Inpatient - Endocrinology - Day 1

A planned admission is such a different animal, and yet really, it's all the same zoo.

We arrived early enough to have the luxury of taking our time as we schlepped all of our gear through the hospital.  I felt 50% absurd for actually bringing luggage, but also 50% justified, because I know that we're going to be here for a few days, and I'm a human being that needs food, clothing, and the occasional shower.  It makes perfect sense that I might pack those things in a bag and bring them with me when I arrive.  It's just that it adds this air of "vacation" to the whole experience and it feels so inappropriate.

Anyway, I let Aidan pick out a treat from the gift shop - he went with a Doc McStuffins magic ink book - and we went to the Asplundh Center in the Main Atrium for Admissions Registration.  We answered a few questions and I signed some papers - I assume this is the stuff I normally do bleary-eyed and half asleep in the ER at 3am while awaiting a bed on 5 South.  It was downright luxurious to kick this party off 12 hours earlier in the comfort of a quiet room that didn't smell like the previous occupant's vomit.

We had a short wait while they got his room ready - namely, swiped a crib from some other room, because I know, he's a million and should be in a bed by now, but get off my back, okay? - and then we headed up to 5 West, where we settled into Room 9.  We'd been warned that the rooms up on the Endocrine floor were small and not private - so we were prepared for the worst - but actually, no complaints here.  Ours is small by 5 South standards, sure, but rooms up in Gastro are pretty huge (I've always wondered why.  Were they meant to be doubles?) and it's definitely private.

Nobody else is fitting in here.

Aidan had no problem getting right down to business, by which I mean getting his flashcards sorted and his DVD player going.

He quickly decided that one measly show was insufficient.  Any kid worth his salt needs at least two forms of electronic entertainment at all times.

I had to give the backstory to the docs here - which I realize now that I never gave on this blog - so here's the very short version.  A couple of weeks ago, Aidan had a routine scope at CHOP Exton.  The prep included being on Pedialyte for the entire day prior.  He seemed fine at the time, but for some reason, we didn't check his blood sugar that day.  I really wish we had, in retrospect.

The next morning, we woke up early to go down to Exton for the scope.  He seemed lethargic, but it was also 5am, and who isn't lethargic at 5am?  I didn't think much of it.  He fell asleep in the car on the way there, and I had trouble waking him when we got there.  I checked his blood sugar, and it was critically low - 34.  I rechecked twice, and got 31 and 36.  He was rushed back to the PACU and started up on IV dextrose, which brought his blood sugar up to 146.  He was taken off the dextrose for his scope, but within 15 minutes, his blood sugar dropped to 111.  In another 30 minutes, it dropped to 80.  He was given formula boluses, but it fell further to 71.  They put him back on IV dextrose, which got him up to 186, and then he was released to go home.  30 minutes later, he was at 118.  30 more minutes later, he was at 67.

Since then, he's been on 24/7 feeds with no breaks at all, because he's not holding his blood sugar up on his own.  The thought was to admit him today to figure all of this out with a plan in place for what tests would be done to help get to the bottom of things.

I was thinking that it was the smoothest admission we'd ever had, which was obviously the stupidest thing one can ever think in a hospital setting, because you're begging for trouble.  Literally as I was thinking these hazardous thoughts, our nurse brought news that despite the multiple conversations I had with the admissions and endocrine people prior to our arrival, they were unable to find any formula for Aidan.  And we only had this much left of the feed he came in on:

Long story short, I had someone drive some in from home, and like last time, by the time it got here, CHOP was able to rustle some up.  I really wish they could get their act together.  I know it's not a common formula, but it's prescribed by our CHOP doctor and he's gotten it inpatient before - I know it's here.  Why do we have to go through this every time?  Is it too much to ask where they found it, so that next time this happens, I can tell them where to look?  Sigh.

Anyway, the plan for the rest of the evening is to keep him on his continuous feeds and check his blood sugar every 3 hours to establish his baseline (90something at 6pm, 80something at 9pm).  Tomorrow, when the team rounds, we'll discuss the plan for his fast.  That's when the real fun starts.  I'll keep you posted!

A foray into blood glucometers

After a whirlwind visit to Endocrinology, we found ourselves in possession of a slew of diabetic testing supplies, with instructions to test Aidan's sugars for the next few days as he comes off feeds to monitor for uncontrolled low blood sugar episodes.  I'm writing this post for me - because today, on day 1, I remember everything I've been told.  I may need to read this later.

Supplies - A grocery bag full of vampiric goodies.

We were given a Contour Next EZ Meter.  And no training whatsoever.  My wonderful colleague, Bob, took the time to show me what to do, and I felt at least seven hundred times better once he did. There is also a really helpful instructional video on Bayer's website.  A note - the meters should be operated in temperatures between 41 and 113 degrees (you'll get error code E1 if you're out of temperature range).

I also received a bottle of control solution - which contains a premeasured amount of glucose.  It's useful for practicing with the meter, on the off chance you don't want to stick yourself a few dozen times.  It's also used for testing the meter to ensure that the meter, test strips, and your technique are all working correctly.  It comes with instructions, but basically, you put a drop of control solution on a nonabsorbent surface (they recommend wax paper), and touch and hold the tip of a test strip to the control solution until the meter beeps.  You compare your result to the normal control range on the test strip bottle (and different bottles may vary - mine do).  If the results are questionable, the meter user guide should offer some suggestions regarding next steps.

I am nearly positive this is the wrong stuff.

Alcohol Prep pads - for cleaning skin before testing.  Self-explanatory.

Contour Next Test Strips - Obviously, for use with the meter.  They test blood glucose levels between 20 and 600 mg/dL - numbers I expect NEVER to see.  This should go without saying, but they're single use only.  Never reuse a test strip.  It's also important to keep the bottle closed tightly to protect the strips from humidity and contamination.  A nice feature that I think most test strips have now is the "sipping" technology - you just have to put the test strip up next to the blood and it draws it up into the meter - you don't actually have to soak the whole strip in blood.  Older meters/strips didn't work this way, and needed more blood to test.

Microlet 2 Lancing device & lancets - This is what you prick the skin with to obtain the blood for sampling.  The Microlet is easy to use - you just pull off the cap, insert a lancet, twist off the top of the lancet, replace the cap of the Microlet, and choose your endcap setting (tiny droplet for shallow puncture, big droplet for deep puncture) based on the patient and test area (fingertip vs. forearm, for example).  You press the endcap firmly against the test area and press the blue button, and it's done.  Like the test strips, you should never reuse a lancet.  Once used, they're no longer sterile and should be replaced.  To remove a lancet, you open the endcap, press the needle into the lancet cap you removed earlier, eject using the blue button and blue reset slider, and dispose as medical waste.

Not scary.

Even less scary.  Itsy bitsy needle.

Basic Use - We do not use any advanced features of this meter.  Aidan is not diabetic - he is experiencing hypoglycemic episodes that we need to monitor more closely.  The advanced features (reminders, meal markers, etc) look really helpful for diabetic patients, but that's not us.

- Load a test strip into the meter, gray square end facing up.  This turns the meter on.  You'll see a blinking picture of a test strip with a blood drop - this means it's ready to test.  If you've loaded it incorrectly, you'll get error code E4.  If you use the wrong test strip, you'll get error code E7.
- Draw a blood sample using Microlet and touch the tip of the test strip to the blood drop.  Hold it in place until the meter beeps.
- If more blood is needed, the meter may beep twice and show a picture of an underfilled strip.  You'll have 20 seconds to add more blood to the same strip - if you don't, you'll get an E2 error code and you'll have to start over.
- Once the meter has what it needs, it will evaluate the sample for 5 seconds and display your reading and store it to memory.
- Record your reading and remove the strip to turn off your meter.  And you're done!


My own testing efforts -

- Attempt 1 with control solution resulted in error code E3 - either the meter is sensing a used test strip, or the wrong control solution was used.  Ummm...  Everything is brand new, and this is definitely the control solution they gave us.  Wha??
- Attempt 2 - E3.
- Attempt 3 - After gently rolling the bottle around to make sure the control solution is all mixed up - still E3.  ARGH.
- Attempt 4 - After being ultra careful that no part of my fingers touched any part of the test strip sipping area - E3.
- Attempt 5 - The control solution is clearly broken.  I tried with my own blood.  I had chicken for dinner about 4 hours ago, and my blood sugar is currently 114.  Humm.  We'll call that "high normal" and assume my technique is okay.  And also, the control solution is broken.

Important points - these are what's important for us.  There are a million and one things that are also important for families managing diabetes.  Thankfully, we're not walking that road.

Normal non-diabetic values are between 70-110 when fasting.If Aidan's fasting blood sugar measures below 70, we are to report that to his doctor within the week so we can change his feeding strategy.  If Aidan's blood sugar measures below 50, we are to seek immediate medical attention.

Some symptoms of low blood sugar (hypoglycemia) are shakiness, sweating, fast heartbeat, blurry vision, confusion, lethargy, irritability, dizziness, and seizure.  Some symptoms of high blood sugar (hyperglycemia) are frequent urination, excessive thirst, blurry vision, fatigue, and hunger.  Some symptoms of ketoacidosis - a serious and dangerous medical emergency - are shortness of breath, nausea/vomiting, and very dry mouth.  All of these symptoms are a good prompt to check blood sugar for a patient with a known issue - and someone with a reading of less than 50 or more than 250 should call their doctor right away.  Again - not anything we ever expect to see with Aidan, but good to know and I figured there should be something informative in here somewhere.

After much reading and self-testing and worrying, I mustered up the courage to test Aidan for the first time.  I let him pick which finger he'd like to test, and he was awesome about it.  Didn't cry at all.  He just asked - are you done yet? The hardest part was getting him to hold still while I touched the test strip to the blood drop.  His reading was 74, while still on a feed, and it officially occurs to me that I never asked what a normal nonfasting blood sugar should be for him.Whoops.

More to come as we test and learn more.

I don't love on CHOP enough

As I finished writing the latest CHOP saga, it occurred to me that I really only speak out when truly unacceptable things are going on in our lives.  We're marginalized, we're ignored, someone fails to understand us, someone forgets to get back to us, we're arguing about procedures and preps, we're arguing about medications and allergies, we're fighting for formula.  It's enough to scare everyone we know away from CHOP, which is just about the saddest thing ever.

CHOP is an amazing place.  It's a wonderland where the sickest and most complicated children can go to heal and grow.  It's a place where ER nurses remember my baby when he comes in.  Where I'm allowed to contort into unimaginable positions to fit into a hospital crib all night long with my frightened child (not allowed at DuPont!).  Where child life specialists never stop trying to include him, even though he quite clearly blurts out "no! get out of here!" every time they try. It's a place where you can get more than halfway decent food (most of the time), and the sushi guy makes me fresh cucumber-only rolls.   If Aidan is too sick to be at home, there's nowhere on Earth I'd rather take him.

Our last hospitalization reminded me of what a special place this is, and how special the people are who work here.  As we were heading home, I posted a picture of Aidan walking through the CHOP Atrium on Facebook.  When our nutritionist saw the picture, she immediately knew where we were, and responded with two words.  "Call Me."

She loves us.  She cares.  And she's not the only one.

I hope that the next time I'm unspeakably angry or completely devastated, I take a moment to come back and re-read this.  Make no mistake.  This place - these people - save lives.  Every day, in a thousand ways.

Thank You.