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.