This week we were able to tackle some big things on our to-do list medically.
Back in December Levi absolutely bombed his sleep study by not even letting us get the wires on him. After wrestling with him for a few hours and not succeeding at getting a single lead on his head I packed him up and went home.
I knew this wouldn’t go over well with his doctor team (Chattanooga or Cincinnati) so the next day I called each of them to see if there were any alternatives that were a little less invasive that we could try instead of trying to repeat another sleep study. Cincinnati suggested a home pulse oximetry study and we agreed to try that route.
This week I was able to go and pick up the equipment needed to do the study at home and worked to sneak it onto him while he slept. The machine recorded his results and will report them to the doctor, who will then in turn call me with a summary. But from what I could tell on my spot checks throughout the night he stayed around 96 while sleeping (100 being the best of course, and under 93 being a little concerning). I am very curious what his levels were in his deepest sleep cycles.
We were able to get 5 hours in before he woke up and tore the machine off.
With Levi’s paralyzed vocal cords, when he is relaxed at night his airway is also a little more relaxed causing sleep apnea. It used to make him breathe very loudly at night but in the last few months he hasn’t been squeaking in his sleep and we have been able to wean nighttime oxygen.
We have been trying so hard to get Levi on Malachi’s therapy horse, as the sessions would be so good for his type of cerebral palsy. Each week he gets more and more comfortable around the horse and will take a lap or two; Malachi isn’t a big fan of sharing his horse with Levi but has been a good sport.
He has also been getting more comfortable with the barn cats which is huge!
I wish I had some sweet pictures of Malachi on the horse but we tie my phone to the saddle so he can listen to music while he rides.
Malachi has had a great week, staying at school three days in a row without issues. His original stomach medicine is finally in stock and it has been making such a big difference in his comfort throughout the day. His med is a 24 hour delayed release one that works all day, and the replacement we were using while it was out of stock didn’t work that way.
He is growing up so much…I can’t believe he is 7 years old.
While Malachi is at school, Levi is at the office with me. While he is an absolute doll he definitely kills my productivity.
Our boys soccer team played games Thursday, Friday, and Saturday but with the cold temperatures I ended up watching from the car in the parking lot for most of them. Everything is an adventure for Levi so he didn’t mind and Malachi might be the most easy going kid you will ever meet.
This week I have caught myself stressing a bit more than normal. We have been having some issues with the boys insurance, all correctable issues but require me to make a lot of phone calls and file a lot of paperwork. In the meantime we are getting some pretty enormous bills which can look daunting.
Adding onto that, we have recently started a few projects around the house to enhance Malachi’s life which has caused us to dip into savings. And while I truly feel at peace about the decision to proceed with these projects, the what-ifs launched an attack in my mind…
“What if Malachi’s shunt malfunctions and we have to pay for an emergency brain surgery next week?”
“What is Levi’s oxygen study comes back and we need to do some more surgical interventions in Cincinnati (out of network)?”
“What if we end up getting stuck with these incorrect medical bills and that money we used for our projects will have been desperately needed to stay out of medical debt?”
As these what ifs started to swirl in my brain I could feel my heart rate beginning to rise. I was pulling up to the house and when I opened the mailbox to check the mail there was an envelope inside from a random church in Ohio. I opened it up to find a check for $1,000 and on the memo line it simply said “gift”.
I actually started laughing to myself after I opened the envelope, as literally 10 seconds earlier I was so anxious in my spirit as I played the what-ifs. God’s timing is such a special thing.
As I look back on our walk with two medically complex children I see God so obviously present. He is continually providing for our family in such beautiful ways, yes monetarily but also physically, emotionally, and spiritually.
I think back to the Israelites wandering in the desert for 40 years, God providing quail and manna for then to eat as they wander towards the Promised Land. Even when God was literally raining food down to them they doubted his provision in their lives.
So often I am guilty of the same thing. God provides time and time again, opening doors even when they look sealed shut. But things get stressful and I begin to doubt, seemingly forgetting about the many times he has provided in the past.
I guess that is my control freak nature trying to creep back in and grasp instead of giving it over to God. I pray that I can walk boldly with God, trusting Him instead of side-eyeing Him and secretly questioning what He is up to.
Today I am thankful for His grace. He sees me in my doubts and my mind wanderings and He reminds me that He is always meeting my needs even before I recognize them.
And now for a bit of humor mixed with reality…
Everyone has been asking me if the coronavirus is making me anxious, as we have two immunocompromised kids. The things that the CDC are recommending people do to avoid contracting the virus are things that we have already adopted into our daily routines anyway so it doesn’t really change much for us.
I am also finding comfort that there have not been many pediatric deaths from the virus, and professionals are saying that most children have already had a strand of it and built up more of an immunity. Interestingly enough, Malachi had a different strand of the coronavirus when he was sick in January! I remember the doctor reading the report from his bloodwork and telling me how obscure it was and saying that it mimicked the common cold.
And just to clarify, Malachi has never had the strand of the virus that is all over the news.
This time change is hitting our crew hard. Their little bodies have to adjust to getting their meds an hour earlier and their feeding schedules are all out of whack. We are off to bed!
Thank you for taking the time to check in on our little family and for listening to me ramble. I hope your takeaway from today’s entry is that God is good ALL the time.
4 thoughts on “What-Ifs”
Hi Leah and Family!
I started following your journey last summer while my son was in the NICU for a month. He has a skeletal dysplasia, a yet-to-be diagnosed form of dwarfism, which goes hand in hand with a plethora of health issues (mainly respiratory). A while back you wrote that it’s not true that God only gives people what they can handle, but through the journey, gives us the tools and skills to handle the difficulties that arise. I really feel that! I am currently sitting in the MICU at Children’s Hospital in Boston, while my now 8 month old sleeps with a CPAP, after dangerously low oxygen levels indicted during a sleep study on Friday night. Boy, that was traumatic. And I know you’ve been through it. More than once! But we get through it and keep on. Anyway, enough rambling. Thanks for sharing your story and being so honest and vulnerable. God bless you all. 💕
The Boys are getting so Big. Levi and Malachi look like Movie Stars with their Sunglasses. So glad Malachi is on a stomach med that works for him. His smile is infectious. Love and hope to your family
Leah, my own medical complex journey wears me out n gets me down, n then I read your weekly journal n feel so ashamed! You are so amazing n I know that God’s grace is sufficient for each person n circumstances. I totally understand Levi’s objection to having a sleep study done! However, I truly caution you to not believe the pulse oximeter results for a reliable rest. It is an alternative to the wires, but from personal experience it DOESN’T give accurate results. It said that I was sleeping an average of 8-10 hrs a night, even claiming I was asleep while I was wide awake (at 12am) n in my kitchen eating to raise my blood sugar from 23 to a higher range! No sleep apnea or brea6issues were detected n 6mos later I had to have the real study done n it showed I had 5 types of sleep apnea!! Very unreliable. Just a word of caution on your part,so you’re not relying on those results as 100% accurate n then find out something completely opposite in the long run. No matter the results, I know God already is there n has everything in His hands for the good of Levi. God bless your family n may your week be filled happiness. Love n prayers always, Jessica FosterSent from my Samsung Galaxy smartphone.
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