Stormy joy

We had a little storm here in Oregon a week or two ago. It was supposedly going to be the Big Wind Storm of 2016. Not quite as intense as they thought but super fun to watch out our front Hobbit door. I think one of the biggest struggles here in this new diabetic life is how to continue to enjoy the small things. Every second of the day my mind is filled with how to keep Ocean in the best health possible. As I think about that I'm also thinking about his future. Because of course any damage that may be done here as a toddler will greatly affect him as an adult. Consistent high blood sugars cause damage to the organs and resistance to insulin and obviously create a difficult time of being healthy with T1D as an adult. So each day I wake up and immediately worry about his ketone levels, his BG levels. Hopefully his BG has been in range during the night, but that only seems to happen about 50% of the time at this point 7 months post diagnosis. I'm sure that will get better but he is so sensitive to carbs and insulin. Just a tiny bit of each can make a big difference. And then throughout the day I try to figure out how to constantly be giving him water to flush out the ketones and figure out what in the hell he will actually eat so that I can give him insulin. Never mind the underlying feelings of guilt, fear and anxiety that is always there. Some days when we try to have an adventure it's a disaster. Nothing goes right with the diabetes, nothing goes right with the weather, nothing goes right with my anxiety. And then some days when we keep it simple and we pretend to be Tarzan as we watch the storm from our Hobbit front door, we are joyful. Let's pray for more simple joyful days. 

I hate ambulances

I hate ambulances. I mean, I guess that's kind of a silly statement. Who actually sees an ambulance and says, "oh my gosh! An ambulance! Don't you just love those!" Since that fateful day when the word diabetes was heard, many seemingly simple things give me flashes of fear and painful memories. I suppose realistically it would be considered PTSD. I see an ambulance passing me on the street and I picture the way Ocean looked in my arms as we were driven from the local hospital up to Dornbecker's children's hospital. They let me lay on the strecher and hold him in my arms. Well I don't know if they so much let me as I demanded and assumed it. They had spent three hours trying to get a IV line started. Poke after poke, scream after scream. They kept saying oh we will bring in this person and she is great at IVs. And each time they couldn't make it happen. Scott told me to wait outside the room since I was obviously freaking out. I then hear a drill. A drill? Seriously?!? I peak around the door and see the ER Doctor literally using a little drill in his fibula, trying to reach his bone marrow to administer the fluids and insulin. My sweet husband was holding Ocean in his lap and he repeated passed out from the pain, threw up from the pain and screamed from the pain. The worst sound in the world. A sound that now visits me in my nightmares. By the time they loaded us into ambulance to rush us up to Portland, Ocean honestly looked dead from exhaustion, pain and obviously DKA. I don't even like typing those words it's so horrifying. Especially since we did almost lose him. His eyes were half open as he slept in my arms. Half open and practically rolled back in his head.

The EMT in the ambulance was trying to pretend that everything was OK. He was saying we weren't even going to put the sirens on, just drive on up to the hospital. But then he kept looking at Ocean and shaking him awake like he thought maybe he wouldn't wake up. Every 5 minutes he would say, "hey buddy you OK there?" Finally he went up to the driver and must've told him to pick it up a notch because they turned on the sirens and busted through the Portland traffic. I don't remember much of the drive but I remember the panic. I remember being afraid of looking away from his face as it lay against my chest. I remember feeling guilt and regret that I wasn't the one holding him while he screamed as they tried to get an IV in. I remember my heart aching in a way it had never ached before but in a way that I am now familiar with daily.

Every time I seen an ambulance I see the way my son looked in my arms. Completely limp as he lay against my breast. Mouth half open with cracked bleeding lips, sores and scales on his tounge from dehydration and thrush. Eyes roll back in his head with his lids half open. God, I hate ambulances.

 ........Diabetes sucks..........

33

In the four months since Ocean was diagnosed we have had many lows.  In the first days we were home from the hospital Ocean could have multiple lows during the day and night.  We didn't sleep (still don't actually) and lived in constant fear of the death that can occur when too much insulin is in the body.  When Mommy doesn't calculate the carbs right and gives too much insulin.  When the carbs given burns up too fast and peaks before the insulin.  When Ocean runs around like a normal little boy but doesn't have enough sugar in his body to  keep up.  As I write this, I realize these are obviously still very real fears.  However, I have learned the rhythms of Ocean's body a bit more.  I have learned what foods burn faster.  I have learned that I can trust my instincts and I will know when my sweet little boy is going low and needs me to save him with sugar water. Then again in 30 minutes I'm probably going to think I have nothing figured out.

Oceans blood sugar goal is between 100-200 and his most common lows are between 70 and 90.  However, one scary day he got down in the 30's.  And I wasn't there.  I wasn't there to protect him.  To see that he was dropping.  I was with a massage client in my office downtown.  Like is most common, Ocean and my husband Scott had come downtown with me to walk around. Before we had left the house I had given Ocean his insulin based on juice (the only thing I could get him to eat) and a high blood sugar correction (that ended up being an inaccurate high obviously.) At the time, he was rebelling against almost all food and having a lot of random high and low blood sugars since he was not getting proper nutrition. And due to something called the honeymoon period - stupid name and something I will explain in another post.  Mostly living on juice that i was forcing on him through a medicine syringe and probably creating all kinds of psychological issues (insert therapy here.)

As is our usual routine, Scott and Ocean came up to my office while I got things ready for my client. I proceed to have my usual panic attack when leaving Ocean and we checked his blood sugar right before they left to walk down to the Park.  It was 368 so we both thought, ok he is good for the next hour and shouldn't need to be checked unless he ran and played really hard.  In that case, his blood sugar needs to be checked every 30 minutes since strenuous activity burns carbs and obviously makes the blood sugar drop.  

I tried to contain my panic as I waved goodbye to my crying child at my office door.  Trying not to picture Ocean's face as it was while lying in the Pediatric ICU.  Trying not to imagine his face looking like that again while I am not there to protect him.  Just like I couldn't protect him from the diabetes.  Just like I couldn't protect him from the torture as they tried to get him stable in the hospital.  I tried not to picture the possible seizure he could have if his blood sugar dropped too low.  As they rounded the corner at the bottom of the steps I took a deep breath and tried to focus on my massage client.  I kept him talking about himself and tried to distract myself by listening to his stories about his day to day life.

At about 5 minutes before the end of the session I got a call from Scott.  If he actual calls while I am with a client I know something is really wrong.  Because in fact he had never called while I am with a client in the almost 10 years we have been married. I answered and in a calm voice he said, 'come to the park. Right now, come to the park right now.'  He didn't take the time to tell me anything else, he just said stop your client and get here as fast as you can.  I didn't have a way down there so my sweet client drive me the couple blocks to the riverfront.

I tried not to completely lose it on the way over.  Not knowing if my son was already in a coma.  Already dying.  I got to the park and ran to the playground area.  Scott had Ocean in his arms and was shaking him to keep him awake.  Diabetes supplies were scattered and flung all over a nearby bench.  Sugar packets, juice, syringes, kisses, med wipes.  Just by looking at that bench you could see the panic. The desperation. For some reason Scott had been led to check his blood sugar at 20 minutes instead of 30 after playing and running around.  Thank God he did, if he didnt Ocean would have ended up in a coma.  As Scott poked his finger with the meter, Ocean began to sway on his feet. He seemed to have trouble holding his head up and when the reader read 42 Scott knew why.  He took it again because 42? Seriously? I can imagine him watching the meter as it thinks.......33. Shit.  Somehow Scott was able to get 4 sugar packets in water and in Ocean's mouth before he started to slip into unconsciousness.  Scott started shaking him and taking to him loudly to keep him awake.  That is about when I came up.  The sugar takes about 15 minutes to work and  thank God it did.  He held him in my arms and again tried to control my panic. As he started to become more aware he reached for the kisses. Needing more. His body probably screaming at him for more carbs. He was ok but I wasn't. Scott wasn't. All we could do is just keep moving forward and trust that we will always be led to check his blood sugar when he is in danger.  Just like we were that day.  In just enough time.  Lots of fear in our lives these days.

This is not the day of the infamous low, its actually pre-diagnosis but only about a month before.  However, for some reason this picture makes me think of that day. Maybe because his body was already exhausted and killing some of those wonderful beta cells that make insulin.

Does sleeping deeply look different than a diabetic coma?  Does sleeping deeply look different than he did in the hospital with DKA? When I watch him sleep every night how will I know if something is wrong?