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.
- 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.
Wednesday, 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.
In 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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