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):