"The best advice I've ever received: No one else knows what they are doing either". - Charles Bukowski

It's amazing what a few hours of sleep can do. I got about 3 hours and woke when the nurse came in for bloodwork.

Em is perkier and squeamish about getting bloodwork - a good sign. She had been woken up every hour. She's not a fan of finger pokes, which they'd been doing pretty regularly since we got to Children's.

Breakfast comes and my wonderful girl says she will be ok for a few while I (literally speed walk) to get a mocha down the hall to bring back. We are on the 4th floor and its so handy having a coffee shop on the same floor! I go grab one (with extra whip!) and head back.

The doctors come in. They check on Em and start talking to me. Once Em is more stable, (her blood sugars that is) we'll meet her Endo team...

Who?!

It's the team that will follow her until she's 18. Dietitian, Endocrinologist, Nurses and Psychologist (social worker too if need be).

Jeeze she's got her own medical team! Guess diva runs in the family lol

The Doc's tell me there will be learning in the clinic and to have Phil come. 

Hooray he can join us!!!

We are still awaiting Emily's Covid test, so are still in isolation (she can't leave the room until it comes back negative). We don't have to wear masks while in her room - which is really nice.

Small victories, but I'll take them where I can get them. I feel almost manic - immense relief that I don't have to do this alone, and try to relay the info to Phil. I talk to Phil. He tells me he broke down last night when telling Ethan and Ethan cried too. So Ethan slept in my spot in our bed.

Not sure who was more of a comfort to who. My heart feels better that they have each other right now and me and Em do too.

I text the parents, call them and Em sleeps.

She eats a bit - no more nausea! Yay!

She has a TV too so we put it on as background noise but she's bagged still and sleeps. When she's awake she's so alert. My panic has subsided some.

I text my boss. I can't even think about work. He tells me not to worry, he'll keep the team updated. My whole world is in this room so I'm thankful for him taking care of that for me.

Phil arrives and relief floods through me. 

Shortly after the diabetes nurse comes in  to teach us She brings 2 pens that have  needles on the end. 

These are Em's pens. She'll need 4 shots a day - 2 of each kind.

Oh God.

We will give them to her.

Ug.

We can start practicing while in hospital so we'll be comfortable when we get home. She has a whole bag of stuff. She shows us how to open the insulin package, and add the vile to the pen, and how to prime the pen by clicking 2 units and pressing it out. She tells us we have to always confirm the dose with another pair of eyes. 

Oh God. We are gonna be responsible for shots? OMG there's a cloudy and a clear one - one is long acting, one is short acting but how will we know when to give which one?? They just seem to know. I know they are different, but there's no list...how will I know which to use when??

How do the nurses keep this all straight?

We are given a log book to keep track of her numbers and doses. OMG. So much to remember. What if we screw up? Her life is in our hands. 

There's ketone sticks that we have to check her urine when her blood sugar is over 14. The nurses have been making her pee after each finger poke because she's way over 14 still so that part I can remember. But everything else?

Why is this happening to Em? A few days ago our lives were just chugging along. Now its needles and 4 shots and carb counts.

Carb counting?! OMG

Everything...there's "free food?! How will we keep this all straight?

We got a big green binder.

SO. MUCH. INFO.

When the nurse is explaining the 4 shots, Em pales.

"4 shots?!" 

I see tears in her eyes. My heart hurts. Oh babygirl how I wish I could carry this for you...

By the time supper comes the nurse asks if we want to give Em her shot. We ask if we can watch. Finger poke first. They give us a kit for that too...finger poker (less hard than the hospital one - finer needle!) a glucose monitor and test strips. 

Em is not wanting anymore pokes. I can feel her stress rising.

We get the finger poke done (the nurse does) but now there's tears and she's adamantly refusing to get the insulin poke.

This is awful.

Will we have to hold her down when we are home? OMG I can't do that to her....but she'll get sick without insulin. We are in a no win situation.

The nurse convinces her to get it and its done! She made it look ok. Except for Em not wanting the poke...how are we going to get her to let us do that 4 times a day?!

Her dinner appetite is great - she finishes almost everything. What she doesn't eat they "replace" with juice. 

OMG so many things to learn. How did they know what to replace? With what?

Phil, Em, and I chat and when it comes to the bedtime shot, Phil volunteers to do it.

I watch in awe. I'm nervous. He looks calm. It's done!

Phil leaves and I crawl into bed with Em. We snuggle and watch TV and talk. Just us girls. Feels nice and safe laying here together. She's not tired.

It's almost midnight but she's spend most of the day asleep.

"Wanna go for a walk?" I ask her.

"Now mom?!"

"Ya, why not?"

So we get up, put slippers and shoes on and sneak out of her room like naughty children and walk around the unit. We get back, she lays down and very shortly is asleep.

I have a GREAT sleep on the daybed.

I think the first, albeit tiny, spark of hope was lit tonight. 

As long as we are together we'll get through this.

Blindsided on Some Idle Monday

Well 2.5 weeks ago our lives changed again!

Nope not cancer.

But my 11 year old daughter Emily got diagnosed with Type 1 diabetes...its not in the family, so it was a complete shock...

Let me start from the day our world was rocked..

Emily got 2 vaccines on Thursday afternoon at school  She then slept all weekend which didn't concern us too much because it was listed as a side effect. She had also been more tired about 2 weeks leading up to this point, and her appetite was off. I was starting to wonder if there may be an eating disorder - because how could she not be hungry almost all the time? 

Anyways so she slept basically all weekend. Sun around 11pm the vomiting started. Now I was wondering if it was a stomach bug, or could it be a reaction to the vaccine? Its been like 4 days so seems late but maybe...She and I are up all night and she is throwing up pretty much every hour and is insanely thirsty. She actually sneaks water in between, which she can't keep down.

Understandably she's exhausted the next morning. I take a day vacation from work because I'm so exhausted as well. Oh and Phil had all 4 wisdom teeth out on the previous Wednesday under general anesthetic so he's still on heavy pain meds and still recovering.

We finally get to the point that she's keeping pedialite down. I'm only letting her have a sip every 10 minutes. Then we graduate to 1 shot every 10 minutes. She's begging me for water but I don't want her to throw it up. I notice one time as she walks to the bathroom in her underwear and sports bra that she's lost weight. Like she's skinny - and not in a good way. Now I'm more worried about an eating disorder. Her face is pale and her eyes look sunken. She looks gaunt.

I'm super worried.

I decide I'll call our family doctor and get her in this week and go from there. If she suspects the same, we can go from there.

Around 1 pm or she goes in the bathroom and is in there a while. She's up to 2 shots of pedialite every 10 min and has had a few slices of banana to see if she can keep that down. So far so good. 

We have hopefully taken a turn for the better now!

Then I open the door to the bathroom, and she's sitting on the toilet (as a seat not going to bathroom) and looks kinda dazed.

"Em are you ok? Shall we go back to the recliner to sleep?"

"I can't. I just want to sleep. I feel like I'm gonna pass out..."

She crawls onto the bathroom carpet and closes her eyes.

I'm immediately concerned.

This is NOT normal. Something is very wrong.

"Em, is it time to go to the hospital?"

She nods.

Panic sets in. Do I call 911? I've been up all night - am I in any shape to drive? Phil is still on pain meds so shouldn't drive.  With Covid only 1 of us can go with her - what if she passes out in the car?

I call our friends Kyle and Aimee, panic slowly rising. Aimee is a paramedic so I ask her. I've been on hold for over 10 min with 811 and its telling me the wait time is longer than normal due to covid.

Aimee asks a bunch of questions then calmly reassures me she doesn't sound in imminent danger but yes she agrees Em should see a doctor. Likely at least severe dehydration, so she can get some fluids by IV.

I start to cry.

She talks calmly and assures me its ok to call 911 if I can't drive or don't feel comfortable driving. She looks up wait times for me and all the hospitals are over 2hrs but urgent care (10 min away) is only 30 minutes. I ask if it should be Children's - she again reassures me if Em needs to be transferred we can get an ambulance ride there from Urgent care. We decide on Urgent care to get her in ASAP.

Em needs Phil's help to get down the stairs - he's almost carrying her. My panic continues to rise.

We load the whole family into the car. We call parents, and ask Phil's to meet us at urgent care to get him and Ethan.

Em needs a wheelchair to go in because she doesn't have the strength to walk or wait in lines. I keep telling myself its all going to be ok, its just cause she needs fluids and was up all night.

My stomach is in knots.

There is a line up now. Apparently everyone decided they needed urgent care. I scan the crowd. No one else looks as bad as Em.

Its comforting and scary all at once - we should be seen quickly.

We get to the admin nurse and after bp, questions, she pauses, tells the other nurse to get a bed ready.

My stomach lurches.

I'm texting Phil, Andrea and the parents in a group string.

10 min later, we are called to the back. We are going into a covid isolation room because of the vomiting.

They immediately get her an IV. She barely responds. Em is terrified of needles. I'm even more worried from her lack of response.

They take blood, ask for urine sample when she can, poke her finger and hook up her IV with fluids.

Finally something to help!

Then the nurse starts asking about diabetes.

What?

No, its not in the family. Yes, she's been drinking more, but we are big water drinkers. hmm, ya there was fruity breath, but that was from her not brushing her teeth well enough with her braces...Well ya, she's been tired the last couple of weeks, but she's a tween so that's normal right?

Right??

The nurse pats my hand and says the doc will be with us shortly.

I text Phil.

Doc tells me they are gonna see what the bloodwork shows and go from there. She's dehydrated and the fluids will help

Ok. Makes sense. I text Phil.

An hour or so later the doc and nurse come to see me. Its maybe 9pm now. 

"So Emily will need to be transferred to the Children's"

Time stops. It cant be good if they are both here to tell me that?

"We can't confirm, but suspect that Emily is diabetic..."

My heart shatters and I burst into sobs. WHAT???

The nurse is patting me, Em is out of it and the doc is slowly talking but I'm not hearing any of it. 2 lovely paramedic ladies show up with kind eyes and speak slowly and reassuringly. We are going for an ambulance ride. Oh Em an ambulance ride! She sleeps on.

I text Phil. I don't want to be alone. He's at home with Ethan.

I HATE COVID.

He calls the parents to update them and has to explain what he can to a very scared Ethan.

I'm loaded up with Em in a snow storm into the ambulance in complete shock. I don't know much about diabetes.

But I do know since the pandemic we have been eating badly.

This is all my fault. She is paying the price because we got lazy?! 

OMG I'm the worst parent ever.

I ask the paramedic "we haven't been eating well. Did I do this to her?"

She looks at me, takes my hand and says "This is not your fault. This isn't about eating or foods or diet. It's genetics, viruses etc and not preventable."

Tears fall down my face. But I wonder if she is just trying to be kind. Isn't diabetes when you eat too many sweets? Bad food? Not enough good stuff? it's not in our family - I must have done something wrong. I must have been feeding her the wrong thing. The guilt fills my heart.

We get to the childrens and go into the ambulance bay. Its warm and dry. I follow Emily's stretcher with the paramedics. We stop as they transfer all the info to the nurse at Children's. 

I'm tired. And scared.

So scared.

We get into a small room. Em sleeps through all this except when they do conscious checks to make sure she knows where she is and who she is. they added insulin at Urgent care just before we left.

She looks a tiny bit better. Heart rate isn't as quick.  I try to lay down in the chair but I'm over tired now and my mind wont shut off. And the guilt.....

Docs come in, tell me she's in DKA (diabetic ketoacidosis) which is serious but not uncommon with kids who are first diagnosed. Her sugars were at 20 and normal range is 4-10 (holy shit - even if I don't know what that means exactly) She is Type 1 diabetic (tears) which is an autoimmune disorder where her own body has attacked the beta cells who produce insulin in her pancreas. She stopped producing insulin so now her body can't absorb the energy from any carbs she eats (insulin acts like a key) so her body started to burn the fat for energy and produced key tones in her blood which made her sick. the insulin is already helping, so that's kinda how they can confirm if its diabetes. 

Its not my fault they say - they still aren't sure what exactly causes it but ask about auto-immune diseases. They run in Phil's family so she may have been at higher risk and we didn't know.

Is it really not my fault?! Could that be true?!

I cry again.

They tell us we will be admitted shortly, likely for a few days. She has type 1 which means insulin dependent. She will need insulin for the rest of her life. 

OMG. What does that mean for her?

3AM we get brought up to a room that has a daybed for me! She gets a 2nd IV because her levels of potassium and phosphate are all out of whack too because of the DKA. She's now hooked up to like 5 IV bags.

She looks so small in that bed.

My heart is breaking but I can close my eyes for a few hours because they are checking her every hour. 

Thank God for Alberta Children's Hospital. We are safe here.