I feel like I left you on a cliff hanger last week as Malachi was struggling settling back to normal. Monday was another rough day for him so I broke down and scheduled another visit to the doctor. With his random fevers we were very suspicious of pneumonia. I made the appointment for Monday afternoon when Jake would be able to leave during his planning and watch Levi…the last thing we want to do is expose him to germs unnecessarily.
Malachi’s CBC (complete blood count) came back very average and normal but the doctor did think that she could hear some crackling in his left lung so we packed up and headed out to get a chest x-ray. The radiologist reported that one lung looked a little hazy but without the bad white blood cell count to verify an infection we didn’t proceed with any treatment. I felt better knowing that things weren’t in emergency mode, so I am glad we went.
Tuesday morning I packed up the crew bright and early and headed to the hospital for Malachi’s follow up appointment with the surgeon. I told Malachi on the way there that he was going to have to let the doctor mess with his tummy a bit and he kept signing “no”. So I did what every good mom does…I bribed him with a trip to the zoo. We had another appointment at 2:30 across town so we had some time to kill.
After he knew there would be an adventure after his tone quickly changed. After the hard few weeks he has been through I thought I needed to do something to lift his spirits and when November gives you a 70 degree day you might as well take advantage of it!
Malachi was so brave and stayed very still while the surgeon took out his stitches. All of the incisions have healed up well and while I hate the tube with a passion, I am glad we are over the healing hurdle of that first week. He is still very sensitive and cries a whole lot more than normal but it gets better each day.
The appointment went relatively quickly. The hardest part has been waiting room conversations lately as it is testing my ability to offer grace (not proud of that struggle). There are a lot of people in our world that don’t know the polite way to ask about the boys. I get nice comments like “Your boys are beautiful!” and then I get these:
“So do they both have the same thing?”
“Does he bite (referring to Malachi)?” Hmmmm.
Off to the zoo we went, and as we checked in with the front desk they handed me a schedule of the day’s events. It was 11:20 and there happened to be a snake meet and greet at 11:30. Malachi has been OBSESSED with snakes (and dinosaurs) lately. He has several toy ones that he likes to hold and play with so when I saw that schedule I knew we had to go!
Thankfully we were the only ones at the meet and greet so Malachi got 15 uninterrupted minutes with a 12 foot python. I showed him where the snake was and when his hand touched his back that sweet Malachi smile lit up his face with such joy. I moved my hand away and told Malachi that he could still pet him if he wanted and he independently reached out and pet the snake for several minutes.
It was so wonderful to see that smile again.
We left the snake exhibit and as we walked by the giant lizard it ran over to the glass and began banging his head on the window at Malachi, who started giggling uncontrollably at the “dinosaur lizard”.
Malachi is still legally blind, but in some low lights he can catch movement and shadows with his eyes. The day was very overcast and it made my heart happy to see him searching for the animals with his eyes. And thank you dinosaur lizard for getting close enough for Malachi to enjoy your company. Even though you were a little freaky.
We went from there to the monkeys, who also ran over to the glass to see the boys. I don’t quite know what the draw is but if you ever want to get up close with the animals just join us for a day at the zoo- they always come running!
Levi was not amused in the slightest. And desperately needed a nap.
And it wouldn’t be a zoo trip without a stop by Malachi’s favorite big cats, the jaguars. That is where I took this video, which has had me laughing all week long. This was the perfect summary for our day at the zoo:
The trip worked wonders for our sweet Malachi and he was close to being back to himself by the time we left. I think he just needed some adventure to focus on.
We tackled physical therapy and feeding therapy for both boys, and even horse therapy this week. With Malachi’s hip and foot surgery coming up next week I wanted him to have one final session with his horse Chica! When I asked him if he wanted to ride his horse he signed “YES” very adamantly and we watched his cues closely for what he could handle.
The week started to pick up momentum towards being a good one. Then Friday rolled around and we had the first sneeze…the warning sign for something brewing. I cringed and waited and sure enough Levi came down with a nasty cold. The rest of us were fine but as you know, it is hard to isolate one kid while being a caretaker to another. By Saturday morning Levi was much much worse and Malachi started with his.
Our weekend has been a re-run of last weekend’s “Should I stay or should I go” game as we make pros/cons list for a dreaded trip to the emergency room. Malachi is handling this sickness decently but Levi is down for the count. He has been running some high fevers, but is still SATing well with his oxygen. I cranked him up to 1 liter and he is still in a safe place but sounds pretty rough. They both have a cough that would send you running. Levi is also throwing up about 12 times a day.
And I am thankful for tile floors and a washing machine.
I am confident that if I take Levi in like this we will be admitted and possibly put back on the ventilator for his work of breathing. But his baseline work of breathing is what we go by and honestly it isn’t that much worse. I promise you all, if we even get slightly freaked out I will make the trip. Just trying to hold off until tomorrow when I could possibly get him in for a CBC and an x-ray like big brother.
The doctors in Cincinnati have told us numerous times that when Levi gets a bad respiratory infection to expect an ICU stay and for him to be put on the vent. We are just praying his body continues to fight this nonsense!
So let’s talk about the next two weeks. And let’s pretend that everyone is normal and healthy as we go into it.
Tuesday night I have booked a hotel room just outside of Nashville in preparation for our big appointment day Wednesday at Vanderbilt. It will be just the boys and I, and I just felt that with my lack of sleep, a 4:30am drive to Vandy (three hours one way) followed by a long day of appointments then the return drive home was not a good idea. Yes, a hotel stay with these two is a brutal thing but it seems to be the only safe option.
We are trying to save Jake’s vacation days for emergencies as we tend to have a whole lot of those in our life.
If one or both of the boys are still sick we will be re-configuring the plan but we truthfully really need this to work. Please pray with me that their bodies are completely healed by Wednesday morning for Malachi’s pre-op appointments. No pneumonia brewing…just immune systems doing their jobs well!
Malachi will meet with the orthopedic surgeon, the anesthesiologist, and get a CT scan done. The appointments begin at 8 and last until around 3. I will go back alone with Malachi the following Tuesday (November 20) for his surgery.
In addition to this full, busy day on Wednesday, Levi sees the eye doctor on Thursday and gets his first synagis shot on Friday. Synagis is a medication that helps lessen the effects of RSV should he contract it. It is extremely expensive and reserved for only immune supressed kids or children with lung issues. We are very thankful that he qualifies for the injections and will get them once a month through RSV season. Insurance is completely covering the bill, which is a miracle in itself!
Each of these appointments are about an hour away so we will be logging some road miles this week. I have went ahead and canceled all of the therapies we have scheduled for Monday and Tuesday so we can just focus on getting better.
We are all very exhausted. We were coming off a rough week anyway with surgery, and then got hit with two sick medically fragile kids. I won’t be able to spend too much time with the devotional thought this evening, but definitely feel like God has laid some things on my heart to share with you.
Way back in July I purchased tickets to take some of the girls in my youth group and their mothers to see Sadie Robertson in Chattanooga. If you don’t know who she is, she is the daughter of one of the men from Duck Dynasty (think long ZZ Top beards). I was running on zero sleep and truthfully dreading going but needed to drive the bus and get my crew of 22 there. Jake geared up for war on the home front and I reluctantly left.
Sadie is a wonderful, God anointed speaker and I highly encourage you to look her up and hear some of the things she has to say. The message was geared perfectly for my teenage girls and being in the presence of God felt refreshing. As I looked over the rows of my youth group, my fellow sisters in Christ, I realized something….
I don’t pray for others nearly as often as I should. Most of my prayers center around my world, my kids, my needs. I don’t often take time to pray for others. But the Bible tells us the Holy Spirit prays on our behalf and I am confident that prayers over the things that burden me are making it to the ears of God without me even speaking them. So why do I not take the snippets of time I do get to focus on formulating a prayer to lift up someone else?
I spent most of the evening praying over these teenage girls that God has placed in my life. As I looked at each one of them I thought to myself about their futures and the trials that each of them might have.
The devil shows no discrimination. Your wealth, your status, your list of good deeds…nothing exempts you from attacks from the devil. Nothing takes you off of his radar. In fact, when you are a child of God it puts a bulls eye on your back as he is jealous of the love you have for God.
But in the same way that the devil shows no discrimination, neither does God’s love. There is nothing you can do that makes you undeserving or unworthy. Nothing takes you off His radar. He seeks after the flawed, the imperfect, the burdened, the ones with a past. He seeks after you with a love and a compassion that nothing else in this world can offer.
Lately I have been so focused on the compassion of Christ. Oh how I wish I had eyes to see the world as He did. I wish my eyes could be drawn to the situations that need a burst of compassion, and give me the ability to meet those needs.
God had a word for me this week too. I had to look it up after He laid it on my heart…
Colossians 3:23-24 Whatever you do, work at it with all your heart, as working for the Lord, not for human masters, since you know that you will receive an inheritance from the Lord as a reward. It is the Lord Christ you are serving.
I thought about this verse and tried to pinpoint which areas/roles of my life are done as if I am serving Christ himself. There are many times when I care for the boys that I am filled with an overwhelming love, knowing that I am serving them as Christ would. But there are just as many times I complain and trudge through my day.
As I sat at the event on Saturday I started to process what a day would be like if I treated everyone as if they were as valuable and as worthy as Christ himself. What a impact that type of living would have on our world. And what an imprint a life like that would leave on hearts.
I have personally challenged myself this week as I go through an emotionally challenging one to serve others as though I am serving Christ…at the pharmacy, at the drive through window, with my youth group, with my husband, with the doctors I will encounter. It will not be an easy challenge.
But if we want to be a light to our world we have to be willing to tackle big challenges.
Please lift up the Carroll crew in your prayers this week. In addition to some wild schedules, it is also Levi’s birthday week (on Wednesday). I am purposefully not spending much time on that one in this blog because I don’t think I can handle the emotions that reminiscing will bring tonight. But next week…oh goodness.
Thank you for checking in on my sweet boys and thank you for praying for a complete and total healing on their bodies. That Levi’s vocal cords would awaken and Malachi’s brain would be restored!
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Praying for you and yors tonight.