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The Gift of a Great Nurse

www.berlinschools.org-

www.berlinschools.org-

It’s funny what comes into your memory when in the midst of a stressful situation.  Tonight, while fighting another low for Carter, I flashed back to something said to me while in the hospital during Carter’s diagnosis.  It was day 3, and we had just been transferred downstairs to the peds unit from the PICU.  Carter had received 1 subcutaneous injection prior to eating lunch up in the PICU, and it was done by the nurse.  I was consumed with terror, knowing that at the next meal either me or Greg was going to have to administer the next shot.  We started training immediately, and the training is overwhelming at best, adding to the stress is the fact that what you retain from the training means life or death for your child.  I remember feverishly taking copious notes, and stressing so much about the material, the shots, the blood checking, carb counting, I felt I would never really have it all down.  Among the barrage of well-meaning desensitized nurses, flitting in and out of Carter’s room, all with their stories of how I would get to the point where Carter wouldn’t even wake up when I checked him, to continuing to point out the seriousness of this new regime.  I walked out of his room for some air after another try at measuring and practice administering saline on an orange.  One of the nurses I hadn’t spoken with yet, spoke to me as I stared out at the wall.  All she said to me was, “I had been a nurse for 20 years before my son was diagnosed with Type 1 Diabetes, even though I administered shots multiple times a day to strangers, it was different with my son.  I almost couldn’t even do it.”  The instant support and validation I felt was immense, I looked up and thanked her, I actually went and gave her a hug.  In that moment, someone talk to, and related to me as if I were human.  I know the staff in a hospital means well, a lot of them don’t realize how traumatic these situations are for the family that is going through them.  It was true, lately Carter doesn’t necessarily completely wake up when we check him through the night, in fact he hears us coming in his room and will throw his hand over the side of his bed to get it all over with.  But discretion might be the answer when it comes to relating to families new to this diagnosis.  That one nurse touched my life in such an immense way, and I still rely on her words for comfort when I am facing the difficult struggle that is hurting my son for his health.  I am grateful for the terrain we have mastered, but I am most grateful tonight especially, as we fix a BS reading of 56, that I was able to have a nurse who happened to be the caregiver and mother of a Type 1 Diabetic, and that she was able to give me the gift of validation.  After a juice box, an applesauce and broccoli squeezie, and some milk Carter was at 84 and raising.  There is nothing more comforting when in the midst of a storm to have someone embrace you, say I’m sorry, and be able to relate to you.

The Beautiful Feeling of Relief

Ashleigh 4.2014

Ashleigh 4.2014

Ashleigh walked into the kitchen this evening to give me a kiss, it was then that I smelled diabetic breath on her.  I grabbed the glucose tester and without warning pricked Ashleigh’s finger.  She wailed in a mix of anger and pain, I sucked her blood up onto the test strip and swallowed hard.  {BEEP}, I glanced down and before I knew it the mix of anger and pain stabbed me in the heart.  208.  Tears flew out of my eyes, Ashleigh looked at me, I struggled to gain composure.  She wiped the tears from her eyes and yelled: “I’m not sick, I don’t have Diabetes!” I got her some ice water and explained I didn’t think she did, I want to do everything in my power to keep her healthy.  I reminded her of the sweet breath Carter has sometimes and let her know I smelled that in her breath.  I told her we weren’t going to worry about it right now, and kissed her finger and sent her off to play with Carter.  Once she left the kitchen I immediately grabbed the phone to call Greg who was on an errand, with no answer, I called Carter’s Endocrinologist.  I had to call Carter’s latest blood sugar numbers in anyway.  Upon the endocrinologist call back, after working with her to adjust Carter’s insulin to carb ratio’s, I made mention of the issue with Ashleigh.  I let the endo know that my plan was to feed the kids dinner, wait 3 hours and see what Ashleigh’s reading was then.  If it were over 200 then I would take her to the doctor.  The endocrinologist concurred, stupidly I wished she would have told me I was overreacting, and that Ashleigh was fine and I didn’t have to worry.  I thanked her for her advice and let her know I would be in touch and keep them updated.  I hung up the phone and slid down the wall in defeat.  As I sat on the kitchen tile, tears streaming down my face, I searched desperately for the strength I knew I needed to have.  I called my Mom and quickly told her I needed her to pray for our current situation, she did and I hung up and gathered myself, wiped my tears, and moved on.    This, the all too familiar modus operandi I function in these days.  Greg came home and we chatted about the new discovery while he was out that could again completely alter our world.  In an effort to find the positive, we realized that should things go down that road, we know what to do, what to expect.  In the next moment we realized the trauma that was associated with having to do this with a 4-year-old.  We watched the kids eat dinner, (Greg and I had lost our appetites) we laughed, and bathed the kids.  Two-and-a-half hours later I decided it was time to check both kids blood sugars now.   Greg fetched Ashleigh who, when she realized what was happening put up a fight.  I encouraged her to be brave and she reluctantly stuck her finger out to be tested.  I pushed the button and counted down, with one eye closed I read the result *89!  I could have fainted!  The complete relief I felt is difficult to explain.  I embraced my daughter and explained what had happened this afternoon, I explained that as her mommy and daddy we need to always make sure that she and her brother are healthy.  That it is up to he and I to manage their health, sometimes that means pokes, or shots, but ultimately it means health in the long run.  I emphasized that for the next couple of days we were going to monitor her to make sure she was OK and the reading I received of 208 was a fluke.  Greg explained that for the next day or so we would be checking her blood a few times a day to make sure she is OK.  She was a little nervous about that, until I asked her if she wanted to check my blood.  She perked up, and said “yes!”  I let her poke me, and retrieve my blood and that seemed to soothe her.  I told her that anytime she needs to check her blood I will too and she was OK with that.  The relief I had longed for when we went through this with Carter was delivered to me today.  My world stopped for the second time when I thought Ashleigh might have to manage Type 1 Diabetes as well.  All-in-all, the teaching moments we had tonight were unequivocally educating.  Ashleigh is more aware now of what Carter manages through multiple times a day, as well as the reality that our health is a forever managing necessity.  The relief I felt is still there at the surface, after good testing results tomorrow, I will allow the relief to completely sink into my soul as we move on past this trial and cherish Ashleigh’s health in ways we didn’t know were possible.

A1C Success Among Adversity

happyhealthyhouse.com

happyhealthyhouse.com

We had a small victory today, we found out that Carter’s A1C is 8.3, and are able to celebrate A1C success among the adversity we have been dealing with lately.  The goal for Carter is to be anywhere under 8.0, we are almost there, and for the first time in almost 5 months I finally feel like I can breathe.  Carter’s A1C was 10.8 when he was diagnosed in November 2013, and 9.3 in January.  Hearing this news today allowed me to feel a sense of accomplishment and have a small victory.  Carter is growing perfectly and overall is being managed well and even though days go by and I feel like the efforts I am putting in are futile, today it was proven that it is not.  I was so pleased to see his exceptional growth, weight gain, and A1C results.  It feels like I passed the most important final I have ever taken.  Driving to the appointment today, Greg and I were talking about how we are stuck in the memories from our first trip to Rady’s when we were terrified the whole 2 hour drive, arriving behind our air lifted 17-month-old son.  Walking into the clinic today, I smelled the hand sanitizer they use and it placed me right back into the Intensive Care Unit.  But today we watched our son laughing and playing in the exam room, and get through his A1C blood check like the brave boy he is.  There have been so many hard days in these past 4.5 months, but today was a welcome change, happiness and relief we have been longing for.  Greg and I remembered our first thought back in November when we were desperately trying to wrap our heads around the news we had just received.  I remember praying the Halloween candy he ate a few weeks prior had thrown his numbers out of whack.  In my naiveté, I was desperate to protect my heart from the devastating truth.  I grasped at so many scenarios the week of his diagnosis, not quite ready to accept that my son had Type 1 Diabetes.  Looking at how far we have come, how much we have learned and what we have gained in these past 4.5 months, when leaving the clinic I took an extra deep breath in an effort to change the memory associated with the hand sanitizer.  We left Rady’s Children’s Hospital today laughing, a first!  The hope is that with each trip to the clinic, we are able to shift our memories to positive ones.  I loved the reassurance we received today, and knowing that my son is, and has been, successfully on the mend.  Tonight I will happily sit in the positivity of today, and I will revisit the news from today when I feel frustrated with the next trials that diabetes hurls our way.  We are overcomers, fighters, and exceptionally grateful tonight.

How To Know The Signs Of Diabetes

Carter's first night in the PICU - November 20, 2013

Carter’s first night in the PICU – November 20, 2013

Playing with my kids this afternoon, I was thrown back down memory lane.  More like nightmare lane, Carter lost his balance and wobbled and it took me back to some of the signs I was missing in the 4 days right before his diagnosis, when I presume he was in the huge downward spiral.  Knowing what I know now, I would have been able to stop DKA in the first day with the signs that Carter was displaying.  Being a seasoned mother with a 4-year-old already, I figured what Carter was going through was teething mixed with a virus. I remember the panic, the day I finally took him to Urgent Care when I’d placed him down for the 4th time that day to try to nap.  He’d sucked down his 5th bottle of milk, and didn’t want to let me go.  I was so frustrated, and given that my daughter (my oldest) has never been a good sleeper and pretty stubborn I figured the genetic disposition was now present in my son.  I remember out of pure frustration placing him in his bed, after he stumbled toward me.  I though he was just tired and needed sleep.  I’d been up with him the whole night before and at this point both he and I were going on hour 30 of zero sleep.  I was a zombie, with him fighting a virus (I thought) and my daughter needing me too I felt like I was drowning.  Once I got him in bed, I left his room and as I was half way down the stairs I heard a sound that caused me to turn and take the stairs 3 at a time.  I got to his room and he was laying on his back vomiting.  He was so weak he couldn’t sit up.  I rushed to him, turned him on his side and cleared his airway.  Sobbing I placed him in a bath to try to make him feel better, it was then that I noticed how gaunt he was.  Things started to click, I realized he was drinking more and wetting more diapers.  When the Urgent Care wrongfully diagnosed Carter with just a virus, not knowing much about Diabetes I believed her.  I also, deep down wanted it to be just a virus so badly and remember the relief I felt when hearing that’s all it was.  Two more days passed and he wasn’t getting better, per the instructions from Urgent Care, I had pumped my diabetic son full of sugary Gatorade.  The diagnosis goes on from there, so the signs to look for are, extreme thirst, frequent urination, being klutzy, walking like they are drunk, sunken in dehydrated look, incredibly whiny, weight loss, lethargy, increased hunger, sweet-smelling breath (which is very hard to notice when pumping your child with Gatorade).  Other signs involve feet that are tingly, or vision changes, but with a child who is so young that they aren’t talking yet, those clues are never known.  Carter was 17 months when he was diagnosed.  There is no way to know for sure, but had I known these signs I would have demanded a glucose test been done at Urgent Care that day.  The guilt for having my son suffer for 5 days until I finally took him to the emergency room eats away at me daily.  I know there is nothing I did or didn’t do that gave him Type 1, but I feel as though I failed in my job of anticipating his needs.  When he stumbled around today I unfortunately remembered the whole scenario back from November 2013 play-by-play.  I desperately, in that moment wanted to never remember those details.  Yet now here I sit, my son has gained 3 pounds and is healthy and perfect.  Without remembering those really dark times, I wouldn’t have the joy of seeing how far we have come.  I encourage anyone who is wondering about their child, ask your doctor to check their blood sugar.  I can say today, with great conviction, that Carter will never experience DKA to that degree again, I will make sure of it.  Everyday we strive for perfection, with a disease that doesn’t allow it.  Somehow, where we are today, is even more sweet (no pun intended) because of the fight.  To say that I am inspired by my children is the biggest understatement I could make, I am grateful, astonished, and so proud that we have come out of this so successfully in only 4 months.  I imagine that even with the ups and downs that diabetes promises, I can guarantee that my family will only grow stronger, fight harder, and seek happiness more adamantly than ever before.

A Slow Road to Acceptance

Carter 4.2014

Carter 4.2014

Just when I thought I couldn’t get more exhausted, exhaustion laughed in my face and kicked it up a notch.  I actually felt like I was sleep walking today, which was especially amazing as I was driving home.  We decided to take the kids on a walk after dinner today to get them out of the house.  It was such a nice night, we watched the kids running around and playing by the lake, and enjoying the breezy evening.  I have been hearing more and more of people getting diagnosed with Type 1, and it makes my heart-break for them.  It reminds me of our diagnosis, and the struggle that we have endured.  Yet when I look at us today I am so grateful for the strides we have made, though we are still learning, I feel I have a better handle on all things diabetes.  My heart aches for the families that are struggling to find their way, feeling lost in the dark tunnel that is a Type 1 Diagnosis.  I want to encourage any new family who is in the midst of the storm, things get easier.  I remember when people told me that right after Carter’s diagnosis and thinking there is no way!  But honestly, the fear subsides relatively quickly and the strength we have as parents pushes to the forefront.  The thoughts I always felt, that I would lay down my life for my children, become that much more true and a reality, when there is a Type 1 diagnosis to contend with.  It’s been a slow road to acceptance, and when I think I’ve mastered a scenario, it changes.  I will most likely never have a full nights sleep again, but for my sons survival I would sit awake every night, all night long to watch his chest raise and fall.  I admit there are many days still where accepting that this is now my life is a struggle, but remembering that with proper managing, my son will live and flourish in spite of.  I looked at my son tonight on our walk, he is so healthy and so strong, and knowing I helped him accomplish that gives me an indescribable feeling of fulfillment.  I remember the terror, and feeling as though I would never grasp a way to manage this successfully.  It only took 1 month for me to be fully confident, now I can go to a restaurant and figure out the proper insulin to carb ratio based on the menu.  Today with our extended hours of family time I felt overjoyed watching my son and daughter run and chase each other and remembering how far we have come.  So though this has been a slow road to acceptance, and it’s been riddled with uncertainty and feelings of continual failure, there are the days when I can sit joyfully in the midst of my accomplishments.  To hear my sons laughter, is more rewarding than a full nights sleep.  To watch my daughter protect him and keep him healthy is incredible, it’s true that a group under duress bonds together.  I am grateful for our new strength and our new love and our journey.  I encourage a family that is newly diagnosed to reach out, find support, vent, cry, scream, but at the end of all that pick yourself up and revel in your strength and perseverance.  Embrace your newfound courage, determination, and fearlessness, for you will dig deeper then you ever have, and astound yourself with your capacity to mend and push survival.  As the parent of a Type 1 Diabetic, you will discover the persistence that it takes to keep diabetes in check and at bay, in order for your child to live the life they were meant to live.

Walking for a Cure

JDRF Walk - 4.514

JDRF Walk – 4.514

It was an amazing day, we joined JDRF, San Diego in walking for a cure for Diabetes.  I loved the event, as did Carter and Ashleigh.  The kids were able to jump in a bounce house, and color, do arts and crafts, and Greg and I were able to talk with other diabetic parents.  JDRF put such a wonderful walk together, and it was wonderful to be able to meet more parents that have been a part of the support system I have come to rely on.  Today was such a welcome distraction from the crazy blood sugars Carter has ben having lately, not to mention the doctors appointments we have been inundated with this past week.  I felt I could finally breath, being around like-minded people who understand where I am mentally, physically, and emotionally.  I can honestly say that the friends I have made within the Diabetic Community are friends for life.  To be able to lay your heart out and have someone know the exact emotions you are going through is a treasure.  In speaking with another parent of a T1, I find I finally have the ability to let my guard down, and just be.  No explanations, no façade, just to be able to have someone listen to you and say “I know what you are going through!”, makes all the difference.  I am continually validated and supported, it’s a wonderful feeling.  Carter was beside himself with excitement at the opportunity to be running next to the diabetic alert dogs, and Ashleigh was ecstatic to be around the other kids and her aunts and uncles and other family that so selflessly came out to support Carter and all the other Type 1 Diabetics who were walking for their own strides toward a cure.  It’s so wonderful to be able to get together and feel like one huge extended family with the other T1D’s in our area.  I am so fortunate to have found the online community, and would encourage anyone who is dealing with a new diagnosis to reach out, the interaction I have with the DOC (diabetic online community) is a lifesaver, and I receive the best advice from people who have been managing either their own T1 for over 20+ years, or parents who have successfully managed their child’s T1D and are a wealth of information.  Today, as we crossed over the starting line, the MC walked up to us and gave Carter a high-five and announced him and his plight over the microphone.  It’s in those moments that I realize the enormity that my son manages everyday, and I wonder when it will cease to affect me so deeply.  As I got my emotions in check, and watched my little boy run freely I felt some of the holes in my heart mend as I was able to interact with some of the other T1D parents, and watch Ashleigh running with her brother through the finish line and beam with pride at her accomplishment.  Today was a wonderful day, surrounded by family and friends who support me and my immediate family in ways they could never understand.  I am so proud and blessed to have been a part of the JDRF – Type 1 Diabetes Walk for a Cure today, and look forward to the new ways we can get involved to help us all get one step closer to a cure that we all so desperately need.

For more information on JDRF, and how you can assist in finding a cure, visit http://jdrf.org/

FDA – Voices be Heard!

en.wikipedia.org

en.wikipedia.org

Today I was lucky enough to be at the right place at the right time.  I was able to connect and be a part of the FDA Patient Network Live chat.  The chat today was discussing the accuracy of and basic issues that surround the blood glucose monitors, as well as the continuous glucose monitoring systems (CGM’s).  Personally, I have found it very frustrating trying to get enough blood out of Carter’s fingers in order to get a reading through his OneTouch blood glucose monitor.  I feel as though the one-size-fits-all approach made by insurance companies isn’t the right approach.  I find it interesting that we forget we actually have voices when it comes to our care.  I found it very informative, and was encouraged that we get involved and put our comments on the FDA website in order to advocate change.  Being only 4 months in, I find that I have been trying to survive day-to-day operations.  It was a nice reminder that we can contact the FDA in the hopes that we will be heard and some significant changes as it pertains to diabetes care will be made.   I’ve had a successful love/hate relationship with the blood glucose monitoring systems since Carter’s diagnosis.  I know that we are way more advanced these days then say in the 1970′s, however, how can the accuracy rate still be about the same in 2014 as it was in the 1990′s?  One would think that since the blood glucose monitoring system works in conjunction with the insulin in saving lives, that more work would be done to allow a better margin of accuracy.  I am hopeful that with the diabetic community banding together as one to speak up for the changes we need to see in order to manage this disease better, some changes will be made.  Especially for the newly diagnosed babies, raising children is hard enough, then throw diabetes into the mix and overwhelming hits a new high.  I encourage anyone and everyone to go to the links below and comment about changes you would like to see made, and suggest other ways that managing diabetes could be made easier, the FDA has extended the time frame for comments to May 7, 2014.  Lets use our voices to more effectively combat diabetes!

http://www.patientnetwork.fda.gov/

http://www.stripsafely.com/sample-page/guidance/

All things frustrating and encouraging about Type 1 Diabetes