"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.

January 2021 update

I don't think any month could be as difficult as December 2020*. There are just some months where everything feels so panicky. So dangerous. That was December 2020.

Of course, in contrast to a cardiac arrest or RRT or heart failure diagnosis or ambulance transport, I can acknowledge that December 2020 wasn't *actually* as dangerous as past months. But it felt like it was right on the edge of tipping into that "really dangerous" level. Job's lungs were so wet but he was also getting so dehydrated because he couldn't stop vomiting. We had three hospitalizations, one of which started with an ER visit.

So in contrast, January 2021 feels pretty good. We have yet to head up to SCH. Job's throwing up less - a lot less, actually. Ezra's anxiety is starting to spiral. I feel like I'm still in some kind of fog of exhaustion and stress. Seth and Isaac always seem like they're unaffected even though I know that can't be true. Job cries really quickly and easily and is VERY wary of anything that could mess with his tube. Though, of course, crying so quickly about everything causes him to gag and and gagging often means throwing up. So we're still on high alert.

Seth's birthday. Job wanted to make THREE cookie cakes.

One of our 2021 family goals is do take a hike every weekend, so we've already been enjoying that. Of course "hiking" is probably a subjective term. We're not really doing particularly long or strenuous hikes (especially because Job tires really easily so Seth usually carries him). The big boys transitioned back to school so smoothly, which was such a huge blessing to me. I feel like this has made everything else even possible this month.

I'm working really hard to be more observant of the many things I have to be thankful for. This fall I've really struggled to acknowledge any gracious provision - actually, I don't even want to. I just want to think about all of the hard things going on and ignore or minimize all blessings. That has to stop.

*Weeelllllllll, except April 2016, September 2016, March 2017,  August 2017, February 2018, July 2018, September 2018, October 2018, November 2018, March 2019... really, we've had quite a few worse months but not for a while.

End of December hospitalization

Thursday, 3pm

We're home! He's actually showing more cold symptoms now rather than when he was in the hospital - a snotty nose and just more tired. It's hard to say if his cough truly changed because he always coughs and it always sounds a little wet.

After playing (and getting tired) with his brothers, he really wanted to put together his Lego set he got for Christmas. Yay for being home!

Wednesday, 12pm

Job didn't need oxygen through the night! Woo hoo! That bodes well for discharge. He's extremely grumpy today and everything is frustrating him (which is actually probably a sign he's feeling better). I've been trying to order him different foods for variety as well as to expand his palate and today's "new food" was a cinnamon roll. He loved it and asked for a second for lunch as well. He's also been devouring box after box of strawberries.

Tuesday, 3pm

Pulmonology came by yesterday just as Job was finishing some food and he coughed while he was eating. I wasn't concerned because he always has a baseline cough, but they were concerned that even solid foods were unsafe for Job. Speech came by to assess Job while eating solid food and he "passed". Plus we have three VFSS (swallow studies) in the past 5 weeks showing him to safely swallow purees and solid foods. I appreciate their attentiveness but I also can't imagine taking away foods by mouth from Job, so I'm relieved Speech doesn't see the need to do so.

Job needed oxygen during the night so we almost certainly earned ourselves another night's stay but Pulmonology thinks he has sleep apnea and might actually be desatting every night so we might just need to go on at-night oxygen for the next couple months until he has his sleep study and CT scan and Pulm clinic follow ups.

He got a new toy and we're rewatching The Secret Life of Pets 2 yet again so he's relatively content. He's only asking if we have our [discharge] papers once an hour instead of every five minutes, so I do think that's telling that he's not feeling all the way better. He's still not showing any obvious signs of a cold.

Monday, 5pm

Pulmonology came by and spent a lot of time reviewing Job's medical history and then talking through options. Then they came by again and suggested a "long term" plan which sounds pretty good - maybe even just because it's a plan! I've been wanting more of a plan than "we'll just have to see" but it's not entirely Transplant's wheel house to make such an elaborate feeding/breathing plan as it is in Pulmonology's (and it's definitely not Otolaryngology's "thing" as I've realized the last two months). Transplant did ask for a Pulm consult a few weeks ago but we were waiting for an outpatient opening. Honestly, I've been dreading talking to Pulm because I knew they were going to strongly suggest a g-tube. But these last weeks have been hard enough that I'm slowly warming up to the idea of a g-tube.

We didn't have enough time to pack carefully yesterday so we just brought all his Paw Patrol toys, whereas usually he only gets to bring one or two. But still, after 24 hours of sitting in a hospital bed with "only" Paw Patrol toys Job was really excited to get a little plastic toy truck to build.

Monday, 1pm

Rounds were "boring" (which is a good thing). Is this a cold or is this aspiration? His chest x-rays are inconclusive, but his BNP was stable (indicating he's indeed not having an episode of rejection), he's ordered for an IV dose of iron. His tube was pulled back and he got another x-ray and then it still needed pulled back even more to get it to a more comfortable place in his stomach. So lots of "poking and prodding" which he hasn't appreciated. He's low energy so he's not asking to go home every ten minutes; just every hour.

Monday, 8am

Job spiked a slight fever in the middle of the night (quickly brought down with Tylenol) so perhaps this really is a virus (a virus complicated by aspiration). Rounds aren't for a few hours but I asked for a Pulm consult as well. Job did well off oxygen last night for about an hour but they put him back on it for the night just to give him that boost. I expect the plan for the day will just be to wean off oxygen. The new NG tube that was placed last night was actually placed too deep (in his duodenum - part of the small intestine, which doesn't expand to accomodate a bolus of liquid) so it needs pulled back before he can start feeds.

Sunday, 7pm

We're finally up in our room on the 6th floor. Job got a new NG placed down in the ED. Though he was satting well upon our initial assessment, as they were placing his new tube and an IV he got more and more upset and desatted. I think they're just not interested in playing around with his oxygen requirements in the ED.

He did test positive for rhino virus - just a common cold (but negative for COVID) - but he's not really showing symptoms of a cold so it could be that the test is just so sensitive it picked up on lingering rhino particles from an earlier asymptomatic/mild cold. But did he really aspirate so much that it caused such respiratory distress? Maybe it's both.

Sunday, 12pm

We're on our way to the ER for what we expect will be a several day inpatient stay.

We couldn't get his NG tube back in after he threw it up (for the second day in a row) last night but then he's had increasing work of breathing all morning.

The big boys were really really upset about this incident. They (and Ezra especially) have been (suspiciously) calm the last couple months as Job has been in and out of the hospital but they most decidedly were not calm about this realization that Job needed to be at the hospital. I think it was just more emergent and therefore more scary, but also a "final straw" so to speak after a rough few months. As always it's really hard to be divided between my hospital kid who is physically (and increasingly emotionally) hurting and my at-home kids who are emotionally hurting.

December 2020 Update

Life with a NG tube has been pretty difficult these past two weeks. Job seems to choke on it (and his own saliva) often and frequently spits up saliva. But about every five or so days this turns into a larger-volume-from-the-stomach vomiting session. I've been on the phone a lot with the Transplant team to talk through it and rule out rejection or other such issues and they were content for us to continue to monitor him.

[To recap, he got the tube on December 17th after his second round of vocal cord gel injections this fall and his third failed VFSS (swallow study), proving he was unsafe to swallow even thickened liquids safely.]

Emotionally he's been less frustrated this last week as he was the first week, but we haven't advanced the rates of his feeds so it's felt that every day is focused on getting adequate liquids into him. What time is there for anything else?

But I had an encouraging appointment with Transplant Nutrition on Wednesday and we brainstormed new strategies for his feed doses and rates and I was feeling encouraged that we could speed up his rate so he wouldn't have six 45 minute feeds a day (a totally unsustainable schedule that I have been quite anxious about)!

But then on Christmas Day he not only threw up a significant volume but his NG tube came up, almost all the way out. My mom and I pinned him down while he screamed and screamed and Seth threaded it back in. Traumatic for all of us, but ok, just a fluke.

Until it happened again Saturday evening. And this time we couldn't get it in. He screamed himself to sleep as soon as we took a break and I held him while he napped. When he woke up we tried again but he was having some respiratory distress type symptoms, so we decided to just pull the tube. He'd already gotten his required fluids for the day so we planned to just offer applesauce and yogurt (and any solid foods he wanted) until we placed a new tube in the morning.

He had a pretty rough night last night, though, coughing in a new way, and he looked pretty out of it this morning when he woke up. He didn't have a fever and his respirations and heart rate and saturations were all ok. His cough still sounded concerning, but then he didn't cough as he took a nap from 10-11:30. But when he woke up at 11:30 he looked terrible. Ezra started screaming and screaming for us to take him to the hospital. Even at 9 years old Ezra has seen Job in respiratory distress often enough that he knows what to assess for and when a hospitalization is necessary.

We were in the car already and so it was a pretty rough drive with Ezra screaming, Isaac sobbing and Job coughing and hacking and gasping. Ezra had been suspiciously calm and trusting all fall as Job has been in and out of the hospital and I've wondered and prayed about this anomaly even as I've been thankful for it.

I'm typing this up as he sleeps after he screamed himself to sleep after going through a hospital admit, a new NG tube placement, an IV placement and a nasal cannula for oxygen. I've been slow to say anything about Job this fall. I'm kind of tired about talking about him because most of all I'm tired of him having issues. I want to "just" post a pretty picture of us doing something festive, all dressed up, with perfect decorations like it seems everyone else is doing on social media. That's easier. Less messy. It's what I want my life to look like this week. But the more serious this round of issues gets and the longer it all drags on the more we're coveting prayer. And that means reaching out to people and actually posting this and finally responding to some texts/emails. So here we go.

And here's our best attempt at a pretty picture for Christmas:

Even though this photo from an hour ago feels more representative of the last few weeks (and, obviously, of today):

NG tube

The short version:

Well, we got the final, official news on Wednesday that - despite all interventions - Job is still aspirating on extra honey thick liquids. He is absolutely unsafe to swallow liquids. 

Job has to get a NG tube in his nose. He can still eat regular foods but even the thicker-than-a-milkshake consistency he's been on is no longer safe for "liquids". This will likely be through the spring at least.

It's the best way to keep his (already impaired) lungs safe from respiratory infections developing into pneumonia. But we're devastated. I've been sobbing every few minutes for three days now. It feels like such a huge step backwards, I guess. It's also going to be a lot of work - though I've been doing oh so much work calling providers and pharmacies and taking him to so so many appointments and staying with him at the hospital for surgeries these last six weeks.

The long version:

[As I often function as Job's medical historian it helps me to write out all the minute details so I remember them better for future appointments. The following isn't even interesting to me! So feel free to disregard.]

Job has been on thickened liquids since we was 6 months old and even then always from a slow-flow bottle nipple. Until he was 3 years old (spring 2019) his cardiac condition was always so tense that we didn't have the ability to focus much on improving his swallow. We knew that his left vocal cord didn't function because the nerve to it had been damaged during his first surgery at 5 days old but hoped, at least for the first year or maybe two, that the nerve would heal. His diaphragm was also affected and he had a plication at one month old. He eventually got off oxygen but needed a feeding tube for his first few months of life and we were finally, after a lot of work, able to bottle feed. It eventually became clear that his swallow wouldn't improve significantly but by that time we were so focused on just keeping him alive that nothing else mattered.

But during transplant (fall 2018) his vocal cords were damaged during intubation. When he woke up he was completely aphonic and couldn't swallow at all, so I said I wouldn't leave the hospital without an Otolaryngology consult and, hopefully, intervention.

Oto suggested gel injections into his left vocal cord to "plump" it up and bring it to midline so that the right vocal cord could better meet it and make his voice stronger and help him swallow better. And it worked! We were really excited!

Then in March 2019, since he was almost 3 and still not able to make many verbal sounds, we started speech therapy. I vividly remember going in that morning for our very first appointment and then coming home and giving him lunch and putting him down for a nap. I was so excited to actively begin working towards the possibility of actual words!!

And then Job woke up from his nap and couldn't make noise and was struggling with his swallow. Oto had said that the gel injections would expire but I didn't expect it to be so very dramatic!! 

We started working on scheduling new gel injections, but then he got back to back colds requiring not just back to back hospitalizations but back to back ICU stays. So new gel injections got pushed ahead until June 2019 until he had sufficiently recovered from his respiratory infections to be safe for anesthesia. But we also saw Pulmonology in the hopes that they would have suggestions. They were shocked he wasn't already on a G-tube (basically a hole in his stomach to put fluids in), which, honestly, was pretty off-putting to me and might be part of why I haven't been back for a six month or year or 18 month follow up with them... But probably a bigger part of the reason is that Job was so very healthy from March-October 2020 and I was very happy to avoid non-urgent hospital appointments. 

His June 2019 gel injections were a different formulation than his previous injection, meant to last 9-12 months and they did! But his surgeon told me about a brand new surgery SCH was pioneering for children after it was successful for adult patients at UW. It took a while to coordinate with the UW surgeon who had to come over and partner with Job's Oto surgeon, but but in February 2020 Job had his recurrent laryngeal nerve reinnervation surgery.

The goal here was to potentially plump up his left vocal cord permanently so we wouldn't have to do gel injections over and over. Since it takes about 12 months to see results from this procedure he got another round of gel injections to hold him over until the nerve reinnervation might take effect. We were so excited that he got it done just before COVID hit and elective procedures were tabled.

We had such a blissful spring and summer from a "Job's health" perspective. Our therapies all went to online and We just had May and August cardiology appointments. Did you read that? IN SIX MONTHS WE JUST HAD TWO APPOINTMENTS at SCH. TWO APPOINTMENTS. (But don't worry: we more than made up for it this fall with at least one if not two appointments a week up there since October 18th. Oh, and three hospitalizations.) Job seemed so very healthy and happy! We've NEVER had such a respite from his medical needs. So many other aspects of our life were falling apart but Job was thriving!

Until he wasn't. His gel injections expired in mid October and wow, what a mess it has been since then.

A few days before his scheduled annual biopsy on October 18th Job's baseline cough changed into something wetter. Ezra had been feeling a bit strange so we thought it was just a cold. He was hardly symptomatic so the team said to bring him in for an assessment anyway and we'd decide that morning whether or not to proceed with the biopsy. Anesthesia felt uncomfortable with how wet his lungs sounded morning-of, so we came home and rescheduled his biopsy for November 19th to let him recover from his "cold". Except he never did. He cough got worse and worse. His lungs got wetter and wetter. Cue work for me, like appointments and phone calls and med changes, plus just being on high alert, but we weren't super worried.

I think we were all so expectant that his nerve reinnervation would fix everything that it really wasn't on my radar that his gel injections expired. Until we went to his VFSS (where he swallows foods and drinks with barium in them on x-ray to assess his swallow) on November 6th. He had seemed so healthy all summer and we were so hopeful that he would "graduate" to a thinner liquid or *gasp* something-other-than-a-baby-bottle!  

Instead the study showed he was aspirating on honey thick liquids. Cue so so many appointments and phone calls and tears. We were allowed to go home for the weekend without intervention but everyone expected stuff would start happening Monday morning. But it didn't. I was calling Oto a couple times a day that week, trying to get the ball moving. His lungs sounded awful to me and I was getting really stressed out. We also kept needing to do COVID tests for each appointment/procedure.

Job has had some terribly painful medical interventions throughout the years, but always with anesthesia. His various PCR tests have always been the most emotionally scarring part of his care but until this COVID season we didn't have to do them very often. He has now had a total of SEVEN of them this fall. SEVEN. It's been awful. So awful that I've thought about making some of my decisions for his care based on whether or not we need a COVID test or not. 

I have always been  satisfied with Oto's care for us at our appointments/surgeries. I thought it was a little frustrating that I had to verbally walk his Oto surgeon through Job's "file" each time (thus why I have to remember all of this so intimately) and that the nurses and schedulers didn't call me back same day as I expected (like the Heart/Transplant team does) but it wasn't that big of a deal, was it?

Until he got worse and they still weren't calling me back. So I called the Transplant team and they called Oto and I got an appointment with Oto on November 13th. We showed up and Job merely walked into the room and his surgeon heard his gurgly breathing and said "it's time for new gel injections!" He said we didn't need to change anything about Job's drinking or eating and they were going to try to pair the new injections with his already scheduled biopsy on the 19th. I walked out of that appointment thrilled! Oto thinks Job's safe! We'll only have to do one COVID test and one hospitalization! Woo hoo!

But that weekend Job's sats dropped again (still not dangerously low - solidly mid 90s - but a noticeable drop) and his breathing was getting even more concerning. So I just started thickening his liquids even more (3oz liquid per packet instead of 4oz). He started drinking a bit less because that level of consistency is SO very thick.

It was a tense week but we finally made it to biopsy and gel injection day! Hooray! He had his biopsy (which looked wonderful!) and had his pulmonary artery ballooned up (surprising us all that he didn't need a stent). Yay! Results came back that he had a rejection score of 0. Yay! The surgeon doing his gel injections that day wasn't actually his regular surgeon but everything went well. Yay!

Seth and I both got to stay with him overnight and we repeated our ridiculous joke about it being a romantic weekend getaway in a luxury high rise big city hotel. Job was pretty grumpy but recovered well. No Rapid Response Team, no ICU trip! Yay!

We got home but by the time Job was feeling better and up and at 'em he also started his recurring cycle of choking (usually when crying but sometimes "just" on his own saliva) and then throwing up. It wasn't ever very much and it was usually just saliva - not stomach contents. But then it escalated. Nights were terrible and Seth and I took turns staying awake to watch him or at least sit right next to him where he was propped up on the couch and dozing while he slept. Each time we thought about calling the on call cardiologist in the middle of the night he'd suddenly improve immensely and we'd sleep a few hours before calling the regular team the next day. We told ourselves we could do it for just one more week until his gel injections really took effect and we did the VFFS.

During the VFFS (videofluoroscopy) Job eats and drinks various foods and liquids (at various thicknesses and sometimes temperatures and delivery methods) that have barium in them while x-rays are taken. This is the very best way to assess for aspirations. Job totally failed his December 16th VFSS even on extra-thick honey liquids.

We're stunned.

And we're crushed.

He's had the tube for all of 28 hours now and it's been hard.

We're expecting he will be really sad about it, in physical discomfort from the tube and really really miss the taste and feel and comfort of "liquids" in his mouth. His doctor said that often kids who aren't getting liquids by mouth will try to sneak them, so we'll have to be watchful on that front.

I am preaching to myself that God has sovereignty ordained this for His glory and my good. But I'm so sad. There have been so many losses this year - especially in fellowship - so when we're already lonely and grieving this feels like an extra heavy blow. God has always provided for us tenderly. He will again. He is right now even though I don't think I can see it yet.

We're lonely and tired too. In other seasons of such intense trial we've had friends come alongside to bring meals or take the boys on an adventure or even just send a text to say they're praying. We haven't been very vocal about this ongoing trial so I don't think many people know Job's been struggling.

I tell myself things like ultimately this will free up the 5+ hours/week I've spent the last 6 weeks taking him to appointments and making phone calls! Buuutttt then I remember from previous tube placements that will be physically irritating to have something dangling down the back of his throat. Annnddd it will be work for Seth and I to learn how to use it again/then keep up on it. But most of all we're concerned about the emotional piece for Job. Does he understand why I keep bringing him back to the hospital for more pokes and swabs and surgeries and now tubes?

The surgeries on his vocal cord did help. He's now sleeping through the night safely. He's no longer choking on his saliva to the point of frequently vomiting after a coughing fit. His voice is louder and clearer. He's no longer breathing noisily.

But the more we look at his most recent VFSS it seems that he has greater issues than "just" his vocal cord. There's something wrong with the actual swallowing mechanism. I think Oto is going to be studying this most recent study quite closely and coming up with a game plan for future interventions. Right now it doesn't seem like there are many other options. We'll wait until February (when he's a year out from his nerve reinnervation) and reassess.

Of course, first we have to get TO February on this tube. And that's still a pretty daunting prospect.

Vocal cord intervention... again

Job is currently having surgery (his third surgery in as many weeks - the second on his vocal cords). 

He's severely aspirating all fluids (especially his own saliva) and is actually just on a spoon-fed puree diet right now to try to keep his lungs a bit safer. This is only sustainable short term, so we're urgently working to figure out a better solution (thus this emergency surgery). As part of that we're trying to avoid all germs as he's extremely high risk for pneumonia and such complications.

If this surgery doesn't make a huge difference in the next few days he'll be getting a NG tube and then we're likely looking putting in an implanted device in his throat in early January to force his left vocal cord into better position to protect his airway.

He's cheerful and active, though he's tired of coughing and throwing up and appointments. And we think he's as cute as can be.

Job holding cousin Mila a week or two ago

Nights have been really intense as he often chokes throughout the night, spirals into a coughing fit and then throws up repeatedly. Seth and have been taking turns sitting next to him while he sleeps to prop him up through the night when he wiggles down to a more horizontal position and then making sure his airway is clear while he's throwing up and cleaning up after him. I've called Otolaryngology repeatedly and taken him to so many appointments and tests this month. Dozens of providers and multiple specialties have been conferencing about what to do next. In some ways it feels like the old days (and that's not a good thing).

Cardiac-wise he's healthier than he's ever been! But this issue has been steadily escalating since mid-October when his (most recent) gel injections expired. (Well, actually he's had so many issues since he was 5 days old when the nerve to his left vocal cord was severed in his first open heart surgery... but it's been especially escalating this fall.)

Even before he started aspirating so dramatically this past month, Job's lungs were terribly compromised from his heart defect before transplant, so we've needed to be especially careful with germ exposure this fall. Forget COVID - a simple cold can send him to the ICU (and has, so many times)! Now with very wet lungs he's especially susceptible to respiratory infections, so we've had to get even more strict about what we're doing/where we're going until he's in a safer place. While we know God already knows the number of days here on earth that he has allotted to Job, we are trying to prayerfully steward the blessing and responsibility of his care. 

We've felt lonelier probably than ever before in this season and especially covet your prayers for us as we trust God that He is using these accumulating trials for His glory and our good. We decided to give Job his name when we received his pre-natal diagnosis because we wanted to be able to say, and we want him to someday 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” (Job 1:21). We know that God has faithfully cared for Job every day of Job's life. We readily acknowledge the great blessings bestowed upon us. Job is alive! What a miracle it is to be able to say that. We are so grateful! But we're also weary and frustrated and concerned. We know grief and gratitude can coexist, but it's messy.

There have been so many phone calls and appointments and procedures this fall and so many COVID tests and blood draws. Job only really started talking in February, and we had such a boring summer medically speaking, so it's been a lot for him to process verbally with us these past months. He's very adamant that he does not like pokes and he wants to "throw needles in the garbage" and each hospitalization has been really difficult for him to endure. We've also had many other hardships pop up this fall, some big and some small, and it's humbling to be reminded how very much we're dependent on God's mercy for every aspect of our sustenance. For example, I randomly strained my back this week and spent the entirety of today on the couch with a heat pack and our van broke down again. Why? Why isn't another hospitalization this week enough?!?

To be perfectly transparent, I often feel like God should stop giving me trials because I've already had enough trial and I already trust Him enough. But just this week, doing our advent readings and hearing the prophets testify about God's faithfulness to His people, I was convicted anew that I am no different from the grumbling Israelites that I'm so quick to criticize for their complaining unfaithfulness. So I pray and start preaching to myself again and I turn on my playlists of various songs that help me worship God through yet another sovereignly ordained opportunity to trust Him.

The big boys and now Job have so many questions about God's goodness and sovereignty in the trials of this hard year so we keep talking and praying and singing. It takes so much prayer and so much (supernatural) strength to persist to fill my ears and mind and heart with these truths. To preach them to myself and my kids. It's certainly not easy or fun or natural to do so. So please keep praying for us. Pray for Job's physical health, yes. Absolutely. I want more years with him. I also want respite. But more than that we want our sons to have eternal life, not just physical life (John 11:4).

It sounds so spiritual to wrap up this post with these declarations of trust. But I'm saying these things out of weariness and pain and faithfulness and the Holy Spirit working in my heart. And I'm begging for prayers of stamina to continue to trust God. Right now it's hard to exuberantly boast of God's faithfulness to us, but, "for the sake of Christ" I want to be content in this place of weakness and trial and calamity. I want to trust God when He proclaims "My grace is sufficient for you, for my power is made perfect in weakness." (2 Cor. 12:9)

Today's fancy pre-op clothes

November 2020

What a whirlwind of a month!

Job's October biopsy was cancelled because we were concerned he had a cold as his cough changed and his lungs were wet. He might have!

But his gel injections clearly expired as well. So all month we've been going to various appointments to get a surgery slot for new gel injections. He's actually in a pretty unsafe place swallow-wise. Sustainable for a little bit just because his heart is so stable, but they're working to get a surgery time asap. We're hoping it can tag on to the same hospitalization for his annual heart biopsy (re)scheduled for November 19th.

We don't anticipate rejection but since we now go THREE months between cardiology appointments my anxiety creeps higher and higher the longer we go.

Job is really thriving developmentally and we're so proud of the strides he has made. We're doing PT and SLP via Zoom, which isn't ideal but is working but holding off on preschool for now until we get his swallow figured out.

Here's a picture of him in his Marshall (from Paw Patrol) costume (and another with his beloved brothers):

TWO YEAR TRANSPLANT ANNIVERSARY

Today marks two years with a new heart. 730 days with a fully functional, whole heart, providing adequate oxygenation to all of his organs.

He was barely surviving before transplant. We were watching him waste away, with probably only a week or two to go before it would have been necessary to move into the hospital to begin increasing levels of life support. 

Now he’s thriving. Now he can run. Now he can talk. Now he can play with his brothers. 

But it’s also been two years since another family lost their precious baby and selflessly chose organ donation.

We are so grateful.

Job 1:20-21 “Then Job arose and tore his robe and shaved his head and fell on the ground and worshiped. And he said, ‘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.’”

Job 42:1-2 “Then Job answered the Lord and said: ‘I know that you can do all things, and that no purpose of yours can be thwarted.’”

September 2020

THE FALL ROUTINE HAS STARTED!

And I'm really really overwhelmed.

We decided to go back to in person church. They've created a special masked, socially distanced service. 

The boys all went shopping ten days before my birthday and had the hardest time waiting for my actual birthday to give them to me. Ezra has campaigned for about 8 years for Seth to buy me fancy jewels and this year somehow he convinced Seth to buy me a beautiful sapphire necklace!?! I love it! But I'm still surprised.

Ezra bought me a neck pillow because he remembered how much I liked his on our trip. Isaac an umbrella because I don't have one. And Job an electronic dictionary. I don't think of myself as a "gifts" person but I'm so touched by their thoughtfulness. It was a pretty big deal that they all went into the store - none of them have been inside a store since February!!

It's so fun to watch Job become one of the "big boys" and have his opinions and participate in these discussions, like what to get me for my birthday. And to hear him describe why he chose his gift for me. I'm so blessed.

August 2020

This month we went on an epic road trip!

The ultimate destination of our trip was our beloved "MBR" ("multi baby reunion) with Seth's college friends and their wives and children. Over the last ten years that we have done this we've alternated destinations and this year's planned destination was Colorado! Of course, originally the trip was to be in May, but we tried again and actually made it happen this month!

We got special permission from the transplant team to go and we planned our route carefully to try to be as cautious as possible. For the most part it was easy - we were outside! Camping! Already, inherently, socially distanced from people! But certainly we were around more people overall than we have been pre-pandemic.

I was particularly concerned about medical care, as usual when we've traveled more than an hour or two away from Seattle. I had nightmares that we'd get "stuck" at an inadequate country hospital and need a life flight... Certainly hindsight is 20/20 and I'm probably only saying this because so little went wrong on the trip, buuutttttt I'm so glad we went.

I really think this was my very favorite thing I've ever done. We saw so many natural wonders and had such a lovely time together, just the five of us. But it was so lifegiving to see our friends and to see Seth's brother and wife and nieces.

July 2020

We tried to conjure up some pandemic fun this month, but the highlight was a very enthusiastic transplant clinic! Woo hoo! Job is doing SO WELL!!!

Trying octopus!

Fort Stevens was lovely and needs more than just one day there next year.