Wednesday, August 13, 2014

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.

Monday, August 11, 2014

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.

Monday, August 4, 2014

CHOP in June - Part 2

EEEEEK!  It's AUGUST and I didn't finish telling you about our trip to CHOP in June.  Life really got away from us.

When you left us, Aidan had been painfully vomiting green bile.  After a weekend of this, we were sent to the ER for some tests, and ultimately allowed to go home.  A week passed without improvement and we followed up with GI, who sent us directly back to the ER, where Aidan was admitted on a Friday night.

Saturday on 5 South was exceptionally uneventful - no feeds for Aidan and no vomiting.  Scattered episodes of stomach pain, but nothing severe.  Around lunchtime, we started Pedialyte at 35ml/h (half of his normal rate) and it was tolerated well.  Around dinnertime, we increased to 70ml/h and after some initial discomfort, he settled down and tolerated that well too.  I don't know - maybe he just needed some gut rest?

A gut at rest :)

On Sunday, the doctors rounded around 10am and came up with a plan.  We'd be starting feeds slowly and increasing every four hours as tolerated.  If he had an episode, we'd call radiology for emergency imaging.  If not, we'd do imaging on Monday morning.  I figured we'd have a quiet day.  But it wasn't without bumps in the road.

For instance - did you know that if your child is on PurAmino, you should come prepared for no one - ever - to have heard of it?  For the formula room to insist they don't have it?  Nor do they know how to mix it.  Tom had to make an emergency trip downtown with a supply of formula to save the day.  When it arrived, it took hours - literally, hours - for the formula room to figure out what to do with it.  The kicker?  They eventually realized that they did have it (still didn't know how to mix it, so thankfully I recently blogged about how we mixed it - otherwise there's no way I'd have remembered).  Long story short - the 10am decision to start feeds actually took effect at 3:30 due to all of that hoopla. And advancing feeds every 4 hours?  HA!  We got up to 45ml/h before having to go NPO.

Sunday also brought some stoma pain - It's looking a little bit infected, which is a shame since it's normally such a beautiful stoma.  They ordered up some mupirocin (easy enough) and some tylenol, which caused a(nother) pharmacy debacle.  See, we don't use their tylenol, we use ours.  They don't have dye-free tylenol because dye allergies aren't real, evidently.  So we have to bring our own and send it to their pharmacy, where they verify it (whatever that entails) and eventually it arrives back in our room to be administered.  Unfortunately, the "eventually" is sometimes a while. Like an hour or two.  Which is really unfortunate for a kid who's in pain.  I later learned that the order was written incorrectly, which confused the pharmacy.  Then the pharmacy wrote a confusing note back to the doctor, who was (you guessed it) confused.  Then our nurse inexplicably left the floor without her phone, and the nurse filling in knew nothing about it.  Sigh.  We did work it out eventually. 

So as of Sunday evening, the plan to advance feeds was pretty well compromised, because he would have to be NPO (nothing by mouth.  Is that common knowledge?  I don't know if pre-all-of-this-me knew those particular letters, but we know them well now) at midnight in preparation for tomorrow's Upper GI.  We'd started at 35ml/h at 3:30pm, and around 8:30 we moved up to 45ml/h, but no further advancement because of the looming Upper GI.

An Upper GI is a special kind of X-Ray that helps doctors see the gastrointestinal tract.  Preparation includes drinking barium contrast (so some people call this a "barium swallow study") and then taking lots of pictures - usually about 2 hours' worth, and sometimes even more!

On Monday, we woke up just in time for the Upper GI.  Aidan took one itsy bitsy sip of Barium and then couldn't be convinced to take more.  Luckily, we aren't too concerned about the "upper" part, and really just needed to see the barium move through the stomach and small and large intestines.

The first thing we did with the Upper GI was take a "before" picture - his tummy without any Barium.

I spy a tummy!
 Then, Aidan took his tiny sip of Barium, and they took X-Rays.  And then Barium was injected into his G-Tube, and more X-Rays.  Then we got to cheat a bit, since he has a J-Tube too.  We got to inject Barium into the J-port, and the tech said that he thought we'd get out of there early!  After that, we had to wait in a little room for 20 minutes while the Barium moved through his intestines, and then back to the X-Ray machine for more pictures.  I'll speed this story up and tell you that we did not get out of there early, even with the cheating.  The tech was thinking we might only need one or two cycles of waiting/pictures - so we'd be done in less than 90 minutes total.  Actually, it took over four hours.

Ho hum.  Waiting is the worst!
Aidan's motility is not the best, even on erythromycin (his motility med), so the Barium really just wasn't moving through like we hoped it would.  It took forever.  But eventually, we did get a belly full of Barium.

We'll file this away under "things only a mother would love"
When we finally got back up to our room, Aidan took a nap and I got some work done while waiting for the doctor to come talk about the results and our plan for him.  Turns out it would be a preposterously long wait, since GI never actually came back and eventually left for the day.  Thanks, jerks.


When GI came back the next day, we did learn that Aidan's Upper GI was not normal.  We already know that he has delayed gastric emptying - when food (or formula, whatever) is introduced into his stomach, it doesn't move through at the normal rate.  This is why it took so long for the Barium to move through.  The test also showed some not-too-specific inflammation of the colon - which could be from normal illness, or could be from an EGE flare.  Not really any more information than we previously had.

Ultimately, we decided to bring Aidan home, with orders to return immediately if the bilious vomiting began again.

It was more or less the same as ever.  Aidan in crisis, needs gut rest and IV fluids for several days, and a slow reintroduction of feeds.  I wish I knew why this keeps happening to him :-(

Side Note...

The whole time we were inpatient, Aidan was on contact precautions due to a suspected c-diff infection.  The hospital was unable to confirm or rule out the infection because - true to form - Aidan's digestive system shut down and no test sample could be obtained.  This particular monster would come back to bite us later on.

Final Thoughts...

I understand that CHOP is ranked #1 by US News & World Report, but clearly, they've never actually stayed here.  Or they don't have children.  Or they don't need fancy luxuries like a pillow to sleep on.  I do wonder how different our experience would be with a planned admission for a surgery.  Emergency Room visits that end in admissions are just always so nebulous and vague.  Who knows what we're doing or when we're going home?  My experience here would be at least 80% better if doctors could be bothered to clearly communicate.