Monday, July 14, 2014

Feeding Tube Awareness Foundation - A Parent's Introduction to Tube Feeding

I think everyone knows by now how much I love the Feeding Tube Awareness Foundation.  They were a really helpful source of information for us when Aidan got his tube, and I still go back there when I'm troubleshooting a problem or feeling a little discouraged.

Recently, they released A Parent's Introduction to Tube Feeding - which you can download HERE - or request a hard copy of (free for new Tubie Parents, Hospitals, and Medical Professionals.

The early days with a tubie can be very dark - FTA is a bright shining light.  If you know someone who needs that light, please send them in this direction


http://www.feedingtubeawareness.com/


Tuesday, June 24, 2014

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.

Monday, June 16, 2014

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.