The Carroll crew officially has COVID. I feel like I just heard each of you gasp all the way in Tennessee haha. If you have been following our journey for long you will recognize what a big deal this could potentially be for our crew. I will summarize a bit of the journey so far, but everyone is at home right now and managing it well.
Early this week the boys had several specialist appointments at the hospital outpatient center. We were there multiple days for multiple appointments, and keeping Levi contained in the rooms while holding Malachi was quite the struggle. At one point he laid on the floor in a fit and all that was running through my mind was “Well, here come the germs!”
By late Thursday night he had a hint of a runny nose, and by Friday he was snotty and coughing. We suspected it was just a cold based on past sicknesses with him but stayed away from others just in case. We started hourly temperature checks and oxygen level checks for all of us and crossed our fingers. Saturday morning Jake woke up and had a slightly sore throat. We figured he had picked up whatever Levi had since he often sneaks sips of daddy’s drink so we scheduled a test to get Jake tested.
As we drove over Jake said “I will be shocked if it comes back positive, because I really don’t feel bad.” Sure enough, he got a positive result and sure enough we were shocked. I immediately called a local place that was doing PCR COVID testing (the send off ones) to schedule a test for me, and that came back negative. So far, I am still feeling fine and don’t have any signs of sickness.
Levi continued with his coughing and congestion and sounds sick when he talks. He is breathing great, praise the Lord, and his oxygen saturations have been impressive, even for normal Levi, hanging around 97. Malachi started with some diarrhea on Saturday night and began coughing. He is the one I am most concerned about so far as his breathing has been shallow and faster than normal. His oxygen level is usually around 95 and has dropped down to 93 so we are watching him extremely closely. His seizures have not been worsened at all. And neither boy has had a fever.
Jake went from shocked from the positive result to totally agreeing with it as the day progressed. It is in his chest and lungs and he says it is different than any sickness he has dealt with before. When he was trying to sleep last night he said his lungs burned like he had been running. Today he started lots of new supplements and vitamins as recommended by the doctor. His oxygen saturations have also been normal and he is not running a fever.
We are in completely new territory with this sickness so we are praying each day and believing in God’s protection over our family. My mind keeps mentally planning for having to take one or both kids to the hospital at any moment, which is a weird spot to be in. Each meal, each shower, each night in my own bed I find myself wondering if tomorrow will be a different setting or circumstance. I will be taking them to the pediatrician tomorrow to get a game plan in place should things change. We aren’t paralyzed by fear, like I assumed I would be. We are just taking it hour by hour and praying to be showered with God’s peace and good rest for all.
Everyone is in good spirits and during the daytime hours there are lots of giggles and smiles. They crash hard and fast for naps. Night time is proving to be difficult with lots of coughing and subsequent pain.
Now for some pre-COVID updates…
The boys met with their neurologist and the appointment went great. Malachi sees an epileptologist for seizures, a neurosurgeon for his shunt, and a neurologist for the other things his brain does to his body (cerebral palsy mainly). He also goes to Vanderbilt for the orthopedic and spinal surgeons so mainly we use the neurologist to talk about his tone.
When the brain is damaged in certain spots it can cause hypertonic muscles (super tight) or hypotonic muscles (super loose). Malachi has extensive brain damage and therefore has “mixed” cerebral palsy. Some parts of Malachi are tight, like his hips, ankles, and knees. Some parts are loose like his abdomen, neck, arms, etc. There isn’t a way to “fix” either, but there are ways to manage them. For tight muscles one of the common treatments is injecting botox to relax them a bit. Or some surgeons will do tendon lengthening to help relieve some of the tight areas. Malachi doesn’t really need any of those corrections right now, but the neurologist wants to see if starting him on a small dose of a muscle relaxant called Baclofen will help Malachi at all. It could have the opposite effect and make his loose muscles even more loose, and in rare cases it can increase seizures so we are proceeding with lots of wariness and caution.
Once we are back to 100% health I will start Malachi on the oral medication and we will see what happens.
Levi also sees the same neurologist, and for him the conversations go a little bit differently. When Levi walks with his braces in his shoes you would not likely recognize there are any issues. But when the shoes come off you see how much his ankles are affected by his cerebral palsy. He has hypotonic (loose) CP and it seems to be getting worse in his feet, but slightly better in his core.
The neurologist was legitimately shocked by how well Levi is functioning in spite of his CP. He truly couldn’t believe how much his braces change his abilities. He is very pleased with how well he is doing with a little bit of support.
That is the really cool thing about Levi- he hasn’t ever known any different and has taught his body to cooperate with whatever he wants to do. Seeing his resilience makes me so proud of him.
We also met with Malachi’s neurosurgeon this week to check his shunt function. He did a quick test by pushing on the machine and felt confident it was still functioning as it should. He agreed we could wait to do any further imaging for a bit.
As you probably remember, Malachi was an angry little elf at me for not taking him to the zoo on his birthday. Our car had some mechanical issues the night before and we couldn’t go. As promised, I took him after our early morning appointment on Tuesday and we got there shortly after they opened. I had to google the place to make sure they were even open as we were the only car in the lot! We had the zoo to ourselves which was great for my germ conscious mind (oh the irony).
But unfortunately going so early meant that many of the animals weren’t awake. Malachi looks forward to a few things each zoo trip:
- The jaguars are hands down his favorite. Right before we got to the enclosure, which was obviously our first stop, they gave the monkeys next to the jaguars Valentine’s day bags with popcorn inside. The monkeys were super excited, thereby distracting Malachi’s jaguar friends and they wouldn’t come down within his vision range. He was devastated, but I promised him we would try again before we left.
- Feeding the giraffes. But on that day there weren’t offering that option. Boo.
- Riding the zoo train. But that wasn’t running that day either.
- Talking to the parrots. But they were in their inside house enclosed fully by glass and not interactive.
- Petting the goat’s horns. THAT we were able to do, and one of them even rubbed his horns on Malachi which made his giggle.
- The crow. Yes, that sounds weird. But he talks! Only that day he was as cranky as Malachi and didn’t say a word.
As we continued winding through the zoo Malachi was getting more and more disappointed. It was almost comical how things just weren’t working out over and over and over again.
But then we had a saving grace moment that they boys still talk about 12 times a day. The chimps.
As we visited the chimps several came over to the glass to see Malachi and Levi. Then it happened…one of them pooped right in front of the boys, stuck his finger in it, and ate it. I was disgusted, as I am assuming you are now after that mental picture I just painted. But as I narrated the scene to Malachi he was overcome with joy and laughed until he couldn’t laugh any more.
Who knew that chimp poop would be the birthday memory we truly needed. Malachi also thoroughly enjoyed the pressure washer that one of the employees was using. I told him we could pretend it was elephant trunks spraying the other animals and he loved that storyline.
We spent lots of hours on the playground this week and Levi is getting braver by the day. Malachi has been trying all the different swings, trying to find a favorite.
We are entering a week of unknowns. This week is annually a really hard one for me mentally as it marks lots and lots of big surgeries and ICU stays for the boys. Malachi’s stomach perforated in the NICU and he had to have an emergency surgery we were told he might not survive. A year later he contracted the flu and the situation became very dire with a PICU stay. And this was the week for three surgeries for Levi on his complicated journey. I keep flashing back to doctors telling me that when Levi gets a cold he will end up in the ICU, and now here we are with COVID. I can’t predict what the next several weeks hold for my warriors and the lack of control is very hard for me.
I read a quote this week that has been on my heart all week, and with the new updates it seems fitting.
“When you are hanging on by a thread, make sure it’s the hem of His garment.”
There is a beautiful story in Mark 5 that talks about a woman who had been dealing with a bleeding issue for 12 years. The Bible tells us that she had been to several doctors and spent all of her money chasing treatments but only grew worse.
When she heard about Jesus, she came up behind him in the crowd and touched his cloak, because she thought, “If I just touch his clothes, I will be healed.” Immediately her bleeding stopped and she felt in her body that she was freed from her suffering. At once Jesus realized that power had gone out from him. He turned around in the crowd and asked, “Who touched my clothes?”
“You see the people crowding against you,” his disciples answered, “and yet you can ask, ‘Who touched me?’ ”
But Jesus kept looking around to see who had done it. Then the woman, knowing what had happened to her, came and fell at his feet and, trembling with fear, told him the whole truth. He said to her, “Daughter, your faith has healed you. Go in peace and be freed from your suffering.”
When I read this story I can’t help but relate to the desperation of this woman. There are times that we exhaust ourselves chasing after all the earthly solutions we can think of. We research and do all of the rational things we can find. But it still just isn’t enough.
But it takes those fruitless pursuits to build a strong faith in us. It takes those moments of repeated failures to remind us that sometimes the answer lies simply in believing that God’s power is enough.
As we enter a COVID week I am going to do my best to stay close to the hem of Christ. It is easy to let worry and my imagination distract me, but it takes great discipline to continue to remain in Christ during the scary parts of life.
Please pray with us this week that God’s power is seen yet again in the life of my boys. Pray that we get through these next few weeks unscathed and free from hospital stays and major issues. And pray that God’s peace continues to cover all four of us, reminding us that He has numbered our days we won’t be called home before He’s ready.