Sometimes the medically complex world hides around the corner and jumps out at us in the most inopportune times.
This past week Malachi and I were supposed to be in Nashville to meet with his surgeons and take his special trip. But Monday morning both boys started to show full blown symptoms of something viral. I initially held out hope that maybe it would be a short illness but by Monday evening Malachi was requiring supplemental oxygen.
Our appointment has been rescheduled for mid October, the soonest available date with these two surgeons. And as you can imagine Malachi was devastated. He was looking forward to his trip SO much and we had even started packing our bags and picking out which outfits he would wear.
By Thursday Levi was completely back to his normal, but Malachi’s body is still having a hard time recovering. He is still requiring 1-2 liters of oxygen but he is interactive and responsive which is a great improvement from earlier this week.
When Levi gets sick his airway gets restricted. Usually I can tell 24 hours before symptoms hit that something is coming because his stridor gets louder and he is very noisy at night. With his vocal cords being paralyzed there is not much room in his airway, so any tiny change makes it harder for him to breathe.
When Malachi gets sick we go into hospital mode, breaking out all of our medical machines and setting up home base in the living room. When Malachi is very sick we keep him upright when he sleeps in case he aspirates.
Our medical cart came in handy and had all the things we needed to avoid a hospital stay. His cough assist machine sends pressurized air into his lungs and then pulsate suctions the air out, something that we used several times each day to try to help clear his airway. His suction machine helps get any gunk out that he coughs up quickly. His pulse ox machine stays hooked up 24/7 to monitor his oxygen saturations and pulse so we can adjust supplemental oxygen accordingly. And his oxygen concentrator is vital! There were days this week we had to stay at 4 liters of oxygen to keep him in a safe range, which is my maximum comfort level for treating at home versus the hospital.
We are continuing to trial him off oxygen each day but his body just isn’t ready to work without the help quite yet. His discomfort has also been sparking some pretty hard seizures, and Malachi body is just so tired.
Sick weeks are very difficult physically, emotionally, and mentally. I go into a survival mode of sorts and ignore the normal rules of night and day. We just do the best that we can to keep everyone alive and home. We played lots of games, watched lots of movies, and used our imaginations more than ever before. We also took did lots of baths/showers, laundry, and lots of cleaning syringes. When the kids are both sick and we are adding in Motrin to our regular meds we use 28 syringes a day (all meds for both boys are administered via g-tube).
Levi even “made his own breakfast” while I took a quick shower one morning.
Malachi and I spent some time talking through some options for a mommy and Malachi trip. Jake and I decided that since this was the second time these Nashville appointments/trips have been rescheduled that we needed to prioritize his special trip instead of waiting until October. I presented him with so many options but he wasn’t reacting very enthusiastically to any of them.
When Malachi was little we took him to Medieval Times, so I thought I would see if that was something he would enjoy. When I asked him about it he started madly signing YES YES YES! That was it…the one magical thing he was waiting for haha. When Malachi is feeling 100% he and I will drive to the Medieval Times outside of Atlanta and attend a show, stay the night in a hotel, and come back the next morning. Having something fun to look forward to has perked him up so much. He giggles uncontrollably when we talk about it and seeing that smile makes again me so happy.
We have been trying short trips out this weekend to test Malachi’s stamina using the portable concentrator we were able to get with grant money when Levi was on oxygen 24/7 as a baby. What a blessing that machine has proven to be. Malachi is only handing a maximum of 2.5 hours before his numbers start to drop. So this week will likely be another week of staying close to home.
Jake and I wear lots of hats in our community and when weeks like this pop up we just do the best we can to divide and still continue our other responsibilities. Jake took over soccer practices and games as well as Wednesday youth group but by the end of the week I was ready for some mental distraction. The youth were scheduled to come over tonight for dinner and Bible study and we felt like the kids were healthy enough to continue with that plan (with some deep cleaning of course).
Tonight we had a packed house with over 40 teens. And Malachi sat in the middle of them all, hooked up to his machines and as happy as can be. As I watched the normalcy of the reactions to Malachi it reminded me of just how blessed we are to live in this community and to be surrounded by others who have accepted our normal as their normal. What a blessing.
Over the last few weeks I have had a verse playing in my head over and over again. It is a common one that most of you have probably heard as it appears multiple times in the Old and New Testaments. But for tonight’s entry I will focus specifically on Mark 12:31. Jesus was asked “Of all the commandments, which is the most important?” And this was Jesus’ response:
“And you shall love the Lord your God
with all your heart,
with all your soul,
with all your mind,
and with all your strength.”
The response could have simply been “You shall love God.” But It goes into detail about the ways we are to love God, and when scripture does this it always catches my eye as being something important to pay attention to.
As I looked at this verse I started to process the differences between each of these things…your heart, your soul, your mind, your strength…and evaluating how I am loving God in each of these areas. It is easy to say “I love God” but do my actions reflect that love?
Two weeks ago I felt conviction over “with all your strength”. I thought about the life of Christ and how He poured himself out for others during his short time on earth. He didn’t focus on “me” time, instead He focused on doing the will of the Father. And God continued to sustain Him. He even sent angels to minister to Him on two specific occasions (Matthew 4:11 & Luke 22:43).
We live in a culture that prioritizes self. But when we are loving the Lord our God with all of our heart, soul, mind, and strength I don’t see how that fits in there.
And just as God often does, He provided an opportunity this week for me to practice loving God with all of my strength and serving Him by caring for these precious boys that He has entrusted to me. I poured out every ounce of my energy as an offering to God, and when I changed my view from obligation to act of worship it blessed me.
There is so much power in the foot washing.
And after a week of pouring myself out I find my cup is so incredibly full of a joy and energy that is undeniably a gift from God.
God doesn’t need our strength. But oh how He loves to multiply it when we willingly and gladly place all that we have in His hands.
Please continue to pray health and improvement over our Malachi.