Closure, Take 2

Last winter, we were planning to have L’s leaky g-tube site surgically closed — a “gastrocutaneous fistula closure,” to be exact. I was busy reflecting on how fitting it would be that this surgery was called a closure, as it would be the first that officially marked an unqualified ending for us — even knowing full well that there may be more to face ahead — when we were derailed by increased symptoms and some imaging that made us pause.

Now, in June, we’re back again for Closure Attempt 2.0.

7C23DF0A-C426-4312-AC27-737E96AE2B21.jpegIt’s a terrible time for a surgery, to be honest. We’re busy packing up our entire house, my last day at my job is Thursday, and in six days we’re moving 816 miles away.

At the same time, that’s exactly why we’re having a surgery right now. It should be a simple 45-minute procedure, but when you’ve had so many major abdominal surgeries, scar tissue and adhesions can complicate even the simplest thing. We want to make sure L’s surgeon here, who knows his belly better than anyone, is the one to bring this chapter to a close.

And it is closure in so many ways…. We never intended to stay in St. Louis, Z and I. We’ve had our sights set on the mountains for ages. But when L was born, our world was so entirely wrapped up in his survival that everything else fell away.

Priorities change, when you have a child with complex illness. Options are taken away from you. I changed my career path (for the better, I might add); we delayed having a second child far longer than I ever thought I would; and moving elsewhere left the conversation entirely, because we couldn’t risk leaving a medical team we knew and trusted.

That same medical team that has kept us in St. Louis is now the only reason we’re able to leave. They saw L — and me — through his darkest times; they’ve been with us through every major setback and every major milestone in his recovery, and it is thanks to them that we have made more progress than we used to dare to hope possible. They have given us the gift of being able to leave them.

This small surgery marks a big ending, and we are forever indebted to the incredible people who made it possible.

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Closure

L was supposed to have surgery last week. We removed his g-button 16 months ago, but the site where it used to be is still seeping every so slightly, so his surgeon was going to close it up once and for all.

This procedure would have marked an even dozen for him, and this one would have been different in one very significant way: it would have been the first one that truly marked an ending. Every previous surgery — and beyond that, every appointment, every change in diet or supplementation, every tiny thing we’ve ever done to manage his care — has been permeated with “wait and see.” We have lived so much of L’s life in the NOT KNOWING; wait and see if his bowel survives; wait and see how much bowel he has left; wait and see if he can handle this reduction in TPN; wait and see if he can handle just a little bit bigger reduction; wait and see if this tapering surgery reduces his symptoms, if he tolerates these foods, if he absorbs these vitamins, if he can make progress; wait and see, wait and see, wait and see.  

The procedure we were supposed to have last week is called a “closure,” and I had even begun writing what I can only assume would have been a very poignant blog post about what a fitting name that is for the very first surgery we’ve had that did indeed bring with it some kind of closure. There would have been no “wait and see” — we’ve waited, and we’ve seen, and we know without a doubt that he no longer needs his g-tube. We know that there’s always a chance of a setback, always a chance of another surgery, always a chance he will need nutrition support again at some point, but for now, for this moment, this would have been an ending.

But that blog post was drafted in my head only, because even now I know better than to look directly at something that seems to be going so well. We may have moved to the far shores of the great sea of NOT KNOWING, but we still drink of its waters, and we know all too well that when it comes to L’s bowel, very few things are certain.

And so it happened that last Tuesday, L’s closure was cancelled. L had been having belly pain for a few weeks, and since we hadn’t had any imaging in just over two years, we had gone in the week prior for an ultrasound and upper GI (side note: upper GIs are a much easier process when you have a g-tube to push the barium drink through!); and then, when they didn’t like what they saw on the upper GI, went back for a lower GI to get a more full picture. So on our scheduled day of closure, instead of showing up at the outpatient surgery center first thing in the morning, we arrived in the afternoon for an appointment with the surgeon to discuss next steps

At the time of L’s last big surgery, his small bowel was very dilated and he had a stricture where small meets large – which means that section of his bowel had become so narrow he nearly had a full obstruction, preventing things from moving through his bowel correctly, backing up everything behind it and severely interfering with normal digestion. The surgeon opened up the stricture and tapered the dilated bowel, and these revisions helped tremendously. L flew through his recovery. He was off of TPN within six weeks and line free a few weeks after that. That surgery marked THE turning point in his progress; he has been light years better ever since.

But this latest round of imaging showed that the spot in his small bowel where the surgeon had opened up the stricture has re-narrowed, and the section of gut just before it has re-dilated. Not as significantly as it was two years ago, by any means, and he’s not having anywhere close to the same level of symptoms he was having in 2016. But enough to cause some concern, and to postpone his closure while we sort out what we should do.

And so we find ourselves back in the NOT KNOWING. It’s possible — and I want to pause to emphasize here that I don’t currently think this is the case — that his recent symptoms are the result of a new stricture that’s heading toward bowel obstruction and would require another big abdominal surgery to resect (remove) that portion of his small bowel. That would mean another potentially lengthy inpatient stay, another significant recovery period, possibly a brief return to some sort of nutrition support while we wait for his gut to wake up and return to full function.

It’s also possible that this stricture and re-dilation happened shortly after his last surgery, and has looked like this for most or all of the last two years, and we only just discovered it now because he had some belly pain and we happened to take a look. It’s very possible that the recent belly pain was caused, not by an impending bowel obstruction, but by a little bug that he took longer to shake than your average kid would. If that’s the case — and I think it’s likely, given the upswing L has had in the last couple of weeks — he would have had this stricture and dilation through ALL of his best days and months and years to date, virtually unphased by it.

We can’t know. There’s no retroactive belly-cam. We can only monitor where he goes from here. We’re not rushing into anything, at the very least, and we still feel really good about where we are. If he proceeds without any ongoing or worsening symptoms — and I want to emphasize, for anyone reading this who might be concerned, that he has been feeling loads better and has been eating ravenously (we’re currently at a pace of four full meals plus 8-10 snacks/day) — then we may never have to repeat that surgery, or at the very least it may be a long way down the road. 

For now, we’ll wait and see.

Breast pumps suck. Getting your insurance to pay for one doesn’t have to.

DEF5382C-2FB8-4F7F-A285-D877861FD322.jpegUnder the Affordable Care Act, health plans are required to cover breastfeeding support & supplies. But when I was pregnant with L, I was a little unclear on the process required to get a breast pump covered by insurance. So I called the number on my insurance card to find out what I should do; I got a prescription from my OB/GYN and then called the insurance company again when the information I was receiving elsewhere didn’t seem to align with what the insurance rep had told me; I talked to a pharmacist and whoever answered the phone at some sort of home health supply store, with more conflicting results; I called my insurance company two more times to confirm that I was doing it correctly; and I called yet again after I submitted my reimbursement request to confirm that I had done it correctly.  

And then I got a denial letter in the mail.

When I called our insurance company to object to this denial, they conveniently had no record of any of my calls. So I ate the cost of that $300 breast pump, because by that time L had been born and I was up to my ears in other, more pressing worries. When a nurse at my OB’s office found out what had happened, she connected me with someone in her office who submitted the paperwork for me to get a second pump free through insurance, so they would at least have to cover one for me even though I had paid out of pocket for the first, and I did receive a pump free of charge that I was able to keep on hand as a backup — but I had no choice in the type of pump, and received an model which shall remain unnamed that I like to call the “Purely Sucks,” which I used for exactly one day out of desperation when I had left my preferred pump somewhere and hadn’t been able to retrieve it yet, but which I’m pretty sure would have led to a failed attempt at exclusively pumping had I had to use the insurance-provided pump from the start.

So when I began looking into obtaining a new breast pump during my second pregnancy, I was determined. I was all set to arm myself with information and spend weeks fighting my insurance company to the death to get the proper coverage for the pump I needed. They would not win this round!

And then I discovered the Target Breast Pump Program, and within minutes, my pump request was in the works and I could save my resolve for the next insurance battle that was sure to come my way.

When I called, I spent maybe 10 minutes on hold and another 2 minutes speaking with a representative who took my information and got things rolling. Afterward, I faxed them the prescription my OB had provided, and a few days later, I received an email outlining my options, with images of the pumps and links to product pages to help me decide. I replied with my selection, and my pump was ready for store pickup two days later. Easy peasy nipple squeezy.   

Don’t pay for your pump out of pocket. Don’t waste time getting the runaround from your insurance company. Have Target do it for you!  Click here for more information about the program.

Disclaimer: All opinions are my own, and I have not been reimbursed for this post –  I just take great satisfaction in making health insurance companies pay up and pay out!

PatchMD: An honest review

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Nutrition is difficult when you’re not working with a complete gut. My son, L, has short bowel syndrome as a result of a congenital condition called gastroschisis; his intestinal motility has regulated quite a bit, and that has helped tremendously with his calorie absorption and hydration, which is why we have been able to wean him off of TPN and remove his g-tube over the last year and a half — but vitamins are a different story. He has always had difficulty maintaining his vitamin levels, even when he was getting a vitamin cocktail straight to his veins every night, and without TPN his vitamin deficiencies remain our biggest everyday struggle.

L particularly struggles with absorption of water-soluble vitamins (A, D, E, and K). Our gastroenterologist has actually called him “her most difficult kid” when it comes to vitamin D. Apparently in a typical gut, certain vitamins and nutrients are best absorbed by certain sections of the small intestine; since L’s small bowel didn’t form properly we don’t actually know exactly which sections he has, but since he only has about 20 percent of what he should have and almost all of that has been surgically repaired at this point, L probably just doesn’t have the sections that are best at absorbing these vitamins.

We’ve tried a range of supplement options, ranging from Flintstone chewables (which his labs laughed at) to double doses twice daily of pediatric AquaDEKs, which is a bright orange liquid multivitamin containing the water soluble vitamins A, D, E, and K (let’s pause to appreciate the clever name they came up with for that one!). AquaDEKS is actually designed for kids with cystic fibrosis, who also typically struggle with malabsorption.

The normal range for vitamin D is 20-100. AquaDEKs helped maintain L’s levels when he was receiving TPN, but after stopping TPN and having his central line removed L had never been out of the high teens. GI and our nutritionist did some research and decided to do a trial run of patch vitamins from PatchMD, which they had not tried before with any of their pediatric patients. Since L’s absorption issues lie in his gut, the hope was that patch vitamins, which absorb directly into the bloodstream through the skin, would allow us to bypass that difficulty altogether.

Here’s how it went for L, who was 4 years old at the time:

Effectiveness: We did see a bump up in his numbers within the very first month — although, as is often the case, this test run wasn’t isolated to a single variable. He had successfully learned to swallow pills just the month before, so the initial boost may have actually been a result of the prior month of swallowing his 50K iu vitamin D pills (we had previously been poking holes in them and trying to squeeze their innards into his g-tube, and hoping he got most of it).

With the help of both the Vitamin D3 patch and the adult multivitamin patch, L maintained vitamin D levels in the low 20s and then mid-20s through the summer, putting us in the normal range for the first time ever! I initially thought PatchMD was a huge success for us.

However, this number began to trend down month after month and dipped down near 20 again as the weather turned cold and L was getting less sunshine. Because L had miraculously started swallowing pills like a pro just before his 4th birthday, we ultimately discontinued patch vitamins and went back to an oral multivitamin (we’re currently using DEKAs, which is essentially the capsule version of AquaDEKSs), along with an oral iron supplement and the 50K iu vitamin D — and his vitamin D levels have skyrocketed, hitting 36 and then 45!

So it seems that, for us, patch vitamins are more effective than liquid vitamin supplements, but nothing beats the regular old pill.

Ease of use: So simple. Slap the patches on his back at bedtime and they’ve run their course by morning. We rarely had them come off before morning, and a few times we forgot to remove them and they stayed on all day, even through sweaty outdoor play and weekly “splash day” at preschool. And they are easily removed — L is still a bit traumatized by having tape on his skin after all the sterile dressing changes he’s been through, but it didn’t take long for him to get comfortable with us pulling these off of him.

Pricing: Around $20/month per type of patch before discounts – and they always have coupon codes for 30% or 40% off (the amount varies depending on whether you’re willing to subscribe to a recurring order – which I eventually did, and it was easy to cancel, but you do have to cancel several days before your order is set to ship). We didn’t even try to run it through insurance since these are OTC. Vitamins aren’t cheap, but these were at least a lot more cost-effective than quadruple daily doses of pediatric Aquadeks, which were running us around $30 every two weeks.

Shipping times: Excellent. At its most impressive, I received a shipment notice a whopping 14 minutes after I placed my order! That was probably an anomaly, but the patches always shipped within 36 hours of placing my order, and we received them within 4-5 days at the most — even the time I placed an order at the beginning of a holiday weekend.

Customer service: Meh. I didn’t have a lot of need to interact with customer service, because everything went smoothly with all my orders. The only time I did reach out to them was during a special promotion that wasn’t properly applying to my order — and I didn’t receive a reply.

VERDICT: Proceed with caution.

PatchMD vitamins are very convenient and they did seem to work better for us than some of the liquid supplements we’d tried. If nothing else is working — or if you’re just looking for a hangover cure or a boost for your complexion, both of which the company offers — full steam ahead, it’s worth a try. But if you have any kind of chronic deficiency you’ll want to keep a close watch with regular bloodwork. (Although, if you have any kind of chronic deficiency and don’t monitor it with regular labs, you might want to seek out a new doctor.)

Disclaimers: I did not receive any products or perks in exchange for this review; I simply wanted to offer up our experience, since I didn’t find any reviews from short gut parents when we started patch vitamins. And, I am not a medical professional. I’m a mom. For medical advice, talk to your physician or provider.

Have you tried patch vitamins? What supplements have worked for you? We’re still struggling with iron levels, so I’d love to hear your suggestions!

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Gutsy Surgery: Six Months Later

I think medical time moves differently than regular time. It has split personalities, perhaps. When you have young children, the weeks and months seem to fly by somehow (“Can you believe he’s going to be FOUR?! How is he almost four years old?!!!”) but in many ways, even this last big surgery already seems like a lifetime ago.

A friend asked me recently, “So, was the surgery a success?” She’d asked me something similar before surgery – how will you know if it works? – and I had fumbled through an explanation about how there may never be a clear answer to that question, in much the same way that there’s never really a finish line for us; there’s no real “cure” with L, it’s always an ongoing process of management, and varying degrees of better and worse.

Today though, just six months out, I can say without hesitation that our October surgery was a resounding success. Even to write that makes my breath catch just a little – how gutsy of me, to make such a bold proclamation, and surely perhaps a little naive? In our house, we don’t even say “at least bedtime should be easy tonight” because that’s the surest way to guarantee it will take hours; we’ve spent so much time refusing to look directly at progress for fear it will slip away that to voice the words “resounding success” feels downright dangerous. As certain as I am that this surgery was a success, I am equally certain I will live the rest of my life waiting for the other shoe to drop.

And yet – his appetite came in with a roar less than two weeks post-op, and there’s been a hungry lion living inside him ever since. He eats seven or eight times a day, and not just grazing; he’s eating full meals, and my picky eater’s short list of “L-approved” foods has expanded from roughly a dozen fruits, carbs and cheeses (but only in very particular shapes and forms) to an entire world of food groups and variety. Meats! Fish! Nuts! GREEN VEGETABLES!

He’s eating, and tolerating nearly unrestricted liquid intake, and his gut is working so incredibly much better than we ever dared to hope before. He’s having beautiful poops (Look, mama! Let’s take a picture!), and only 2-3 times each day as opposed to the so many we were seeing before. His belly is smaller – it would get horribly swollen before surgery, due to the dilated sections and bacterial overgrowth – and he very clearly just feels better all around. The cause and effect of all these things seems a bit chicken-or-egg, but they all play off each other to keep the rest moving in the right direction.

He was able to come off of TPN (IV nutrition) about six weeks after surgery, at which point we switched to overnight g-tube feeds (that means we’re running a medical version of Pediasure through the feeding tube in his belly, which goes directly into his stomach as if he were drinking it, only in a slow, steady drip that’s more easily absorbed). Over the last three months, we’ve cut the volume of that overnight Pediasure in half, and he’s been able to maintain weight, stay hydrated and stay on his growth curve; we’re hoping to keep forging ahead and sooner or later ditch the overnight feeding pumps altogether.

The biggest remaining hurdle is vitamin deficiencies, which aren’t going away anytime soon and can cause some serious health problems over time if left untreated. But even there, it’s an ongoing process of management, not a discouraging setback – and we have some exciting prospects on the horizon in the form of patches and pills.  

We’ll never be completely free and clear. L’s gut could re-dilate. He could develop a new stricture or obstruction or perforation – I still suppress a dull panic every time he complains of a stomachache. He could experience an illness that unexpectedly throws us into a long downward spiral. And as he grows, he may go through stretches where his body can’t keep up with his nutritional needs, and we may need to supplement in one form or another.

But for now, he is thriving. He is healthy. He is line-free. And we are making up for lost bathtime.

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Tales of a Line-Free Kid: The Pinch

Being line-free has more advantages than I can quickly catalog here, but it also has one definitive drawback: needles.

Malabsorption necessitates frequent blood draws to monitor vitamin levels, hydration, liver enzymes and a plethora of other things. Depending on what else is going on with his health, L has had monthly, biweekly, weekly or occasionally even daily labs since he was born. However, with the exception of a brief stretch in the summer of 2014, L has also had a line of some sort his entire life. That means that we have had the good fortune (can we really call it that?) to have been able to draw his labs through his line, needle- and pain-free. Because we were, erm, between doctors for several of those line-free weeks in 2014, he has had a grand total of one traditional blood draw in his entire life, at around 15 months old when he was too young to remember.

Until today.

I was nervous, heading into our appointment today. I have friends with kids – small children, far too young to be so brave – who are so accustomed to needles that they chatter and giggle through labs. There are others, though, many others, who have been so traumatized by extensive poking and prodding that they require sedation for even the simplest blood draw. L does well when we explain to him well ahead of time what’s coming, and for a 3.5-year-old he is very receptive to being reasoned with, so I hoped I could employ some of the tactics we have long used to talk him through dressing changes; but, thanks to regular dressing changes, he also panics when we so much as pull tape off his skin. I felt as though an awful lot of weight was riding on how I managed this first needle.

In the empty waiting room, we made a game of squeezing together into each of the extra wide chairs. As the panicked screams of another poor little soul rose ever-louder from the back, I amplified my laughter in a futile attempt to mask what awaited him.

Finally, it was our turn. “I’m scared,” he whispered.

“I know, buddy. But remember what we talked about? I’ll be with you the whole time, and it’ll just be a little pinch and then it will be all done.”

The phlebotomist led us to the back, and L climbed up into her giant chair unprompted. He was immediately taken with the perpetual motion toys on her desk (Dory! A pterodactyl!), and perked right up when I offered the holy grail of distraction: YouTube toy review videos (curse you, Ryan’s mom, but in times like these I am grateful for every shrill unboxing. And by times like these I mean blood draws, 5 am, and when I just want to pee in peace for once, dammit).

As she pulled out the needle, I was irrationally taken aback that there was no warm up, no sleight of hand. All of a sudden, there was a big shiny needle just staring at us. “All right, here we go,” she said. “Just a little pinch.”

I braced myself to hold him down, as I’ve had to do far too many times before, but he gave only the slightest whimper when the needle went in, and another small whimper when it came out. He watched like a hawk as she wrapped his arm in coban – red, because she had heard him say red was his favorite color as we watched the blood flow into the syringe.

He turned to me, and I held my breath, waiting for his words.

“Mama.”

His little voice was very stern.

“That pinch made a HOLE.”

“Yes, buddy, it did. I suppose I should have said it would be a poke instead of a pinch. But it wasn’t as bad as you thought it would be, was it?”

“Yes, it was! It was exactly as bad as I thought it would be –”

My mind raced to come up with exactly the right words to steer him back in the right direction. But there was no need:

“Can I have more stickers?!”

Line free is the way to be….I think….probably….Yes, okay, we’re definitely maybe ready for this. I think.

This morning we got a belated Christmas gift:

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I hadn’t wanted to say too much until it was actually done, because we have already delayed the line removal procedure once due to a cold – and we have been close enough to this enough times to know that even when things seem to be going stupendously, that can disappear in the blink of an eye (remember what happens when we get cocky enough to look progress directly in the face? Poof! Liquid shit.)

It’s funny, thinking back over my evolution as a short gut parent. This is the fourth time we have stopped TPN, and the second time we have pronounced ourselves line-free. The first time, a lifetime ago, when we were still with our old GI and before I had begun to make peace with the NOT KNOWING, we only stopped TPN because I pushed for it – and oh how I chafed when we were required to keep his line for a whole month before pulling it, just to be sure he could gain weight without it! And when we finally did achieve that golden pinnacle of line-free-ness, I threw a party, and I fought like hell when we began to move toward replacing a line and going back on TPN.

The second time we stopped TPN, I felt seasoned. I accepted the waiting period, or so I thought, because I knew exactly what kind of hell it had been the previous summer when L’s nutrition slowly failed. But I still went to every appointment with eager anticipation that this time would be the day GI would give the approval to pull the line, or maybe this time, or surely now this one – and I made myself crazy, as seven months slipped by, with me always thinking this week would be the week, until a series of mild illnesses proved that L was not ready to be off of TPN after all.

The third time we stopped TPN, just about nine months ago, I was resigned to the process. I fully expected months on end of weight checks and labs and waiting just a little longer, and then a little longer still. I didn’t ask when we could pull his line (or at the very least, I didn’t ask relentlessly at every opportunity). And four months later, when TPN returned and we began discussing surgery options, I was not surprised. I didn’t fight. I knew he needed it.

And now, having just stopped TPN for the fourth time, I have completed my 180 degree swing. Last month, just two weeks after our last night of TPN, GI began talking about pulling his line by Christmas.

Are you sure? Shouldn’t we wait just a bit longer?!

He can do it, she said. He’s ready.

And so, just in time for the new year, we head into what I supposed you could call Phase 2 – although this is really more like Phase 2 version 4.0, and in reality, like always, we will just keep chugging along and hoping this doesn’t turn out to be Phase 2 version Samsung Note 7.

Although, you know, now that Ivy is gone, if Phase 2 begins to catch fire we can just toss L in a pool. He’s been asking to go swimming….

Look out, 2017. Next year is the first year of the rest of L’s life.

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Gutsy Surgery: A Timeline

For anyone who is interested, here is a breakdown of the first two weeks after intestinal tapering (and yes, there is poop talk. With descriptions. I mean, you are reading a blog about guts, after all).

Even though the surgeon ended up only tapering and opening up a stricture rather than tapering and lengthening, we were told this would be fairly similar to a STEP or Bianchi recovery since he still had a long staple line in his gut, but with less risk of complication that could delay progress. Given the difficulties we endured in his first year or so after his first three big surgeries, we were prepared for all of the worst scenarios, but L hit the best case scenario on basically every mark and came in right at what I had estimated would be our shortest possible stay (10 days). Here’s an overview of what it looked like:

Sunday, T-1 day: Admitted to the hospital for a bowel prep

  • We were told to be there at 11am, but since L didn’t need an IV or an NG tube placed we just hung out in the playroom until about 5pm.
  • We followed standard procedure for a bowel prep – NuLytely at 462ml/hour – and we were shocked that it didn’t rush through him. I was incredibly skeptical, but he actually required an extra hour of the bowel prep solution (run as a continuous feed through his g-tube) before he produced an substantial BMs. In all, he pooped a total of six times in about 15 hours.
  • On clear fluids only until midnight, when he became NPO. To our surprise, he did not get upset about that.

Monday: Surgery

  • Surgery took about three hours, most of which was working through adhesions from previous surgeries (but he didn’t end up doing the lengthening procedure which would have taken longer, just did tapering instead).
  • By 10am when we were in pre-op, L knew something was up and was getting upset about not eating/drinking.
  • Epidural went in at the beginning of surgery, after he was out.
  • At 3.5 months old he had 35cm of small intestine; now at almost 3.5 years old, that has grown to 105cm.
  • Tapering and lengthening turned into tapering and opening up a stricture, as detailed here.
  • Post-op: Slept for most of the next 24 hours. G-tube draining to gravity; 24 hours TPN; NPO. Asked for a drink once, but was not upset when I told him no.
  • High fever (103F) and elevated heart rate, which is apparently a normal response to gut bacteria that inevitably get out into the abdominal cavity.
  • Some pain control issues overnight, but doses of narcotics came quickly when we needed them.

Tuesday, post-op Day 1: Epidural and narcotics for pain; began stirring midday; out of bed in the afternoon; catheter removed; g-tube draining to gravity; NPO.

  • 24 hours out: first real smile, in response to tech’s Lightning McQueen lanyard. Still speaking less than usual, and mostly in whispers.
  • Fever down to 99-100.
  • Pre-op we were told he would need to stay in bed while he had the epidural, but they actually wanted us to get him out of bed at least three times a day. Tuesday afternoon he sat up on the couch for a while to play – I carried him over very gently and with full support, and he leaned against me, not sitting up on his own. He still had feeling and movement in his legs, just too sore and unstable to move much.
  • Asked for a snack and a drink, but did not get upset when told no. This is a child who has had RAGE at previous stretches of being NPO for any significant length of time.

wagonrideWednesday, post-op Day 2: more of the same.

  • Fever gone.
  • Wagon ride! And up and playing on the couch again. Much more personality back today – even some major giggles.
  • Still requiring full support to move (not using abdominal muscles at all) – and afraid of being moved, even if it didn’t end up hurting.
  • Without the catheter, he is not peeing without great concentration, and then only in small amounts. Increased fluids, but it seemed to be an epidural issue because he returned to normal urination as soon as the epidural was gone (Thursday night).

Thursday, post-op Day 3: more of the same.

  • Good day in terms of pain management. More willing to move.
  • Right at bedtime on Thursday, his epidural began occluding. Pain team could not salvage it, and we spent Thursday night without it and pulled it first thing in the morning on Friday. (Lasted around 80 hours.) Some pain control issues overnight.
  • More than 600ml out through the g-tube (that’s a lot considering nothing was going in); still dark green and opaque.

Friday, post-op Day 4: Upper GI follow-through; g-tube capped during imaging but returned to gravity afterward; still NPO.

  • Imaging took 5 hours; with the epidural gone, we were allowed to go to the play room in between. No leaks or other issues visible in imaging.
  • First post-op steps (in the playroom, of course!)
  • Did just fine with g-tube capped, but poured out several hundred mls immediately as soon as we let it drain again. Still dark green, and too much to leave capped; returned to draining.

Saturday, post-op Day 5: Approved for clears; drank a total of 1oz

  • Made it through the night without epidural or narcotics, but needed morphine before bed and upon wakeup.
  • At bedtime and at wakeup – panicking from the pain.
  • POOP! Five times in about three hours in the late morning, dark and loose, then no more for the rest of the day.
  • Very little drained through the tube overnight; some out in the morning on Saturday, but it was less volume and also less green, and after seeing poop they were content to cap it off and see how he did.
  • Allowed sips of clears, but did not take in much.

Sunday, post-op Day 6: Clears only; drank 9oz; tolerated.

  • Significant discomfort, but we suspect it was from holding in poops – he was afraid to go because he was afraid it would hurt.
  • 9oz total clear fluids; no vomiting.
  • Did not poop all day, until late evening when he squeezed out a tiny bit because he really really really wanted that damned Paw Patrol train set we’d been keeping as an ace up our sleeves.
  • Paw Patrol train set convinced him to play on all fours and reach across with apparently no discomfort.
  • Surgical resident approved crackers just before bedtime; L ate two. Apparently resident did not consult with GI because the next morning we were on soft foods only (no crunchy carbs, much to our pretzel-lover’s chagrin).

Monday, post-op Day 7: Soft foods; pain under control.

  • Approved for full diet of soft foods. Ate a few bites banana, peaches, cheese.
  • FORMED POOP. Formed. Solid. Pieces. Let’s take a moment to marvel at those little pale, smushy, miraculous tootsie rolls. 
  • Pain under control as long as he has fun distractions. Once he was tired and the play room was closed for the day, back to sad and uncomfortable. Until he remembers the Paw Patrol train.

Tuesday, post-op Day 8: Home.

  • Discharged on 20 hours TPN.
  • Our stay was a total of 10 days.

Wednesday, post-op Day 9: Appetite!

  • Significant afternoon discomfort – but may have been hunger pains?!
  • Very few bites at breakfast and lunch, then dinner: ⅓ mac and cheese, whole peach cup, slice of deli ham. Sips of liquid throughout the day.
  • TOLERATED ALL OF THAT!
  • 2 poops

Thursday, post-op Day 10: More of the same; still on 20hrs TPN.

  • Still hungry, not at all thirsty
  • 2 poops. Formed poops. We’re talking Play-Doh poops, guys!
  • Only discomfort is when tired; easily distracted by fun toys.

Friday, post-op Day 11: GI appointment. Cut to 12 hours TPN (to begin Saturday night). Still on soft diet.

  • Thrilled with weight gain and amount of intake he’s tolerating; cut TPN to 12 hours – he was on 10 hours before surgery.
  • Restricted to a soft diet for at least another week.

Saturday, post-op Day 12: More of the same; last day of 20 hours TPN.

  • AM: Best poop we’ve ever seen. Who wants to see a picture?! Because I definitely took a picture of it.  
  • Pain under control with no medication at all during the day; single dose before bed Friday and Saturday.
  • Drank almost nothing, because still running TPN 20 hours/day.

Sunday, post-op Day 13: First day of 12 hours TPN; hungry and thirsty; tolerating increased quantities; first day of no pain meds.

  • Breakfast: 2 cheese sticks, whole slice deli ham, ⅓ banana!
  • Drank around 16oz of Drip Drop and milk; tolerated it brilliantly.
  • Only 1 poop, right at wakeup.
  • Confident enough to go down the slide at the park by himself for the first time post-op.
  • Did not take a dose of pain meds before bed, and had discomfort throughout the night – possibly also related to going all day and all night without pooping.
  • Still not a single vomit so far.

bandaidsIn the days after surgery, L put Band-Aids on all of his cars and trucks and on each Paw Patrol pup. Yesterday, he took them off, because “they’re feeling all better now.” I think that is not insignificant.

We are keeping him home this week to make sure he continues to tolerate increased fluids, because we’ve really only just started that, and he is still on soft foods at least through this week (back to GI on Halloween), but since he’s down to 12 hours on TPN and seems to be flying through this recovery, he will most likely be ready to go back to preschool next week – just three weeks out from surgery. He is excited to see his friends!

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What to expect when you’re expecting surgery

I set out to write an honest post about what it’s like to be drawing close to a big surgery that could change our lives dramatically without knowing whether that change will be dramatically good or dramatically bad. I think that the best picture I can give of what that feels like is to say that right now, I’m not at a point where I can dive into all that.

Let’s just say there are feels. Lots of feels. So many that I kind of need to ignore the feels and stick with facts for now.

So here are some facts and tips from our first three experiences with big surgeries, along with some additions from other minor surgeries we’ve had along the way. L was only 3.5 months old at his last big surgery, so my facts and tips regarding those kinds of procedures are focused on tiny bodies and very early stages of development, and I don’t have advice for preparing older children to understand what’s about to happen – although I would love to hear yours, if you have some.

Here’s what I do have:

Ask questions. Early and often, and don’t stop until you’re satisfied with the answers. Write down a list of questions and bring it to appointments with you to make sure you get them all answered. Ask them to explain again if you don’t understand. Ask questions even if you don’t really know what you need to ask.

A good place to start may be to ask what kinds of things you should be asking, especially if you can connect with a knowledgeable and objective third party – a parent who’s gone through the same procedure; a specialist or surgeon who is familiar with the diagnosis or procedure but is not involved in your child’s care (i.e. before we met with the surgeon who’s going to be operating on L next month, I had emailed a surgeon at Boston Children’s and had inquired with specialists at two other hospitals in other states via friends, just asking what we should ask the surgeon and if they had any advice to help us make our decision).

And at L’s second surgery, our surgeon had expressed concern about keeping L under anesthesia for any longer than he had to after the two-hour mark, but we were expecting a minimum of four hours in the OR; in our pre-op meeting with the team, I simply turned to the anesthesiologist and said, “Make me feel better about this.” And you know what? She did.

img_3911You can probably accompany your child further than you think. If they don’t offer, ask. For L’s last line placement, I scrubbed up and carried him right into the operating table, then stayed with him and held his hand and talked to him while they put the gas mask on to start sedation. Plus then you get a cool paper outfit and neat hat and stuff that you’ll definitely want to keep for the scrapbook.

Do not do this if you’re going to freak the flip out once you get in there. Seeing the OR could be scary. Your child might struggle with being handed over, or laid on a table, or with getting the mask, or a number of other things. It’s a horrible feeling to watch your child’s eyes glaze over and drift away. If any of these things are going to make you lose it, don’t go in. You’re not taking the easy way out; you’re doing what’s best for your child. The surgical team needs to be focused on taking care of your kid, not on calming you down.

Anesthesia is scary – but in most cases, it’s maybe less scary than it seems. The anesthesiologist that I mentioned told me that there were people in the OR whose sole job was to monitor vitals and make sure that if there were any signs of adverse reactions, the surgeon knew to wrap it up immediately. She also told me that while extended anesthesia in babies and young children has been linked with developmental disorders and delays, it’s likely that correlation does not equal causation because children who undergo extensive anesthesia have a reason for needing multiple and/or lengthy surgeries, and those reasons are more likely to be the cause of those correlations than the anesthesia itself (i.e. L had gross motor delays, but he had his abdomen cut wide open three times and spent a good deal of his first few months flat on his back, for pete’s sake).

Ask for updates. Most hospitals probably have some kind of update system in place – we could see on a screen what phase of the procedure they were in based on a color coding system, for example. But ask what else they might be able to do. During L’s big surgeries, we had a nurse call my cell phone right from the ER to give updates on how things were progressing. This not only was a huge reassurance, but it also meant we didn’t have to sit in the heavy hush of the waiting room for 6+ hours. Which brings me to my next point:

Don’t just sit in the waiting room the whole time. Get up. Walk around. Eat something. Go outside. Bring a laptop and find somewhere comfy to watch something stupid on netflix. Maybe even laugh, if you can. You’re allowed to feel things besides fear and anxiety and dread.

Be prepared for post-op. Ask what to expect, and be prepared for it to not go 100% smoothly. This will vary greatly based on the type of procedure. If you’re expecting invasive neonatal or infant surgery here are some things I was completely and totally unprepared for:

  • Swelling. Preemies and infants are tiny. Surgeries involve an awful lot of retained fluids, and in an 8-lb person there’s not a lot of space for all that fluid to go. They cut open L’s belly, but the swelling extended all the way up to his face and right down to the tips of his toes. L was almost unrecognizable for a while after his big surgeries. That was hard, and made harder by how unprepared we were to see him like that.
  • Intubation. I knew they would intubate him. I was not prepared for the way it felt to see my child crying silently around a vent tube.
  • Pain management. It took a little while to find exactly the right combination of meds to keep him comfortable. And in the second week, when I was asked to weigh in on giving him another dose of narcotics or not, I was not prepared for the way it felt to see him slowly glaze over and drift away again and know that I had made that choice.
  • Unexpected outcomes. L’s jejunostomy was a difficult one, to say the least, and we thought it would be gone after his second surgery. The surgery was more complicated than we’d expected, and he kept that ostomy for another 6 weeks. It had not occurred to us that they wouldn’t be able to take down the ostomy at the second surgery, and so we felt a little defeated even though the news from the surgery was generally very good. If you’re up to it, hash out every possible outcome and complication with your surgeon before surgery so you can go into post-op as informed and prepared as possible.
  • Backward steps. Recovery = progress = moving forward. But sometimes, it’s not a straight line. Sometimes your kid isn’t ready for what you’d like them to be ready for. Sometimes there isn’t a clear finish line. Sometimes steps back are necessary for progress.

Accept help. People will probably offer. You will probably be inclined to turn them down. If you need something, don’t be afraid to say yes, and specify what you need.

Be gentle with yourself. Whatever you’re feeling? It’s okay. You might not react the way you expect. You and your partner might react differently. That’s okay too. Z tended to get emotional at all the appropriate times, like when we found out good news and bad news, and I tended to sit stone-faced through post-op debriefs feeling like an a**hole because I wasn’t properly emotional, but then cry at all the inappropriate times, like in the checkout line at the grocery store or driving 70 mph down the highway (that last one might be less okay).

If you find yourself needing more support, whether from family and friends or medical staff or a therapist – seek it. You’ve been through a lot, and you’ve spent most of that time taking care of someone else. Remember to take care of yourself too.

I’ve done this a few times, but I don’t claim to be an expert. This is the kind of thing that’s never quite the same, and always hard. If you have more tips or advice, please leave a comment!

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Adventures of Frankentestine: The Next STEP

A while back I mentioned L was having some imaging done, and then I casually dropped the fact that we may be facing another big surgery into a nice little feel-good story that turned out to be a not-so-subtle mention since everyone and their mother ended up reading it! So, now that we have some concrete plans on the table, I figured it was time to circle back and dig in to what exactly that means.

L’s gut is dilated. It’s far bigger around than it should be, and it has gotten significantly worse over the last couple years. That means that instead of pushing its contents along like you would expect, when it squeezes the stuff in the middle just kind of sits there, or some of it might actually go backward instead of forward, and that also allows normal gut bacteria to build up into not-at-all-normal amounts. Because of all this his gut (which is already at a disadvantage because such a big part of it is missing) definitely doesn’t digest the way it should.

We’ve tried a few things to push his nutrition in the right direction, and we haven’t seen the results we needed. So he’s back on TPN, and we’ve been talking about surgery to correct the dilation, and now that surgery is scheduled for four weeks from today.

There are two options: STEP and Bianchi. Both of them narrow the dilated gut to a more typical circumference, and at the same time increase the length of the gut, with the goal of dramatically improving bowel function.

The Serial Transverse Enteroplasty (STEP) procedure was pioneered at Boston Children’s Hospital, and as they helpfully explain, “the STEP procedure relies on the simple anatomic principle that the blood supply to the small bowel travels from the mesentery and traverses the bowel perpendicular to its long axis. In the STEP operation, special devices are used to simultaneously cut and staple the bowel in a direction parallel to this plane.” Got that? It’s simple anatomic principles.

Basically what that means is that in the much-wider-than-it-should-be tube of the dilated small intestine, they make a series of small cuts along each side that, when sealed with staples, make a narrower zig-zag tube out of the formerly wide straight tube, like so:

step-illustration-2

The Bianchi Procedure is a slightly older procedure that essentially takes the dilated tube of the bowel and cuts it lengthwise (if you can dig back to elementary school art class, that would be hot-dog style) and makes two narrower tubes out of the one wider tube, then sews them together end to end so you wind up with about half the width and twice the length. For your viewing pleasure:

bianchi-illustration

The STEP seems to be increasingly popular, but for a number of reasons that we are completely in agreement with, our surgeon prefers the Bianchi for L if possible. It doesn’t lend itself to punny blog titles quite as well, but the Bianchi does have a slightly lower risk of complications, and if it’s not successful, it’s much easier to do a follow-up STEP after a Bianchi than to do a Bianchi after a STEP. But either could be tremendously successful for us, and that will ultimately be a game-time decision in the OR.

The neat thing about these surgeries is that, if all goes well, he will not only end up with a much narrower and more efficiently-functioning gut, but also with as much as (nearly) double the length in his small intestine.

The less neat thing about these surgeries is that there is a 5-10% chance of a number of complications that adds up to about a 20-25% chance of things not going 100% smoothly. This is not comprehensive, but potential complications include:

  • Because blood flow has been rerouted in his gut after all the previous surgeries, some blood flow could be severed which would result in a lost section or sections of bowel.
    • Although unlikely, it’s possible that this could result in the return of our old 2013 foe, The Ostomy.
  • Because of all the cutting and stapling and sewing and attaching, there’s risk of a number of different versions of bowel leakage (like fistulas and abscesses). If these occur and don’t resolve themselves, they could require further surgery and result in more lost bowel.

The bright side to both of these possibilities (although what’s not bright about abscesses and ostomies, amiright?) is that even if he ends up losing more gut, it should still work better. In theory, we’re working from a post-op ideal outcome of double the gut, so losing half of that would put us at the same amount of length but much narrower, and so much more functional. In theory.

The other fairly obvious complication, if you can call an expected outcome a complication, is that his gut will have to re-learn some things. We’ll be essentially starting over with feeds, moving to 100% TPN for the week or so after surgery and then slowly adding in oral and enteral (tube) feeds. The goal will be to gradually shift the ratio of calories he’s receiving from TPN to oral/enteral, and eventually come off of TPN altogether.

He may bounce back relatively quickly, but it could also be a very slow process. This is a wait and see kind of thing. Hello again, NOT KNOWING.

It’s scary. Recovery will probably be frustrating. It’s possible this will leave us in a worse spot than we are in now, and it’s difficult to choose something that has a chance of a worse outcome, especially since L feels great since he’s been back on TPN. But the reality is that if we do nothing, he will continue to have immense nutritional struggles and difficulty growing, and sooner or later he would wind up with liver damage from long-term TPN and then might need small bowel transplant or liver transplant or both, neither of which are likely to be as successful as the STEP or Bianchi are likely to be. And there’s a 75-80% chance that he will fly through all this with absolutely no significant complications at all.

This is our next step. It’s a very big step, and it’s very likely to be a step in the right direction. It could be huge for L, and for all of us. This surgery is scary, and difficult, and overwhelming, and it’s hope.

Original diagrams courtesy of University of Michigan Children’s Intestinal Rehabilitation Program, with helpful labels added by ThisGutsyLife.

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