Tuesday, December 30, 2014

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!


Monday, December 22, 2014

Aidan… With Eos does Halloween



As December draws to a close, I realize that I haven’t really had a chance to reflect on Halloween.  So, how does a food-free, pumpkin-allergic boy with high anxiety and a hatred of costumes do Halloween?  Very Carefully.

It takes some planning, to be sure. 

Hurdle #1 – The costume.  The boy hates things that touch his head, face, or neck.  Also, he’s not thrilled with pants that don’t look like his regular everyday pants, shirts that do and/or don’t have sleeves, jackets, hats, or nudity.  He hates shoes that look different than his normal shoes, boots, sandals, socks with “things” in them, and being barefoot.  So I can tell you quite honestly that if getting dressed every day is a war, then a Halloween Costume is a Nuclear Bomb.

By this age (almost four), most kids have some idea of what they’d like to be.  The idea might change daily (hourly?), but there are ideas out there.  Ninja Turtle.  Queen Elsa.  Spider Man.  Sharknado.  We don’t really have that here.  Though I don’t know what every child with Autism is like, my child with Autism is too literal to really “get it” – he knows that he isn’t a Ninja Turtle, so how absurd to dress up like one.

Once we get through that, with assurances upon assurances that we’re just pretending, isn’t that silly!?, we still need to figure out who/what we’re pretending to be.  This year, it really just fell into our laps.  After a particularly positive visit with his GI, Aidan looked at me and said “Do you think I’m Doctor Liacouras?”  I can make that happen, kid!  Traditional white lab coat with a stethoscope wouldn’t really do – Dr. L is a Surgeon and Surgeons wear Scrubs – a quick query to my 200 closest friends got us a couple of pairs of embroidered scrubs, ready for Halloween happiness.  Since our little doctor-to-be has no fewer than five doctor kits of his own, accessories were already covered.  We lucked out here – scrubs are as close as humanly possible to pajamas, and it only took Aidan a couple of trial runs to get used to wearing them.  By Halloween, putting them on was a privilege! He now has scrub options, and can give you a scrub fashion show.






Hurdle #2 – The d├ęcor.  Okay, so pumpkins.  We don’t do pumpkins.  The boy is severely allergic, think anaphylaxis.  Since I take death pretty seriously, we don’t play around, and there were no pumpkins to be found in our household.  No worries though – we had plenty of faux pumpkin love, tubie-style.



Hurdle #3 – The treats.  This is the big bad.  And the problem is two-fold – both at school and out in the community.  I’ll tackle school first.

As Halloween approached, we got a note home from school inviting us to come visit for Aidan’s Halloween parade, and then stay to help celebrate by decorating cookies.  Really?  I had to say something – honestly, WHY do three-year-olds need cookies on Halloween?  Is a Halloween Craft really just too disappointing?  I responded with an email:

I got the note about next week's Halloween Parade and cookie decorating activity.  Obviously, Aidan can't participate in cookie decorating, but I would like to help find an alternative activity that he can do so that he won't feel excluded.  It's very important to us that Aidan be able to participate in these activities with his peers as often as possible.

In the future, please let me know if there's anything I can do to help make celebrations more inclusive by taking the focus away from food.  I would be happy to help provide crafts or activities for his classmates that would allow everyone to safely enjoy the celebration together.

I don’t know what I’d hoped to accomplish – I just needed them to know that whether they knew it or not, they were excluding Aidan by choosing something that literally every child but him could do, and it’s not the only way to celebrate.  To call their response disappointing is an understatement.

Thank you for your email. We do have crafts for the children as well. Please understand that when planning Halloween we tend to keep activities very simple as very few families choose to stay after the parade.  I do however understand your concern and would never exclude Aidan from the class.
Have a nice weekend.

It’s hurtful, I think, because I’ve told them that they’re excluding him and their only response is a halfhearted “Oh we would never…”  I did the best I could, because that the end of the day, we are his parents and it's our job to fight these battles.  I sent him foam shapes that might look like “cookies” along with glitter glue “frosting” and foam sticker “sprinkles.”  I wasn’t at the party, but my husband tells me that he had a good time.



I also sent in non-food treats for all of his peers, because that’s how we roll.  His classmates’ parents either know he has severe allergies, or think we’re really pointlessly passionate about not eating ever.  Either way, I think they went over well.




I’m sure this is just the first of many run-ins (Actually, not the first, just the most recent.) with school over inclusion.  It just breaks my heart to know that they don’t care.  “Easy” won out over “Right”, and there’s been a noticeable difference in the way his school has treated us since this email exchange. 

But back to the positive stuff – Treats Out and About.

Our Halloween tradition is to Trick or Treat with Aidan’s best friend, Teddy.  This year was no exception, so Dr. Aidan and Engineer Teddy went out on the town and collected truly insane amounts of candy from every “Halloween House” in Teddy’s neighborhood.  Having prepared extensively (thank you, social stories, TV shows, and visual schedules!), Aidan was SUPER successful this year, and even said “Trick or Treat” at almost every house!  Well, halfway through, he forgot the phrase “Trick or Treat” and subbed in “Halloween!” – But, you know, samesies!  



I prepared ahead by making Aidan-safe just-sugar lollipops (Recipe here), and snuck one in his bag of loot.  At the end of the night, he enjoyed a lollipop while I went through his stash and picked out what he could keep.  We actually saw a few Teal Pumpkin houses, where non-food treats were given out – how awesome!  Aidan wound up with quite a few things between his school friends and Teal Pumpkin houses, and of course, Teddy’s wonderful Nana.  



The next day, we took Aidan’s candy bucket to the toy store, where I set us all up for success by placing one toy that I knew he’d love in eyesight, and offered him the opportunity to buy it with his candy bucket.  He was so happy and very proudly handed that candy over.  He never once asked for the candy again.  Spur of the moment decision, but I think it will be a new tradition, because it went over really well!




So that was our Halloween in a nutshell.  So much success.  I hope to be able to work more closely with his school in the future to make their celebrations less exclusionary, at Halloween and all year long.


Monday, September 29, 2014

Tubie Whoobies!

Recently, we found out that a popular tube pad store, Tubie Whoobies, decided to start giving out a free sample pad so that new customers could try the product out.  I figured we had nothing to lose - I've always wanted to try them, but they're quite a bit more expensive than the pads I've been buying Aidan, so I just couldn't justify it.  How much better could they really be right?

My sample showed up pretty quickly, and Aidan was overjoyed to find out that it was a heart!  That's the first big selling point - they're actually shaped - not just round and themed based on the fabric.


He begged to wear it RIGHTNOWPLEASEMOMMY!?!?!?  Sure thing, sweet pea!



He loves it!  He showed everyone at school the next day, and despite some initial confusion regarding the location of "MY HEART!!!", I think it was a hit.

For my part, I'm happy too :)  It's been washed a couple of times now and still looks good.  No irritation or allergic reaction on his skin or around his stoma.  And the snaps seem to be good quality - not always the case with some of the more inexpensive tube pads.  I can tell that quite a bit of work goes into these.  They're really well-finished and I think they'll hold up nicely as we wash and wear them to death over the next few years.



I do still like having some of the other tube pads in our stash, because I like having velcro closure on the days that my osteoarthritis is flaring up (Tubie Whoobies only come in snap) - but Tubie Whoobies is the only company I've found that offers these shaped pads - and there are great options for older kids too.  A lot of the round pads look so babyish.  Tubie Whoobies has a lot of sports and truck option for older boys, and princesses for the girls.  (There are actually hundreds of options on their page, including sets that offer cost savings over buying the pads individually.  As for how many you need - it probably varies by person and how often you like to do laundry.  We go through one pad every day, but we know people who need to change them more often due to more drainage from the stoma.)  We just placed our order and chose these awesome "big boy" tube pads:






Wednesday, September 24, 2014

Subscription Box Review - Nibblr

As you know, I recently tried (and raved about) Graze.com.  While on the hunt for boxed mystery snacks, I also came across Nibblr.

Nibblr is a similar concept, so I gave it a try.  I got my first box for free, and so can you - just go to http://www.nibblrbox.com/ and enter the code FBFIRSTBOX (full disclosure - I just googled to find a free code, and this one worked for me).

In fairness, I had already been through the process with Graze, so I wasn't exactly looking at this with fresh eyes.  When I look at Nibblr, I can't help but compare to Graze.

Nibblr's website is not as easy to navigate.  I found it more difficult to categorically remove snacks (things too high in calories, things that contain nuts, etc).  I also found that I wasn't enticed by many of the snacks offered, so I trashed a lot of them.  I was downright annoyed by how difficult it was to determine what was in each snack - the information is all there, but it takes multiple clicks to find it.  And a nitpick - there are a lot of peanuts, which I don't eat.  There's no referral bonus system, so while Nibblr offers a free box to new signups, there's no incentive for me to refer you.  Try one, or don't, it doesn't matter to me.

On the positive side, Nibblr is definitely more "artsy" - the box is very cute and it came with a cute little mini-poster.

Yes it is!
I do like that the site shows how others are rating each snack.  Though it does make me wonder if I'll hate something that shows up in my box if only 29% of other users liked it.

My box came with the following snacks.  I don't know if it was coincidence, but all four of my snacks were only 2 PP+ each


Cheddy at the Ready - 2 PointsPlus - cheddar cheese crisps.  40% of others loved it.  I don't know who these people are, because I really disliked them.  They had a really bitter aftertaste - almost like burnt cheddar - and were way too hard and crunchy to be pleasant.  I had high hopes, but I ate half of one and threw the rest in the trash.  Still craving cheese, I tried the next snack.
Cheesy Crostini - 2 PointsPlus - Cheddar asiago crisps.  48% of others loved it.  These were ok.  The asiago flavor definitely comes through.  There's a bit of a spicy kick to them.  Texturally, they're good - not jawbreakers like the Cheddy at the Ready.  I ate them because they were available and I wanted something cheesy, but I would likely not seek these out again on purpose.
Neopolitan - 2 PointsPlus - dried strawberries, shortbread cookies, and cocoa ladyfingers.  56% of others loved it.  Eh, I didn't hate it.  Similar to the Cheesy Crostini, I ate it because it was open, but I wouldn't seek it out.  The shortbread cookies were pretty flavorless.  The cocoa ladyfingers - also fairly flavorless.  Most of the flavor comes by way of aftertaste.  It wouldn't be such a problem if it weren't for the strawberries.  They're freeze-dried, but they taste stale and mushy.  Blegh.  Freeze-dried fruit should be crunchy, Nibblr!  Fail!
Punchy Fruit - 2 PointsPlus - Pomegranite infused cranberries, pineapple, and passionfruit lemon fruit pieces.  29% of other users loved it.  This was my favorite, by far.  I actually wish I could get this from Graze.  Raw pineapple gives me Oral Allergy Syndrome - itchy mouth, rash, sometimes hives - but the dried pineapple didn't bother me and was actually pretty flavorful.  The pomegranite cranberries were delicious - a really sweetened-up version of a cranberry, which isn't normally something I enjoy.  The passionfruit lemon fruit pieces were interesting - texturally, kind of like a fruit snack, maybe a bit softer.  Very tasty.  All in all, just a nice fresh fruity snack.  


In conclusion, I will not be keeping this subscription beyond the initial free box.  I'm glad I didn't try this before I found Graze - it might have soured me on the subscription snack box idea entirely.

Wednesday, September 17, 2014

Subscription Box Review - Graze.com

Recently, I stumbled across Graze.com - a subscription box service that offers a healthy alternative to the usual snacktime staples (chips, cookies, and whatever other crap I can find).  The twist is that your snack boxes are a surprise - you can go onto the website to view the snack options, trash any snacks that don't appeal to you, and rate the remaining snacks on a try/like/love scale.  Then, each box is a random selection using their crazy algorithm that takes your ratings into account.

The first thing I did was trash anything with mango (I'm allergic), peanut (gross), and walnut (Aidan's allergic, and that one makes me nervous enough that I don't like to have it in the house.  (On an allergy note - everything's packed in the same kitchen, so keep that in mind.).  I set my box frequency to every 2 weeks (weekly is also an option).  Then, I chose to receive a Calorie Counter box, so that all of my snacks would be 150 calories or less.  I'm on Weight Watchers, so this has meant that all of my snacks have been 2, 3, or 4 PointsPlus. 

If you'd like to try it, the below link (or the code RXNYN96TU) will get you a FREE first box, and if you stick with the subscription, your fifth box will be free too!

https://www.graze.com/us/p/RXNYN96TU

So, this is all well and good, but how's the food???

My first box arrived in just a few days, and I was really excited to try it.  Knowing we were going to the hospital soon, I decided to save my snacks for our stay, and ordered another box immediately (very easy to do) so that I'd have plenty of healthy snacks to munch on while cooped up in CHOP. My second box arrived the day before we left for the hospital - well timed, Graze!

Box 1
Garden of England - 2 PointsPlus.  This is a mix of strawberries, apples, and blackcurrants.  They are dried fruits, but not freeze-dried.  Everything is sweet and fresh.  The apples and blackcurrants are nice and tart.  The strawberries are sweet.  It was what I expected it to be.  Nothing amazingly surprising, but a nice sweet 2 PP+ treat.  The apples are my favorite part.  I rated this as a Like - I'd be happy to receive this occasionally.
Peach Cobbler - 3 PointsPlus.  This is a mix of peach strings, honey almonds, yogurt-covered sunflower seeds, and amaretti drops.  The first thing I noticed was the smell - it smells like fruit snacks.  I think it's because of the peach strings, which are texturally somewhere between a fruit snack and a fruit leather.  They taste great.  The honey almonds are decadent and delicious, and I liked that they were chopped almonds - not whole.  The yogurt seeds are mouthwatering - literally.  And the amaretti drops - the most mysterious of the ingredients - turned out to be a sweet but not-too-sweet almond cookie.  Similar to the sponge pieces found in some of the other snacks.  I loved each individual ingredient, but the pieces were pretty small, so I wound up eating handfuls at a time - resulting in many Perfect Bites, which were pretty much snacking heaven.  This snack reminds me a lot of the Hot Cross Yum (see Box 2, below) - it felt like I was eating a super decadent treat, but somehow it was only 3 PointsPlus.  I rated this love and hope to see it often.
Toffee Apple - 2 PointsPlus - This is dried granny smith apples with toffee sauce for dipping.  The sauce is amazing - thin enough consistency to be a good dipper.  The apples are tart and tangy and go really well with the sauce.  I rated this one love because this sauce is to die for, and at only 2 PP, it's a steal of a snack.
Morning Energizer - 4 PointsPlus.  This is a mix of cherry, pear, and walnut.  I didn't intend to receive this, because it has walnuts and Aidan's deathly allergic.  I must have missed it when I went through and trashed everything walnutty.  But it's here, so I tried it.  I was pleasantly surprised at how fresh the fruit tastes, and I think the cherries are a really good companion to balance out the bitter walnut.  The Perfect Bite of all three is actually really delicious - enough so that I'm actually considering removing it from the trash bin and just bringing it into the office to eat away from Aidan.


Box 2
Banana Caramel Dippers - 4 PointsPlus - These are banana shortbread cookies with caramel toffee sauce for dipping.  I was more excited about this than any other Graze snack.  Cookies with caramel sauce?  Yes please!  On their own, the cookies are a true shortbread - not terribly sweet, flaky and crumbly, but you definitely do get a strong taste of banana.  And it tastes like real banana, not kinda-banana.  The caramel sauce is pretty tasty too - thin enough to make it a good dip for a crumbly cookie.  Together, the cookie and the sauce are a divine treat.  Thankfully, they're portion-controlled, because I could eat this all day.  Easily rated this one love.  I wish the sauce container weren't so narrow - it makes it harder to humiliate myself by licking the inside.  Note - I said harder.  Not impossible.  Side note - I kind of feel like I'm eating my feelings with this one.  I think my grandma would have loved this snack.
Hot Cross Yum - 4 PointsPlus - This is a mix of orange-infused raisins, sponge pieces, and cinnamon honey almonds.  Whatever sorcery they use to infuse fruit with the flavors of other fruit is insane (in a good way).  These are the orangiest raisins I've ever tasted!  I had no idea what to expect out of sponge pieces - which are used in a few Graze snacks - but essentially they are a slightly eggier-tasting Nilla Wafer, which doesn't sound all that appetizing, I know, but it works.  Cinnamon honey almonds are fabulously decadent candied nuts.  I truly don't know how this is only 4 PP+.  The Perfect Bite (one of each piece) is amazing, but actually, I really love each ingredient on its own, too.  I rated this love.  It felt like eating cookies and candy, but in a controlled and still satisfying portion.  I'd be happy to receive this often.
Raspberry Coconut Muffin - 4 PointsPlus - This is a mix of raspberry cranberries, coconut, amaretti drops, and almond slices.  The first thing I noticed was a delicious tropical smell, which has to be the coconut and almond.  Seriously, this is the most fragrant of the eight snacks I've tried.  I think I trashed almost every snack containing coconut, but I'm rethinking this decision, because these coconut flakes are really good!  Normally, I think coconut flakes taste suspiciously like hair - but these taste fresh and coconutty.  Awesome!  I fell in love with amaretti drops while enjoying Peach Cobbler, so those are a win.  The raspberry cranberries are a delightful treat - I continue to be amazed at the fruit infusion technology.  And the almond slivers add some protein in to make this a really filling snack.  I love how the sweet, tart raspberry cranberries balance out the nutty almonds and the coconut.  It's at the higher end of my snack rage, coming in at 4 PP+, but the portion seems generous.  I love it - please send more!
Super Berry Detox - 3 PointsPlus - This is a mix of blueberries, cranberries, goji berries, and green raisins.  As usual, everything tastes really fresh (I always worry with dried fruit that it will taste - you know - dry).  The portion size on this feels pretty generous, actually.  I like the green raisins, cranberries, and blueberries individually, but it turns out that goji berries (which I'd never tried before) are not terribly delicious on their own.  I wish there were more blueberries in the mix, and fewer goji berries. But I'm sure it's the goji berries doing all of the heavy lifting, nutritionally-speaking.  This mix is a full serving of fruit, and a "good source" of iron and Vitamin A.  Whatever that means.  I rated this "trash", because I know how many other, more delicious options Graze has to offer.  More Peach Cobbler!  Fewer goji berries!

What I found was that these feel so much less "empty" than eating 3-4 PointsPlus by way of a 100 calorie pack of cookies or crackers.  Sure, points are points, but I feel better about using mine on something with healthier ingredients.  Would I use these snacks to replace fresh fruits and vegetables or lowfat yogurt and cheese, all of which I currently snack on frequently?  Of course not.  But these are a great option for the times when those fresh and refrigerated options aren't available or appealing.  It's something different, something additional.  To be honest, a challenge that I have on Weight Watchers is actually using up all of the points I've been given.  At the end of the night, I hate the idea of eating just to eat, so I don't, but it's not uncommon for me to go to bed with points uneaten.  Many points uneaten.  Adding a few graze snacks into my week may be just the thing!

Graze note: Go online and rate rate rate!  Rate the snacks you get, and check often for new snacks!  I would love to see new snacks pop up when you log in, so that you can rate them before they show up in a box.  I want the chance to "catch" them before they show up in my box, if I wouldn't want them coming.  But I suppose it's an incentive to log in often and see what's new.  I might have to bump up my frequency to weekly - by the end of the second week, I'm really craving a new box. 

Thursday, September 11, 2014

Inpatient - Endocrinology - Day 4

This post will be blessedly short.  On day 3, we felt like we had his Endocrinology stuff figured out as best we could, but true to form, Aidan's motility tanked, because why wouldn't it?  We spent one last night tucked into an impossibly tiny hospital crib up on 5 West.  Did we sleep?  Nah.  But we were together, so who needs sleep?!

Love this guy

Saturday morning found Aidan feeling much better.  The docs had given him Senna, which is what GI recommended the last time we were in.  It worked great.  After two doses, things were moving again, and we felt good enough to get a move on.

See this forlorn face?  He was sad to leave because he likes it there.
All in all, it was such a productive trip.  We learned how to better manage Aidan at home (no more breaks from feeds, no more fasting at home before procedures!).  We learned what to look out for and how to better recognize when he's in trouble with respect to his blood sugar.  Every hospital stay finds him less anxious and fearful, and more trusting of doctors and what they're doing to help him.  And, sadly, we learned not to just trust that CHOP will have the nutrition he needs.  I wish that weren't the case, but the fact is, we don't need the added stress every time we go there.  We need to start bringing our home supply.

Thank you - all of you - for all of your well-wishes and thoughts while we were at CHOP this time.  While he's not old enough to understand, I certainly am.  It means the world to me.  We are happy to be home, and even happier that we made it home in time for this year's Strides for Safe Kids Food Allergy Walk and Expo!

Friday, September 5, 2014

Inpatient - Endocrinology - Day 3 (Come for the Endo, Stay for the Gastro!)

Last night was a long one.  Since we didn't begin the IV fluids until 10pm, we couldn't start weaning the formula until then either.  So, starting at 10pm, we began weaning his formula by 14ml and checking his BG and ketones every 30 minutes.  I don't know how our poor nurse (Annie) got anything else done all night, honestly.  The feed wean went from 10pm to midnight, and his BG went from 113 to 86, ketones holding steady at 0.2.  All good.  In the next half hour, he dropped to a BG of 74 (while still on IV dextrose) and his ketones climbed a bit, reaching 0.5 (still fine).  I vaguely remember a BG of 70 at 1:30am, while we were weaning down the dextrose, and then I drifted off to sleep sometime shortly thereafter.  Kind of.  I was in and out every time Annie, bless her heart, continued to check his BG and ketones all night long.  She later told me that his ketones were slowly climbing during that time.



Annie's party ended uneventfully at shift change (7am) and Aidan was holding steady around 70.  Our morning nurse got him at critical on her very first check - 46.  When she rechecked him, he was 51, and when she sent off bloodwork for confirmation, it came back at 51.  Just a hair over "critical."  So the fast continued.  His checks at 8:30 were in the low 50's.  Then, at 9am, a new wrinkle.  BG 51, but ketones were suddenly at 3.3.  WHAT?  Where did that come from?  The 9:30 check showed BG 41, ketones 3.8 - so the fast officially ended, both for low BG and high ketones.  Things happened pretty quickly after that - the lab confirmed his BG at 41, and the first round of bloodwork went in.  He got a shot of Glucagon (a hormone that's supposed to bring up his BG quickly) at 9:45, which immediately made him nauseous, and didn't even help.  He fell down to 33 by 10:00, and they decided to halt the test and put him back on IV dextrose. 15 minutes later, on IV dextrose, he was up to 50, which is still too low, but heading in the right direction.  He spent the rest of the morning slowly working his way back up to 70 on IV dextrose.

Not a happy camper
Dr. Langdon decided to go ahead with some growth hormone labs, so those were drawn an hour after the Glucagon and every 30 minutes after that until lunchtime, when the final labs were drawn and feeds were restarted.  The results that could come back immediately came back around 4pm - it doesn't look like he has a growth hormone deficiency - or at least not one severe enough to be the cause of his hypoglycemia.  So, this means a couple of things.

1. This tells us that Aidan's form of hypoglycemia is called ketotic hypoglycemia.  This basically just means that his body doesn't tolerate fasting, and while his blood sugar falls, he produces ketones, which are no bueno

2. We still don't have any answers about his poor growth.  I guess we'll have to take that up with his Endocrinologist when we follow up with her in a few weeks for the rest of the bloodwork results.

The plan is to remain on 24/7 feeds, since fasting proves dangerous to him, but it's thought that with a careful wean, Aidan could probably tolerate up to 4 hours off feeds safely.  He absolutely cannot just halt feeds (you know, exactly the thing we were doing).  We've been instructed that if he's sick and not tolerating feeds for more than 2 hours, we are to take him to an Emergency Room for IV dextrose.  We have a letter explaining his condition as "severe" and giving treatment protocols for him.  It uses intentionally terrifying phrases like "seizures" and "brain damage" when explaining the consequences of untreated hypoglycemia.  Honestly, it's kind of sobering and gives a new air of fragility to an already nerve-wracking kid.

The way he acted with critically low BG and high ketones makes me concerned that his sugars are low and ketones are high from time to time at home while he's on feeds, and we're not aware, because how on earth would we even know?  His face was flushed but clammy, he was acting really tired, and he was insistent that he's "really thirsty" - which is something that he very rarely says. Except for the times that he acts exactly like that, late at night.  Or maybe he's just 3 and manipulative.  Ugh.  I hate this.


We'll be checking his BG a few times a day, and probably also overnight, with additional checks anytime he's symptomatic. I know that we are okay, and we can do this.  There's just suddenly so much more to think about.  How will we prep him for scopes?  What about tube changes?  He needs to go NPO so he can be sedated.  But now we can't safely go NPO.  What happens when his pump breaks (a-g-a-i-n) and Homecare says they'll be there in "a few hours"?  Do we wait for him to crash?  Proactively bring him in for dextrose, knowing that he'll definitely crash? 

The biggest positive is that we're told most kids grow out of this.  We get to repeat this little slumber party next year, to see if he can pass the 36 hour fast.  That seems so absurdly impossible right now.  But eventually, most kids do.

So Endocrinology is ready to release us, and we'll be going home tomorrow morning sometime.  We're spending one more night for a GI concern - his motility seems to have slowed way down and we're worried about heading home without being sure he's going to continue tolerating feeds, especially now that not tolerating feeds is not an option.

It's a good thing he's cute...


Thursday, September 4, 2014

Inpatient - Endocrinology - Day 2

The doctors rounded our way around 9:30, and came up with the day's plan.  It's always interesting to hear someone else give your kid's story - what's important and relevant, and what's not.  This part, at least, is familiar enough.  Grumpy old doctors, residents trying to impress them, nurses, and whoever else joins the cluster all gather around the door and discuss your child.

The plan was to start an IV at some point today so that later tonight, we could wean down his feeds and start the fast.  Silly me, I thought we'd do the fast today and not tonight.  But it sounds like actually we'll be doing more of the same today as we did yesterday - continuing on normal feeds while checking his blood sugar every three hours.  His blood sugar was stable overnight, though it fluctuated between 79 and 110.  I still wonder why it goes down to the 70s when he's on feeds.

The Endocrine doctor, Dr. Langdon, came by around 11:30 to discuss Aidan and the plan.  He has a low IGF1 level (40) - "impressively low for a three year old" - but they don't know if it's low because he's got a growth hormone deficiency, or because he's malnourished (well isn't that just a knife in the gut?).  He is short for his parental curve, but he does seem to have good growth velocity.  He was born near the 50th percentile, fell to the 10th percentile by 2 months old, hovered between the 3-5th percentile until he was 1 1/2, and has been in the .5-1st percentile for the past 2 years.  So yes, he's fallen, but he's remained on his curve for the past two years.  There are some clinical signs of growth hormone deficiency that he doesn't display, but others that he does - so there are mixed indications.  We really don't know what to think at the moment.

I have trouble believing he's malnourished, honestly.  The formula is supposed to be nutritionally complete. He's finally putting on weight.  Can he really be malnourished?  Now I just have this image in my head of this guy, Dr. Langdon, shaking his head and saying "what a terrible disease" (the Eosinophilic Gastroenteritis).  I immediately felt defensive, because we feel like we have it so well controlled.  I just hope it hasn't been at the expense of his growth and development :-/

Sarah from Nutrition came in to talk, and helped me feel better about the malnutrition thing.  I don't know if he's been getting what he needs or not - I suspect he has been, because he's been gaining weight - but if he hasn't, it's probably because of a malabsorption-type issue.  Not because we're not giving him what he needs.  We've worked so hard to find a formula that works, and when we found it and fought for it and use it and still hear that may be malnourished - it's hard not to feel defeated.  I hope the growth hormone stim test gives us more answers.

You know what I forgot to mention?  The whole hospital transitioned to Infinity pumps!  I love this!  I know exactly what the alarms means and how to shut them up!  Yes, I know we aren't supposed to touch the pumps, but talk to me again at 3am when it's been alarming for 15 minutes and nobody's answered the nurse call button.  Pausing the alarm is a perfectly reasonable course of action.

The other reason this is awesome is that it gives us the opportunity to finish out the feed we brought from home while CHOP inevitably makes a debacle out of finding his formula.

Infinity Pump!
By awesome coincidence, CHOP is having a radiothon this week.  There are activities all day today and tomorrow.  We ventured out of the room at lunchtime to meet Elsa, who is evidently some uber-popular chick from Frozen.  Aidan was unimpressed, to say the least.  He did his best Joe Friday impression (am I dating myself?):

Who are you?  What is this dress?  Is that your hair?  What are you doing here?  Are you sick?  Where's your tubie?  Are you coming to see Dr. Liacouras?  Do you have allergies?

He then decided he was done with her highness, leaned in close, and said "I would like to go find a canyon today."  And that was it.  Little girls were dying to meet her, and he was so bored he couldn't even stand it a moment longer.  Not long after that, someone started banging cymbals together - in the huge echo-y atrium - and Aidan was done-zo.  He gave Spider-Man a once-over, nonchalantly informed him that "food is not safe for my mouth, I have allergies.", and hightailed it back up to his room.  I'm not sure I'll be able to coax him out of bed again.

There is no such thing as too many of these pictures.
So that was today.  Aidan's blood sugars were monitored all day while he was on feeds, to continue establishing his baseline.  Around 7:00pm, the IV team came in and attempted to place two IV's - one to administer fluids, and the other for blood draws.  He needs two, because they don't want the blood they draw to be potentially contaminated by anything they push in through his IV - so they can't draw blood from the same site that they're using to administer something like Glucagon or Dextrose.

Hotpacks - we hate them!

I said attempted because, as we all know, Aidan is the worst stick in the history of bad sticks.  They blew three veins before finally getting their fourth (and final) one placed.  That one will be used for blood draws, but we still needed something for IV fluids.  So they gave him an hour off, then hotpacked his left arm for an hour, and tried again.  This was when things got sad - Aidan realized he had no hands left to play with toys, iPads, or crayons.  It was a long hour.

Sad boy
When IV team came back, they meant business and they got that IV placed like it was their job.  Which, you know, it is.  But still, it was pretty great.  It really isn't their fault that his veins are so awful.  So now he's pretty incapacitated and looks fairly pathetic.

He's not sleeping, he's just hamming it up, and refusing to look at me is sadder than anything.
We'll start up his fluids and hopefully get this fast process started soon.  It's supposed to include weaning his feeds down over 2 hours, and then weaning his fluids down.  During that time, we'll be checking his blood sugars hourly (potentially half-hourly) and waiting to see how long he lasts before going low (70) and then critical (50).  When he goes low and/or critical, there is bloodwork that needs to be drawn immediately (hence the second IV).

My worry with this approach is whether we'll be able to recreate what we saw a few weeks ago.  We don't normally wean him down over 2 hours, while keeping him on IV dextrose, which we then wean down.  Which they know, so I'm sure they have their reasons.  I just hope we get some information that helps us in our daily life, you know?

One more picture for the night...  It's been a really rough night with way too many needles, and it's all been really unfair to him, but you know what?  Nothing gets him down for long.