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.

lows

My daughter's "medicine" when she has a low is a small, pre-measured, bag of Skittles.  She loves Skittles. This is one happy upside to her diagnosis.

The downside is that she had *3* lows yesterday. That is not good. Even having maple taffy on snow (it was Francophonie week at school, and they had traditional French-Canadian music, and "sugaring off" events yesterday), she was low.

This could just be adjusting.  This could also be a "honeymoon period", where her pancreas attempts to make insulin, but only does for a bit.  Kind of like a last ditch attempt to do it's job before it stops for good. This requires us to play with her insulin numbers a bit.

Part of her lows though, involve her recognizing what they feel like.  Yesterday, with her first  low, she felt it before she tested it.  She said she felt shaky, and funny, so she tested and was very low. My personal wish for her is that she would know what lows and highs feel like so that she can learn good self care and regulation, so that eating things we haven't accounted for becomes something unappealing. It's hard to not be able to snack on what we want, when we want it, so knowing how bad it can make you feel might help with some self-discipline…because there will be times that her self-discipline will make ALL the difference. Pretty scary to know that a 9 year old is in charge of her own health that way.

Perspective

I spent 5 days and 4 nights with my daughter at Children’s hospital. One day and night in the Emergency department, and the rest in a ward. Thankfully, we were able to avoid ICU, which was the initial plan.

Hospitals are strange places, and I think Children’s hospitals are even stranger. Most people you see walking around hospitals are either staff or family/friends of people who aren’t well.  There aren’t many “happy” reasons to be in a hospital, especially one without a maternity ward.  Almost all of my previous hospital experience was for the birth of my three children, so mostly positive experiences.

This was different.  That first night we were in, the night where they were still throwing scary numbers and outcomes at me, I finally was able to walk away for a few minutes to find something to eat. It was around 7pm, and I had been on the go/not eaten since 8. I walked down to the cafeteria, found some food, and then really looked around. It was quite quiet, but there were quite a few bleary eyed parents sitting at tables. At one table, a couple sat staring off into different directions, stirring coffees. At another, a woman was texting. A man was buying a variety of snack food at the cash, and trying to balance a small child with a handful of chip bags.

Over the days we were in the hospital, I tried to be aware of other parents. Talking to some, as the situation presented itself, giving a wide berth to others as it seemed appropriate. I had a few conversations with other mothers at various points, and the question always came up “what are you here for?”  It was during one of these conversations, around suppertime, in an elevator, that I said for the first time out loud “my daughter is diabetic, and she came in with really out of whack sugars”.  By that point, Sunday night, she was doing much better, and it was clear that we were going to be going home sooner rather than later. Then I asked the mom the same question. Her son was sick, and I won’t say how or what to prevent sharing a story that isn’t mine to share, but her little guy has a much longer road to walk to get healthy.

By the time all of my daughter’s iv lines were removed, and she was no longer connected to anything that beeped, whirred, or blinked, it almost felt like we were out of place. She was laughing, we could snuggle on her bed, she had enough energy to engage in conversation again, and she almost seemed like herself. We were starting to have fun together, despite the frequent  glucose testing, vitals checks, and visits from doctors and nurses.

The days we spent in the hospital were long, but they were just a blip on the radar for some families. I overheard one father at the Starbucks kiosk talking about how they had been staying in the city with friends for 3 weeks while their daughter was in treatment. Another mom told me about the hours they have had to drive to visit their child. As disruptive as this stay was, we were only 40 minutes drive from home. Our daughter got well enough to release quickly, and we weren’t far from home, and for that I am very very thankful.  Managing a chronic condition, while a new challenge, is very different from a severe illness or trauma.

Keeps things in perspective.

Transporting

I've sat in the back of an ambulance for "business reasons" in the past, after a car accident, but never been inside one that was in motion.  That was an experience I was hoping to never have.

After N received a full bag of iv fluids, and was on her second, the ambulance showed up to transport us. I had been in text contact with my husband, and asked him to meet us at Children's, instead of the original plan of him getting a ride to urgent care to pick up my van and follow us - the ambulance team was faster than expected. By now, N was talking again, and asked to use the washroom. That was a bit of a gong show, but then we got her loaded onto the gurney, and into the ambulance. The paramedic who sat with us in the back was amazing, and worked really hard to keep N talking and awake - which wasn't easy at all.  The drive wasn't too long, especially as it was now around 11am, and past morning rush hour(s).

Once we got to Children's hospital, we were brought inside the ambulance bay, and then into a trauma room.  That was when a larger team of medical staff took over her care. Again, I stood back and just watched, and hoped my husband was going to be there soon…and then my phone battery ran out of juice. I had spent a large part of the ambulance trip texting people who were praying for us, concerned for us, and especially a good friend who has been through quite a few hospital visits with her daughter (who, coincidentally was born on N's due date, and N on her daughter's due date).  I again answered question after question, and felt totally unnecessary to the whole process.  N was able to answer more questions herself at this point, but was visibly fading fast, energy-wise.

I have never felt so relieved as I did as when my husband walked in the door.

My husband, R, is a pastor, and is more used to hospitals, and visiting. It's never hit me how comforting his calm presence can be, until that moment.

It was around this time that I really was so very thankful that we were in a Children's hospital. We moved to this city last July, after 8 years in a small town, with an understaffed medical team. Most major medical issues were shipped out of town, at least a 3 hour one way trip. Here I was, sitting in a Children's hospital less than 40 minutes drive from my home. Thank you.  Just thank you.

Urgent care

I had brought my daughter into the urgent care centre, thinking she was dehydrated.  Which, she was, but that wasn't the underlying problem.  She was still doing that strange gasping breathing - which honestly, at first I thought was just dramatic. (insert bag over head here) At 2, 3, 4 and 5am, I wasn't sure if it needed immediate attention, and thought "well, if we get some sleep, we can handle waiting in urgent care longer, and I'll be in a better position to drive".

The lovely triage nurse recognized the situation as being serious, and moved us as fast as possible, and brought a wheelchair for my girl to sit in.  Within moments of moving into the back part of the urgent care space, there were 4 nurses, a student nurse, and a doctor all working on my daughter.  They were pulling off her clothes and tossing them at me, while they asked me lots of questions, which I tried to answer clearly. Then one of the nurses pricked her finger and turned to the doctor and said 26.4 and I leaned in and said, "that's her sugar isn't it. That's crazy high". Yes, it was.  "Normal" is 4-7, and I know that even during the glucose tolerance testing with my pregnancies, I've never been over 8.  The doctor confirmed that it was high, and then they got an iv in her, and took blood.  Her skin was grey at this point, and her limbs were mottled and purple, and her hands and feet were icy cold.  One of the nurses said they could smell the sugar on her.

I could only stand back and watch at this point, so I started texting my husband. Reading back over those texts is hard.

"Please pray, please"
"she's incoherent and muddled"
"we might be transferred to children's"
"her system is shutting down"
"thinking diabetic"
"sugars all of whack"
"extremely high, especially since she hasn't eaten"
"getting hydrated now, plus an anti-nauseant"
"lots of heated blankets on her, she was in bad bad shape"
"like, I should have brought her in last night"
"waiting would have been….real bad"

One of the nurses took me by the arm at this point and said that the bloodwork they were doing was a formality, to confirm what they already knew.  My daughter was diabetic, and that our lives were about to change. That they needed to stabilize my daughter enough to transport her to Children's, and we were being moved to their Emergency department when it was safe enough to do it. It was around now that I posted something on Facebook asking for prayers, and started texting my parents and sister. I just felt by texting someone or doing something was more useful than standing there just watching my daughter look sicker than I could imagine, struggling to breathe.

DKA - what is it

Right now, I'm going to share what it was that had us in the hospital in the first place. DKA. Diabetic Ketoacidosis. A term I didn't know beforehand, and now I can spell it without double checking.

http://www.mayoclinic.org/diseases-conditions/diabetic-ketoacidosis/basics/definition/con-20026470

Symptoms include

• Excessive thirst
• Frequent urination
• Nausea and vomiting
• Abdominal pain
• Weakness or fatigue
• Shortness of breath
• Fruity-scented breath
• Confusion

My daughter had ALL of these. She had fruity breath, but I confused it for our fruity hand soap. She had been washing her hands a LOT as she got sick, and all our hand soaps are various fruit scents, confusing the whole thing. 

DKA can be fatal, which explains why the medical staff I dealt with the first day suggested I didn't google things right away. 

the start

In retrospect, it's really easy to see the signs. For the last 2 weeks, our daughter (N) had been tired a lot. Sleepy and super low energy. Her appetite dropped right off too.  There were even a couple of nights she put herself to bed early, and she was always cold.

She also started drinking a lot more water. Instead of just a cup before bed, she would have two or three, and then be up a couple of times at night to pee. The getting up to pee was new, but made sense due to the water she was drinking. We didn't think much about it.

The first weekend in March, she was really low energy. I'd ask her what was wrong, but she said nothing was. I was wondering if she was getting sick or if it was hormones. Her face looked thinner, and I was thinking growth spurt was coming. The main living areas of our home were getting painted, and things were chaotic, and I thought she maybe was just processing her feelings quietly. But by Thursday, something was wrong.  She woke up that morning extremely nauseated, and started throwing up. Both my husband and I had things that tied us up that day, so we juggled her care and kept her home from school. By evening, she was still feeling sick, and was barely keeping water down.  It presented like an icky stomach bug.

By 2am Friday morning, her breathing got really…strange.  I woke up to what sounded like her gasping for air, or dramatically sighing with each breath.  She needed to throw up, but there was nothing happening. Seeing we had a long stretch to morning ahead, I moved her sister into my bedroom, and tried to sleep in the girls room with N, coaching her on slowing her breathing.

At 7am, it was increasingly clear we needed medical help. My husband and I got our other two children out the door to school, and I called the provincial health line, staffed by nurses.  I explained what was going on, and the nurse started asking me questions. Once she asked me what my daughter's breath smelled like, I said "these are diabetes questions, she doesn't have diabetes". Famous last words. The nurse strongly advised me to get her into the hospital right away.

By now, I had scoped out waiting times at the area hospitals, and decided to go to the closest urgent care centre. It was closest to the house, and would have a shorter wait time, because she was just dehydrated, right?

Getting N out the door to leave was an ordeal.  By now, she was mumbling incoherently, and was struggling to put on her own shirt. I dressed her, put her in the back of the van, and handed her a cup of juice (yes, juice, what did I know?). The 10 minute drive to urgent care felt like forever, as I checked her in the rearview mirror, and she looked worse by the minute.

Once we got to urgent care, I had to half carry her into the facility. There was a short line up, and I had her sit while I waited.  A woman behind me noticed how sick she looked, and passive-agressively said that the woman in front of me should let me go ahead. It was kind of funny, but I said to the woman behind me that we don't know why anyone is here, and we shouldn't assume anyone needs care less than others. However, once the triage nurse took one look at N, she fast tracked us into the back to be seen.

That's when everything moved fast.