This week has been a roller coaster of health for our sweet Malachi. I don’t want to drown you in details, so I will do my best to summarize what has been going on.
Last weekend Malachi started running very high temperatures and medicine wasn’t helping bring them down much. We assumed he had the flu and it needed to run its course, but after several days of the high fever and no new symptoms we started to contemplate taking him in. We have to be cautious with hospital visits as we don’t want to expose him to something worse than what he already is dealing with.
Tuesday morning when we woke up we noticed that Malachi’s feet and arms were an ashy purple/gray. It was alarming enough that I immediately started packing a bag for a multi day stay in the hospital and headed straight to the ER with him.
They took him straight back to a room and started running a barrage of tests. Their initial assumption was that his VP shunt was malfunctioning- the shunt helps his spinal fluid flow out of the brain ventricles so if this ever malfunctions we have to go straight into emergency brain surgery. Malachi had a CT scan and some x-rays done which all showed that his shunt was working perfectly.
We ran a respiratory panel which came back negative for all of the biggies like the flu, but positive for something called coronavirus. Since this was a viral thing there isn’t a treatment; you just let it run its course.
We also catheterized him to get a urine sample straight from the bladder and it showed white blood cells and protein meaning he had a urinary tract infection. Malachi then had an ultrasound done on his kidneys to make sure he didn’t have a bigger issue that we were missing, which he did not.
After a very long day in the ER we headed home with an antibiotic and our fingers crossed that it would do the trick. At this point Malachi hadn’t eaten since Saturday but was well hydrated with pedialyte through his g-tube. He was cranky, exhausted, and still feeling crummy. He is a hard stick and required six pokes just to get a blood draw, not to mention all the uncomfortable tests and imaging.
But as the days ticked on Malachi seemed to be getting worse instead of better and his feet continued to turn purple whenever he was seated at 90 degrees. On Thursday I took him to see his pediatrician and repeat his blood work. I also asked that they do another respiratory panel as I was worried he may have picked up something new in the emergency room. His blood work showed that his white blood cell count was in a safe range, meaning the antibiotic was knocking out the infection. They suspected that it had made its way to Malachi’s kidneys which is why he was still so sick.
But Thursday night his fever was still at 103.4. Friday they called me back and mentioned that his respiratory panel showed that he had a new bacteria growing in his lungs which they assume was the cause of his high fevers still.
So in summary: urinary tract/kidney infection that is treatable by antibiotics, coronavirus which has to run its course, and bacteria in the lungs which is treatable by antibiotics. The whole week has blurred into what feels like one long day full of vomiting, temperature taking, medicine giving (Malachi is getting 15 doses of things a day right now), unpleasant side effects of said antibiotics, and sleepless nights.
We did manage to get a few sweet smiles throughout the week, but you can tell how weak he is.
We obviously canceled all therapies and appointments and have been staying in and watching Malachi like a hawk. Most of the week Malachi was unresponsive and cranky to anything going on around him. As soon as Levi would enter the room Malachi would sign no, and didn’t want him anywhere near him. This was the sickest he has been in quite a long time.
Whenever we have to go to the hospital I often have to laugh to keep from crying. Thankfully we have made lots of friends over the years so when we walk in we are greeted by friendly faces who already know our Malachi. If I wanted to focus on the fact that we are on a first name basis with many of the hospital employees, that could very quickly bring me down. But instead I choose to focus on the kindness and familiarity of the place; it reminds me of how big Malachi’s sphere of influence has grown.
Levi has been super sweet to Malachi and can tell that he isn’t feeling good. He keeps going over to him and talking quietly to him while kissing him on the head. I tried to film a small bit for you:
When Malachi was in the NICU I frequently read him the book On the Night You Were Born. One of the lines says: “Because there had never been anyone like you… ever in the world. So enchanted with you were the wind and the rain, that they whispered the sound of your wonderful name. It sailed through the farmland high on the breeze…Over the ocean…And through the trees…Until everyone heard it and everyone knew of the one and only ever you.”
I have watched this line come to life over the last 6 (almost 7) years and it never ceases to amaze me how far Malachi’s story has traveled. Yes, locally Malachi is known very well but his name is continuing to float on the breeze and find its way to other far off places. In 2019 this blog was read by 195,000 people in over 140 different countries. Ummmm what?!? Literally hundreds of people in Australia, Germany Ireland, France, Denmark, South Africa, Italy, Israel, Egypt, Japan…they have come here to read about our special little boy. I can’t even begin to fathom how that happens, but it blows me away.
My prayer for 2020 is that God continues to use Malachi to bring people closer to Him. What a big and important job He has given to our warrior.
This week was a very hard week for Malachi, and several times I caught myself wondering if this would be the sickness that took him away from us. Each night I would pray fervently with Malachi that he would wake up completely healed, and each morning he seemed to wake up sicker than the night before. He wanted to be held, but holding him caused his feet to change colors so we would lay in the bed with our heads touching and hold hands while we talked about the future.
I had to keep reminding myself about Daniel in the lion’s den. When we are put in dangerous situations we always have to remember that the will of God for our lives is much more powerful than the danger around us. If God wants to shut the mouths of the lions, He is certainly powerful enough to do so. We can relax and rest comfortably in the arms of God knowing that He authored the ending.
I wrote this around 3am one night; God had been pressing it on my heart to share it with you all but my mind was so foggy I didn’t have the clarity to write it out until one particular night. Malachi was steadily growing worse and had finally fallen asleep as I typed these hard words:
Even though I walk through the valley of the shadow of death I will fear no evil.
This has been a shadow of death week. I know that sounds dramatic, but in our medically complex world it doesn’t take long for mild to become life threatening. Our special children don’t follow flow charts, textbooks, or “usually…” Each time we loaded up to go see the doctors again I caught myself wondering if this would be the last car ride, the last photo, the last time he would see Levi.
Malachi and I are so connected, and if I allow myself to fear as we walk through the valley of the shadow of death so will he. So instead we spend our hardest nights talking about heaven. Truthfully, it is one of his favorite things to talk about.
This week we had lots and lots of heaven talks. We talk about who will run faster in heaven, daddy or Malachi. We talk about how Malachi will have to teach Levi how to climb the trees there. We talk about the walks and talks he and I will have there and how I can’t wait to hear his version of his life here on earth. We talk about him wrestling his buddy Johnny, who made it there before Malachi. We talk about how beautiful the angels will sing and how exciting it will be to praise God forever with them. We practice the songs together that the Bible tells us the angels sing in Revelation.
I tell him about the beauty of heaven and how lucky he will be on the day that God tells him it is time to be with Him there.
I don’t want him to ever fear the shadow of death….so I too am learning to reach for the rod and staff for comfort as we walk through that valley together.
This week that valley led to a clearing. But one day that path will take a different turn. I don’t know if I can ever truly prepare my heart for that day, but I know I can prepare Malachi’s heart.
I can teach him that God’s timing is perfect. I can teach him that God loves him and he is one of God’s most treasured creations. I can teach him that God has ordered his steps already and has chosen the day He will call him heavenward. I can teach him about how God placed him on this earth for a reason. I teach him, and oh how he listens with such excitement- eager for the day he gets to see God the Father face to face.
May we all embrace our valley of the shadow of death as gracefully as Malachi…choosing to see the beauty that awaits instead of focusing on the evil along the way.
Tonight is Malachi’s first fever free night in 9 days. Yesterday was the first day in nearly a week that he had tolerated any food in his belly, so he has clearly lost a significant amount of weight. We are going to be spending the next week trying to re-strengthen and get as close to his baseline as possible.
I hesitate to even mention it, because I don’t want to have to deal with disappointment if it doesn’t work out, but we are planning to leave on Saturday to go on a week long family vacation to Orlando with Jake’s siblings and parents. This is HUGE for us, as we don’t do things like this ever. We have always hoarded Jake’s sick days for surprise hospital stays, so we are really stepping our of our comfort zone on this one, trusting that we won’t need these days later on in the year. Traveling with the boys is also incredibly stressful, but traveling with sick boys that may need a hospital at some point while we are gone is a whole new level of stress. Please pray with us that we are able to get strong enough to go on our trip as planned.
And just for giggles, here is a silly video of Levi to end on: