on our circumstance instead of the One who can draw us out of it.

When God spoke that question to Elijah I think it was meant to snap him out of his pity party. It was meant to refocus him on God’s plan and will for his life, and help him remember that even in our darkest days we have a Light that can never be extinguished.

Even in our valley moments God is working on something beautiful.

And like the faithful Father that He is, God took the time to remind Elijah of His presence. He took him on a mountain and we read in 1 Kings 19:11-13:

“Then a great and powerful wind tore the mountains apart and shattered the rocks before the Lord, but the Lord was not in the wind. After the wind there was an earthquake, but the Lord was not in the earthquake. 12 After the earthquake came a fire, but the Lord was not in the fire. And after the fire came a gentle whisper. 13 When Elijah heard it, he pulled his cloak over his face and went out and stood at the mouth of the cave.”

So many times we wait on God to get our attention with the grandiose things in our lives- the wind (change), the earthquake (tragedy), the fire (loss). How many times do we miss His voice because we aren’t listening for the whisper?

Listening for the whispers of God keeps us close to Him. With the help of the Spirit we develop an ear for His voice. But so often in our moments of intense listening we catch other noisy things that draw our focus away from Him.

In my life I need the moments where God whispers “What are you doing here, Leah?”

I need Him to call me out of my pity parties and refocus my ear on His voice. Watching God work is a learned skill. It is something you have to train your eyes for, and when you start to master it you see His hand in EVERYTHING! And when you see Him at work, with the ease of a gentle whisper, your faith is transformed.

This week I am challenging my teens to listen for the whisper moments of God. I want to challenge you (and myself) to do the same. Please pray for us this week and I am hoping to have some great updates to share with you next week!

Much love,

Leah

Purposed

Levi and I are back in Tennessee after an eventful week in Ohio! Let’s start with surgery updates…

I like to pretend that my life is normal, and it is weeks like this one that serve as a reality check. We successfully kept Levi from knowing that Friday was surgery day. I try to be very honest with Levi about his surgeries, although I don’t talk about it until we have to. He is a worrier and will stress for days leading up to the surgery.

Before procedures he has to go NPO, which means he can’t have food past a certain time (midnight this go around). Usually surgery mornings are escalated by him being hungry and sleepy which was definitely the case this trip.

We headed to the check in desk where I told the lady “Levi Carroll checking in for surgery” and as soon as he heard the word Levi began shouting “NO SURGERY NO SURGERY”. The anxiousness and tears began and although I could distract him for small chunks of time he kept returning back to the fear of what was about to happen. We had gone to the store the night before and picked out some special toys he wouldn’t be able to play with until “tomorrow” and that worked decently well.

There were no delays and they were ready to roll him through the check in process very efficiently. When his surgeon walked in Levi ran over and gave her a big hug, which surprised us both. But when the nurse came in with a Covid test, however, he lost his ever loving mind. He ran the gamut of emotions in the pre-op room and then the time came for him to go back to the operating room. Due to Covid precautions they haven’t been allowing parents to go to the OR to say goodbyes but for some reason they made an exception and let me carry him back. We got to the doors for the handoff- my absolute least favorite part- and he screamed as they pulled him from my arms.

I continually worry about the long term effects these repeated moments will have on our relationship. The trust is broken again and again, and the pain is induced again and again. Yes, it is what is best for him but sometimes I wonder about the damage it may be causing when he looks to me for comfort and I turn my back and leave the room.

Surgeries aren’t a one time deal with my children. They are repeated events that HAVE to happen. I was telling a friend this week how on surgery days I have to unplug the “mom” wire temporarily. I have to detach all of my emotions from the experience for two reasons: 1) using energy towards emotions depletes me 2) My boys will reflect my emotions- if I am calm they are calmer. So each time I unplug the wire and get the day over with as fast as possible.

These procedures typically don’t take very long and I almost feel bad for the other parents in the waiting area as I flutter in and out so quickly. I remember being in that very room being jealous of the other parents with shorter surgeries. I am a people watcher, but in that environment I keep my eyes down as much as possible as looking around makes me queasy.

Hospitals are a place of miracles but they are also a place of death. It is a place that you can have the best day of your life or the worst day of your life. It is a place that carries more darkness than light, no matter how hard they try to make the decor warm and inviting. The emotions in that surgery waiting room are thick and the tension can be felt in an indescribable way.

This time I tried closing my eyes to block off others but kept flashing back to an early Sunday morning when I sat in that giant room by myself. They don’t do surgeries on Sundays but this one was an emergency with Levi and I sat alone in an organize chair by the window. Instead of calling me into a parent conference room the surgeon just pulled a chair up next to me. The loneliness of those few hours in that orange chair is haunting.

Levi’s airway procedures breach two specialties so typically the pulmonologist comes in first to do the lung portion and the ENT surgeon comes in to do the airway repairs. When I get called to the parent conference rooms it is usually twice- one for each- then back to the waiting room until I am called to recovery. This time around I met with the pulmonologist for the update but the ENT surgeon was called into another surgery room so we ended up going on back to recovery. I had asked them to bring me back quickly before he woke up so I could change his g-tube while he was still coming out of anesthesia.

Levi woke up like a rabid raccoon as soon as I got his old g-tube out and started swinging. I was able to fill the balloon just in time before he sat up and started trying to hit the nurse and yanking on his IV. I bear hugged him so she could get the IV out, which obviously didn’t help his anger. He stayed mad until I told him we could put his clothing on and then he felt secure enough to calm down. We waited a bit longer so the ENT surgeon could come out for updates.

Here is a quick summary of the day:

-Levi’s vocal cords are both still paralyzed. If they are still paralyzed this time next year they will statistically never work in his lifetime.

-His airway is still wide enough for safe breathing but some tissue is starting to grow up around the airway which could become a problem before next year’s surgery. His adenoids, epiglottis, and arytenoids are all very large so it looks like we will be doing another supraglottoplasty in a year (if it can wait that long). These procedures involve trimming away some of the flesh and involves a hospital stay on the complex airway floor.

-Trach talk is officially off the table at this point. We are in a place where we have lots of surgical options to manage the airway.

-His lungs look stronger than last year. He has dropped the diagnoses of bronchomalacia and tracheomalacia! They have tested the fluid to check for signs of aspiration and we will hear those results in a week or so.

-Levi’s voice quality is the best it will ever be. Right now his cords are touching which gives him a stronger voice. If they get any closer he will not be able to breathe and we will have to surgically intervene. Ideally they would be slightly more open to keep air moving even when he is active.

-We are to watch him VERY closely, especially during physical activities to make sure he isn’t oxygen hungry. He has been having some trouble lately when he is playing hard outside and if that worsens to the point that we are having to limit activity we will have to make another trip up for the next surgical steps.

-I asked about how aggressively I should be pursuing oral feeds and they gave me the green light to really push foods but also cautioned that even if he didn’t need it that taking the g-tube out wasn’t a good idea at this point which the ways his airway could change.

Someone asked me if this was good news or bad news and I told them that it really depends on the mood I am in when I read them. I can find great things in this news, and I can also find devastating things in this news.

We still haven’t gotten our miracle that the cords start moving. That is continually my prayer. 27 times I have sat down with surgeons to have them shake their heads no. That creates some callouses in some pretty understandable ways. It also stretches my faith more than I am often comfortable with- but isn’t that really a good thing?

This week the emotions hit the hardest as I drove up to Ohio. I bottled it all in like I usually do, and as I drove down the interstate I just kept thinking how much I didn’t want to be doing this…this trip, this surgery, this life. I cried tears of anger that surgery trips fill our summer instead of the summer vacations other families get to enjoy. This life I have been called to is one I wouldn’t wish on an enemy and calls for me to give of things I don’t possess.

As the hot tears rolled down my face the Spirit put a word on my heart as He often does when I am choosing to listen.

Purposed

In Daniel 1 we are introduced to Daniel, a man taken captive to Babylon. He was in a life he didn’t choose (sounds familiar) and in an environment that didn’t make it easy to honor God. In fact, it actually made it easy for him to set his faith to the side and enjoy worldly things. But the backstory to this scripture really isn’t necessary here if you just focus on these words…

But Daniel purposed in his heart that he would not defile himself…” (Daniel 1:8)

As I rolled the word around in my head I started remembering how faith is an incredibly difficult thing to commit to. It is something that is not meant to come naturally, something that you have to purpose in your heart to pursue.

Faith is a choice. And it is a choice we are called to make free from the chains of contingencies and circumstances.

We are to “purpose in our heart” and continually choose faith. As I made that dreaded drive to Ohio I spoke this scripture to God and affirmed that even in this dark moment I would choose to believe that God’s purpose in this pain is greater than my comfort.

I can just imagine the smile on the face of God when we purpose in our heart to continue to trust in Him when the Devil has so clearly tempted us with the way and emotions of this earth.

While we were in Ohio we spent some treasured time with family. Levi was so excited to see everyone and gave hundreds of hugs this visit. We spent some time with my sweet 89 year old grandmother; Levi sat on her lap and stared at her face for several minutes, then turned to me and said “Mama, grandma old.” I cringed and he took it that I didn’t understand, so he repeated it again and again “She old. Old Mama. She old.”

Oh the honesty of 3 year olds.

Levi also fell in love with Skyline Chili this trip. He is hooked and I am totally okay with that.

Spending one on one time with him was actual more special that I realized it would be. He is talking so much these days and our car time was full of conversations and goofy moments. We made up silly songs, talked about life, and smiled a lot. We shared slushees and went to playgrounds that I would usually feel guilty taking Malachi to as they aren’t very handicap accessible. It was a special time for us.

Every night before we would go to sleep Levi would say “Me go home”. When I asked him why he wanted to go home he would say “Malachi”. He definitely struggled with some home sickness and missed his brother dearly, and I did too. It was so hard being away from him. Jake handled the caregiver role like a champ and we did a lot of FaceTime and phone calls.

Their reunion last night was special and I have been squeezing Malachi every chance I can get.

Malachi woke up with a tummy ache this morning and we have battled it all day long, finally using emergency tummy meds to help him calm down. He had three medium seizures as we got him ready for church so I decided to stay home with him and send Levi and Jake on. We were able to get the seizures to stop but he is still in some pain.

I told Malachi that he will get to do his one on one trip with mom in a few weeks (Vanderbilt to see spinal and orthopedic surgeons) and he is thrilled! We have a slower week this week and will be trying our energy reserves refilled before we embark to youth camp next week.

Thank you for covering us in prayer this past week as we faced another challenging medical trip. We had so many blessing moments from friends that meant so much to us. It is in weeks like this one that I am reminded how important it is to have brothers and sisters in Christ willing to carry burdens with you. Just like Job, sometimes all I need is some friends to sit cross legged around the fire with me in my sadness and simply be a present and willing ear.

May God bless your family this week, and may you choose to purpose in your heart to continue to walk in faith.

Much love,

Leah

Willing Water Walker

On Tuesday Levi and I will be loading up and heading north for his surgery on Friday. I have had many people ask me what he is having surgery on so I figured it would be good to summarize it on here. The short answer is: we won’t know what they will need to work on until they get in the operating room. We sign off on all procedures except for the trach and find out after surgery what was needed and performed.

Here is the long answer:

Levi was born with both vocal cords paralyzed in an almost closed position. The official diagnosis is bilateral vocal cord paralysis. The treatment for this is to put in a trach and wait until the child reaches 5 years old; 50% of kids with this diagnosis have vocal cords that wake up by then. If they don’t wake up by age 5 they will never wake up (aside from a miracle).

To summarize a very long journey, Levi was flown to Cincinnati at two weeks old to try several experimental procedures in an effort to avoid the trach. After several failed surgeries the surgeons agreed to try a very difficult and tricky surgery on him that they typically wait until they are older to try due to the size of the airway. It took several surgeons and several hours during which they opened up his airway and used a piece of his rib to prop open his vocal cords enough for him to breathe. Levi was the 2nd baby to ever have this done, and he was the smallest child to ever try this on. This procedure is called a single stage laryngotracheal reconstruction. I like to put the formal terms for things in the blog so if other parents are searching google they can stumble upon this possible treatment for their little ones as well.

Because there are no other previous examples to look at, we are completely in uncharted territory. The surgeons have been watching him closely to see if the new opening they created will continue to be “enough” for breathing or become “unsafe” for eating/drinking. To add to the intrigue, it seems that the gap is growing with him which can be a good thing (he would be able to breathe easily) or a bad thing (he wouldn’t be able to safely eat or drink and may lose his ability to speak). There are definitely pros and cons to all sides.

Right now Levi seems to be in a stable spot. He is breathing well, but when he exerts energy he starts to wheeze. This tells us clinically that his cords are still paralyzed but they will verify that this week. They will also clean out his lungs and tell us if they find any food particles. This would be a game changer as we would have to cut back on what he eats and drinks by mouth.

This week’s procedure is called a microlaryngoscopy and bronchoscopy and involves ENT surgeons and pulmonologist. I am relatively confident this is procedure #27 for him and at least 20 of those have been these same ML&Bs. In addition to his vocal cord issues he has some other areas of his airway and lungs that are floppy (called tracheomalacia and bronchomalacia). I have my list of questions for the surgeons and hope to find out some helpful information that will help us know how to proceed. For example, we have been working hard on getting Levi to eat by mouth, but there is always a chance that if we find food particles in his lungs we will have to cut back on that. I am continually hesitating on getting him to master new foods when I know there is a chance they can be taken away. That would be hard for any three year old.

Last year the doctors were thrilled at his progress and safety, which was very encouraging to us. We are hoping for another positive report but the potential for bad news is still lingering.

I have to be really honest, this week has been very challenging for me mentally. I keep thinking back to the early days of Levi’s story and some of the really hard times are sneaking back to the front of my memory. We experienced more failures than successes and the roller coaster of emotions took it’s toll on my heart. It is in weeks like this one that I recognize the PTSD and the trauma of what we went through during those months.

I flashed back to a conversation I had with a doctor near the end of Levi’s stay. There was a constant battle between the ENT surgeons and the NICU doctors over Levi’s safety without a trach. The NICU staff felt strongly that he HAD to be trached and tried frequently to justify doing so (against mom and surgeons orders). The surgeons kept clinging to slivers of hope and possible surgical solutions and I obviously jumped on that bandwagon.

One afternoon I spoke with a NICU doctor who was VERY agitated that I would not sign off on the trach. She looked at me with such anger in her eyes and said “If you try to take this baby home you won’t even make it to Kentucky before he stops breathing. You will be on the side of the highway performing CPR on him and he will die because of YOU. His death will be on your hands.” She then went to her office and typed up a paper that said I understood that if my child dies due to not having the trach that I acknowledge that it was a preventable death and 100% my fault. She asked me to sign the paper in a very bully-like manner and I responded by telling her that I wanted to speak with his surgeons again. If they said the trach was the only option then we would gladly sign off on it (the stance we always had), but if there was any other route to take we wanted to exhaust that first. She stormed out of the room with a trail of residents behind her. I am still appalled that parents are threatened and treated in such shocking ways when we are all supposed to be on the same team, finding the best treatment plan for each individual child.

The mental drama from that stay goes so much deeper than I have ever shared with you. We were at war for our son on a daily and sometimes hourly basis. Going back into that building is still traumatic for me, not to mention the agony Levi feels when he realizes he is going to have surgery again. We keep it a secret from him until he realizes it on his own.

So leading into this week I travel between the emotions of excitement to hear good news, fear of hearing bad news, dread on Levi’s behalf for the pre/post op moments, and a strong desire to get it over with. I don’t particularly enjoy talking about it with others. And I have several physical places in that building I have to avoid looking at when I travel through the hallways as they bring back a host of hard memories. The chair I was leaning on when I got a phone call that he coded…the slow elevator I had to ride to get to his bedside as they fought to keep him alive the night we arrived….those surgery conference rooms that I experienced so much disappointment in. The building is full of reminders and I often feel a cloud rise above my head when I walk through its doors.

Let me take just a quick minute and catch you up on the rest of life. Levi found a stack of pictures in a drawer from my baby shower for Malachi and took each one to him to show it to him and tell him who was in the photo. They are such sweet brothers.

Malachi is having a great, seizure controlled week. Seizure “control’ to us is him having less than 6 a day and no large ones. It brings my peace knowing he is doing so well right before I head to go out of town.

Leaving Malachi is such a hard thing for me. We literally sleep nose to nose so I can wake up when he seizes, so being away from him is always an adjustment. Jake is a heavy sleeper and I always fear that he will sleep through any emergencies with Malachi, so I have to give that over to God and remember that He has already set Malachi’s timeline here on earth.

Levi and I will be staying with family while we are in Ohio. Traveling with just one of the kids is always mind blowing to me, as it is astronomically easier to have just one set of needs to focus on. Traveling with Levi changes the car we can drive, the activities we can do, even my restroom breaks on the drive. When I am traveling solo with Malachi I restrict my liquids so I don’t have to leave him unattended in the car for bathroom breaks. As odd as it sounds since we are traveling for a surgery, time with Levi gives me a glimpse of “normal”.

Speaking of glimpses of normal, a friend invited me to a David Crowder concert this week and it sounded like a good opportunity to refuel a bit before our big week. I snuck away on Saturday and drove to the most amazing concert venue I have ever seen! It is called “The Caverns” and pre-Covid the concerts were held inside of this cave. Not they do the music portion outside of the cave to allow for social distancing, but the restrooms are still inside so I got a glimpse.

My friend and I had a wonderful time singing praise and worship and just doing something out of the ordinary!

This week I taught from Matthew 14 in my youth Bible study, particularly the part about Peter’s failed attempt to walk on water. I heard that story as a child but it wasn’t until recently that I saw my moments of weak faith looking eerily similar to Peter’s.

And I am embarrassed to admit this, but I find myself longing to stay in the safety of the boat.

In my life I have been called by Christ out of the boat many times. I have locked eyes with Christ and boldly and faithfully stepped out of the boat to walk towards His embrace. For years I welcomed these moments seeing them as an honor as I knew they strengthened my reliance on God.

But things changed dramatically when my precious children were added into the equation. Now I find myself getting sick to my stomach each time Christ looks at me from the middle of a raging sea and says “Come”. Each surgery decision, each new procedure, each new diagnosis is a raging sea moment that I don’t have the opportunity to ignore. It is a sea I must enter, holding tightly to my boys and masking my fear so as not to worry them.

I cling tightly to my sweet boys as I step with shaky legs into the tumultuous waves and try desperately to remind myself that He is faithful. That He is the calm in the storm, and I need only to rely on His power to keep me on top of the water. Yes, I still get distracted by the waves as I watch them jump up and strike my children time and time again. Like Peter many times I get overwhelmed by the storms and start to sink, shouting for God to rescue us.

Staying in the boat and holding my children safely in my arms seems like such a safer option…but my faith in that situation is placed in the boat itself…not in my God.

We each have a choice. We can choose a weak faith that stays in the comfortable parts of life, never being challenged and pruned, but never experiencing true growth. Or we can choose to leave the comfortable moments and search for faith challenging ones knowing that the fruit that we can produce after a pruning can be magnificent.

Faith was never meant to be easy. Sometimes as parents we are called to charge head on into the messy parts of life as uncomfortable as those parts may be. And while these moments may challenge our already weak faith in inexplicable ways, it is in these raging sea moments that our children see our faith come to life. I want my kids to see me as a willing water walker. I hope I can cast away my spirit of fear and trade it for a boldness like Peters.

This week is a walking on water week. As much as I desire to stay safely tucked in the boat I see the beauty and power of being called into the storm, as that calling leads me closer into the embrace of Christ.

I have learned to kiss the wave that throws me against he rock of ages. – Charles Spurgeon

Please pray for Levi this week as we go back to the operating room. Pray for traveling mercies, wisdom, and good reports. Please also pray for Jake and Malachi as hey navigate life at home together. 24/7 care for Malachi without brief moments of rest is difficult mentally. He brain and body defies logic, and pairing that with lack of sleep is very hard on the caregiver. Pray that Jake is able to build an extra dose of endurance and patience this week!

I am believing that I will have a good report to share with you next week!

Much love,

Leah