Meltdown and Nightmares

Over the last two or so months I've weekly been waking up in the middle of the night in a panic, fearful I forgot to give Job his night dose of transplant meds. I usually get up and go check that there are empty used syringes and I sit there and watch him and make sure I'm fully awake and absolutely sure I did give meds.

But tonight's dream was even worse. I dreamed that I hadn't given Job's immunosuppressant meds for days and days and upon realizing this went and checked on him and he was in rejection. And then I really actually woke up from my dream and did my whole thing where I check that I gave meds and check his breathing and so on. It felt like the most realistic dream I've ever had, with so many specific and perfect details.

It's now been almost two hours and my usual prayer>worship music>Bible audio>audiobook>silence>read a book>do a chore regimen hasn't help the panic subside. Of course, the idea that these new-to-me nightmares are now intensifying and will continue in future weeks doesn't help.

Laying here, I realized I never updated on Job's G-tube so I decided to pull out my computer and write up a blog post. But I guess I have a lot to say, so I decided to split it into two posts. Here's the official May (and G-tube) update: https://frightfulsheart.blogspot.com/2021/05/may-2021-update.html.

Often, especially this year, it has not been helpful to type out what I'm thinking or feeling. To be honest, I've tried to hold myself to that maxim "if you can't say anything nice, don't say anything at all".

But sometimes I do need to process "verbally" if for no other reason than for me to later be able to read my agonized musings at a later date and then be able to remember what was hard about this particular season of life. I don't want to purge the record of this hard year. I want to be able to someday look back and remember how painful this was.

I've said this so many times, but adult life, taking care of Job life, has made me so much more sympathetic to the Israelites' moanings about Egypt and the prominence of the Exodus and desert wanderings and longing for the Promise Land story all throughout Scripture. I used to get so very tired of hearing about the Exodus again and again, but now I can't get enough of it.

I had a meltdown this week.

Job had an overnight sleep study. It was one of those days where I'd been working, at baseball practice, cleaning house, homeschooling, and then we headed up to Bellevue for a "date at a sleeping hospital". We got a special treat and checked in (of course, it happened to be at the same complex where my grandpa died almost 5 years-to-the-day previous - oh, and during a week when my grandma is in the ICU). 

Job did really well, watching Teenage Mutant Ninja Turtles (a new-to-him/us discovery based on some story Seth recently told about his own childhood), and chatting with the sleep technician as he pasted colorful wire after colorful wire all over Job's arms and legs and head (I think he had 10 wires on his face and 20 in his hair). But when they brought out a nasal cannula Job lost it. He was just hysterical. Shaking.

I was able to get him to calm down and fall asleep and then they came in an put on the cannula as he slept. But I couldn't calm down enough to sleep. And Job didn't sleep well, waking up and calling for me several times.

They woke us up at 5:30am and got us checked out and we found a doughnut shop and sat at Lake Washington and watched fish jump. Job was so excited by the idea of a lake named after the place we live. We drove home, having another one of those super intense conversations about all of the broken parts of his body and about the baby who died and whose heart he has as his "new working heart".

We got home and as I started making breakfast for the big boys, Seth told me about a part of his day, the day before, wherein someone was tired of wearing a face mask. I just got so angry. And then so shocked I was so angry. And then so very sad. I'm surprised I got so worked up but it was probably pent up emotion exacerbated by scant sleep. Seth wasn't at all trying to provoke me. And it's not like I enjoy wearing a mask myself or see them as oh so effective.

But I have spent so many many hours, these past five years, watching Job struggle to breathe. The last seven months have been excruciating, trying to decide daily which risk I want to deal with: the risk of pneumonia or the risk of dehydration? And your hardship is wearing a mask??!

And if it's not complaining about CDC requirements, then it feels like it's often mockery of the people who are trying to figure out how/when to follow them. So I'm really reluctant to re-enter into society, or at least my old circles, not really because of germ exposure but because of the divisions that have become more obvious and, most troubling, heightened by vehement pontificating (not just on the internet, though certainly it's probably least kind when typed).

I can, and did (and will again), then talk myself through all the things I know to be true about trusting God's sovereignty and love for Job, about trial and the very individualized sufferings He has called each of us to endure for His glory and our good, about extending grace and care towards others, and so on. It is my responsibility to "be quick to hear, slow to speak, slow to anger" and "bear all things, believe all things, hope all things, endure all things". Actually, we've been working through Ecclesiastes (which couldn't have been more timely) and I'm trying to repeat verse 7:21-22 to myself daily: "Do not take to heart all the things that people say, lest you hear your servant cursing you. Your heart knows that many times you yourself have cursed others."

Life is really beginning to revert back to old normals. So many things that were on pause for most of this year are now lurching back into place, though they do look different in many respects.

I think I've established the fact that I'm nervous. I expect that it will really hurt. It already has hurt. I'm grieving a lot of "little deaths" of how things were, of how I want them to be, of relationships that are no more, of relationships that are so different, of decisions people around me have made, of decisions I have made.

I want to be gracious. I want to focus on the Most Important Things. I want to be willing to open myself up to hurt again, to exhaustion and frustration, because I want to be willing to interact with people again. (Or maybe I'm still in the stage where I want *to want* to be willing...) I feel immensely disappointed in and hurt by Christian conservatives because their tone has been so strident to my ears this long winter, try as I might to hide in a corner with earplugs (so I'm preaching to myself constantly and finding many of Tim Challies' A La Carte links immensely helpful in this quest, like https://www.feedingonchrist.com/blog/post/what-the-church-needs and https://the-palest-ink.com/2021/04/12/please-stay/ lately).

I don't know how to carefully reintegrate with a heart that is slow to take offense and quick to love. I don't know how to help my kid who has loved the lockdown and been so rejuvenated by the decreased face-to-face (actually, loud volume to ear?) pressure to begin to reintegrate. I don't know how to help my kid who suffered the deprivation of lots of people time!! to reintegrate. I don't know how to make plans for the summer, let alone coming fall. And it all feels necessary to finally sort through now that Job is finally (seemingly?) stable.

[Speaking of which... Maybe next time I can't sleep thanks to a nightmare I'll finally finish the draft post I've had sitting here about the Challies family and how reading about their grief this year has been such a balm to my soul and model for me.]

May 2021 Update

I completely forgot to update on Job's recent surgery!

The surgery itself went really well. He has a lot of scar tissue so there was more bleeding and bruising than the surgeon expected (which ultimately translated to a pretty long recovery pain wise). Job was SO excited going into the surgery (because he hated his NG tube so much). I think the doctors and nurses were pretty shocked by his enthusiasm in the pre-op room!

But Job had a rough time in the PACU (recovery room) as he typically does. Precedex really does a number on him and he didn't wake up well or quickly enough and his blood pressure dropped and he needed blow by oxygen and there was a lot of activity and talk about going to the ICU. I say all of that here, now, because I told most everyone his recovery was "fine". Because it was. We eventually made it up to the floor and he stayed on oxygen and he went home the next day. That fits the definition of fine. But it's a lot of work to get there because it always is. Job never follows expected timelines or outcomes.

And his digestion and ability to control his bladder and bowels have been set back significantly, which is demoralizing to him as a recent "potty training" graduate. And, of course, there's all the school and housework stuff that fell behind, after a mere 24 hour hospitalization, because there's a lot of emotional stuff we all get to work through.

I guess I'm trying to say that sure, it was a simple surgery. It really did go well. But there's such a big cost even for something this small because it's an accumulated cost.

And what I really want to emphasize is how AMAZINGLY well his lungs sound now, since we're just completely bypassing his stupid broken throat and putting fluids directly into his stomach. WE ARE SO RELIEVED! It is GLORIOUS to hear him breathe so well now.

I've felt such relief. Such sweet, sweet relief these last couple of weeks because it finally feels like he's kinda sorta safe now? I still hate the fact that he needs a G-tube and it would have been really hard (impossible?) to bear its necessity if we'd just gone straight to a G-tube in October (ok, or any of the other times it was suggested since May 2016), but wow it's been life changing. Thank you, Jesus, for providing for us in this way!

He's pretty sad to not get much fluid by mouth (he's not supposed to have any but it's hard to have zero tolerance because his mouth feels thirsty and he's so jealous of everyone else) but he also really does recognize how much better he feels now compared to a mere month ago. He's regaining energy (amazing how much better you feel when your lungs can fully fill with AIR) and is sleeping much more safely.

He also officially graduated from preschool at our homeschool co-op (though he missed at least 50% of the class this year) and is SO excited to start kindergarten. He's writing letters constantly and making lists and stories on whatever scraps of paper he finds all day long. He wants to learn how to read so badly and asks me to help him do so daily.

I have to hold my expectations loosely, which continues to be really hard for me to do, but we're starting to feel more hopeful that he can breathe more safely and be less susceptible to respiratory infection and begin to gain weight again and rebuild his energy and endurance.