Red, Red Wine: the story of a boy and his Neil

Last year for Halloween L dressed up as Neil Diamond. neil-1

This is the story of why, in the year 2015, in a classic-rock-and-Black-Crowes-loving household with a fire truck-obsessed child, there was absolutely, without question, no better costume for my two-and-a-half-year-old son.

Once upon a time when L was about nine months old, I bravely took it upon myself to drive the four hours to my hometown with L, alone. “Everything’s gonna be fine!” I thought to myself. “I’ll leave at bedtime and he’ll sleep the whole way there.” And that is indeed what happened – at first.

Two hours into our journey, just as I was congratulating myself on my prowess as a capable, independent mama and thanking the Lord for the night time – L woke up. With a fury.

I tried to soothe him. I offered a bottle. I offered a pouch. I pulled over at a rest stop and bounced around a few empty parking spots with L and his TPN backpack. He. did. not. care. This was not his crib and he did not want to be strapped back into the car and he was ANGRY AND EVERYONE MUST KNOW IT. I finally gave up, bundled us back into the car, gritted my teeth, and turned up the music, resigned to another two hours of car seat rage. He screamed through Robert Plant. He screamed through John Lennon. He screamed through Aretha. He screamed through Chris Robinson and Pete Yorn and Eddie Vedder and Dave Grohl. And then – NEIL came on.

In the still of the night, as the first bars of Neil Diamond’s “Red, Red Wine” filled the car, a miracle occurred. L grew quiet.

The glorious calm lasted only until the song ended. Skeptical but hopeful, I hit the back button. “Red, red wine….Go to my head….

Silence. Two minutes and 42 seconds of delicious silence.

When he began to scream again, I put the song on repeat and held my breath – and lo and behold, he immediately quieted. Amazed and confused, I listened to that beautiful noise for the remaining 45 minutes of our drive.

Two days later, it was time to embark on the long way home. I was certain the wondrous musical salvation I had experienced on the drive there had been a fluke and was preparing for a long, rage-filled ride. Again we left at bedtime; again L made it only about halfway home before waking up; and again – FURY.

I did not hold out much hope, but I resolutely turned up the volume and searched for Neil. “Red, red wine….Go to my head….Make me forget that I….Still need her so….

SILENCE.

From that point on, I was a believer. Going for a long drive? Neil Diamond’s “Red, Red Wine.” L won’t calm down at bedtime? Neil Diamond’s “Red, Red Wine.” Holiday travel? We listened to Neil Diamond’s “Red, Red Wine” on repeat for more than 20 hours in one three-week stretch of December 2014.

Red, red wine
Go to my head
Make me forget that I
Hate my car seat

Red, red wine
It’s up to you
All mom can do, she’s done
But yelling won’t go
No, yelling won’t go.

I’d have sworn that with time
You’d get used to your car seat
I was wrong, and I find
Just one thing makes you not scream

Red, red wine….

It was consistent and effective. If L was upset, Neil Diamond’s “Red, Red Wine” quieted him almost immediately. Other Neil songs would not do. Other versions of “Red, Red Wine” would not do. L knew what he liked, and what he liked was Neil Diamond’s “Red, Red Wine.”

From January 2015 through the summer, we didn’t drive much. After a while, our Neil addiction dwindled. Then, at a little over two years old, L started going to school and we started spending more time in the car. Z and I thought our commute offered a great opportunity to provide a little musical education for L. And one September morn, I wondered….we hadn’t played this song in months. At nearly 2.5 years old – would he remember?

I put it on. He grew still, listening. “….It’s tearing apart….My blue, blue heart.” /closing bars.

“MOAR!”

Hello again, “Red, Red Wine.”

Every day on the way to school: Neil Diamond’s “Red, Red Wine.” It came on the radio once in his classroom and when it was over and they couldn’t play it again, he sobbed. When I picked him up from school, I was the one getting side-eyes from the other parents for carrying the toddler who was yelling, “Mama! Car! Red wine! RED WINE CAR!” all the way down the hall and out into the parking lot.

imageWhen he entered school in August our feeding therapist was pushing for a speech evaluation because he didn’t have a big enough vocabulary. By the end of the winter, he could sing every word. And we let the little boy sing.

Forget lovies and soothies and mama snuggles – all he really needs is you, Neil Diamond.

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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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Gutsy Surgery: Post-Op Recap

image.jpegI thought I might be able to blog a bit as we went along, but it turns out that instead of knocking him out for a few hours at a time, morphine makes L feel FANTASTIC and not nap and stay up until 11:00 giggling and telling me all his secrets, so I haven’t had much downtime in the last week! So here’s a brief summary of what happened during surgery, and I’ll try to come back and fill in more as time and L permit.

The surgery we had planned was supposed to be tapering and lengthening – either Bianchi or STEP, as outlined here.  The exact method was supposed to be an operating room decision based on what his surgeon saw, and once he got a good look, tapering and lengthening turned into tapering with no lengthening, but with the addition of correcting another problem area we had not seen on imaging.

He decided against the lengthening technique for two reasons:

  • He found 105cm of small intestine, which is ENOUGH. In theory, if the gut works mostly as it should. Proportionally, it’s about the same percentage of the typical length of a healthy gut for this age as what he had at 3.5 months when he had only 35cm (20%).
  • The lengthening technique only works on dilated bowel, and not all of his small bowel was dilated – only about a third of his remaining  (coincidentally, it was the upper third that had previously been intact). That meant that lengthening would not double the length; in reality, it would only take us from 105cm to maybe 120-125cm, which is not likely to make a significant difference.

Since lengthening is riskier and he was happy with the amount of small bowel he found, he just tapered (narrowed) the section that was dilated rather than doing the lengthening procedure.

But he did also open up a stricture (place that’s much narrower than it should be) at the point where small intestine meets large, which had been surgically reconnected in 2013, that was preventing things from flowing through properly and so was causing some backup inside his gut that probably ultimately caused or worsened the dilation, and was almost certainly interfering with normal digestion.

Between those two things he’s hopeful this will make the difference L needs to eventually come off of TPN. We initially felt a little let down, probably irrationally, that we’re going through all this and didn’t actually do the procedure we thought we were doing, and we have concern that this still won’t fix the absorption issues and so still won’t get us off of TPN. But we’re trusting him for now. And we should be looking at this as a less risky procedure that might prevent us from having to do the riskier surgery, with the idea that we may also be able to come back and do a lengthening procedure at some point in the future if necessary.

Recovery from the tapering procedure remains pretty similar to what we expected going in – it’s just less likely to involve additional complications (things that would prolong our stay, prevent the improvements we’re hoping to see in his nutrition, and/or would have resulted in lost bowel in the OR or afterward).

For anyone following along because you may be facing a STEP, Bianchi, or other major intestinal surgery yourselves, stay tuned for a more detailed timeline of the first week post-op. And thank you all, so much, for all of your support through this past week and beyond.

#GutsySurgery

When the time came for L’s second and third big surgeries, Z and I were still in a mental and emotional zone that we needed to shut people out of, for the most part. We requested that our families not come to the hospital; we told people we would update them when we were ready.

While I stand by our decision to do that – it was what we needed at the time – I also understand how difficult that may have been for some of the people who care about L the most. Since then, I have gradually learned to open up, begun to feel the tiniest bit in control of our situation, and learned how freeing it can be to speak openly and honestly about what we’re going through. And, I have learned the value of hearing about the experiences of others in similar situations, and I want to offer that to others out there who may be afraid of what’s ahead for them.

In light of all that, I’m planning to share our experience with this surgery via simple Twitter updates. I’ll try to update on the blog as well, but I don’t know how soon or how often I’ll be able to offer anything longer than 140 characters.

I reserve the right to bail on that plan at any time. If things are rough, my best intentions may go down the metaphorical crapper. I may be literally elbow deep in poo, and sorry guys, but the sanctity of my iPhone screen takes priority over live tweeting (#Germs #ForeverUnclean). But I will do my best, because as much as it was important to me to protect ourselves by shutting out the outside world three years ago, it’s important to me now to begin to let you all in.

If you’re ready to follow along on this journey, follow @ThisGutsyLife on Twitter and join in the conversation with messages, questions or #GutsySurgery stories of your own.

L goes back to the ballpark

When my post about the Cardinals usher helping us find milk went viral, the Cardinals and the local news and various other people tried to contact the usher, but no one could get in touch with him in time to include him in the coverage that was popping up right and left. I was bummed that it seemed we had missed the opportunity to properly recognize him despite all the coverage, and I was also worried he didn’t want the attentionimage I had inadvertently brought him.

This past Saturday the Cardinals brought us back to the ballpark for an interview, and we were finally able to reconnect with the kind soul at the heart of my little story. It turns out he had been out of town and off the grid for the weekend, and had no idea he had become so famous until he saw the abnormally large number of notifications on his phone when he returned!

The usher – his name is Scott – was there in section 267 to meet us, with a goody bag for L stocked with a baseball, a Fredbird pennant, a Cardinals Build-A-Bear and plush Clydesdale, stickers, and a shirt to grow into – and, of course, a bottle imageof milk (although rest assured, world, we came fully prepared this time and will probably never go anywhere without milk ever again!).

Scott and his wife proved to be just about the nicest people I’ve ever met, and we were thrilled to be able to thank them in person and offer an actual thank you card complete with original fire truck illustration by L (because a fire truck expresses the very highest form of gratitude, obviously).

We did spend most of the game walking up and down all the stairs and ramps in the stadium searching for Fredbird (whom we found not one, not two, but three times, because once just wasn’t enough), but we also managed to see all the runs that wimageere scored and actually stayed for the entire game (innings 8 and 9 brought to you by Disney Toys Review on YouTube. I have no regrets).

Big thanks to Scott and to the Cardinals, and even more so because this outing couldn’t have come at a better time. We have taken it upon ourselves to have Epic Weekends leading up to L’s big surgery next week; Saturday was baseball and a birthday party, and Sunday centered around football, the fire truck playground, and filling the bathroom sink with shaving cream (L’s request). On the docket for next week: breakfast at The Restaurant with the Car Playground, a trip to the pumpkin patch, and, most fun of all, a bowel prep (who’s jealous?).

Stay tuned for our story in Cardinals Insider in a week or two!

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