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