"Prayers That God Will Not Answer"

I get tired of my own updates, especially these last eighteen months that have been so hard from a GI/Oto/Pulm perspective. Job's heart is doing wonderfully! But everything else has been really, really hard. So I stopped posting publicly because who wants to hear me say the same thing over and over?

But we're in a new season of hard and I've realized anew how much I do need the prayers of the saints surrounding us. So here's my little toe in the water update.

Job got a new diagnosis today that helps explain why his recent surgery on his vocal cords didn't fix all of his problems. It's so overwhelming and I'm just grieving hard today. 

In an effort to distract myself from wallowing I decided to catch up with my blog feed reader and came across another Tim Challies article that convicts me and encourages me.

From his post, "Prayers That God Will Not Answer," he writes:

Our confidence, then, is not in God answering every one of our prayers just as we have prayed them, but in God hearing those prayers and determining if, when, and how to best respond. If God is truly who he says he is, if he is truly our good Father and we the children he loves, we can be certain that if he does not answer, it is only because this is better for us. He is not cruel, nor arbitrary, nor apathetic. Hence his inaction must be for our good, not for our harm. (emphasis added)

I always think I've already learned this lesson but I really haven't. I struggle deeply with trusting that God is working for His glory and my good. I know it's true at the same time that it doesn't *feel* true because Job's body keeps breaking down more and more.

He continues:

Where we so often go wrong is in failing to believe that God truly means to bless us, failing to believe that his motives are only and always love, failing to wait for his timing to be right and his answer to be perfect. Our task is to trust him—to trust him in what he will give and what he will refuse, in what he will grant in a moment and what he will grant only in time. Our task is to pray and wait, pray and trust, pray and watch for him to do exceedingly and abundantly beyond all we can ask or even imagine.

I haven't really forgotten this. I'd probably say I haven't ever doubted that this is my task. I just hate it. I want a break.

But I don't get a break. I get to do this tonight as I cry myself to sleep. I get to do this tomorrow as I lay out all his new meds and figure them out.

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.

G-tube angst

Job was born missing half of his heart. If we're meeting someone new, who hasn't heard any of this melodramatic saga, this is where we get gasps. Open heart surgeries? A big deal! A heart transplant? A big deal! It's always been the other "stuff," however, that has been harder to manage. Harder to pin down how serious it is. Harder to explain. Harder to remember. Harder to treat. "My kid has throat problems" doesn't sound nearly as serious as "my kid has heart problems". And that's probably perfectly fair.

At five days old, in the first of several open heart surgeries, the nerve to his left vocal cord was severely damaged, leaving him with significant issues ever since. Swallowing issues. Breathing issues. Vocal expression issues. Physical development issues. Gross motor issues. But we've limped along and dealt with it. Sometimes I'm able to minimize how significant these issues are - often because his cardiac issues have been even more severe. I absolutely minimize these other things in favor of focusing on his heart.

And summer 2020 we sort of pretended everything was fixed. His heart was finally stable and he was finally catching up on lots of his therapy goals. But suddenly this last October his ability to swallow dramatically declined and after multiple surgeries and inpatient stays, we reluctantly switched from thickened liquids to a NG tube in December. Life with an NG tube has been difficult, these last few months, but right after Easter Job's choking and vomiting escalated and last week we made the decision to forgo the NG tube and return to thickened liquids. We know he's aspirating on them and we're watching closely and praying that this influx of fluid won't get infected. We're walking a thin, thin tightrope between the risks of dehydration and aspiration as we wait for a G tube.

When we received Job's prenatal diagnosis we realized that his physical life here on earth would be painful and exhausting, but we named him after "the Bible Job," as he would say, because we want him to be able to say, we want to be able to say, “Naked I came from my mother's womb, and naked shall I return. The Lord gave, and the Lord has taken away; blessed be the name of the Lord.” We know that God sovereignly ordained each of these trials Job has endured and we believe that He is using them for His glory and our good. But we're really weary.

We're aware how quickly Job's health can decline because we've seen it too often. He had a scary hospitalization for a respiratory infection right after Christmas that is still very fresh in our minds. Will he catch another cold and get pneumonia? What if he gets dehydrated? We're all on high alert.

Actually, in a lot of ways dealing with his "heart stuff" has been much easier than dealing with all of his other very broken systems, perhaps because these subsequent issues keep surprising us. Some of the things are relatively insignificant, like his new terrible skin allergies that popped up after he had tape and stickers on his face from December to April. But it's easiest to be discontent.

I've fought against this stupid broken vocal cord for five years. I took him to all the therapies, did all the tests, all the surgeries, all the diets, all the supplements, all the specialties. And it seemed like it worked. We were making progress. Goodness, he can talk now!! He *has* gotten adequate nutrition by mouth for five years! And, of course, as I have to remind myself multiple times a day when I get so frustrated, he's alive. I never expected we would make it to five years old. But we did! Why do I care if my kid has a G-tube if he's alive? But I do. I struggle to not make idols of Job's life or of certain broken body parts.

I'm grieving this loss even as I'm so desperately scared that we're not getting it soon enough to make it through the month of April without another ED visit. I often think that grief and gratitude are mutually exclusive. It feels so despicable to be sad (or mad!) that something else is broken in Job's body when I know so many families who have lost their babies. I know Job will get really sick again and I'll look back on this (really really hard) season and want to trade for *this* trial because it's less scary than [rejection][organ failure][ventilation][etc].

It's hard to figure out what to share, when to share, how much to share, about Job's health. I think I've been especially quiet this school year, probably for a lot of reasons, and I think I forget that I can ask people to pray for us.

We were looking at a late June date for our next surgical intervention and as Job's situation has been rapidly declining the last two weeks we've been frantically working with Cardiology to figure out how we can make it that long. Miraculously I got a call today that they're making an opening for us on May 7th and I know that's because so many people have been praying for us this last week. I needed people to pray for us, probably even especially without me asking them to. We've felt so very blessed that people are coming alongside us to give voice to our inarticulate moanings (Romans 8:26).

So now we're begging for prayer that Job would stay adequately hydrated and that his lungs would be protected and that he can safely make it through this next phase. To be honest, it's hard to imagine we won't need to admit for IV fluids, but I know that God already has a plan for this next week and a half.

We'd also appreciate prayers for life with a G-tube. Job is really excited for "a tummy tube" because he's come to despise his NG tube so much, but it's not going to be easy. Though we're longing for it right now, I know we'll quickly feel disillusioned and struggle with discontentment again. We want Job to just be able to swallow on his own! And it's hard to fight against the temptation to bitterness and self-pity that we're dealing with this issue still, and even more severely than before. Job's heart is actually really stable right now, but it's easy to forget to be grateful for this amazing mercy. Instead of being thankful for what we do have, it's easier to focus on what we don't have but want. I can preach to myself, I can try to hold myself accountable, but I know that I need the strength and stamina and joy that only the Holy Spirit can give. And right now I'm struggling to even ask Him for it.

G-tube??

It continues to be a particularly difficult road here, in regards to Job's medical trials. His NG tube has become a complete disaster. He's choking on it multiple times a day and his vomiting has escalated significantly. He's so traumatized by our attempts to reinsert it that it feels as if it's no longer an option. Even when we do get it in, he just throws it back up. And it's taking us 3 adults pinning him down while he screams and chokes and stops breathing to even try. I told the team I could try again but it feels counter productive now and they agree.

So we're trying thickened liquids again. We know that it's likely he is aspirating on thickened liquids (as he started to do in October and was still doing through December - after three surgeries!! - which is why we put in the NG tube then). Otolaryngology doesn't have much hope to offer us for the nerve reinnervation Job had done back in February 2020. It was supposed to take up to a year to begin working 

His team is trying to expedite a G-tube surgery but it's hard to make that happen as quickly as Job needs it. There's talk about just admitting to the hospital for a week or two so he can be on an IV until he can get the G-tube, as we know he has a significant aspiration history even on the thickest thickened fluids.

We're on high alert at all times. It makes me so proud! And also so worried! to know my eight year old and almost-ten year old sons can hear the differences between Job's various coughs and know when to go running for towels and a bowl he can throw up in. It makes me sob even harder to find one of them curled up in a far room crying after Seth and I have tried (and failed, lately) to re-insert Job's NG tube. What is this doing to my kids?! I hate this.

Job is an emotional wreck too. He's been so quick to cry about anything and everything that goes wrong. He begs multiple times a day for a "tummy tube" because he's so done with the NG tube.

But right now there aren't openings for an "urgent" G-tube placement. There isn't actually such a thing as an urgent G-tube placement. Kids who ultimately need a G tube are on an NG tube first. I'm calling several departments almost daily to get everyone's input and check off all boxes and advocate for Job.

Though I really didn't want a G-tube it seems to be increasingly clear that's what he needs.

Soooo. We'd love prayers that Job's lungs be protected from aspirated fluids. For wisdom to know how to care for him right now. For appointments to miraculously be available. For our older kids, especially our oldest, to cling to Jesus instead of anxiety. For Job's heart and mind and body, of course. And for God to be glorified in this trial.

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.}

February 2021 Update

I don't really know what to say when asked how Job is doing. Compared to how he was doing during his cardiac arrest? Compared to how he was doing the months before he received his heart transplant? Compared to another ER visit and hospitalization? Then yeah, he's doing ok.

But we're definitely in a season where we're all on high alert because his swallow is so incredibly poor. He gags on his own saliva. We tense at every sneeze and cough. Will one of these things make him throw up? We can't leave him alone, even in the other room.

He's stopped throwing up daily, like he was from mid-November to the beginning of January. Now he just throws up every five days or so. He doesn't usually throw up his NG tube all of the way - but usually 5 or so inches, which he usually then pushes back in himself.

I've had to hold Job down during so many different pokes and procedures which are ostensibly more painful, but it may be that nothing has actually been more heartrending than watching my almost 5 year old take a deep breath and then, through his sobs, bravely determine to push back his own nose tube.

Probably about every third week now he's thrown up forcefully enough that his entire tube has come up (usually through his mouth), which then requires us to replace the entire tube. He's quickly realized how desperate he is to keep the tube down so he tries so hard to hold the tube in his nostril while he's throwing up or he tries to stop himself mid cry or mid cough.

And his VFSS and Oto and SLP follow ups finally got scheduled. On June 8th. So we get to do this for quite a while longer. Perhaps I should have been more intentional about scheduling them back in December but honestly I was sick of appointments and wanted a break. We won't really have a "break" - we're doing GI, Pulm, Transplant and sleep study appointments all in the next two months. Originally I was hopeful that some more time would help but things aren't really getting better. Well, things are better than they were before his second set of gel injections! But he's still aspirating on his own saliva so it seems pretty obvious he won't be cleared for even thickened liquids by mouth. I know I need to be hopeful and patient and trusting. But it's pretty difficult some days. Or some months. Like this month.