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.

Just Sugar Lollipops

Recipe Information:
Number of Servings: 18
Recipe Borrowed from: Kids with Food Allergies

Tools Needed:
Candy Thermometer
Lollipop Molds (I use silicone to avoid the need for cooking spray)
Lollipop sticks (My grocery store sells them, but you can also find them at any craft store with a candy aisle)
Gravy boat (optional, but very helpful)
Non-Stick Aluminum Foil

Ingredients
1 Cup granulated (white) sugar
2/3 Cup Golden Syrup
1/4 Cup + 2 tbsp water

Instructions:
- Add all ingredients to saucepan, with candy thermometer attached.  Bring to a boil over high heat and do not stir. 
- As mixture heats, prepare molds by adding lollipop sticks.
- When mixture reaches 300°F (Hard Crack), quickly remove from heat.  If available, pour carefully into gravy boat.
- Quickly pour mixture into molds.
- Allow to cool (20-30 minutes).
- Remove Lollipops from molds and wrap in nonstick aluminum foil.

Notes:
- I would love to link you over to a fabulous candy thermometer, but truthfully, I'm still searching.  If you find a wonderful one, please leave me a comment and let me know.
- Lollipop molds were almost the death of me.  I tried hand-poured lollipops, but they were very thin and flat, and once my son's tongue touches the stick, he's no longer interested in the lollipop.  In my head, I envisioned churning out bags and bags of homemade dum dum pops.  Reality was not quite so fancy.  I tried some plastic molds from Sur La Table (like these) but I was losing half of my output to breakage because I can't use any nonstick spray.  Freezing the lollipops before attempting to remove them from the molds helped only slightly.  Ultimately, many hours of searching eBay and entrusting a few dollars to a Chinese seller got me some smiley face silicone lollipop molds. 
- I find Golden Syrup at my grocery store, but you can get it on Amazon
- I like to use a gravy boat because it's much easier to pour into molds from that than a 300° - but it's totally a matter of preference.  Just note that even though you remove the pan from the heat, it will continue to rise in temperature (especially if you leave it in the saucepan), so pour into molds quickly!
- This is a half-recipe.  To make the full recipe, you will need the following:
          1 Cup granulated (white) sugar
          2/3 Cup Golden Syrup
          1/4 Cup + 2 tbsp water



Aidan loves these lollipops.  They are safe for him, because they are literally just sugar and water. While his dentist may not love the idea as much as we do, I really enjoy that I can give him something that makes him feel like a regular kid.

PurAmino - Why aren't you easier to use?

Puramino.  Oh, Puramino.

There's a special place in my heart for this product.  I'd like very much for it to work out.  When we tried it a year ago, we only had two cans, and so could only trial for three days.  But unlike the other formulas we've tried, so far, nothing terrifying has happened while on PurAmino.  And this time, we were able to get much more in the way of samples, thanks to the tireless efforts of our R.D.  I'm excited, of course, but nervous - I really don't have the time for a hospital visit right now.

Actually, what I am mostly is annoyed.  PurAmino is a 20 calorie infant formula, with deceptively simple mixing instructions:

To Make	Water	Powder	Weight
1 fl oz	1 fl oz	1 unpacked level scoop	4.5 g
2 fl oz	2 fl oz	2 unpacked level scoops	9 g
4 fl oz	4 fl oz	4 unpacked level scoops	18 g
8 fl oz	8 fl oz	8 unpacked level scoops	36 g

I'm guessing you see the pattern.  An ounce plus a scoop equals an ounce of finished product.  Easy peasy, right?  Right.  But let's say your kiddo needs a few more calories than your average bear.  You could just increase the volume that you feed - though in Aidan's case, we'd need to feed him 28.5 hours per day (you heard me) to get enough calories in with a 20 calorie formula.  Not humanly possible, next option please!

You'd probably check the can for 30 calorie mixing instructions.  After all, Neocate and Elecare has them.  No such luck.  You might also head to the product page on manufacturer's website, hoping for more detailed 30 calorie mixing instructions.  After all, 30 calorie dilution is standard for toddlers.

It took me a couple of hours of googling obscure combinations of phrases (and stumbling back across my own blog entry detailing my identical dilution quandary one year ago!) before I found this - a slightly helpful, more than slightly infuriating, piece of documentation.  WHO WROTE THIS THING?!

Here's my (hopefully not too terribly flawed) math:

We need 30 calories per ounce.  So we're only interested in the very bottom row.  We already know that 1 unpacked level scoop is 4.5g, and I use a gram scale, so that's how I prefer my measurements.

4.5g powder + .7oz water = .8oz formula
divided that all by .8 to determine that
5.625g of powder + .875oz water = 1 ounce of formula
at 30 calories per ounce, and knowing he needs 1350 calories, I multiply by 45 to get (roughly)
253g powder + 39.4oz water = 45oz formula


Redoing it in mL, since the manufacturer recommends this measurement for accuracy:

4.5g of powder + 19mL water = 23mL formula
divided by 23 to determine that
.196g powder + .826mL water = 1mL formula
at 1.01 calories per mL, and knowing that he needs 1350 calories, I multiply by 1337 to get (roughly)
262g powder + 1104mL water = 1337mL formula
262g powder + 37.3 oz water = 45oz formula


Um, say what?   Those are not the same.  After no small amount of crying and yelling at the can for not giving up more helpful information, I let the R.D. do her job.  I do not know exactly how she did this math.  I think she allowed for displacement.  And also, magic.  What I do know, is that I'm blogging this for future me to find.  In fact, I'll cross out my crappy flawed math.  Hey, future me.  Use this one!

266g powder + 38.5 oz water = 45oz formula


Once we decided to go ahead with PurAmino, we had an uphill battle with insurance.  It's an infant formula this, and we don't carry it that.  UGH!  I won't get into the dirty details because if I re-live it, I might actually have to hurt someone, but our wonderful, wonderful R.D. at CHOP worked her - ahhem - bottom off to get us enough samples to keep Aidan fed until our appeals were approved and our delivery finally arrived.  We repaid the Mead Johnson rep with these absolutely adorable pictures of one of their tiny consumers.

PurAmino - bottom line - I'll forgive your user-unfriendliness if you keep my baby out of the hospital.  Deal???

The 2014 Formula Trials - Neocate & PurAmino

After Aidan's last stint inpatient at CHOP, and my musings on feedings, I was left feeling like it wasn't Aidan who was failing formulas - it was us failing him.  We were feeding him a formula that was wreaking havoc on his little body.

Let's recap:

On Neocate Jr, Aidan did well, right up until January 2013, when we started using the "new label" Neocate Jr.  I recognize that the change of labels was not impactful for the vast majority of children, and that it's possible that Aidan's decline and the label change happening in the same timeframe may have been coincidental.  During February-March 2013, our lives were fairly miserable.  Aidan vomited almost everything he ingested.  Things came to a head in April 2013, when he was admitted to CHOP and a GJ tube was placed.  At the same time, we discontinued Neocate Jr and started Elecare Jr.  (In retrospect, I do not know why we did both of these things at once.  I truly don't.  But I was desperate to help him.)

Between April 2013 and October 2013, I scrounged up "old label" Neocate Jr from anywhere I could find it.  We didn't always have enough to have him exclusively on Neocate Jr, and sometimes had to mix Neocate Jr and Elecare Jr.  The last of the "safe" Neocate expired in October 2013, and we moved him to Elecare Jr. in October.

Exclusively on Elecare Jr fed via J tube, Aidan was frequently hospitalized for severe dysmotility, which led to severe constipation and dehydration.  These hospitalizations occurred in October 2013, November 2013, December 2013, and February 2013.

By February, I'd had enough.  I couldn't keep doing this.  I begged our nutritionist to help us.  She understood that Aidan's quality of life just had to improve.

Our first thought was to retry Neocate.  My hopes weren't super high, but I decided to go into it with an open mind.  There aren't many options, so I need to be open to trying everything.  We hadn't tried "new" Neocate in a year.  It was worth trying again.

Aidan disagreed.  What I like about Aidan is that when he fails something, he well and truly fails.  He "vomit on the floor in the nutritionist's office" fails.  I was cautiously willing to push through, but continued retching and vomiting of bile made it pretty clear that Neocate was going to be a no-go.

So back to PurAmino.  We tried PurAmino a year ago too.  The results last year were underwhelming, but we were far less desperate at the time.  All I really journaled last year was that it made him hyper and extra emotional.  We only tried it for about 3 1/2 days, because it was pretty difficult to get samples of. 

I'll post more thoughts on PurAmino soon - but after a much longer trial period, and an even longer fight with insurance, we've settled on Puramino as our formula of choice.  It does, actually, seem to make him hyper and emotional, but I think that's actually because he's in less pain.  He feels better (yay!) so he's more aware of what's going on in his world (yay!) and more easily overwhelmed and overstimulated (boo!).

He has not been hospitalized since we started with PurAmino.  We've had one very close call, about a six weeks into our trial.  The root of the problem seems to be his poor motility, and when it flares up (somewhere in the neighborhood of every 4-6 weeks), he stops pooping, is in excruciating pain, stops tolerating feeds, and gets dehydrated - all in the span of a day or so.  No real warning that this is coming - he's fine one moment and very not fine the next.  In the case of this close call, he definitely had a motility flare, but we were able to keep feeds going, so he stayed hydrated, which is the key difference between going to the hospital and staying home.

I think we're going to stick with PurAmino for now.  We're essentially out of options otherwise.  Wish us luck!