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.

Update: Nutritionist & Next Steps

We had a great visit with CHOP Nutrition this week.  Nutrition visits are always great - I often feel like our Nutritionist is the only at CHOP who actually listens to us, so those visits usually consist of my brain dumping all of my problems on Mimi while Aidan screams his heart out, because he hates that place.

As usual, I digress.

This week's visit was actually really great.  Last month, we all agreed to increase his feeds and see if that made him put on any weight.  This week, we found out that he gained almost an entire pound!  This is huge news!  He's up to 25lb 5oz (4.3%) and 33 1/4" tall (1.4%).  So he's still not huge - but he's growing.  We'll take it!

Mimi also worked her magic to get CHOP homecare to start delivering our formula - which NO ONE has done for us over the past two months that we've been asking for it.  So I'm pretty sure she's basically a magician.

Next steps:

Go see GI to discuss their thoughts on next steps.  When do we scope again?  Do we keep the lemonade even though he requires daily Miralax in order to be able to drink it?

Go see the new Allergist to discuss what might be a safe food to trial. This one scares the daylights out of me, and I have no idea what we're going to try. 

In prep for seeing the new allergist, I got all of Aidan's allergy records from both allergists we've seen (Allergy & Asthma and CHOP's EE Clinic).  Nothing special in the A&A file - they diagnosed him with soy enterocolitis when he was about 8 months old, and told us to reintroduce apples and bananas.  All of their skin testing was negative.  When he was 15m old, we did environmental testing, and he tested positive to grass, trees, weeds, and dust mites.  He'd also recently recovered from RSV, and had uncontrolled asthma symptoms.  He was started on daily pulmicort and zyrtec.

The CHOP file was a little more interesting.  He was there at 12m.  He was diagnosed at that time with IgE allergies to soy, peanut, and peas.  They also noted that he could potentially have FPIES (specifically in reference to milk and rice.  I don't know why those were singled out.)  This is interesting, since no one had ever uttered the word "FPIES" to us.  And I guess it doesn't really matter since he doesn't eat anything - so we don't have to worry about an FPIES reaction.  But it might have been nice to know we should be looking out for them?  Anyway, at 19m he was Patch Tested, and positive to eggs, milk, wheat, corn, barley, potato, beef, green beans, and peaches.  He was "equivocal" to rice, apples, and oats - however he has failed rice and apples based on symptoms in the past.  Chicken, pork, and turkey were negative.  Carrots were considered negative although I clearly saw a hive, so we agreed to disagree on that one.  They recommended starting food trials.  And that was our last visit.

So long story short, I have no idea what we'll trial but it's probably a good idea to get the ball rolling with this new allergist.

It feels good to have a plan.  Or a plan to make a plan.  Or at least someone who listens and cares about my kid.