The Flu, and Farewell to 2014

Two posts in one week?  We must be inpatient...

The Great Influenza of 2014

You know, I'd just been saying to Tom that it was going to be so nice to have one nice healthy Christmas for Aidan.  So, truly, I asked for this.

It started on Saturday (12/21).  He was fine all day - he played all morning, went to Occupational Therapy and was actually fairly cooperative, went for a haircut and walked around the mall on his own feet, and then we all went grocery shopping.  Long, productive day.  So when he seemed a bit extra tired and cranky, we weren't too concerned - no nap will do that to a guy!  Things went downhill fast after bedtime - his breathing was fast and shallow, and although he was keeping his sats up around 95ish, his heart rate was high and he had a low-grade fever.  Something was brewing. Every 20 minutes, he'd wake up and cry, needing to be held and comforted back to sleep.  He complained that his tummy hurt and started gagging and retching - sure he was going to throw up (we know that he really can't, but when he's nauseous, he's so sure that he will).  

By morning, he was clearly sick.  Slumped halfheartedly in his beanbag chair, refusing to walk because "my feet hurt for walking, so carry me mommy!", feverish, lethargic, and still retching.  

I busied myself around the house, finishing up dishes and laundry and other things that needed to be done to get the house in order, while playing the "hospital or not?" game in my head.  I called Urgent Care to ask if they could do a rapid flu test - they couldn't, but advised what I already knew.  Half an hour later, we were en route to CHOP.

The ER was a madhouse - clearly, everyone ELSE in the world was ALSO sick on Christmas week, so we waited about an hour to be seen.  Aidan spent that time practicing his "If I look really sick, and super sad, will it get me more presents for Christmas?" look.  It isn't not working...

Once we got a room - and a pretty SWEET room too actually (it had an en suite bathroom!), we settled in for nine hours of who even knows what.  They did some bloodwork, suctioned him for flu/RSV testing, placed an IV (the usual drama ensued), and gave fluids and sugars.

Aidan looked suitably sad the whole time.  Eventually, he was admitted upstairs for IV fluids and sugars while he got through whatever virus was taking him down.  We'd later find out that they sent Aidan's flu swab on the slow boat to China because they didn't think flu was likely, but oh guess what, he tested positive for flu.

Anyway, once we got upstairs, (new room!  5S4) Aidan and Daddy hung out for a bit while I went down to the car to get my overnight bag, where I discovered much to my extreme dismay that I forgot a vital piece of work equipment, and I had to drive all the way home for it.  An hour each way.  At midnight.  Kill me now.  So yeah, I did that, and came back with some awesome Sofia the First action figures for Aidan from Santa.  

You might be thinking they look just like your daughter's dolls.  So close.  But not quite, because they're obviously action figures.

Anyway, uneventful night, except for all of the blood sugar testing and such, and we got the flu Dx and first dose of Tamiflu in the morning.  It must have made him pretty drowsy, because the poor kiddo was out like a light for most of the next afternoon (Monday, 12/22).

We were able to get him back up to full feed rate and no IV, despite some icky GI side effects, so this flustravaganza was only a 1.5 day affair, which might actually be an all-time record low (way to go, Aidan!).  Very happy to bring him home and spend Christmas at home and (relatively) on the mend.

So long, CHOP!  See you in 2015!

CHOP in June - Part 2

EEEEEK!  It's AUGUST and I didn't finish telling you about our trip to CHOP in June.  Life really got away from us.

When you left us, Aidan had been painfully vomiting green bile.  After a weekend of this, we were sent to the ER for some tests, and ultimately allowed to go home.  A week passed without improvement and we followed up with GI, who sent us directly back to the ER, where Aidan was admitted on a Friday night.

Saturday on 5 South was exceptionally uneventful - no feeds for Aidan and no vomiting.  Scattered episodes of stomach pain, but nothing severe.  Around lunchtime, we started Pedialyte at 35ml/h (half of his normal rate) and it was tolerated well.  Around dinnertime, we increased to 70ml/h and after some initial discomfort, he settled down and tolerated that well too.  I don't know - maybe he just needed some gut rest?

A gut at rest :)

On Sunday, the doctors rounded around 10am and came up with a plan.  We'd be starting feeds slowly and increasing every four hours as tolerated.  If he had an episode, we'd call radiology for emergency imaging.  If not, we'd do imaging on Monday morning.  I figured we'd have a quiet day.  But it wasn't without bumps in the road.

For instance - did you know that if your child is on PurAmino, you should come prepared for no one - ever - to have heard of it?  For the formula room to insist they don't have it?  Nor do they know how to mix it.  Tom had to make an emergency trip downtown with a supply of formula to save the day.  When it arrived, it took hours - literally, hours - for the formula room to figure out what to do with it.  The kicker?  They eventually realized that they did have it (still didn't know how to mix it, so thankfully I recently blogged about how we mixed it - otherwise there's no way I'd have remembered).  Long story short - the 10am decision to start feeds actually took effect at 3:30 due to all of that hoopla. And advancing feeds every 4 hours?  HA!  We got up to 45ml/h before having to go NPO.

Sunday also brought some stoma pain - It's looking a little bit infected, which is a shame since it's normally such a beautiful stoma.  They ordered up some mupirocin (easy enough) and some tylenol, which caused a(nother) pharmacy debacle.  See, we don't use their tylenol, we use ours.  They don't have dye-free tylenol because dye allergies aren't real, evidently.  So we have to bring our own and send it to their pharmacy, where they verify it (whatever that entails) and eventually it arrives back in our room to be administered.  Unfortunately, the "eventually" is sometimes a while. Like an hour or two.  Which is really unfortunate for a kid who's in pain.  I later learned that the order was written incorrectly, which confused the pharmacy.  Then the pharmacy wrote a confusing note back to the doctor, who was (you guessed it) confused.  Then our nurse inexplicably left the floor without her phone, and the nurse filling in knew nothing about it.  Sigh.  We did work it out eventually. 

So as of Sunday evening, the plan to advance feeds was pretty well compromised, because he would have to be NPO (nothing by mouth.  Is that common knowledge?  I don't know if pre-all-of-this-me knew those particular letters, but we know them well now) at midnight in preparation for tomorrow's Upper GI.  We'd started at 35ml/h at 3:30pm, and around 8:30 we moved up to 45ml/h, but no further advancement because of the looming Upper GI.

An Upper GI is a special kind of X-Ray that helps doctors see the gastrointestinal tract.  Preparation includes drinking barium contrast (so some people call this a "barium swallow study") and then taking lots of pictures - usually about 2 hours' worth, and sometimes even more!

On Monday, we woke up just in time for the Upper GI.  Aidan took one itsy bitsy sip of Barium and then couldn't be convinced to take more.  Luckily, we aren't too concerned about the "upper" part, and really just needed to see the barium move through the stomach and small and large intestines.

The first thing we did with the Upper GI was take a "before" picture - his tummy without any Barium.

I spy a tummy!

 Then, Aidan took his tiny sip of Barium, and they took X-Rays.  And then Barium was injected into his G-Tube, and more X-Rays.  Then we got to cheat a bit, since he has a J-Tube too.  We got to inject Barium into the J-port, and the tech said that he thought we'd get out of there early!  After that, we had to wait in a little room for 20 minutes while the Barium moved through his intestines, and then back to the X-Ray machine for more pictures.  I'll speed this story up and tell you that we did not get out of there early, even with the cheating.  The tech was thinking we might only need one or two cycles of waiting/pictures - so we'd be done in less than 90 minutes total.  Actually, it took over four hours.

Ho hum.  Waiting is the worst!

Aidan's motility is not the best, even on erythromycin (his motility med), so the Barium really just wasn't moving through like we hoped it would.  It took forever.  But eventually, we did get a belly full of Barium.

We'll file this away under "things only a mother would love"

When we finally got back up to our room, Aidan took a nap and I got some work done while waiting for the doctor to come talk about the results and our plan for him.  Turns out it would be a preposterously long wait, since GI never actually came back and eventually left for the day.  Thanks, jerks.

Dainty

When GI came back the next day, we did learn that Aidan's Upper GI was not normal.  We already know that he has delayed gastric emptying - when food (or formula, whatever) is introduced into his stomach, it doesn't move through at the normal rate.  This is why it took so long for the Barium to move through.  The test also showed some not-too-specific inflammation of the colon - which could be from normal illness, or could be from an EGE flare.  Not really any more information than we previously had.

Ultimately, we decided to bring Aidan home, with orders to return immediately if the bilious vomiting began again.

It was more or less the same as ever.  Aidan in crisis, needs gut rest and IV fluids for several days, and a slow reintroduction of feeds.  I wish I knew why this keeps happening to him :-(

Side Note...

The whole time we were inpatient, Aidan was on contact precautions due to a suspected c-diff infection.  The hospital was unable to confirm or rule out the infection because - true to form - Aidan's digestive system shut down and no test sample could be obtained.  This particular monster would come back to bite us later on.

Final Thoughts...

I understand that CHOP is ranked #1 by US News & World Report, but clearly, they've never actually stayed here.  Or they don't have children.  Or they don't need fancy luxuries like a pillow to sleep on.  I do wonder how different our experience would be with a planned admission for a surgery.  Emergency Room visits that end in admissions are just always so nebulous and vague.  Who knows what we're doing or when we're going home?  My experience here would be at least 80% better if doctors could be bothered to clearly communicate. 

CHOP in June - The Time We Went For Bile

It's been such a long week.

I'm going to warn you right now - the words "poop" and "vomit" figure prominently in this update.  Turn back now, ye faint of heart.  This is a poopy/vomity life we're living and I wouldn't even begin to know what else to write about this week.  No pictures though.  You're welcome. :)


It all started on Friday.  Friday the 13th, and a full moon (I should have known that trouble was brewing).  I got a call from school that Aidan woke up from his nap throwing up.  These days, Aidan's not a pukey puppy, so it's a good sign that something's up.  Tom picked him up and brought him home while I wrapped up at work and headed homeward myself.  Once he got home, Aidan continued throwing up and started pooping.  Of note - the vomit was green.  The poop was very light - almost white.  And while he vomited, he seemed to be in serious pain.   But once he stopped - he seemed fine again.  Tired, maybe a little bit listless, but playing and fairly happy.

This continued through the weekend, but the weird thing was that when he wasn't throwing up, Aidan seemed pretty normal.  Not sick.  Low-grade fevers that came and went, but nothing scary.  By Sunday,  I was concerned with the amount (and color) of stuff coming out of him, so I spoke with the Pediatrician on call and the GI on call at CHOP.  Everyone agreed that there were tests that needed to be done, but that as long as he was hydrated, there wasn't a rush.  He could be seen on Monday.

Monday morning, the Pediatrician spoke with our GI, who said that he couldn't do any testing in the office, and directed us to take him down to the CHOP ER.  So we did - X-Rays showed the tube had not migrated up to his stomach, but there were irregularities with his intestines.  His colon looked enlarged.  His bloodwork was fine though, so after 7 joyous hours in the ER, we went home.

Maybe it's not so bad here...

Getting an IV is hard work!

Take me home, mom!

Tuesday, Wednesday, and Thursday passed in a blur of more green vomit and extra-foul poop.  We followed up with the Pediatrician, who sent off samples of poop for parasites and c-diff (still awaiting results), and on Friday, we saw our GI in Exton.  He was unhappy with the action taken in the ER on Monday and felt that we needed to return to the ER for a dye study.  So, of course, we did.  We drove into Philly on a Friday afternoon.  In Friday afternoon Philly traffic.  Awesome. 

Back again?

Really?

We got to the ER around 4:30, and a repeat X-Ray was taken.  Apparently it looked better than Monday's X-Ray, but still not great (I wish I could say more about this.  I've actually seen both of them, I just kind of nodded and mmm-hmm'd and had to pretend I knew what was going on).  Repeat bloodwork was still good.  Essentially, no one knows why we're getting this crazy poop or green vomit after over a week with no other signs of illness.  You'd think that with a GI bug, he'd at least be acting sick - which makes us concerned that it's a structural problem.

Placing a new IV when the bruising from the last one hasn't healed yet breaks my heart.  He's a trooper, but still.  My heart.

Pre-IV hot packs.  Also, He's starting to look like such a big boy.  When did that happen? 

Post-IV tears.  Sorry, bud :(

Funny side story about the ER - we were stuck there all evening, even though we knew he was being admitted, because his nurse upstairs went into labor and the floor couldn't take him until they found another nurse to come in.  It was 1am before we got him into his bed on 5 South.  Aidan was a good sport though - he managed to double-fist mobile devices even with only one hand available.  He's amazing.

Anyway, long story short - GI decided to admit him and observe him (I think this is our first time in 5 South 14), hoping to catch him vomiting and ultrasound him then to see what was going on.

Things we've discussed - it could be another intussusception - which comes and goes, causing pain when it's happening and no pain when it's not.  It could be an ileus (blockage in the bowel).  It could be just an EGE flare.  Or it could be that he's "normal kid sick" - which is certainly what we're hoping for.

It's odd, because this is the least sick Aidan's even been while at this hospital.  He's acting totally fine at home, except for when he stops what he's doing, screams, and vomits a particularly spectacular shade of green.  And then he's fine again for a few hours.  Rinse and repeat.

Side note - our first clash with the CHOP machine happened mere minutes after we settled into our room.  His night meds came up from the pharmacy, including some bright pink erythro.  I was probably too tired to be nice about it, so all I said was "He can't have that."  Aidan has a red dye allergy, and I know that it's documented in his chart.  The nurse looked at the (clear) syringe full of hot pink medicine and said - I kid you not - "What makes you think it has red dye?"  Uhhhh...  It's pink.  "Right.  Well, it's not red, so..."  Pink being a shade of red, and me not being terribly familiar with too many commercial food-and-drug-grade pink dyes, there's just no way he's taking that med.  Thankfully, I anticipated this disaster and brought our own.  A call down to the pharmacy revealed that there's "only a little bit" of red dye, and "dye allergies aren't real allergies", so they recommend just giving it to him.  No.  No thank you.  And thanks for the heads up that you can't be trusted at all.

We're off to a promising start...

As I write these words, we're still here at CHOP - so the inpatient part of this story is still being written.  Stay tuned.

Aidan's First Ambulance Ride

Laundry.  Dishes.  Catching up on work.  Watching an episode of True Detective.  These are the things I thought I might be doing on a Tuesday night.

Aidan had other plans.

Aidan usually has other plans.

That looks suspiciously like an ambulance...

It started on Monday.  Aidan's teacher had called to let me know he seemed "off" and "half of his head had a fever" (???)  When we got him home, he seemed happy and playful, so we weren't too concerned.  I was in the kitchen washing some dishes when he ran over and asked, rather frantically, that I take his sweatshirt off.  I guess his fever was spiking pretty rapidly at that point.  I thought he was just being Aidan and/or Three Years Old, so I told him to be patient until I was finished.  No more than five minutes later, I joined him in the living room as he projectile vomited all over the living room floor.  His temperature (on both sides of his head, thank you very much) was 102.

I gave him tylenol and put him to bed - he seemed okay, but would be up several more times needing tylenol for his 102+ fever and vomiting in his bed.  It was a long night.

The next day, I left him with Tom and went to work.  Tom let him sleep in, and when he woke up, he seemed fine.  Not feverish and not vomiting.  We decided to give him some gut rest, so put him on pedialyte feeds for the day.  Tom dropped him off at daycare (in retrospect, probably an error in judgment), but daycare called in the early afternoon to report that he had a 102+ fever and was "shaking uncontrollably."  Tom picked him up right away.

At that point, I was thinking that this seemed very similar to Aidan's flu symptoms, and I wanted him checked for flu quickly - if it was the flu, we could still get him tamiflu and hopefully avoid the weeks of misery and weight loss that accompanied the illness last month.

Aidan's pediatrician was booked solid until the next day, so I decided to take him to Urgent Care - thinking that surely they'd be able to administer a flu swab.  When I got home from work, Aidan was doing pretty well - likely thanks to the tylenol Tom had given him that afternoon.  I held off on taking him to Urgent Care- just put him to bed and hoped for the best.

Around 9:30, Aidan woke up feverish (102.4) and vomiting.  We immediately sprang into action - packing him into the car and heading for CHOP's new Urgent Care facility in King of Prussia.  We arrived around 10:30 (whew!  they close at 11.) and Aidan was still vomiting in the waiting room while I was checking him in.

Urgent Care got some tylenol into him, drew some blood for labs, and started an IV, but because of his high heart rate and dehydration symptoms, they decided to transfer him (via ambulance, no less) to CHOP.

Aidan was none too pleased with this plan.  He hated the restraints, he hated the "big truck" (he specifically asked for a "tiny truck"), and they didn't take him to "Aidan's House" as requested.  Oh well.  That's disappointment for you. 

It's like a really big rear-facing carseat, because safety first!

Watching them strap him onto the stretcher was actually kind of scary.  I guess I didn't realize how sick he was.  I was looking for a flu test and an Rx.  But don't get me wrong - I'm thankful that they recognized he needed more support.

When we arrived at CHOP (around 1:30am), I learned that he had orders for a direct admit.  I was confused and exhausted - and of course didn't have my perfectly planned and packed hospital bag or ANY of my work things.

The Emergency Department was full, so I was glad that Urgent Care had secured him a spot - because the GI floor was also full, and it would be four more hours before a bed opened up on 5 South.

Sleepy Bear

Sweaty Bear

Not much happened down in the ED - we really just hung out, kept him on IV fluids and nausea meds, and waited for his bed upstairs.

Finally, in the early morning hours, we made it up to 5 South - to the same room he stayed in last March, when all hell broke loose with his stomach and we had his GJ placed.  Small world.  Small GI floor.

Back @ CHOP - Feeding Woes, What Else Is New?

It's only been a month since I've written.

It's already been a month since I've written.

Here we are again.  Like so many other times, the day started out fine.  We were having fun, being silly, taking photos for our Christmas card.  Aidan was in a good mood and no one knew anything was wrong. 

I'd noticed that he hadn't pooped since Friday morning - not something I'm constantly pondering - but when you have a GI kid, it's always in the back of your mind.  I gave some meds to get things going and didn't give it another thought.  We ran some errands, and I actually (insert famous last words here) remarked that he was in a good mood.

As the day wound down, Aidan sat in his high chair with a lollipop, while I cleaned up the kitchen.  I heard his episode of Bubble Guppies end, but no accompanying plea for "Moah Guppies!"

I found this:

My Grandfather on Christmas Day?  Close.

Super cute, right?  Tom and I took pictures and made appropriate amounts of fun of our little old man.  But then he woke up hard.

The all-too-familiar inconsolable screaming.  My mind instantly flashed back six weeks, to the Great Intussusception of 2013, and I immediately knew I had to call the doctor.  Of course we lucked into the practice's worst Pediatrician on call - but it probably didn't matter - we know by now that the Pediatrician can't help us.  He told me what I already knew.  I needed to get him to an ER.  Now.

We made it down to CHOP by 7, and were ushered into a small room called The Wedge - basically a tiny and oddly-shaped triage room that wasn't in use, but served to keep Aidan from freaking out in the crowded ER waiting room.  I appreciated it a lot.  We were triaged and taken back to ER Room 47 - a weird little out-of-the-way corner room with no outside foot traffic (and no working sink.  Yummy.).

By 8:00, we had a plan.  We would X-Ray him to check for belly problems - constipation, gas, the basics - ultrasound him to check for intussusception, and keep an eye on his blood sugar, since he was off feeds and not on an IV.

Absolutely COULD NOT get comfortable :(

The X-Ray happened around 9 and didn't show anything too significant.  Some backup, but nothing earth-shattering.  Two hours later, we finally got the ultrasound, and it looked okay - but we were cautioned that an intussusception is very hard to catch on an ultrasound.  It can telescope - go in and back out - so it can be fine one moment and then very not fine the next.  But as I said - the ultrasound looked okay, and no one really had answers for Aidan - so around midnight, GI was paged and the admission process was initiated.

Around 12:30, at GI's recommendation, they gave a suppository - but there was no effect.  An hour later, an IV was placed, and by 2am, we were brought up to trusty 5 South (5S11).  We settled in and I spent an hour or two working and rescheduling meetings before passing out for a couple of hours.

Zzzzzzzzzzz

After three luxuriously interrupted hours of sleep, I was up for the day to meet with the Attending, and talk next steps.  We gave Aidan an enema in hopes of moving things along for him, but with really unexciting results.  Aidan was given meds by G-Tube, which he promptly vomited.  Over the course of the day, the Attending avoided us like the plague - nothing happened for Aidan at all, other than that he slept and seemed to move past a lot of his discomfort.  He settled into a pale and lethargic state that made me feel absolutely awful for him.

 

Finally, toward early evening, I cornered the Attending and forced the conversation.  What are we doing?  Well, it seems that his GI tract is shut down right now.  What would do that?  Well, you know, we talk about viruses...  

The V word.  It's the dirty doctor word for "I don't know, but I need to say something, so I'll say this."  A virus is a thing that you don't treat - you just wait for it to go away - and it's the most frustrating thing for a parent, because when your child is hospitalized, you want someone to DO SOMETHING!  Fix him!  Make him better!  Help him!

But sometimes you really do just need to wait, and watch, and hold him when he cries.  And then celebrate the successes - like when he's feeling better enough to make a mustache out of his IV tubing.

This kid... I can't even...

I suppose at some point, someone should start trying to feed this guy.  I wish someone would tell me why his GI tract just stops working for no good reason.  While we're making wishes, I wish someone would tell me why his stomach stopped working at all last January.  And why we're now expected to shovel strawberries into it with any measure of success.  But that's another rant for another day, and I'll really, really try to come back and write about it before the next hospitalization.

Bananas - Day 1 & CHOP ER

Banana Day kicked off with the purchase of a bunch of bananas.  It should have been pretty simple - enter store, obtain bananas.  But I was nervous!  How do parents of eaters choose what to buy!?  Am I supposed to buy organic??  Does it matter?  (FWIW, I did, and not because I have any particularly strong feelings one way or the other - but rather because I figured it made sense to introduce as few factors as possible into the equation.  Also, when you're only buying one food, buying organic isn't such a financial hardship.  Especially when it's bananas, and the difference is 69 cents vs. 49 cents.  But I digress.)

The long-awaited Trial Bananas!

Once the bananas were chosen, I then had to actually feed the child.  Easier said than done, especially since I'm a weenie.  I actually figured we could just do it with his OT present, since we knew we wanted to do it on a Saturday, and she comes first thing on Saturday mornings.  So Saturday morning, around 9:30, it was Banana Time.

My next hurdle was presentation.  What was I supposed to do with it?  Peel it and hand it to him?  Slice it?  Mash it and spoon feed it?  Dice it and fork feed it?  Ultimately, I sliced and diced a few pieces and offered them with a fork, and I also mashed some and offered that with a spoon.  I figured that in future mealtimes, we could try frozen mashed banana, whole banana, baked banana, grilled banana, and the millionty other things the internet can think of.

Yummy!

He did really, really well.  By which I mean that he didn't scream in my face or throw it at me.  He dipped the spoon in the mashed banana and licked it several times, and he even licked mashed banana off his fingers.  He had five good minutes of messy slimy hands before he started stressing out about wanting them cleaned - which is huge for him.  He picked up one of the chunks and put it in his mouth, but then he spit it back out, and proceeded to pick up each chunk and deposit it into the bowl of mashed bananas.  Oh well.  I'm still saying success.  (I had no idea what the next 12 hours would bring.)

No hives.  Normal cheeks.  I did notice a small rash on the back of his neck and his upper back, but it's been a million degrees here in Philly this October, so I'm thinking heat rash.  Something to keep an eye on, but I'm not too concerned.  I don't remember seeing it before, but to be honest, I don't regularly inspect him.

The rest of the morning was uneventful.  We went to Gymboree for class, then Aidan was my lunch date at ABC, then back to Gymboree to try out a new Art Class (he dipped his ENTIRE HAND in paint! So proud!).  He went down for a nap pretty happily around 1:00 and Tom and I went about our normal Saturday routines - cleaning the house, relaxing, being adult humans without a screaming miniature human - you know, the usual.

At 2:00, Tom ran upstairs into Aidan's room.  I'm ashamed to say that my first thought was that I was annoyed.  Sometimes, when Aidan's refusing to nap, things are only prolonged by going in there.  Daddy's heart is more easily broken than Mommy's, and I thought that was what was happening here.  But when Tom called out to me, I heard in his voice that it wasn't just a refused nap.  Something was wrong.

When I got upstairs, Aidan was writhing around in bed, alternately bringing his knees up to his chest and then quickly straightening out his body - all the while screaming at top volume.  He was crying hysterically, gagging and generally looking pretty miserable.  Tom held him and rocked him for a bit, and then I offered to take over.  I gave him some tylenol, silently hating myself for daring to think we could trial a food and not ruin his life, and he seemed to calm and quiet down.

Suddenly, around 2:30, he started screaming again, sat up, and vomited everywhere.  Bad news.  If you aren't part of the GJ-Tube fan club, you might not know this, but someone who only feeds through their J Port shouldn't be able to vomit entire feeds.  It's bad news - it means the tube has migrated up out of the jejunum and into the stomach.  Since Aidan's stomach doesn't work properly, formula in his stomach causes him to vomit profusely.

We spent the next hour and a half on the phone with CHOP arguing over what to do - bring him in immediately vs. wait and see how he does - try a bolus feed into his G, try a bolus feed into his J (don't even get me started), feed him by mouth (again - don't even get me started).  Ultimately, we were (correctly) advised that since he cannot tolerate feeds into his stomach and the J tube was not in place, we needed to bring him in right away.

We arrived at CHOP around 5:30, hit up the convenience store for Diet Coke and Soft Pretzels, and were settled into our ER room by 6:00.  At 6:30, the nurse came in to check his sugars, since he's not used to being off feeds for long.  His blood sugar was fine (86.  They consider less than 75 to be low.) and he got a smiley face on his bandage.  He was not amused.

A for Effort though, guys.

At 7:30, the doctor ordered an abdominal X-Ray and placed an IV.  As usual, one vein was blown before the IV was started - so mental note - let's be careful with this one, ok?

Chillin' like a sick boy.

At 8:45, we were taken back for his X-Ray, and when we returned at 9:30, GI had somehow gotten wind of our arrival and was arguing about the plan of action with IR.  IR wanted to admit him overnight and replace his tube under anesthesia in the morning (the same procedure scheduled for Thursday - just moving up the timetable since the J had migrated out of place).  GI felt that we should admit him for feed intolerance/tube clog and attempt to unclog the tube, release him, and bring him back in on Thursday for the GJ Change Surgery.  Absurd.

Meanwhile, I'm attempting to keep a miserable toddler busy for hours.  No problemo, right?  Yeah.

As the arguing continued around 10, we were admitted.  X Ray results came back around 10:45 and we were told that the J was in place (so how did he vomit?).  The doctor wanted to move forward with Clog Zapper - however we felt that this was inappropriate since it is made with a pork product, which flagged as an allergen (glad we actually take the time to make all these updates!).

At 12:30, an Anesthesiologist ambled in, either high or exhausted (let's hope for the latter) and attempted to explain about how Aidan would be sedated for his procedure.  I think at that point, I would have signed him into child slavery - I was barely coherent myself.  I signed whatever those papers were just before Transport arrived at 12:45.  Aidan had finally fallen asleep, lucky ducky.

Finally, Refuge.  Old Reliable 5 South.

We had an awesome middle o' the night Nurse, Alice.  I hope we have her again.  Aidan weighs a not-so-hefty 25.6 lb (11.65kg).

It was 3am before we finally got to sleep.  Don't get too excited though - they have a "let's wake you up ever hour to check your IV make your kid scream" policy.  Which wouldn't be so bad if they didn't always super-innocently say "Oh, did I wake you?"

Ah well - crazy day.  Bananas Day 1.  CHOP Day 1.  Nobody knows if they're related or coincidental.  More to come once we get some sleep.

Day 1, Part 1 - Emergency Department & Admission

Day 1 kicked off in the wee hours, as we were brought to our ER room just after midnight Wednesday night/Thursday morning.  After about two hours of vitals-taking and nothing-doing, we had a plan.  Get an X-Ray (to check on tube placement) and get a Dye Study (another check for tube placement).  Meanwhile, Nurse Tim confirmed that CHOP can't come up with any dye-free tylenol or motrin (This is why I bring my own) and took our stash with him to be verified by the pharmacy.

note the totally unofficial drugs in the background

So off we went to Radiology around 2am, and boy did he love that.  Except I'm totally kidding, because he hated it.  Back in Room 11, Nurse Tim showed up to take some samples to test for blood in stomach contents and stool.  Negative for both, whew.  The X-Rays came back and indicated proper placement of the tube, so we went back for a dye study around 3:30am - I guess it's a more reliable way to check placement?  That one looked good too - no issues to report, except maybe that he had some constipation.

Gee, I hope nobody sticks anything awful up my diaper area...

Never fear, Nurse Tim is here.  With two enemas.  At 4am.  Holy mother of god.  I'll spare you the gory details - suffice it to say that a change of BED was required. 

Not sleeping at 4am

Around then, I emailed my boss to let her know that I was still in the ER and wouldn't make it into work.  Panic is starting to set in, because this situation is chillingly familiar.  I need to still be employed at the end of this hospital stay.

The boy nods off briefly at 5am.  And yes, those are "Taddy Shoes!"

Sleeping like a baby.  A baby who is likely to poop the bed.

Not having slept in days - like, literally days - I finally nodded off in the pooped bed, only to wake up at 5:30 because some doctor is holding a phone in my face, saying the GI on call wants to talk to me.  I wish I'd written down her name - the conversation wasn't good.  The gist was that she didn't think we needed to be in the hospital, and the best thing would be for us to go home and see our own (CHOP) GI on Friday.  She asked me, point blank, "Really, what's your concern here?"  AYFKM?  My concern is that my child is both dehydrating and starving to death.  My concern is that I can't provide care for him anymore.  My concern is that NO ONE IS HELPING ME.  I said that while I wasn't opposed to going home, because home is awesome, I WAS opposed to leaving with a child that I cannot feed.  Especially when our own GI's office told us that in all likelihood, they would be unable to help us much in the office, and that we belonged at the hospital.  Out at Exton, our own doctor can order tests.  Here at Main, these doctors can actually perform them.  I put my foot down.  We aren't leaving without answers.  You have to help us.

So we agreed to try some feeds.  Around 7am, we had a 2oz Pedialyte feed.  It went okay - and at this point I was a little bit worried that they were going to think I was a crazy hypochondriac.  At 8am, right at the tail end of the Pedialyte feed, we started a 7oz Elecare feed.  Half an hour or so into that feed, the doctor came in to check on us.  Aidan was sleeping restlessly, but not crying and certainly not vomiting.  So far so good, I reported.

Doctor Disbelieving wasn't three steps out the door when Aidan bolted upright in bed, coughed, and spewed forth EVERYTHING.  Thankfully, my bucket-grabbing reflexes are getting pretty good these days.  Nikki went for the nurse, and it took half a glance at Aidan filling his puke bucket for her to confirm that he'd be admitted.  Doctor Disbelieving couldn't argue at this point.

The nurse placed an IV, drew blood for labs, and started fluids.  As this was happening, I started to notice that, as usual, Aidan's body was reacting to the feed and the vomiting.  He gets bright red cheeks, a cough, a runny nose, and his body gets hot.  VERY hot.  A temp check clocked him in at 102.5, and a dose of motrin (and an hour later, a dose of tylenol) did little to bring it down.  Poor bugaboo.

Elecare out, IV in, waiting for a room

We hung out in the ER until about 10am, waiting for a room and a crib - and finally - TRANSFER TIME.

Day 0 - To the CHOP ER

It's been several weeks since feeding has gone "well."  I almost can't remember a time when it wasn't at the forefront of our minds - except that I know that it used to work, and it worked well.  The Feeding Tube is the best thing we've ever done and whatever has gone wrong will be fixed.  We will have our lives back eventually.  I digress.

Although it's been many weeks (months) since things have gone well, it's really been in the past week or so that things have gone sharply downhill.  The Elecare that he was tentatively tolerating is no longer tolerated.  He vomits every feed, no matter what we feed, even if it's just Pedialyte.  This isn't sustainable at home anymore, and it's clearly time for us to get more help.

I had such a busy day at work that although I knew he needed to go to the ER, I wasn't able to take him until evening.  So it wasn't until 9:40 that the crazy vomiting started and we headed down to CHOP's ER.  We got here around 10:50 and Aidan weighed in at 11.1kg (with shoes and clothes).  It took until midnight for us to get into a room (ED room 11) with Nurse Tim.  We think we like Nurse Tim.

So Day 0 was short.  Day 1 was a lot more insane.  Possibly the longest day of my life.  More to come...