A Control Update

So, aside from a few additions to Edie's saga, I've been MIA for a bit.  Where have I been?  Well, for starters, back to the PICU.  And because I always tell my speech students to define terms for their audience, that's the Pediatric Intensive Care Unit.  As we continue, you may encounter some other terms & phrases that may be unfamiliar, so I'll provide a link because honestly, I cannot again explain these things.  I mean I get that the general population doesn't know what basal insulin is or why ketones are a bad thing, but I just can't go through it all again.  To those of you who've listened to a lengthy explanation after asking How's Reagan?, I apologize.  There's no short answer, & right now the answer changes from hour to hour.

Mere hours after I posted this manifesto on control, we found ourselves headed back to two of our recent haunts, the ER, & then shortly thereafter, a room in PICU.  From the moment we returned home from the original hospital stay, Reagan's numbers were running high.  I was told to expect some high readings. So okay, I thought, things are going to be rocky until we get the hang of this.  As I read as much as I could online & asked questions of a few individuals I've been in contact with, I realized that I had not been given a proper definition of 'high.'  Most diabetics refer to anything that begins with a '2' as a high blood sugar, & many work diligently to keep their highest numbers in the 140-150 range.

Armed with my inaccurate understanding of a 'high' sugar, there were several days when I was happy if I saw numbers beginning with a 2.  I knew Reagan needed more insulin, but I didn't feel I understood enough about the two insulins she takes to play around much with her dose.  We were told to up her basal insulin by one unit, & her insulin to carb ratio (I:C) was tweaked a bit, but I still saw no real improvement in her numbers.  By the time I spoke with an on call endocrinologist who told me, after hearing Reagan's numbers, to up her basal insulin by two units, she had hit nearly 600 a few times.  I know that all mothers worry about their kids' health, but let me tell you, nothing will age you faster than seeing 588 pop up on your child's glucose monitor.  This was nearly her number when we took her to the hospital in January not realizing she is diabetic.  It was a bit demoralizing that, despite the vials of insulin in my possession, I could not keep her sugars under any better control than when we didn't even know she needed insulin.

After we upped the basal insulin significantly, the numbers were a little better, but I was still seeing far too many post-meal spikes that began with numbers like 4 & 5.  Not good at all.  I began checking her for ketones, & I could not get a clean strip even when I saw a dip in her sugars.  I knew we were in trouble . . . & then she threw-up.  As soon as the vomit hit the floor I told Trey to put her in his truck & take her to the ER.  When the body can't access the sugar & carbs a person eats as an energy source (which it cannot do without sufficient insulin), it begins breaking down the fat & muscle.  Basically her body thought it was starving despite her regularly eating.  This is why rapid weight loss is a sign of the onset of Type 1.  When the body breaks down fat, an acidic waste product (ketones) builds up.  Once ketones reach dangerous levels, the blood becomes acidic, which easily throws off the body's pH, hence, the vomiting.  Blood work confirmed that she was in DKA (Diabetic Ketoacidosis) & we were sent to a room in PICU, where we settled in & had a long talk with the doctor from about 3am to 4am.

Oh, shoot, well there I go again with the ketones speech.  I slipped up after promising you.  I guess I feel everyone needs to hear a fantastic explanation of ketones since I was never given one during our first hospital stay, hence, the second hospital stay.  By the time I'd read enough on the Internet to know when we needed to test her, & when we were in trouble, well, we were in trouble.  They warn you constantly about too much insulin leading to low sugars, but hey, hey guess what medical community?  Consistently high sugars are not so great for a three-year-old either, & sometimes mom is right when she insists the three-year-needs more insulin.  And breathe.

The second stay was shorter than the first, thankfully.  By the next day Reagan's blood work was clean & her IV was removed.  Despite the quick trip, she did leave with a few parting gifts:

I quickly realized that while the hospital staff knew exactly how to normalize her blood & her insulin levels via IV, no one was telling me what I needed to do to ensure we didn't end up back in the ER.  Everyone had a different idea about how much basal insulin she needs; you know whose idea we're going with at the moment?  MINE.  I did speak with her endocrinologist on the phone the day after we were released (since she went to med school & all that jazz) & will be emailing her Reagan's numbers periodically.  The numbers are improving.  Something crazy happens with her sugars between breakfast & lunch everyday.  It doesn't matter if she wakes at 80 or 180, she is soaring by noon.  This is what caused the DKA.  She would fall at night, & then jump before noon, & the amount of insulin I was told to use as her correction factor was just not nearly enough to bring her down so she spent too many days barely dipping near 200.  Sugars over 250 put you in danger of ketones, & as they build & build, you become insulin resistant.  The amount of insulin I injected her with the day before we ended up back in the hospital would knock a grown man flat.

In other health news, a few days after returning home from PICU, I noticed a patch of weird-ish skin on my hand.  I tend to have dry skin & have been known to break out in festive hive-like splotches when I am tired & stressed.  I looked at it & looked at it, & late that night I decided I had picked up staph during our hospital stay.  I called my mom, & about an hour later my mom & I were headed to an after hours clinic while Trey, my dad, & both of Trey's parents attempted to get Reagan & Henry bedded down for the night.  I know, I know.  I may have overreacted.  I am tired & very, very skittish about Reagan being exposed to anything that might stress her body out, because that will jack her numbers up.  I plead my case to the nurse practitioner & she gave me a script for the meds I wanted.

The splotch looks much better.  Maybe I didn't pick up staph, but I am going to finish the meds because in the condition I'm in, I need a boost anyway (& because while I rarely take them, when I do take antibiotics, I finish them, & you should too).  The main reason I'm sharing this is to explain why I was sitting around in Walgreens at almost midnight.  Had I not been waiting for my meds, I would never have seen these gems.  I mean I've been dealing with a lot lately, but I did smile & pat myself on the back for never having had a need for these:

Or this:

 

If my staph scare isn't enough to demonstrate my mental state, I currently owe Target $39.  There could be no greater indicator of the extent to which diabetes has taken over my life than the fact that all I owe to the good people of Target is $39.  I'm surprised they haven't called to check on me.  You know who did call me?  A representative from Blue Cross.  They probably think we're trying to bankrupt them.  A lady from their Disease Division (lovely, I know) asked me lots & lots of questions about Reagan's time in the hospital, how she's adjusting, etc.  She was talking to me like I'm twelve, & I think at one point she may've asked me if I wanted a social worker to pay us a visit.  She did seem sincere at times.  I tried to be patient with her.  I wanted to tell her to hush, that the only thing we need from them is coverage for more of the meter strips we use to check Reagan's sugars because while checking only four times a day is an option for some diabetics, it is not recommended for a three-year-old who was recently hospitalized with DKA & whose insulin needs remain a bit mysterious.  I didn't say that because I doubt the chatty ladies working in the Disease Division have much pull.

To relieve some stress, the day after Reagan was released we took the kids to the park, & I have to share these of Henry with you.  This was his first time in a swing:

He brings me considerable joy.  He is a smiling fool most of the time, & I've never needed a smile more.

AZ

Control

I'll begin by confessing that I am an epic failure at being a pancreas.  Epic.


This book:

is en route to my mailbox as I type.

If you can't bear another post about my child's diabetes, you'd best check out now.  Aside from Henry hitting the eight month mark, which of course I captured in pictures featured below, diabetes is my whole world right now.  I mean, you didn't think I'd pay any attention to the Olympics, did you?  From what I gather, the big story is that Bob Costas has pink eye.  I'll pass.  If I ever make it to bed with enough energy to stay awake awhile, I plan to watch not curling, but Silver Linings Playbook, which has been calling to me from the DVR for weeks now.

When we left Reagan's doctor's office in Jackson a few weeks ago, I was looking at the papers they handed us when we checked out.  I noticed that under "Reason for visit" it stated "uncontrolled diabetes."  I felt like the paper was calling me out; I don't do well with anything that is uncontrolled.  Her blood sugar readings are currently consuming me.  I am only sitting & typing this right now because Trey came home from work & told me he'd play with the kids in the living room because I needed to, & I quote, "Go chill out."  So, this is me, chilling out.

I know that a lot of children are diagnosed with Type 1 Diabetes at a young age, some even younger at diagnosis than Reagan; there have been many mothers who walked this path before me.  I wonder how those mothers handled it, at least immediately after the diagnosis in this insane period during which we were told to expect some erratic sugar readings until we (& by we I mean ME) figure out how much insulin Reagan needs, & when exactly she needs it.  You should know that I have been on the phone with someone from the doctor's office in Jackson on an almost daily basis asking them to further clarify 'erratic.'  When I'm not on the phone with the doctor's office, I am having this conversation with myself (usually in a corner of the house with a cup of coffee in my shaky hand): Should I check her number?  Maybe I should wait another thirty minutes?  As you can imagine, I am barrels & barrels of fun right now.  

In a recent email exchange with a Type 1 Diabetic, I was told that,"Diabetes is a personal disease."  It sure is.  The insulin dosage that works for one thirty five pound three year-old is not likely to be the insulin dosage that works for another thirty five pound three-year-old.  The doctors are helpful & they know their stuff & all, but I've come to realize their guess is about as good as mine (between you & me, despite my having made a D in chemistry in high school, right now I think my guess is better).  It's all trial & error, & it's a bit maddening at times.  Ok, it's maddening all the time.

The odd thing is that diabetes is, in one respect, a simple disease.  If there is too much sugar in the blood, insulin is needed.  If there is too much insulin, sugar is needed.  Frustratingly, there are so many, many variables that affect one's sugar levels, as I'm discovering, & figuring out how to balance it all to arrive at acceptable blood sugar levels is, to date, the toughest thing I've faced.  Everything is compounded by the fact that Reagan is three.  She has an impressive vocabulary for a three-year-old, but she can't adequately explain how she feels healthwise, nor can she recognize & vocalize that she's experiencing symptoms of hypoglycemia (low sugars) or hyperglycemia (high sugars).  If she pitches a fit, I have to check her number before deciding how to respond.  From what I've read online, having high sugars makes you feel pretty miserable, & Reagan is currently running high almost every day.  Her number skyrockets between breakfast & lunch.  Her doctor is gradually increasing her insulin dosage, but we have yet to arrive at an amount that will prevent these high readings.  I am a few high readings away from having what I think would be termed a mental breakdown.  Bob Costas's funky eyes may not be the most interesting thing on the news soon.  Maybe that's why I'm so eager to again watch Silver Linings Playbook, a movie that celebrates crazy, featuring a man recently released from a mental facility who thinks he can woo his estranged wife by reading American novels, & a woman who is angry, bitter, & sarcastic.  Jennifer Lawrence is so fantastically angry, bitter, & sarcastic that she won an Oscar for her role in the film.  The movie is calling my name.

I've thought a lot about creation lately, specifically when God knitted Adam, & then Eve, together & they rose & walked around, thinking & breathing & creating the perfect amount insulin.  The human body is amazing, & it's unfathomable to me that someone with any knowledge of the intricacies of the human body could deny the existence of a powerful & mighty Creator.  He is in control, not me, & this is as true today as it was the day He created Adam & Eve, the day Reagan was born, & the day before Reagan was diagnosed.    

What I am currently doing (though not well), attempting to keep Reagan supplied with the right amount of insulin, is what happens in my body, & in everyone's body, constantly & perfectly, save those who are, like Reagan, diabetic.  It is likely that Reagan will be on an insulin pump in the future, which I am told offers considerably more control over blood sugars & likely will be better at being a faux pancreas than I am.  I am always in favor of anything that offers more control (unless of course it involves the federal government).  For now, my goal is to check Reagan's number mid-afternoon & be greeted by a three digit number that begins with a 1.  We are all totally cool with the shots, the finger pricking, etc.  I can handle all that, as can Reagan.  If we could just arrive at a ballpark figure of how much insulin to inject, well, then I would chill out.



As promised, here are the results of Henry's eight month photo shoot.  He hit the eight month mark on February 6.

Playing with the number 8:

Sporting his argyle socks I bought him before he was born:

He finally noticed me:

And then he noticed my phone.  The end.

Thank you for the kind words & messages from those of you reading the book.  I am enjoying rereading it & making changes here & there.  You've no idea how much I agonize over a word or phrase or sweater vest in certain places, but if I ever needed a fictional escape, it is now.  Lord willing, I'll post chapters seven & eight Friday.  A little Valentine bonus for you.  I may not be able to reign in Reagan's blood sugar numbers at the moment, but I am all-powerful when it comes to the Boulder residents who live in my mind.  I'm not going to actually say that aloud as Trey might begin to think I need more than just a few minutes alone with my MacBook.    

 

AZ

Highs & Lows

Well I'm still here.  And I mean that in every sense of the word here - physically, mentally, emotionally, & of course, here, blogging away.  I have not checked out . . . but there have been some close calls.  

We made a trip to Jackson last week to see a pediatric endocrinologist.  I told you that we'd be seeing a doctor in Shreveport, but that didn't pan out.  The official reference to a specialist has to come from your primary doctor, & when the office here contacted Shreveport for us, we were told there was a two year wait list.  I know.  The Shreveport folks told us to send over Reagan's medical records & they'd see what they could do.  We did send the records to Shreveport, but also pursued other options because, seriously, two years?  I am intelligent, but I can't manage my child's diabetes for two years while waiting to see a doctor.  I suspected they were just saying that until they got a look at Reagan's records to verify her diagnosis . . . or something, I don't know.  I mean are there people out there who attempt to see a pediatric endocrinologist for kicks?  I guess it's possible as I've learned from my few experiences with the ER that there are indeed a host of folks who jet to the ER when their nose runs.

Anyway, Jackson was our next option.  If you didn't know, one of my dad's many talents is defending doctors (or, more specifically, their insurance company) when they're sued.  In legal speak, it's called medmal.  So, he knows a few doctors & they think he's pretty neat since, sadly, many doctors currently pay six figures for their yearly insurance premiums.  Sometimes doctors deserve to be sued, but many times, they do not.  A doctor in Jackson who is himself diabetic recommended an endocrinologist to my dad.  Trey made some calls & we discovered that not only was she accepting new patients, she takes our insurance.  We were sold.

The day of the visit was long.  We were all four dressed & out the door before eight in the morning, & that right there screams Long. Day.  There were two specific instances that tie for most frustrating part of the day; I can't pick one because they both brought me equally close to screaming.  My blood pressure & I don't want to totally relive either incident via my typing it all out for you, so I'll summarize.  We could not find the doctor's office.  We assumed it was somewhere inside one of the many large buildings that comprise The University of Mississippi Medical Center.  We were wrong.  At one point in our quest to find her office, Trey & I were crossing a major road (there was a crosswalk), Trey carrying Reagan & Henry perched on my hip, & a couple stopped their car to ask us if we needed help.  We did eventually find the office, which is located in a random, one-story building near the large, multistoried buildings.  This is good news for the future as you can park right outside the office, as opposed to parking blocks away in a parking garage as we did on our initial visit.

Additional frustration came later, on the drive home, during several phone calls with our pharmacy.  Basically, Reagan is small & currently doesn't require much insulin.  Her new doctor wants us to deliver the insulin using an insulin pen, a neat device that measures insulin in half units, which Reagan sometimes requires.  It's much more precise than using a syringe, & it's probably best that we move to the pen because I've left a trail of improperly disposed syringes all over the twin cities.  Annnyway, the wonderful folks at Blue Cross who've had no issues taking hundreds of dollars from us each month for years now threw a red flag when the pharmacy attempted to fill the insulin prescription because the dosage prescribed will last Reagan longer than ninety days (because, again, she's small).  The insulin pens are filled with specific cartridges that, you got it, will last Reagan longer than ninety days.  I don't know, maybe there's a black market for insulin out there or something & Blue Cross is keeping an eye on it.  I won't keep you in suspense.  We have obtained the needed insulin pen cartridges & managed to maintain our relationship with the Blue Cross folks, though admittedly things are a bit strained.  I don't know what Trey did, &, I don't really care.  I assume it was all legal.  But again, whatever, we got the insulin; it's this year's oxygen.

The visit itself went well.  Thankfully, the most refreshing & reassuring part of the day involved meeting & speaking with Reagan's new doctor, as well as a few of her nurses & a nutritionist.  The plan now is to tweak Reagan's insulin intake & her diet until her glucose readings normalize somewhat.  It's not easy.  As with life, finding the middle ground sometimes seems impossible.  If you & those you love have a fully functional pancreas, say thanks in your prayers tonight; it's an often forgotten organ but it has an important job.  If I had to describe parenting a young child with Type 1 Diabetes in one sentence (as if I can describe anything in one sentence), it is this: waking your three-year-old at two in the morning & insisting she drink some coke because her number has dipped down into the 60s, & then denying her a banana later the same day because her numbers tend to soar in the afternoon.  If she didn't think we were nuts before, this ought to do it.

Here are a few pics of our day in Jackson.  I took this of Reagan on the drive over:

And this in the waiting room:

The rest are all Reagan's doing.  The day just didn't present many moments that felt like photo ops:

Several young mothers I know have asked me specific questions about Reagan's diagnosis - - what she looked like, what her eating habits were, etc.  I see the worry on their face.  I try to assure them that their young child(ren) most likely don't have undetected Type 1 Diabetes.  It isn't something that goes unnoticed indefinitely.  Once the body lacks proper insulin, changes begin occurring rapidly that you will notice.  Plus, if you are ever truly concerned, I can now check your child's glucose levels in about two seconds.  Just let me know.  Trey checks Reagan's number every morning around two, & she doesn't even wake up, so we can pull off a stealth glucose check if you're interested.

A few people have told me that I just have to write a book.  A book about parenting a diabetic child, that is, not a book about a graduate student who has the hots for her unavailable literature professor & a penchant for shoes she cannot afford . . . anyway, to you all I say, whoa now.  Give me ten or fifteen years.  If this journey on which our family has recently embarked is going to be translated into book form, we're still in the introduction.  So far, here's what I've written: Two weeks ago my three-year-old daughter was diagnosed with Type I Diabetes.  Her glucose levels are still wildly unpredictable, but my Type A personality and I are determined to bend them to our will.  I've waffled between crying & feeling determined, while Reagan's developed a love for expensive almonds dusted with dark cocoa that are only sold at Target & come in at 4 total carbs per bag.  There is a brand new outlet mall just north of her endocrinologist's office in Jackson because, as Paul assures us, ". . . we know that all things work together for good for those who love God . . ."  Stay tuned.

I don't think I've mentioned that I recently read The Book Thief by Markus Zusak.  It was the January book club selection & I finished it the night before Reagan was diagnosed because I was planning to meet with the book club ladies the following evening to discuss it.  Ah, plans.  It's an interesting read.  It's not one you're going to pick up & not be able to put down (it's sloooow, especially at first), but it is fascinating, both the content & the author's unique style of writing.  It is set in Nazi Germany, & it is narrated by Death.  Yes, it is narrated by Death.  I think maybe the Lord was preparing me for what He knew lay ahead concerning Reagan; after reading The Book Thief, you realize that whatever your problems are, your life is still pretty fabulous.

I mean, did you see him?  Did you?  How can life not be fabulous when JACK BAUER is making a comeback?!?

AZ