Fight or Flight, But Without The Flight Option

I can feel myself changing as time goes on with this illness. I don't always realize I am in fight mode until after the storm has passed and I feel my body aching from holding all of the stress. I try to take time to force my muscles to relax at least once a day, but sometimes I am in fight mode for days at a time. When I come out of it I feel a rush of emotions I have been compartmentalizing and take inventory of the pain my body is in. I feel the light bright part of me being hardened by it. I have completely changed my outlook and my attitude in so many ways. I no longer put effort into things that are not a positive for myself and Lily. Her diabetes has made me realize how fragile life really is and reinforced my view on the importance of her role in my life, and mine in hers.

I've lost some friendships due to my lack of interaction, I have lost relationships due to my lack of patience I have for anything that is not bringing us positivity, and I have lost a bit of myself from being in constant stress. It is all a price I am willing to pay over and over and over again, without a second thought. She is worth every second of stress, every knot in my muscles, and every tear or feeling of defeat.

I'm also proud of myself though, there is only a fraction of bad that has come with Lily's diabetes, and so much good and positive. I am so proud of how strong and resilient my daughter is, I sometimes cry with happiness. This whole thing has been hard on me, imagine how hard it is on her... how she must feel on the days I can't seem to control her levels, the nights I am in her room multiple times poking her fingers, rolling her off her sensor or giving her something to drink to bring her BG levels up. She has to endure all of the poking and prodding, the mood swings, the physically ill feelings. She is not even two, and she is so much stronger than I ever will be. How is she so amazing already, and how amazing will she be after a lifetime of this?

Sometimes I feel like a failure to her, and sometimes I know that I can only do so much and we are at the mercy of her body and how it decides to act that day. The past 36 hours have been one of the hardest I have had in the past probably four months with her disease. I got her from her Dad in the morning and he mentioned that she was high throughout the night, which can be from a variety of things including if she ate a lot of slow releasing carbohydrates before bed, she didn't receive enough basaglar insulin, or she is getting sick/going through something (like a growth spurt or something similar). I didn't think too much of it, just thought that I would keep an eye on her to see if I felt she was getting sick.

The first thing I noticed was her lack of appetite, and it is really noticeable because let me tell you, the girl can eat. When she turned down a bear paw that really alarmed me. Then I noticed how tired she was. She was not her normal self, and just kept laying down around the house with her bear. More strange behaviour because she rarely sits still for longer than a few minutes. I tried pushing off putting her down for nap until she ate lunch, hoping she would eat a large lunch to make up for refusing breakfast. I didn't notice it at the time, but she was not drinking any water during this time. She is normally so good for drinking water on her own, and comes to me when her bottle is empty so as long as I fill one up in the morning she handles it for the rest of the day. I wish that I had paid more attention to it...

She refused lunch and her nap bottle in bed. It really started to concern me at this point, but I still hadn't realized she wasn't drinking water either. Her BG dropped while she was sleeping so I had to wake her two hours into her nap (which I know she needed double that from how tired she was). I gave her some milk, which was tough to get into her, but I thought that we had gotten enough to keep her levels just above 4. In what seemed like a minute she was dropping lower than I had ever seen. I started to panic and gave her some sugar to lick. Nothing... it continued to drop to a point her monitor wouldn't even read it anymore and my worst fear started to come true in front of my eyes. She laid down beside me and her eyes started rolling back...

I picked her up so fast and ran to the sugar dish I startled her. I started letting her lick more and more sugar, with her starting to slip out of consciousness on my shoulder. I was bouncing her and talking to her starting to plan out my emergency plan in my head while wiping sugar on her tongue. I started mapping out where her needles were and the medication she would need if she went completely unconscious and I could not get sugar into her anymore.

I was able to catch it this time, but it was way too close for comfort. I know I have said this before, but you cannot get comfortable or confident with this illness.... ever. I hate that I thought that I knew what I was doing with the milk, doing the same thing I have done so many times before. It reminded me that I shouldn't be treating any time like another. I hate that I let it get as low as I did through ignorance. I felt the overwhelming guilt for the rest of the day. But she wasn't done scaring me for the day yet.

She read low again while sleeping last night.... an instant drop that we have not experienced yet. She was reading stable and her Dad, his girlfriend and I had been speaking on the phone maybe an hour before and we all thought she would remain stable for the night. We went over what I fed her for dinner and the insulin I gave her for it and confirmed that I had done nothing wrong. Then the alarm went off. We thought it must be a sensor issue as she was just stable and in the span of five minutes was reading dangerously low, so we figured it would jump back up to where she was at the next refresh. When it refreshed five minutes later we were confused how it was still low, and getting lower. I said to give it one more refresh because there is no way she dropped that quickly. Another five minutes and she has gone even lower... why!!???

I rushed in to give her sugar water and treat it before it got scary again, especially because I wouldn't be able to see the signs of danger like passing out if she was already sleeping. She dropped to the point of it not reading her level again and through all of her guardians talking together we decided I needed to do a manual check of her BG via finger poke, poor kid was trying to sleep this whole time. She even went to bed early that night she was so tired... I felt so bad waking her each time, especially waking her to me jabbing her thumb trying to draw blood.

The sugar water had worked and her levels were good, and with that the monitor jumped up from her low reading. With all of the sugar water I gave her, she did not go above range though, proving that although there may have been something happening with the monitor, she did need some sugar. Especially because I was woken at 4:20am by her alarm going off again... she needed more sugar. I gave it to her without too much disruption to her sleep and we were back asleep until the morning.

After her first low that night her Dad suggested checking her ketone levels in the morning to make sure everything was ok as something was clearly out of whack. Considering she was high the night before and he thought maybe we needed to increase her basaglar to me fighting off lows all day and night the next day we knew something was not right. He brought up dehydration and night and it wasn't until then I had realized she barely drank any water that day. I'm sorry kid, I wish I had done better that day and realized sooner so I could have figured out how to get water into you.

I woke her up and checked her ketones this morning, via finger poke, so the poor kid was not happy with me at all. I had poked her fingers three times in the past day. Her little thumbs were bruised so I used the side of her thumb for this test. It came back at 1.4 and I sent a picture to her Dad and started looking for the ketone scale in my 'diabetes bible' that CHEO provided. All the while remaining calm in hopes that it would be fine, but worried that seemed high. I finally found it and read the part of it saying 1.5+ needs medical attention. Panic again. It is 7:30am and I am already panicked. It is only 7.5 hours into the day and I have been fighting for Lily's health twice... Her bible said water can flush it out at this point and to give a correction dose. Since she did not require a correction dose, it was time to make up for the day before and get water in to that little body whatever way necessary.

Luckily we were able to get her ketones down to 0.4 two hours later and I felt confident sending her to her Gramma's so I could try and get some work hours in. It was after dropping her off that I felt the rush of emotions and stress that I had been feeling for the past 24 hours. I don't know how I manage to not feel all of these things in the moment, but I find it so amazing that my mind and body are able to put those aside until after the situation no longer requires me to be 100% in the moment. The things our bodies do to protect us are pretty amazing.

I am grateful in a lot of ways that Lily is as young as she is while I am learning as much as I am about her disease. I hope that she doesn't remember these feelings and seeing her mom as run down and emotional as I can be at times. It has been just over five months, and I know that with each day I am getting better, and although I wish I had prevented yesterday's lows, I know that I will be so much better and more prepared the next time she needs my help. I went through all of the supplies I have and refilled any prescriptions we were low on so that we would not be stuck without when she really needs it. I read up on her ketone meter and know how to work it so much better. I feel like we got through it and we came out better for it. I will be better for her. I have learned from my mistakes, and the guilt that I feel will serve it's purpose of forcing me to be better so that I never put her through that again and feel this way.

P.S. her appetite was back this morning and she drank a lot of water, so we have done what we need to do to in this situation now and if she continues to have issues while she is eating and drinking, then we will involve health professionals. Children are unpredictable and at her age she cannot communicate if her stomach hurts that day, or she is feeling nauseous and doesn't want to eat or drink. All we can do is ride out the wave and make sure she gets what her body needs to survive in those times. Those with children will understand the unpredictability and I'm sure their children have had off days as well, ours are just a little different with her diabetes making her off days potentially dangerous.

Xoxo T1D Mommy

I take full blame for yesterday, but I know that I did not do anything to make her levels drop, and did what I normally do to prevent these things. There is no way I could have known that her low was more aggressive than what I have ever experienced. What I should have done was pay more attention to her water intake. I hate that I feel the need to defend myself after reading this post back to myself, but I don't want anyone to get the wrong idea. These posts are to help me process and deal with the situations I live through with Lily, and I hope that if anyone reading them ever feels the way that I have, they find comfort in my posts knowing that they are not alone. And that good Moms make mistakes too, it doesn't mean we are unfit or don't love our child.