March 2021 Update

Since October I've been assessing each month by totaling hospital stays, ER visits, and appointments again. It feels like 2016-2019 again. If our standard is "how many days hospitalized?" then March was a great month, the first month since October that we haven't spent time inpatient.

But I don't want the standard to be *just* staying out of the hospital.

I don't really know how to talk about any of this. It sounds so melodramatic! How do I carefully articulate "this is really really hard" while also carefully articulating "we are so grateful he is still alive"?

Job's swallowing (and therefore respiratory) issues have been so acute this winter. We're not particularly concerned with COVID - it's really any sort of respiratory ailment that could (and has) send him to the hospital/ICU. He's constantly aspirating on his own saliva (and therefore constantly gagging and sometimes vomiting) so there's always "junk" in his airway and lungs.

Besides the concern of infections in his lungs, there's just the daily care associated with a feeding tube plus an increased amount of meds (and inhalers and CPT - chest percussion, or clapping - where we repeatedly hit his chest with a rubber mallet of sorts to clear his airways).

And perhaps most taxing is the "high alert" level of surveillance we've been on since October. Job really can't be alone because it's scary when he's choking and vomiting up - to him (he's terrified of throwing up his tube because that means a painful tube replacement) and to us, watching him. His brothers do a great job of watching out for them but the strain is wearing on them, as it is Seth and I. Ezra's anxiety has been especially high since Job's ER trip in January and though he has more tools to work through it than he did 1-2 years ago, it plays a big role in our day-to-day life.

During much of November and December Seth and I took turns staying awake while Job slept because we were so worried about his breathing, so comparatively things have improved. But we've had Job sleep in our arms, elevated, since October because we so frequently need to adjust his positioning or prop him up while he vomits the saliva he's choked on while sleeping. We have a sleep study on the calendar and we all expect his tonsils and adenoids will be removed, but the wait times for all of Job's upcoming appointments and surgeries has been particularly long.

This is such a weird place to sit. He's not in immediate danger. We've done that and it was excruciating! but it was also so intense at every moment we didn't have much time to reflect on how hard it was (and we also had a lot more support back then). Right now it's a season of waiting. And waiting. And waiting.

We're struggling so desperately to find contentment and joy and gratitude but it's particularly difficult to do so right now.

Job is able to articulate his fears and discomfort now, so there's an added level of heartbreak that accompanies this (so helpful, so important) ability. He asks why he has to take so much medicine, and why he has to have so many blood draws, and why he has to have to many appointments, and, most difficult of all, he frequently asks why he has so many "body problems".

For example, this is my attempt to recreate our exchange the other day (excepting his mispronounced words):

Job: "Mommy, why is my throat is broken?"

Me: "Oh, Job, I don't know. Your throat got hurt when the doctors were trying to fix your broken heart when you were a baby."

Job: "When part of my heart was missing?"

Me: "Yeah, buddy. When part of your heart was missing."

Job: "Why was part of my heart missing?"

Me: "I don't know that either, Job. I just know that when you were growing in my tummy, part of your heart didn't grow."

Job: "Why did God make my heart not grow?"

Me: "I don't know, buddy. That's the first question I'm going to ask Him when we go to heaven."

Job: "But then I got more sick and I had to have a new heart."

Me: "Yeah, then you got really sick and you got a new heart."

Job: "But I still have to take a lot of medicines. And my throat is still broken."

Me: "It's really hard to have so many broken body parts, isn't it?"

Job: "Yeah, it hurts a lot. I really hate it."

Me: "I really hate it too. It's hard for Mommy to understand it and trust God about it. It's okay for it to be hard. When it's hard that's when we usually remember we can cry about it and pray to God to help us be patient."

Job: "It's really hard to be patient. I hate being patient."

Me: "I know, Job. It's really hard to be patient for Mommy too."

{And repeat this conversation multiple times a week. Often with more medical details, because he's really really interested in the specifics right now.}