Changed

I am changed.  Not that this is a huge revelation.  We are all changing every day.  But, this was a big change.

I had gotten used to being the mom of a type 1 child.  I don't like it.  But, we have found a new normal.  We have found a home in Children With Diabetes.  It is still a constant, daily, exhausting struggle.  But it is a struggle that is now normal.

Finding out that Courtney needed brain and spinal surgery was hands down the most stressful thing I have ever been through.  And, that includes medical school, residency, and some pretty tough situations.

With all of those other situations, including Jess getting diagnosed I felt I was in control.  It may not have been an accurate perception all of the time, but it was at least a nice delusion.  There was no way I could delude myself that I was in control of any part of Courtney's situation.  And, things just seemed to spiral out of control.  The week of her surgery she had a big hematology work-up for a possible bleeding disorder, the kitchen sink flooded, the car was in a minor accident...  It was just one of those weeks where absolutely everything felt like it was spinning out of control.

Saying goodbye to her in the OR...watching her drift to sleep and lose all tone...that had to be one of the hardest moments of my life.  Not knowing how things would go.  Not knowing what she would be like.  Was the Courtney I know going to be the Courtney after this surgery?  I've unfortunately seen way too many complications and bad outcomes.  They prepared us that she might still be intubated when we saw her initially in the intensive care unit after surgery.  In my mind I had gone to worst case scenarios.  She bleeds to death.  She's paralyzed.  She suffers brain damage.  Sure, I could tell myself that these were very unlikely.  We had carefully researched and went to the best pediatric neurosurgeon...we had done the little that we had control over.  But, I could not stop the thoughts from coming in the middle of the night.  For the first time since Jess was diagnosed, type 1 diabetes fleetingly did not seem so bad.  Friends and family carried me through.

Seeing Courtney in the intensive care unit, I felt the biggest relief I have ever experienced.  Weeks of constant chest pressure evaporated.  She was awake.  Smiling.  Talking.  She was connected to many IVs, foley catheter, heart monitors, pulse ox, and so many things that looked foreign on her small body. But, the moment she talked to me I knew she was herself.

The hospitalization was surreal.  The night in the intensive care unit was the hardest.  I was in a fog where every two hours Courtney was examined and poked.  At one point they told me they were ruling out diabetes insipidus.  Diabetes.  The word that haunts us whenever we think of Courtney...the child not yet affected.  Diabetes insipidus is not at all the same thing as type 1, and thankfully she did not have it.

Sometime the next day we were moved to a regular pediatric floor.  I continued in a surreal state.  Nights interrupted by children screaming during procedures, a worried father walking the halls, my own daughter on a PCA (patient controlled pain medicine IV), her eyes glazed over from the narcotics and valium.  Sleepless nights with frequent vital signs and neurologic checks.  And yet, it also felt like a break.  Even as I write that I realize how pitiful that sounds.  I had one job in the hospital: to be Courtney's mom.  I did not have to check blood sugars, measure carbs, pack lunches, see patients, do all the housework.  I just had to be Courtney's mom.  And, every time I looked at her I was just so thankful beyond belief that she was alive and breathing.  It was a simple, surreal existence.  I remember thinking so many times that I could breathe again.  That constant chest pressure was gone.  I could finally see beyond the surgery.  Courtney was going to be okay.

As with Jessica and so many of my pediatric patients, I was overwhelmed with how children handle things so much better than adults.  Never did Courtney panic.  I never saw her cry in pain.  She would simply push the button for more narcotics.  She handled things better than I did, and better than I would have by far had I been the one having the surgery.  Children simply amaze me.

And, now we are home.  She is still recovering, not yet back at school.  It will be awhile before she can run and play again.  Things must heal.  But, her Chiari is cured.

I wonder how this makes Jessica feel.  I know I have thought about it.  As absolutely acutely horrific as this entire experience was, Courtney is cured.  Jess continues her battle, her cure still elusive and unsure.

Our daily life with diabetes in back.  Relentless, exhausting, but yet our normal.

And, I am thankful.  I missed normal.  I missed my delusion of control.

I look at Courtney and Jess differently.  As with all parents, I always imagine I could not love them more.  And, yet especially after this it has exponentially grown.

And, I am changed.  My perspective has changed.  I have learned twice now not to take my children's health for granted.  I hug them tighter.  I listen closer.  I am thankful for this forced time with them, without the distractions of a stressful job.

Both my children carry visible reminders that they are warriors.  Jess with her calloused fingers, and pump.  Courtney with her incision that will become a scar.

They, too, are changed.

The Gray Zone

So, here's the thing about Type 1 diabetes.  It may be a 24/7 emotionally hard, exhausting, unrelenting disease filled with painful site and dexcom changes, but to my scientific brain it is clear what to do.  We have a big study that demonstrated the lower the HgbA1c, the less likely certain complications are.  That's not to say that the body always follows those rules.  Certainly many people invest all their energies towards good blood sugar control and still end up with unfair complications.  But, I don't know that many would argue that blood sugar control is important and will likely lead to improved health.

So, when Jess was diagnosed it may have shattered my world, but at least I knew what I had to do.

This thing with Courtney is all about the gray zone.  And, I am so NOT ok with that.  I like data and proof and evidence.  And, there is none.  Two surgeons THINK she needs the surgery, but they don't have any data to back that up.  Unfortunately, the potential outcome of not having the surgery COULD be permanent numbness, weakness, or worse.  But, they don't KNOW.

Now her blood tests show her blood is just a bit too thin.  It COULD be nothing.  But, once again we just don't know.  It COULD also be a genetic condition that might increase her risk of bleeding.  And, even if it is a genetic condition and we identify it, it is unclear how to treat it.  We COULD give her a medical product that would decrease her risk of bleeding, but it also COULD cause her to form abnormal blood clots, which especially in the brain aren't a particular good thing.  And, we just don't know.

If she had prior surgery and had done well then we'd know if this abnormal lab value is anything to worry about.  But, of course my child decides her first surgery will be brain surgery rather than a tonsillectomy (violin playing.)

So, here we are in the gray zone.  At the end of the day, I just have to try to have faith that things will work out.  But, the problem is that so far my children seem to not do well with the statistic game.  And, I've seen far to many bad things happen in my career.

So, I am struggling.  I don't like living in the gray zone.

But, I don't have a choice.

The Universe Does Not Care

Spoiler....this is not a happy, uplifting, optimistic post.  Having said that, I haven't blogged in awhile as I wouldn't have been able to write anything more than a series of curse words.

I know I am lucky in so many ways.  I have the most wonderful husband, daughters, parents, and friends I could imagine.

And, I need to remember that because I have not felt very fortunate lately.  I know there are many, many people less fortunate and I am so thankful for what I do have.

But, lately life events have been a reminder that there is no "pass on the bad luck card."  We already have two family members with chronic diseases.  Isn't a husband and daughter with Type 1 enough?  It already takes so much of our time, energy, emotional health.  So many families (and I am truly happy for them) seem to have healthy children.  So surely, because one of my daughters already has Type 1, we should be able to pass on the bad luck card, right?

The universe does not care.

Courtney is supposed to be my healthy daughter.  The one I don't have to worry about every second of my life.

Life does not work this way.  I know it from my patients.  And, I know it from other families.

But, it is still devastating.

Courtney was likely born with an abnormality in which part of her brain is too big for her skull.  It is pushing down on her spinal cord and blocking the flow of her spinal fluid.  It is creating a cavity in her spine, which if left could result in paralysis some day.  It is creating scoliosis for which she has been such a trooper wearing a brace.

She needs brain and spine surgery.  They are going to remover part of her skull (forever), part of her brain (forever) and her first vertebrae (forever.)  They assure me she doesn't need these things.  But, there are no good studies and they can't tell me for sure what would happen if we weren't to do the surgery.  But, we have seen two surgeons and they both recommend the surgery.  According to one of them "the complications are rare but devastating."  She is totally, completely healthy and with no symptoms right now except for her scoliosis.  It kills me to watch her run and play and know that very soon we will be subjecting her to a big operation where she will be in the intensive care unit and have a long hospital stay.  She will be in pain and scared.  And, she is supposed to be my healthy child.

Not to minimize these things, but why can't we have a child who needs tubes in her ears, or her tonsils out?  Why can't we have the normal scrapes and bruises of childhood?

Why, why, why do both my children now have a BIG, serious, SCARY health condition????

The universe does not care.

And, this may not be it either.  There is no pass on the bad luck card.  There may be even bigger and scarier things ahead.  And, that is a terrifying thing to realize.  Having two children with these terrifying, horrible things does not guarantee they will not get something else.

So many feelings from Jessica's diagnosis reemerge.  Will I be able to do this?  Will I be what she needs?  How will this affect her?  The anguish, the fear, the defeat.  God, can I do this again?

And, a whole different layer.  Who will care for Jess?  Where is the best place for her?  She has never been separated by her twin yet cannot visit her in the hospital due to age restrictions.  How will this effect her?  And, for the first time since her diagnosis the focus on health is not on her.  She clearly has felt the shift.  Unintentionally, she is clearly trying to adapt to this.

I wish I could just say "pass."  Sorry, we already have our hands full dealing with two of our family members having Type 1.  Nope- we can't do this too.  But, the universe does not care.

Luckily family and friends do.  As we took awhile to learn with diabetes, it takes a village.  We could not handle diabetes well without our Children With Diabetes family.  I don't think we could make it through this without our friends and family.  We are not fun to be around.  We are an unpleasant reminder that bad things can happen to everyone's children.  And, there is no limit to these bad things.  Yet, a handful of friends has come forth and stood by us.  While we have been disappointed in some, we have been amazed by others.  Our parents have been a steady source of support.

And, so I am reminded of the powerful words "I can do this."  Once again, I can do this because I have to.  I don't have a choice.  My family doesn't have a choice.

So, we will do this.

Spare a rose, Save a child

When Jessica was diagnosed with Type 1 diabetes at age 7 my world shattered.  But, because we live in the USA she is now thriving and healthy.  Other parents are not so lucky.  In other parts of the world, little girls just like Jessica do not go on to become healthy, happy 10 year olds.  They die.  And, this is not ok.  Luckily, there are organizations that are trying to help.  This Valentine's Day support Life For A Child.  Spare a rose and save a child.

Just $1 a day provides a child with:

• regular insulin
• quality blood glucose monitoring equipment (meter, strips, lancets)
• essential clinical care
• up-to-date diabetes education materials
• specialised diabetes training for medical staff 

“The scope of what needs to be done is vast.  Diabetes management is complex. While the first step is getting access to insulin, it needs to be followed up with education on managing diabetes, extending sustained care and also improving the quality of care. This takes both time and ongoing resources, so donations such as yours are crucial to the success and longevity of the Life for a Child Programme. Thank you for your contribution.”

Dr Graham Ogle, LFAC General Manager.

Join myself and other bloggers from the Type 1 diabetes world in getting the word out.  This Valentine's Day be a hero.  Spare just one rose, and instead donate a dollar to save a child.

Thank you.

http://bit.ly/SpareRoseSaveChild

http://diabetesadvocates.org/c/spare-a-rose-save-a-child/

It Takes A Village

I don't know how patients do it alone.  I truly think I had Caregiver Burnout last month.  And, I think Jessica had Diabetes Burnout.  We were both just so sick of every check, and dealing with every high and low.  Math tests that had to be taken during recess due to high blood sugars.  Site changes, Dexcom changes, Dexcom alarms, the food scale, guessing at carbs, packing all the ridiculous diabetes baggage for a trip, security fiascos, and the list goes on and on.  I was feeling unusually down, and I think Jess was too.

And then something wonderful happened.  It was time for the Children With Diabetes Focus on Technology conference.  Home.  Friends.  No explanations necessary.  No food scale necessary.  Inspirational people.  And, phenomenally inspirational talks by Sebastien Sasseville and Ed Damiano.

I came back from the weekend refreshed, full of new energy and ideas.  And, Jessica came back happier and less angry.  It truly takes a village.

And, this week when the sneaky "I hate diabetes" moments have snuck into our lives, I have instead thanked diabetes.  I can't believe the wonderful people I have met because of diabetes.  Our circle has expanded in huge ways that never would have occurred had Jess not been diagnosed.  I have watched my T1 hubby become hopeful again, happier, less alone.  I don't think we ever would have attended a CHILDREN with diabetes conference had Jess not been diagnosed.  But, it turns out that Children With Diabetes is the perfect circle of support for ADULTS with diabetes.  We have met so many absolute heros who have been living with Type 1 for 20, 30 years and more.  They are inspirational.  They provide support to our whole family.  They give me perspective.  They lighten my load.  They share a kinship with my T1 hubby.

So many "wow" moments, so many inspirational moments.  Below are just a few of the tweets from the conference:

"Avoid miscarried helping."

"No one is truly independent.  The hallmark of being an adult is knowing when you need help and asking for it."

"Great response to teenagers: how'd that work for you?"

"Teasing or bullying hurts our (parents') hearts more when it is about diabetes."

"Ask your child how they would like you to ask them what their blood sugar is."

"Give your child the gift of struggle."

"Fair is something you buy tickets to.  The rest is called life."

"Preschoolers may think they did something to cause diabetes."

"My daughter is not a mouse.  If she was she would have been cured 300 times by now."

"Pre-bolus and check one more time a day."

"The person with diabetes who knows the most lives the longest."

"We need to change to a prevention minded society."

"You can set the bar, but it's important to know that bar moves."

"It's ok if diabetes slows you down, but don't let it stop you."

And, perhaps the best quote to end with (from Sebastian Sasseville): "Do not regret having diabetes.  Greatness always come in the face of obstacles."

This is a ridiculously hard walk, but you don't have to walk it alone.  It takes a village to raise a Type 1 child.  And, it takes a village to be an adult with Type 1.  Thankfully, that village exists...in the form of a wonderful organization called Children With Diabetes.

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.