Wednesday, February 26, 2014

Plague Household - Love for the Tube

Chances are good that if you're a parent, you've found yourself covered in some pretty horrifying bodily fluids.  It's just part of the gig.

A few weeks ago, a plague descended upon The House of Shields.  We later learned that it was Influenza A - I'm italicizing it for ominousness.  It took all three of us down, but Aidan was the first to fall. 

It was one of those nights.  Aidan woke up from his nap crying and feverish, alternating between begging me to hold him and begging me to leave him in his crib.  When I finally convinced him to sit with me in his rocking chair, he held my shoulders, leaned in, and threw up in my lap (motherhood is glamorous!).

I could hear his poor little tummy making some truly unholy sounds, and as I pondered the location of the nearest poncho, I realized that our beloved tube could come to my rescue.

With some quick footwork on Daddy's part, we had our drainage setup ready before the next Vesuvian Eruption.  Crisis Averted!


If you don't have a Tubie, this probably doesn't mean much to you - but we take our wins where we can find them.  It's *awesome* when you can help prevent your miserably sick kiddo from feeling miserably sick, even a little bit.  Rock on, Medical Technology!


Saturday, February 22, 2014

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.

Friday, February 21, 2014

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.