After a long two weeks our family is finally all healthy, well, and off of oxygen. Jake’s cold from two weeks ago made it through the family, hitting everyone except for Levi. There is no explanation other than God as to why Levi didn’t get it!

I know it sounds odd but it is helpful when I get the sickness before Malachi so I can gauge a timeline of symptoms and how difficult it will be on his system. When you are raising a non-verbal child each day is like a mystery, trying to collect clues and fill in the wordless gaps as best as possible.

There was a 24 hour chunk between the photo above and the photo below. Malachi started to shut down as the symptoms came on, slowing his breathing down to dangerous levels. As soon as his oxygen dropped we started supplemental oxygen and his breathing treatment regiment: nebulizer, cough assist, CPT (shaky) vest. We also kept Motrin on board regularly to keep him comfortable.

Malachi’s cerebral palsy, specifically his low tone, makes it hard for him to clear his airways. He was pretty miserable but still had a great attitude. We canceled his in-person appointments for the week and focused on resting and healing.

This weekend we were able to wean him back of oxygen safely and we are back into our normal routines! I am so incredibly thankful that we have been given access to all of his home equipment. We can run the equivalent of a regular hospital room here at the house, allowing us to stay home during illnesses like this one.

Prior to having these home machines we would have to be admitted with every respiratory illness, often staying for weeks while we waiting on him to be strong enough to get discharged. I can think back to the dozens of times we have just sat in the hospital, trying to overcome a common cold and being exposed to much worse illnesses in the process.

I am increasingly thankful for the relationships and the trust we have been able to develop with his specialists! Home is the best place for him to heal and for us to truly watch for his baseline without other factors added in.

Malachi got off of his oxygen just in time for us to attend the Make-a-Wish night at the Red Wolves soccer game in Chattanooga this weekend. Attending sports events is one of his favorite things to do. He loves the crowd drama, the chaos, and having the game narrated play by play. You can tell when he is intently listening by his eyes…I took a few pictures so you could see his engagement as Jake narrated for him.

On a side note- a shameless plug here….Malachi and Jake love to watch the Bengals games together when they are televised here in Tennessee. If any of our Ohio friends ever have access to some discounted Bengals tickets send me a message! It would be such a treat/memory for them to attend a game in person together. I would video them watching a game to share it with you but Jake might be too embarrassed by his intensity haha. Malachi shouts, laughs, and screams with joy too.

Anyway, back to the Red Wolves…

We kept the game a secret from the boys just in case Malachi wasn’t stable enough for us to go. So when we finally told them where we were going as we drove there Levi was ecstatic. He loves our family adventures, and even more when they are a surprise.

The Red Wolves is not the most accessible arena, so the only way to watch the game from inside the stadium is going through the Executive Suite, which has unlimited drinks, cookies, and hot dogs- Levi’s love language. The Red Wolves have always been so kind when we attend games to make sure Malachi can be included in the fun!

The night ended with fireworks over the stadium. It was a special night and a much needed adventure after several weeks of staying home and healing.

Prior to sick week(s) the boys had some great school days. Malachi is still coming out of his shell and we have been so happy and thankful with the huge progress Levi is making.

This week I wore many hats as mom, nurse, respiratory therapist, etc. I am not trained for a single one of those roles so we figure it out as we go, using observations I have gathered over the years from our many stays.

One particular night this week Malachi seemed very stable and strong so I tried turning his oxygen down a tiny bit. He handled the change for a few minutes, then started to dip his saturations into the dangerous stage again so I turned him back up.

As I was contemplating what to do next I thought back to the last time we were in the ICU. Malachi had a hard time bouncing back from a respiratory illness and needed high flow oxygen to help push the carbon dioxide out of his system. He started at 20 liters which is crazy high.

It took several days for us to wean him down from such a high liter. He handled the wean process well until we got down into the lower liters. I remember the respiratory therapists coming in and turning him down a liter and leaving the room. Malachi handled the change decently for a few minutes, then dropped down into the low range and struggled to breathe. My momma heart panicked and called them back in to re-evaluate if he was handling the wean safely and they reassured me that this was the only way to truly test his respiratory system. If we didn’t challenge it by decreasing the flow we wouldn’t truly know when he was ready to come off of it.

Malachi’s numbers would dip low for awhile, but as he continued to work on his breathing at the lower liter amount he would steadily find his breathing pattern and his body would settle into the change.

This process continued, as did the struggle moments in between each wean. I didn’t want to watch him struggle. I wanted to see his chest move up and down with ease. And when things were hard I wanted to rescue him. But his body needed to feel the struggle and overcome it.

This week as I cared for Malachi I kept flashing back to those uncomfortable moments for me bedside, watching him struggle through the wean process. I can still feel the panic bubble up in my belly just thinking about it.

But the more I thought about the process the more I recognized its necessity.

As I read through the Word this week I couldn’t get this process out of my mind. The process of removing the comfortable and exchanging it for the struggle with the desire for growth.

I thought about the many emergencies and moments that have happened in our lives where our comfortable was very drastically removed. And like Malachi, I sustained the transition on my own for a very short time only to realize that something had to change.

The struggle had the ability to strengthen me through leaning into the Lord’s strength or break me by relying on my own.

Faith is a choice. It isn’t a one time choice, or a moment of salvation. It is an every second of every day decision to pursue, obey, honor, and submit to God.

These trials that we face are an opportunity for our faith to grow legs and learn to walk through new waters. Like Jesus healing the lame, we are able to miraculously be given the strength and ability to walk into into the roles God has called us into. Even the hard ones.

Romans 5:3-5 “Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does it put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.”

Tonight I am thankful for the Holy Spirit that has been poured into my heart by God. I am thankful that He trusts me enough to wean me off of the comfortable and patient with me as I struggle a bit and realize that I cannot do things apart from Him. I am thankful that God has armed me with the weapon of faith as he calls me to battlefields that I am not prepared to enter.

What a treasure a walk with the Lord is. And what peace it brings in the midst of chaos.

Thank you for your prayers last week over our family.

Leah