Checking In...

Sometimes, so much time passes since I last wrote, I feel like I should have something monumental to say.  But I don't, so I don't say anything at all, and then you don't hear anything from us until something awful happens.

Nothing awful has happened.

We're still here, taking things one day at a time and trying to keep it all in perspective when I think it's all too much.

We finally completed a sleep study in January (dreadful) and determined that, although he wakes up at least ten thousand times every night, it's not a respiratory problem.  Obviously great news from a pulmonary perspective, though not the most helpful thing to hear from a "let's get this kid snoozin'" point of view.  But we've started using Melatonin with some success, so we're at least moving in the right direction.

Hi, I'm checking in for my Awake Study?

Sleep is for losers...

Aidan spent some time inpatient in February with a GI virus that he picked up (probably at school) and I went to a very dark place.  Parents of healthy children aren't living this life, and I hope they never have to.  (Just like *we* aren't living the lives of NICU and PICU families, or Cancer families, and hope beyond hope we never know their "normal.")  But the GI virus that sends a classmate home early one afternoon for some extra rest and fluids sends Aidan to CHOP by ambulance (inpatient for 4 days, home for 4, inpatient again for 5), leaves him on anti-emetic medication for weeks to combat constant vomiting because the virus disrupted his motility, and steals away all of the weight he'd gained since October.  And I'm so angry because it's so unfair.  But that's another topic for another day.

I'm sick, but ambulances are awesome!

A boy and his bucket

His wife will thank me for this later...

FINALLY time to go home!

We checked in again with Endocrinology when the madness that was our inpatient stay(s) wrapped up, and were pretty soundly brushed off.  Aidan has good weight gain and poor linear growth, but our endocrinologist is generally unconcerned and feels there's really nothing to be done.  At this point, her only concern for him is his Ketotic Hypoglycemia, so she's referring him over to her colleagues on the Hypoglycemia team.

March brought new focus to Aidan's Developmental concerns.  I think sometimes, it takes a really forceful nudge - just the right person saying just the right thing - to get ready to change your approach.  In our case, it was Aidan's Psychologist and his Behaviorist.  Tom and I both really respect them, and when we met for our tri-annual review, we all talked through some new things that we hadn't really discussed before.  I think this is going to lead to some different approaches to Aidan's behavioral interventions.  Stay tuned on that.

The next few months should be interesting, as always - in April, we will be seeing orthopedics to check in on Aidan's legs and feet, Developmental Pediatrics to review our new plans and services for Aidan, and he'll be heading inpatient on the 20th for his GJ change on the 21st.  In May, we head to Metabolism for the first time, and we meet with an Endocrinologist from the Hypoglycemia team.  In June, back to Developmental Peds.  And somewhere in here will be a first visit to CHOP's Genetics department, since we've only ever seen genetics once at another hospital, and everyone agrees this is something that needs to be revisited.  His case is currently under review, and we should hear back within the next few days regarding which doctor will see him and when.

In the meantime, we're doing all of the usual stuff.  Aidan's going to a new school and is doing well there, especially now that we've added full time private duty nursing (Bayada has been a huge positive addition to Aidan's team).  He's still getting lots of therapy and making amazing strides with his speech and motor delays.  He started Karate in January, and holy smack, does he ever look adorable!

More to come, soon I hope, but for now, know that we do appreciate every single time you reach out to check in.  We're still alive, and sometimes I need a little (big) nudge to dig out from under 10,000 pounds of life to return your call (text/email/attempt at actual verbal communication).

Tube Change - January 2015

January found us inpatient for a tube change (I can't believe it's already been three months!).  It's been a tough month for Aidan for a number of reasons, so I wasn't sure how this hospital visit would go, but they're certainly not optional, so off we went.

This was an important visit for Aidan.  For starters, it was his first hospital stay where he used a hospital bed instead of a crib.  Maybe it was a bigger moment for me than for him, but seeing him in that bed was such a morale-booster.  This time last year, we weren't sure he'd ever understand that he couldn't just wander out of a bed while attached to his IV pole.  The safety awareness just wasn't there.  He's made so much progress, and something like this is a real, tangible sign of that progress.  Oh, and also, glorious, glorious legroom!

Anyway, when we settled in on Tuesday night, Aidan kicked things off by having random rashes pop up that scared the crap out of me.  He was fine when we arrived, and of course (just to freak me out), they only started appearing when I started eating my (non-fish) sushi.  He didn't eat it, he didn't touch it, I didn't touch him.  But the same thing happens to him pretty frequently out in public - mall food courts, restaurants - it's hard to believe it's not food-related, you know? 

Little rash on his back - okay, no biggie...

And this thing on his chest - okay, I can see how this might show up...

Little tummy itchies, no big thing...

GAH! What happened to his face!

Oddly, we were up on 4 East, which is surgical/trauma, instead of 5 South (GI).  His paperwork was processed as a G-Tube initial placement instead of a GJ change, which was... interesting to sort out.  4 East is not my favorite place to stay - the rooms are shared, which is always kind of awkward when you have a screamer.  I hate feeling horrifyingly guilty about my kid freaking out while some other poor kid is trying to rest and recover from his hideously painful testicular torsion.

Anyway, we had the usual drama around IV placement - four fails before we finally got one in.  Aidan's gotten fantastic at sounding unspeakably sad and accusatory.  "Why did you just hurt me, doctor?"  "Please stop with the ouchies!"  After much ado, we got the IV in and fluids started.  I gave Aidan his reward - a new Chugger - even though he admitted that he "wasn't brave because he just cried and whined and said ouchie".  Still brave, kiddo.  Still brave.

Sad boy, warm flippers

Drama's over, new train on board

First thing Wednesday morning, Aidan and I went down to IR, and the real fun got started.  He coughed - I'm not even joking here - ONE TIME in the elevator, so the whole sedation plan went out the window.  No ketamine for Aidan, he was forced to remain kinda-sorta-awake/kinda-sorta-sedated.  Horrible.  He was awake and screaming (despite the versed) when I left him in the IR room, and awake and screaming when I got him back.  I'll go on ahead and assume he screamed the whole time.  Thanks for traumatizing him when that's precisely what we were trying to avoid by admitting him, fasting inpatient, and sedating him.

Before things got crazy up in IR...

 Anyway, when all was said and done, we were the proud new owners of the AMT G-JET.

He "woke up" from his "sedation" pretty hard - he screamed at everyone and everything for a few hours before finally passing out.   Poor kid.

Side note - I know they need to put leads on him, but isn't there anything that he's not allergic to?  For flip's sake, this poor kid's skin...

 Anyway, we spent the rest of Wednesday ramping up feeds, titrating down IV fluids, and checking blood sugars.  The only issue we ran into was a random low blood sugar when the nurse was a few minutes late with his formula refill.  Not even joking, we're talking 5 minutes off formula, and he ran low.  Poor kid just can't keep his sugars up on his own - which we know, but it's always kind of a crazy thing to see how fast he drops.

The team in the PACU gave Aidan a "Brave Kid" Cape and he wore it all over CHOP as he explored and recovered.  What an amazing, empowering thing - everyone he saw stopped him to gush over how excited they were to meet the bravest kid in the hospital.

 All in all, it was a good stay, and Aidan actually tolerated his feeds better than ever before.  Maybe next time, we'll be home same-day!  Which means that this little nugget will get to spend a bit more time in his own big boy bed.  Fingers crossed!

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.

CHOP Inpatient - Musings on Feeds

After Aidan's scary-yet-fun (?) ambulance ride to CHOP on Tuesday night, we settled into our room on 5 South and awaited a plan.  I swear, that's all we ever do here.  Wait for someone to figure out how to help him.  And in the end, it's always a patch up/send home job.

Aidan had no problem immediately falling asleep.  I, on the other hand, stayed up to panic about work and ponder what the appropriate hour was to text my boss.  Finally, I had to reach out and admit that I was here, with no access to my work laptop or phone, and would be missing several important meetings.

I hate this part.  Obviously my child is the most important thing in the world to me - but I pride myself on the work that I do, and not giving 100% does not sit well either.

Listless boy :(

Anyway - what Aidan really needed were IV fluids for hydration and gut rest.  Late in the day, we started up Pedialyte, and he finally produced wet diapers.  He really seemed to perk up quite a bit.

Toddler Problems: he's a righty.  no coloring :(

When we started up the 1/2 Pedialyte/1/2 Elecare mixture, he starting showing signs of a flushed face - but no fever.  Odd, and I actually asked several times that his temperature be rechecked because he felt warm to the touch - but no fever was recorded overnight. 

He was clingy and moaned a lot in his sleep.  But no fever, and no vomiting, so we advanced the feed to full Elecare.

We did get some sleep overnight, despite his discomfort, and when I woke up, I did my usual check of the room.  I always double check his feeds and rates and vitals - just to see how he's doing.  What I noticed made me instantly sick to my stomach.

Elecare Jr. Vanilla.  VANILLA.

Yup.  The doctor ordered the wrong formula.  The nurse hung the wrong formula.  They fed my baby the wrong formula.  Formula he's reacted to in the past.  This is not okay.

I feel guilty for being asleep at 6am when this was hung.  But I can't feel guilty for sleeping.  I can't feel guilty for their error, and their lack of quality review.

Aidan is okay.  He was uncomfortable and flushed in the face - but he is okay.  What if the mistake had been a dairy-based formula?  Or a soy-based formula?  What if he'd suffered anaphylaxis due to this mistake?  It's not okay, and CHOP needs to get it together.

The rest of the day was frustrating and disappointing.  The usual CHOP fare.  He's not pooping (surprise, surprise) so we're giving Miralax (no results).  He's feeling much better now that he's hydrated and is really ready to come home.

The main thing slowing things down is that I spoke to a GI, explained alllllll of our sordid formula history (the neocate drama - the G feed intolerance - the GJ tube change - the ensuing frequent hospitalizations).

It is my genuine belief at this point that he DOES NOT tolerate Elecare Jr.  When we give it by mouth or G-Tube, he gets rashes, vomiting, and GI pain (Screaming.  So much screaming.  Especially at night).  When we give it by J-Tube, because we have bypassed the stomach, the symptoms are different - but we get decreased motility (leading to constipation so severe, he ends up hospitalized for cleanout) and pain/discomfort.  He's not getting the rashes and vomiting - something about the chemistry of the jejunum vs. the chemistry of the stomach seems to produce a different set of symptoms.  But it seems clear to me.  Before we started Elecare Jr, do you know how many times he had these lower gut issues?  ZERO.  It's related.  It has to be related.  And I think it's the same, whether it's flavored or unflavored.  We never had these issues on the well-tolerated unflavored Neocate Jr or Neocate infant (but, interestingly, we did have the same set of symptoms on flavored Neocate Jr and Splash).

The GI I spoke to this morning seemed on board.  He said that clearly there was an allergic process in play, and that we needed to investigate the micronutrients in the formula to see what he was reacting to.  He even said he knew of a GI in the hospital today that he thought could help.  But he never came back.

Instead, he sent someone else - a resident, I think - to tell me that he was in the OR for the rest of the day, but thinks we should follow back up with our own GI in a month or so, and consider seeing an allergist.  Sound familiar?  It should.  It's what we're always told.  It's nobody's problem.  It's nobody's responsibility.  GI thinks Allergy should help.  Allergy refers us back to GI.  Everyone feels that things are going "generally well" for Aidan.  Everyone but Aidan, who's living in pain every day.  Aidan, who's dying to eat, but starving to live.

Someone has to help us.  Someone has to care.  I was hoping we would find someone today.  We didn't.

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.