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