This week has been a hard one for our Malachi as he has been having a little trouble maintaining his oxygen levels. This has been a mystery as he isn’t displaying any outward signs of sickness but he does sound a bit junky in his throat.
Unfortunately this change happened within 24 hours of his scheduled pulmonology check up (the lung doc). We had to be there bright and early and Malachi had stayed up until 4am the night before. So I let him sleep as long as possible and then put him straight into the car to make the one hour drive to the hospital. I checked his oxygen right before we pulled out of the driveway and he was a sturdy 94. But when we checked into the appointment his oxygen was hanging in the mid 80s.
It seems that some of the mucus in his throat shifted on the drive and settled, making it difficult for him to pass air. Usually 88 is the lowest we let it go without intervention so the respiratory therapist was brought in and started some supplemental oxygen. When that didn’t seem to help they gagged him with a catheter tip which caused him to cough up some junk in his throat. Thankfully his levels popped up into a safe zone after that intervention but the whole incident led to some hard conversations with the doc.
I am not mentally prepared to try to summarize things. But long story short, we now have several tanks of oxygen, an oxygen concentrator, a medical grade pulse oximeter, and a portable suction machine that needs to be with us to prevent being admitted in the future.
This did some unexpected weird things to my psyche. As you know we spent years dealing with oxygen tanks and concentrators for Levi and sending those items back to the medical supply company when he no longer required them was such a victory.
As I watched them bring in tanks again and fire up the concentrator the hiss of the machine made me queasy. The triggers in our world for my anxiety are very sneaky and very prevalent.
In addition to the square footage all the extra gear takes up, it also adds a whole host of refill items to call in each mont: cannulas, tubing, sensor strips, catheter kits, suction machine parts, and the list goes on.
For now I am trying to keep Malachi’s airway as clear as possible by using his cough assist machine in the mornings and we also started him on a new allergy medication. He is still just a tad uncomfortable and his oxygen levels vary throughout the day. He is also not sleeping well at night, so I am hoping whatever is aggravating his system can disappear quickly.
Because of his instability he wasn’t able to do all of the fun things brother got to do this week, so we tried to make up for it with lots of special treats.
Levi and I headed to vacation Bible school this week which kept our evenings pretty busy.
I taught his age group and really this was the first time I had been in an ”educational” environment with Levi and his peers. The first night they worked on a craft that involved coloring and I couldn’t help but note the very stark contrast between Levi’s ability compared to his peers.
To be honest, it set me into a bit of a panic as I started to wonder why. Is it the spots of brain damage? Is it because I haven’t challenged him enough at home? Is it due to his vision being compromised? Or his cerebral palsy affecting his fine motor skills? I had to talk myself down a bit and remind myself that it doesn’t matter if he can do age appropriate things. He is a walking miracle and he will move at the pace God sets him on.
This week a Facebook memory popped up of Levi from 2018. Seeing this video reminded me of how good God has been in our story with Levi.
And socially this kid is a hoot. We still have the youth over to the house often for dinner and Bible study and watching him with the ”big kids” makes me smile.
I am struggling with mom guilt as I realize I don’t have any post worthy photos of Malachi from this week; it has been such an up and down week for him. But I do have this sweet photo from his school a few weeks ago.
Speaking of school, we have made the decision to homeschool Malachi next year. With the morning routines we have to do with him to help him breathe well it is very logistically difficult to get him out the door to go anywhere before 11:00. This year he was only able to attend school maybe 12 times throughout the year, and even though he thoroughly loves it we just have to find a different route for Malachi.
We were approved this week for an Individualized Education Account through the state that we did in 2020. This puts his state funding towards his education on a debit card for us to use for homeschooling. We are able to hire tutors on it and get him a curriculum that best suits him. They are incredibly strict (as they should be) on what it can be spent on but it helps us create a school year that is in Malachi’s best interest.
I often get asked about Levi starting school, and especially after this week I don’t think he is quite ready for that yet. In an ideal world I would put him in a local Christian school down the road for Kindergarten but I will likely end up homeschooling him as well.
Like I mentioned before, the equipment delivery day stirred up some major emotions. As each piece was brought in I had this reality check that these pieces will likely not leave my house ever again. They will now become a part of our landscape as we build a small hospital for our Malachi to live out the rest of his life. It served as a reminder to me that Malachi’s health will only continue to grow more complex and out of my reach to ”fix” without these devices. It took me down into the valley of the shadow of death again and visits to that valley are so humbling, as I realize my true helplessness as Malachi’s mom.
Ugh. Such dark thoughts. Such desperation within my soul, it makes it physically hard to breathe.
But those visits into that valley aways circle around to the hope that I have in Christ. I know I use this verse often, but God has been refreshing my weary soul through it so much lately as I cling to its words.
2 Corinthians 4:16-18 So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.
This week I have found myself praying over Malachi’s death. Not praying for it to happen, but praying that when the time does come that God takes him heavenward in a way that is covered in His peace. As I have been praying these prayers my mind flashes back to so many pivotal bedside moments in the hospital. Moments that I was sure Malachi was making that journey home.
When I became a mother I never imagined that I would so frequently be praying over my child in this way. It feels…just…wrong to even utter those prayers. But they come from deep within me, from a place I didn’t know existed before I became a mother.
What a faith building and heartbreaking journey these last 9 years have been. And I pray for decades more with my sweet Malachi, watching God perform tiny miracles day by day in his life.
I hope that your sideline seat watching our lives through this blog has been able to spark your faith and perspective as much as it has mine.
Ephesians 3:20-21 Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.