More on how we got here

N was diagnosed in March, and looking back, I realized I never really completed the story of how we ended up here. So I'll continue the story here.

We arrived at Children's hospital, and were taken from the ambulance to a trauma room. We spent about 2 hours in there, as they stabilized our girl, and figured out what needed to happen next. There were lots of questions about medical history, allergies, symptoms, and it was really hard to focus as all my attention was on the little girl in the middle of the room.  She was in terrible shape.  There were so many people in and out of the room while we were there, most of them introduced themselves, most of them were also a blur.  By the time my husband got there, they were talking about some potential "worst case outcomes" to prepare us. With DKA, if the numbers are too out of balance, and don't move slowly enough, there can be brain swelling, which can cause permanent damage. The whole approach is to bring all the levels (potassium, ph, sugars, and probably a few more I can't recall) into normal range slowly, but steadily. They were going to move her to the ICU, but keep her in the ER in the meantime.  There were nurses taking blood work, including pipettes of blood to measure oxygen levels - those weren't fun at all.

And then it was just us and a nurse in the room. And I finally started to breathe, and let things sink in.

N was starting to revive a bit, but was so, so tired.  She was happy to see her dad, but we were trying to keep her awake to answer questions. Questions like "do you know where you are?" "do you know why you are here" "how do you feel?" She just wanted to sleep.

After the trauma room, they moved us to a room in the ER. The ICU didn't have a bed for us yet, and being in the ER, they would watch us closely. She slept. I cried. My husband sat with us, and then sent me to go find some food. He then needed to head home to meet our other two children, and talk to them about what was going on.

Honestly, that first day was a blur. We had staff in and out almost non-stop. I met so many staff members, answered so many questions, gave our medical history so many times. By about 6pm, I was exhausted. N was still sleeping. Our other children were at a friend's house for the evening, and the puppy was in her crate at home, and I was so happy to see my husband back at the hospital with a bag of clothes and my toothbrush. At some point, I got some food. I texted with friends and family. I prayed.

When evening turned into night, N was not in great shape.  Her numbers were improving, but her vitals and reactions were not.  They couldn't wake her up, even with a sternum rub and shoulder pinching. The staff prepared me for a potential CAT scan to see if there was brain swelling. A kind nurse found me a chair that almost reclined into a bed (but popped back upright if I moved the wrong way), and tucked us both in to try to sleep. Just at the point when they were most concerned that things were going poorly, she woke up, and told one of the nurses that she was mean and must hate children because she was poking her so much. Blessing right there. Nothing like getting a great belly laugh at 3am.

By the next morning, she was in much better shape, but her little hands were a mess of pokes, and they had moved on to her feet to get the blood work they needed. :(  Her system was in such rough shape, that just getting enough blood for a test strip was hard work.  However, she was much more alert, and wanted to go use the bathroom.  Now *that's* a big deal to do when it's a) down the hall, and b) you are connected to a series of iv and vitals lines, and c) are too weak to walk. I'm sure it was comical to watch.

more to come.

more learning

Last week, we had yet another teaching session at the hospital.  This one was different - it was a group session.  Us and 3 other families, all with children dx'ed within 2 weeks of each other.  We learned about how to adjust insulin levels, and when to do it. We learned about long term complications, and how newer developments can help prevent them from occurring. We learned about parenting styles and how some are more efficient for managing chronic illness. We also learned about the importance of nurturing relationships and sharing the work load

And then I started to cry.

The thing is, there are parts of this that are really easy to manage. Counting carbs? Check. Math to figure out serving sizes? Check. Calculating recipes? Check. Proactive parenting approaches that are neither too firm nor too lax? Check.

But sharing the work load? That one is hard.  I know that my hubby being solely in charge for the weekend I was out of town for a funeral was wonderful…but in reality it is a GIFT. A gift to my mama's heart. A gift to my mind. A gift to our daughter. A gift to our relationship.  That so early on in the process we have been able to rely on each other for support is something truly wonderful, and sadly, not terribly common (as explained by the social worker on our team). I know I've got at least one friend who is also great at care-giving, because she's already shown that to me (thanks, B, thanks). Her teacher has been amazing and keeps us in the loop on school days (oh, I, you have no idea how much that means to me). Eventually, we'll trust her care to someone else too.

Another very important piece of the learning puzzle was this: doing everything right 80% of the time is success, and even if you did everything right 100% of the time, there would still be strange numbers and moments, that's just diabetes.

Those sentences? They gave me a sense of freedom. Because right now, we are doing everything "right" as much as we can, but there are still going to be moments where we don't. My math might be wrong. Her body might react strangely (as it has for land exercise vs. swimming already). The seasons change, and require adjustments - we've been told April is a very common month to re-tweak dosing as the weather changes and kids are playing outdoors more. She could hit full on puberty and everything will become a mystery again. As long as we slog along, doing our best, we're doing our best for HER.

<3<3<3

One month!

Yesterday was our one month "D-anniversary" of diagnosis.

We've come a long way in a month.

We could choose to be sad about things, and how life has thrown us this curveball.

Instead, we chose to celebrate.

One month of living, and living WELL, with T1D.

So we ate cake.

Cake came with lots of math, and plenty of flavour.  It was a strawberry bundt cake with whipped cream. Yum.  Worth every single carb, according to the kids. All 54 of them per serving (woah, that was with reduced sugar too!).

a new victory!

One special treat we have enjoyed is discovering those frozen yogurt places where you build your own creations.  Yum.

A franchise we've gone to previously opened their new location in close to our backyard today.  We went.  Free fro-yo!

We ate. Some of us ate more. We tasted.

We then went home and had the rest of our protein rich lunch (yes, we ate fro-yo for lunch).

She was on target for her glucose reading - woohoo!

That was thanks to some pre-thought out tweaking of insulin dosing, and choosing well.

Sharing the tasks

I (mom) had been handling the majority of N's diabetic needs.  We were talking to her about dad starting to do some insulin shots, and taking on some of that work load.  She was resistant.  Mainly because she didn't want him to give her any shots in her rear end.  Fair enough.

Last minute, I had to go out of town for a family funeral this last weekend.  It was sink or swim for dad and N.

They swam.

I'm thrilled.

He managed all the insulin, she handled all the blood glucose tests. He and I worked out a basic meal plan before I left.  She also had a playdate with lunch, which they managed beautifully, including dad emailing with the other mom about carb needs.

I had no idea how heavily this was resting on my shoulders until I was away for 4 days. I'm so happy knowing that she's in good, capable hands with both of her parents.

Not that I doubted his skills, but it was a bit of a pressure situation.

Victories!

New day, new steps forward

Lest anyone think this blog is going to be all darkness, today we faced a new challenge, and had VICTORY.

With very little planning, we spent a chunk of the afternoon out with a friend from our previous province and her daughter. We being Miss N, our middle child, and her older brother. Older brother was done with being at the mall long before we left, but we managed our first afternoon really out and about, through afternoon snack time, up to supper.

Careful budgeting had Miss N enjoying a small snack from home, AND a beverage from Starbucks (shaken Tazo passion lemonade).  A blood sugar check on the go later too.

THEN, as we were close to suppertime, and about 20 minutes from home, we decided on the fly to have supper out.  My trusty son in the passenger seat manned the iPhone texting duties, and we arranged to meet my hubby and other daughter (who spent the afternoon at a birthday party) for supper.  Sure, it was fast food, but it was a meal out as a family. We don't do that often, but it's obviously something we can *still do*.

That was a great accomplishment.

Even if she decided that the carbs in a drink wasn't worth it, and had water instead.


Edited to add - today, she's been on target with her sugars ALL DAY.  Woo hoo!

today's new word: glucagon

Today, we had our first trip back to the hospital - for more Diabetes training and follow up.

We learned about glucagon.

I may not sleep again.

Our girl has been having a lot of lows lately. She's really unhappy about them, and how they make her feel. Hearing about glucagon, and learning how to administer it makes me even more unhappy about her lows.

For those who aren't up with the diabetes lingo, glucagon is to diabetes what an epi-pen is to allergies.  It's to be given "when your child is low and non-responsive".

WTHeck?

Sure, that's what it's for, but the sheer fact that this COULD be needed, well, that is truly scary.

It's already scary that I feel I'm holding her life in my hands as much as I did when she was a newborn. Knowing I need to know how to prepare and dose glucagon when she can't be revived is frankly terrifying.

I'm very, very tired mentally tonight.