One Month Down, One Lifetime To Go

Today marks one month of Lily being diagnosed with Type 1 diabetes. What a month, wow. I can't believe everything that has taken place has all been within the span of four weeks. No wonder I feel so tired.

This weekend had both it's ups and downs, and Lily's BG levels were right on trend with that. We are still in the process of figuring out her carbohydrate ratios, and just on Friday we adjusted her Basaglar dose. For anyone that is thinking I am speaking gibberish right now, let me quickly explain. Lily receives five needles a day for the purpose of consuming carbohydrates. During some of those injections she receives insulin just for the purpose of correcting her blood glucose levels. We need to calculate her insulin dosage for those five daily needles, when she receives fast-acting insulin. The doctors decide on a base amount that she receives with her sixth needle, which she gets before bed every night, of long-acting insulin.

We calculate her dosage for snacks and meals during the day using ratios and a sliding scale that the doctors create based off the information we provide. Because it has only been a month, we are still learning about how much insulin Lily's body requires at the different times of the day. Hormones play a large factor in this calculation because her body is processing the carbohydrates we give her differently at the various times of the day. So in turn, she has a different ratio for each meal and snack of the day based off how quickly her body is absorbing and digesting the carbohydrates. The sliding scale is used to correct her BG levels to get them into range, and we can give these correction doses as needed with the meals/snacks or without, as long as enough time has passed since her last correction dose or the last time she consumed carbs.

It all sounds very technical, and honestly it is, but the doctors create the ratios and sliding scale and we just need to follow it. So when it comes time to feed her I will write everything down, calculate the carbs, check her BG, see if she needs a correction dose and add it to the amount calculated using the ratio for the meal. Once I have figured out how much insulin she needs I get her pen ready and give her the insulin, then wait the 10-15 minutes before serving her.

I decided right away that I wanted Lily to be very aware of what I was doing. I let her know that I am prepping her pen, tell her I need to poke her and pretend to poke myself first in front of her so she knows it's ok. She normally smiles while I'm poking myself and then allows me to do it to her next. She is so amazing I can't fathom how quickly she has accepted injections. Although, don't get me started on changing her Dexcom, because that is not such a pretty picture... that is a much longer and more painful process for her, but it cuts out having to poke her fingers to check her BG anywhere from 6-8 times a day. All we have to do is go through the ugliness for one hour every 10 days.

By typing it out, it seems as though it is a relatively smooth process and I have it all under control, but this weekend was a nice reminder that I am still just a beginner and know next to nothing. It started off with her having her regular rollercoaster levels on Friday, but I emailed the doctors and asked for an adjustment before the weekend, so I was hopeful of an improvement after receiving an adjustment to her Basaglar dose.

Saturday we woke up and of course were running late, as per usual. We had my grandmother's burial that morning and her celebration of life that afternoon. I wasn't nervous for Lily during the burial because I knew if I fed her breakfast before and gave her the morning insulin that she could wait until after to have a snack. I of course packed it and her insulin (and everything else she could possibly need) anyways incase of an emergency, or I could give her a snack and insulin during. It was the celebration of life that I was nervous for; the dreaded party with a faulty pancreas. I get a lot of anxiety around parties because of all of the food around that Lily will probably want, and I have no idea the carbs in it. This was going to be our second party since the diagnosis, the first being a birthday party for a family member.

All was going well, until I checked the Dexcom after the ceremony at the gravesite and saw it said her levels were dropping, and fast. I was the first to leave, but I knew I had enough time to get her home to eat something before she hit a low. So we left, got home just in time to catch her levels and I felt so happy and proud that I had been on top of it and caught it. She went for her nap and so did I, gearing up for along day ahead physically and mentally. When she woke up I scooped her up right away and brought her to the celebration with a pre-measured snack ready so I could give her insulin and her snack right away upon arrival. Wow, another Mom win. It was a couple hours in that she started to notice the food everyone else was snacking on... I tried for the zero carb snacks, but who likes those tasteless things ;)

I stayed calm and brought her away from the goodies to get her something I could measure and give her insulin for, hiding away from everyone until she finished her snack. My family was so amazing to keep me company any time I needed to bring Lily away to handle her food or insulin, otherwise it would have been very isolating. I am worried for when she gets a little older and things are more accessible to her, but I am willing to be the extra cautious and watch her like a hawk until she is older and understands.

We were able to enjoy the day with family, spending the evening in the pool and eating the pre-measured dinner I brought with everyone else. If I were to exclude the fact that it was an emotional day burying my grandmother, it was one of the best days since Lily's diagnosis. I felt on top of the world, being so organized and calm about the situation. It was her first night that her BG levels were in range the whole time. The perfect way to end off a great day.

Then Sunday came and knocked me down a few notches. Her levels were hitting highs and quick lows. It was not a good day for me, or Lily. She was exhausted during both the highs and lows. It was actually how she was acting that alerted me to a low coming. We were having the best time playing, when all of a sudden she sat and got quiet. She was moving slowly and staring, no longer babbling away. Something felt off to me. I went and checked the Dexcom and it alerted me that she was low and still dropping. There is nothing worse than seeing the red numbers. This was only the second time that I have had a red low, and the first time I panicked because I didn't gave the medication I needed if she lost consciousness. This time I quickly took inventory of where the medication was, just incase I wasn't able to catch the low in time. Once I was positive of it's location I started thinking about what I wanted to give her to bring her back up. We are to give her 5g and wait 15 minutes before giving her anymore. I have made so many plans for these lows, but they seem to leave me the second I see the red.

I made this same mistake last time, of giving slow releasing sugars... so hopefully third time is the charm that I actually do things in the right order. But I walked to the pantry, did a quick look around to see what I could calculate for 5g and what I know she will inhale (really enjoy). She has been obsessed with these crackers that I buy, and since she eats them so often I know how many carbs are in each one. I knew two would do the trick. I handed her two crackers, which she gladly accepted and starting eating silently. I watched her eating them and then it hit me... slow releasing... why did I do this AGAIN. She needs something that will affect her levels quick... not a cracker!!

I grabbed the apple juice that I keep in my bag for emergencies and measured out 5g and when I say she inhaled that I mean it. I realize this is doubling the amount she needed, and planned for a spike that I may need to deal with after, but that was not my main concern right now. She drank it down and within 10 minutes her levels were rising. It isn't the worst thing that I gave her both, in fact a slow releasing carb intake is good after a low, but not given before the quick releasing. By giving her the crackers first, I made it harder for the juice to enter her bloodstream as quick as it would have liked, hence slowing the process of raising her levels before they get too low. I did this last time as well and I was really hoping that I would have learned to not do them backwards, but here I am writing out my mistakes. Maybe now that I am publishing it, it will really sink in, hopefully.

The anxiety from the low stuck with me the rest of the day. I'm also hoping that I will adjust to dealing with these situations without letting it get to me for the next few days. It completely throws me off, it is so draining. If anyone reading this has ever suffered from an anxiety attack, you know how exhausting they are. This is how I have felt after the last two lows. I still feel tired today, almost 24 hours later.

Lily's levels continued to jump around the rest of the day and night. It made me so upset to see that they were out of range all night. I feel defeated. Just when I had my first good day, it is followed by an awful one. But isn't that just life, making sure I know my place and don't get overconfident.

I try my hardest to not make mistakes, to be cool, calm and collected during different situations, but I am not perfect. I am still learning so much. I am still juggling so much and trying not to drop any of the balls. I truly am drained though. I cannot wait for the day that I feel like myself, or whatever is left of her. I just want to wake up and not be in physical pain. To wake up and not feel like I need a nap. To wake up and be happy about anything other than seeing Lily. I have no motivation for anything but her, my whole self is going to her. Any extra energy is being stored for emergencies to give to her. How long does this last? How long until I want to get dressed and put on some makeup again? One month doesn't seem like long, but boy has this past month felt long.

I will find the time to rest, I will figure out what it is I need to feel a little better and I will ask for help when needed. I will get better, because just caring for Lily isn't enough for her. She needs me to be there for her and to be there for myself, this month and every other month. We have a lifetime to go baby, and I am here for every minute of it with you. I'll be there to take whatever I can off you, to bear the pain you can't, and to bring you happiness when I can. One month down, one lifetime to go. xoxo T1D Mommy