Taking the Bird's Eye View

I've been reminded of an important lesson this month.  Take the Bird's Eye View.

After a long period of absolutely amazing blood sugars, this past month brought numbers more out of control than I have ever seen.  None of our tricks worked.  We increased her insulin by insane amounts and still she remained high.  I experienced frustration unlike any I have known, and a sense of helplessness for the first time since her diagnosis.  I finally called her amazing health care provider, who of course was...you guessed it....amazing.  Her first question was "what's going on over there?"  She, too, was surprised by how much Jess's insulin requirement had jumped.  Her theory was a combination of growth and that the honeymoon was definitely over (the period of time when Jess still makes some insulin on her own, before complete pancreatic death).  I had actually thought that this had happened awhile ago, but based on all the equations of insulin needs, etc it seems to have now happened.  Luckily, I already mourned this so there was actually zero emotional impact of her stating it.  And, I was so incredibly relieved to have someone else help out.  My confidence was shot, I was emotionally and physically drained, and I needed help.  Not something at all easy for me to ask for, but I am getting better at it as life goes on.

Jess's healthcare provider made suggestions, and was available all weekend to help (she is truly hands down the best).  Things are still not what they were a couple of months ago (and she's been sick this week which of course does not help!), but they are leveling out some.

But, all of the above is really just boring background.  I realized this past month that I forgot a very important lesson.  Even though diabetes requires so much of our time and energy, especially when it is completely out of control, we can not let it become our sole focus.  I spent too much of this past month frustrated and upset.  There were too many times I forgot to look past all the high numbers on the meter and see the beautiful little girl in front of me.  I worried too much about the high sugars coating her vessels, and forgot to focus on the here and now.  The tragic, absolutely devastating events of last week in Connecticut are a deeply painful reminder that none of us truly knows how long we have.  And, although blood sugar control is important both to prevent short and long term complications, it is perhaps just as important to also focus on the here and now.

I realized this one night while sitting in amazing front row seats at the symphony.  Jess is an avid piano player and had the perfect view of the guest pianist's hands.  The absolute joy on her face throughout the evening was palpable.  Her blood sugar was cruising along in the 300's and yet she clearly was experiencing true and pure joy.  I couldn't help but sit with a crazy grin on my face the entire performance.

Although so easy to forget so much of the time, diabetes is but one facet of my beautiful, amazing daughter.  And, when it decides to revolt and cause deep turmoil, I need to remember to take the Bird's Eye View.  These high numbers will pass, but so will time.  And, I will never get that time back.  Jess will never again be 10 years and 4 months old.

So, perhaps what I have learned this past month is that there are many sneaky ways diabetes can win.  We very carefully don't let it stop Jess from doing anything.  We make sure she is as unaffected as possible by these rough times.  But, she and we need more than that.  We need to remember to focus on the great big wonderful enormity of Jessica, even when part of her decides to create havoc.

Pictures Say It All

This has not been a good week.  Understatement of the year.  Here's the kicker about diabetes.  Just when you think you've got it down---an awesome HgbA1c, knowing the in's and out's of I:C ratios, basal rates, a pro at carb counting...out of nowhere diabetes sneaks up on you and beats you down.  Apparently this time in the form of a pre-adolescent girl entering a major growth spurt.  Her little body is spitting out all kinds of hormones making her insulin needs shoot way up.  And, I mean WAY up.  Despite bolusing her every two hours throughout the night and raising her basal rates faster than I ever have, I have been unable to beat these highs.  Strangely, only at night.  Her daytime numbers have been pristine.  But, these hours are likely when she is spitting out the most growth hormone.  I am exhausted, frustrated, and to be honest a bit scared.  But, tonight I entered the night hopeful.  I received some much needed advice from another T1 mom who has a child that has already been through this.  She recommended a temp basal of +20-30%.  Armed with new tools, I went to bed hopeful.  An hour later I woke to check Jess and was greeted by the lovely 373 (and slant arrow up on the Dex to add insult to injury.)  Sure enough, ketones.  And, the pulled site revealed the dreaded kink.  I wonder if I am the only parent who feels massive amounts of guilt when it is the site that I have placed that kinks.  So, now I will wait for the ketones to clear and her numbers to come down and see what the night will hold.  Just like any mom, I will watch over my sweet girl.  And, I will take comfort in one of my favorite quotes: "Life isn't about waiting for the storm to pass.  It's about learning to dance in the rain."  No matter what kind of blood sugars this night brings, tomorrow is another day, and another chance to dance in the rain.

Blood sugars in the steady 200-300's despite waking every 2 hours to check and bolus, and adjust basal rates.

An exhausted Jessica even though she was able to sleep through most of the checks.  Constant highs don't feel good.  Note the "I Can Do It" bracelet.

Tonight, a kinked site.  Site changes at 10 pm- no fun for Jess, or for mom who needs to stay up to make sure the ketones clear.

Nope- that site is not supposed to be shaped like an upside down "U."   And, despite the fact that I know these things happen, the mommy guilt is there as I am the one that put in this sit tonight.

Work

Diabetes is winning this week.  It is hammering me.

This week has been yet another good reminder to me that patients can try their hardest, give 200%, and still not achieve the outcomes that physicians have been trained to desire.

On the surface, Jessica has had a "horrible" diabetes week.  She's been in the 200s more than she hasn't.  And, yet, I have had no sleep.  I have worked my ass off trying to get her numbers under control.  She has undergone extra site changes as I have had to rule out failed sites as a cause of these high numbers.  In short, we have put forth extreme effort and have absolutely nothing to show for it.

Patients often drop off logs for physicians to review.  It is so much about numbers.  HgbA1c, LDL, blood pressure, weight.  Yet, physicians can forget what is going on behind these numbers.  Checking blood sugars is work.  Trying to eat correctly is work.  Exercise is work.  Staying up all night multiple nights to try to achieve control is work.  Even "just" remembering to take a pill every night is work.  A patient can work incredibly hard, but a logbook filled with 200s will not reflect this.  Is there any acknowledgement of this work?

Perhaps the patient who seems to have "given up" is just sick of expending so much work and getting so little positive feedback, or seeing no reward of their effort.

Tonight I was tempted just to sleep.  I have had a ridiculously hard week at work, the husband is once again working nights on inpatient, and despite staying up all night I have not been able to get Jess's numbers out of the 200s.  It would be so easy to give up.  After all, living in the 200s won't hurt her much in the short term.  It is so easy to see how this mentality can win.  And, I have knowledge, drive, resources, support.  What about the patient alone, or who can't afford the strips for repeated checks?

We're losing at this number game this week.  It is not due to any lack of work.  In fact I am so completely exhausted and frustrated that I am near tears.  I secretly want to give up for a short while.  I am close to diabetes burnout this week.  We "should" be able to control this.  The basal rates and ISFs "should" follow the rules.  But, she's growing and so they are not.  Human bodies are not perfect little experiments where all factors can be controlled.  I am doing my absolute best, but her body seems to randomly be spitting out growth hormone or cortisol, or some other unmeasurable substance that shoots her blood sugars up.  And, despite rage bolusing, multiple changes to her basal rates, and complete exhaustion on my behalf I am not any closer to achieving blood sugar control then I was three nights ago.

Yet again a good lesson in humility for me.  Patients can work so hard behind the scenes.  It needs to be acknowledged.  Even if HgbA1cs and LDLs, blood pressures, and weights are not "at goal," it does not mean there has not been work.