Monday, October 14, 2013

CHOP Day 3

Day 3 was much calmer.  We started feeds overnight and things were very quiet.  No pain with the feeds, no screaming.  Just (very) slow advances as we move toward his target of 65ml/h.

I discovered the downside to our particular room location - all day and all night, we are treated to a symphony of screaming children down in the ER.  I can't really complain, given how often my child is that screamer.

Going home happened quickly - CHOP would have been happy to keep him, but he was ready to come home.   When a boy is prancing around in his hospital crib, demanding lollipops - it's time to go.  It would actually take us a few more days to get his feed rate up to 65, so ultimately I was really glad we made the decision to go home.

It really is amazing - when he's sick, he's so sick.  When he's better, he's a squintillion times better, pronto.

I got to take these little hamhocks home <3

Monday, October 7, 2013

CHOP Day 2

Day 2 started a bit rockily - IV checks every hour made for a seriously bleary-eyed mama by 8am when we finally called it a morning and introduced ourselves to our Nurse.  Erica.  Sadly, she recognized us from our last stay.  It's one thing to start recognizing nurses - but when they start recognizing you - it's time to stop having a sick baby!

Erica told us that she didn't know when or even if they would be able to fit Aidan into the schedule today for his Tube Surgery.  Extremely frustrating, but all we could do was wait to see.

A quick check out the window showed a Shields Family first - a gorgeous view of the ER.  This means that we're on the opposite side of the hospital than we normally are - it's so weird to have the room set up "backwards"

The rest of the day was insane:

9am: Another Anesthesia Consult.  We talked through the differences between anesthesia and sedation.  Because of his extreme level of terror, they think it's best to go whole hog (anesthesia).  But they tell me to have hope, and that as he gets older and more cognitively aware, he may start feeling safer and more able to handle what's happening to him without being put to sleep.

10am: Apparently I signed procedure consent?  Honestly, I vaguely remember a doctor asking me to sign something, and I signed it.

11:30am: Erica came in to tell us that we would be moving forward with the procedure, and almost immediately, Transport arrived.  Aidan wouldn't sit on the stretcher, so I carried him down.  While we waited in the PACU (post-anesthesia care unit) for things to get started, Aidan clung to me nervously, and we went through all of his allergies and medical history. 

12:00: Aidan went into Surgery.  I was told that it would be quick - Ten minutes or so for them to change the tube and quickly treat the granulation tissue.

This was the longest wait EVER.  It's always the longest wait ever, but still.  This felt insane.

1:30: They finally came out to speak with me about his surgery.  He did well, but it took (way) longer than expected.  They changed the tube, and downsized to a smaller tube (16Fr 2.0cm instead of 16Fr 2.5cm) - which is great, because we've ALWAYS suspected his GJ pain was due to a poorly sized tube.  They treated the tract with silver nitrate to remove the internal granulation tissue.  But the scary finding, and the reason for the long surgery time, was that they found an intussusception.  Basically, one part of the bowel slipped inside another part, causing an obstruction, which led to lots of pain for Aidan.  Intussusception is a medical emergency, and we're extremely lucky that it was found so early and they were able to fix it before there was any necrosis or tissue damage.  If they hadn't found it and fixed it so quickly, he could have lost part of his intestine, or worse.  Intussusception can be fatal in a matter of days if left untreated.

Looking as sad as I can.
Aidan woke up hard from the anesthesia, but lots of cuddles from mommy made him feel a lot better.

2:00 - Ready for Transport back up to 5 South.  We did not attempt feeds right away - he needed time to recover and rest.  He was snoring like a full grown man.

I felt awful leaving him, but I was starving, so a Nursing Student sat with him while I ran down to the cafeteria for some delicious elderly hot dogs.

Wouldn't be so bad if today weren't October SIXTH.
 2:45 - Aidan's IV became sluggish and the IV team was called in to save it.  We really couldn't afford to lose the IV, since the other hand was already blown.  Success, though - it was saved :)

3:15 - Plan was devised to start feeds at 4:30.  We would start at 30ml/h and increase by 5ml/h every 3h until we reach his goal of 65ml/h.  As long as all went well, we'd be discharged once he was at 65ml/h and tolerating it well.

4:45 - Feed started at 30ml/h

5:15 - Feed halted.  Aidan was in severe pain.  The doctors agree that he's not ready for feeds yet, and we will need to watch him carefully for any signs of a repeat intussusception.

7:00 - The pain has continued even without feeds, so we gave Tylenol and agreed not to restart feeds for a few more hours at least.  The rest of the evening was quiet and uneventful, except that Aidan demanded to be held pretty much the whole time.

If you aren't going to hold me, I'll just lay here and pick my nose.

Midnight - Feeds restarted at 30ml/h without fanfare.  We will increase slowly per the original plan, and if all goes well, we will go home sometime tomorrow afternoon.

Sunday, October 6, 2013

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.

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.

Thursday, October 3, 2013

Never a Dull Moment - Dentistry

I took Aidan to the dentist today.  As expected, the screaming began the moment I took him out of my car.  He didn't recognize the building - or maybe he did - and he wanted no part of it.  It got louder and more intense with every step we took toward the doorway, and when we finally got inside, he was almost deafening.  He wouldn't even cozy up to the Ms. Pac-Man Game that they so thoughtfully provide (complete with stepstool and unlimited free plays!).

When we got back to the dentist's lair perfectly harmless room, I sat in a chair with Aidan, and laid his head down in the hygienist's lap.  She carefully chose a dye-free toothpaste and foam (Foam? No idea what this is.  Should I be foaming him?) after we talked through all twenty six of his food allergies (and let's not forget red dye!) and brushed his choppers.  Yeah, he was still screaming.

When she was done, the dentist came in and took a peek in his mouth - his teeth are nice and strong, although we still see some staining (whether from his reflux or the iron in his formula - we don't know) on the back teeth.  We'll continue to brush with baking soda at home and when we come back in 6 months, we'll discuss scheduling some OR time to have him sedated for a cleaning.  I'm calling it a win that she's unconcerned about the pacifier still.

On the way out, Aidan was rewarded with a new toothbrush, two stickers, and a yellow bouncy ball.  all was right in his little world - and he even stopped to play Ms. Pac-Man!

 Unfortunately, as I was buckling him into his carseat, I noticed a distinct reddening of his cheeks and a few scattered hives on his face.  Crap.  I knew I should have checked the toothpaste ingredients myself.  Allergy mom fail :(

Never a dull moment, but he's okay.  And now we know that we need to be more careful.