5:15 AM (or as soon as I am awake)
I go into Alex's room and literally make sure she is breathing. I know the odds are with me that she is but I can't help but worry every day that I didn't catch something and she'll be very low or God forbid not breathing. I wonder if this feeling will ever go away but it hasn't at all since we came home from PCH. As long as she looks good and responds to me I let her sleep longer. If she looks clammy or doesn't act normal, I immediately poke her finger and check her blood glucose level. Her target is 150. A "normal" range for Alex is anywhere from 80 - 150. If it's under 80, she is "low". If it's over 150, she is "high". 6 weeks into this, she is usually higher than target in the morning, somewhere between 160-170 when she isn't sick.
|Alex's Blood Glucose Meter |
The poker with the needle is the device on the left.
Fill one of the little half black circles on the strip with her blood each time.
I go back into Alex's room and let her get up and get dressed and I run to the kitchen to ready her breakfast, blood meter and insulin shot.I pull out breakfast - usually eggs, bacon, vitamins and 1 cup of milk which must now be measured (no eyeballing the cup anymore). This meal equals 20 carbs which then equals .5 unit of insulin to eat. Her carb ratio is 40:1. So 20/40 = .5 and that is how we determine how much insulin she needs to eat this meal. Her vitamins are factored in - those gummyvites are 8 carbs for 4 of them. I write down all her breakfast items in a spiral notebook dated with today's date at the top. I write on her blood glucose level (BGL) log sheet today's date, the meal she is about to eat, the time she is eating. Alex is dressed and comes out to wash her hands. I then poke her finger. If she is in a good mood, she'll ready the meter. The only thing she won't do is poke herself. She always reminds me to count to 3...one...two..three...POKE! Blood is flowing and Alex has said "owwww". We squeeze and put the blood on the meter. The meter gives us her BGL. Her target is 150. Let's say this morning for example she was 216. Now I use the ISF (Insulin Sensitivity Factor) to determine how to correct here high BGL. Her ISF is 150/75. So...216-150 = 66. Then...66/75 = .88. Am I done yet? Alex wants to eat! Her eggs are getting cold. Nope...Now I must add again - add .88 to the .5 for the food and get 1.38. That means she'll get 1.5 units of insulin in her shot.
|Myriads of log sheets and her food journal. Logs are faxed to the|
endocrinologist once per week for review. We've had lots of changes since diagnosis because
so far her BGLs have been all over the place!
I go grab the insulin out of the fridge. I wipe the top of the cap with alcohol. I draw 1.5 units out with a syringe. I make sure there aren't air bubbles. I have told Alex at this point to start eating. I go over to her as she eats and give her the shot either in the arm or the leg. I wipe her arm with alcohol. I push in the needle...one...two...three...IN...push in insulin and count to five...one...two...three..four...five...out...I dispose the needles in a empty plastic gallon milk container now under our kitchen sink. It's almost full just a month after her diagnosis.
Alex eats her breakfast. I then proceed to pack her school lunch. Hot Dog (no bun); ketchup; peaches; pretzels; sugar free pudding; reduced sugar juice pouch. I list all items on a piece of paper with today's date. I note the total carbs at the bottom...43 carbs. 43/40 = 1.075 units of insulin. I include the paper in her lunch bag to take to the school nurse who will test her at lunch and administered insulin the same way we did at breakfast.
7:20 AMAlex takes the bus to school. If she is low, I test her blood one more time before she heads on the bus. She has a key chain with glucose tabs and a gel tube in her backpack. She wears her Medical ID bracelet and her brother keeps one eye on her (we hope) while on the bus ride.
Alex heads to the health room. The nurse will test her blood and administer a shot for her lunch and also correct her BGL if it is still high. Alex then takes her lunch to the lunchroom to eat. After lunch she returns to the health room to show that she has finished her lunch. If she chooses not to finish something, she must have something else with equivalent carbs. Because she received a shot for a certain amount of carbs she MUST eat that amount of carbs or she could get a low BGL reading.
Alex heads to the health room for a blood test. It's almost time for recess. Alex must have a blood test before any physical activity. If she is under 90, the nurse will give her a low carb snack. If she's under 80, she can't go to recess. She must eat a snack in the health room and wait there 15 minutes. Then she'll be tested again. If she is still low, she'll have another snack and I'll get a phone call from the school. If she is low a third time, most likely she'll come home from school. We've had her have lows at recess about 5 times in the the 4 weeks back to school. So far she has never had to come home. We've had her had to be walked to the health room shaking and pale and obviously effected by a low only once so far but just that once was scary enough to me. She was mad she had to miss all of recess with her friends.
Alex heads the health room for the last time. The nurse will check her BGL before putting her on the bus home. If it's under 90, she'll give her a low carb snack. If it's under 80, I'll get a phone call to pick her up as opposed to putting her on a bus. So far she has had a 90 but never a real "low".
If it's a karate day like today, Alex will have a blood test and a 15g carb snack. As long as she is not too low, she will head to karate for her 50 minute class. I make sure we carry a small insulated back EVERYWHERE we go...that bag contains:
- Blood Glucose Meter, lancets, strips
- Several 15g snacks to treat lows
- Glucose tabs and gel to treat severe lows
- Glucagon - an injection of glucose for an unconscious diabetic to treat the worst kind of low
- Alcohol Wipes
- Cotton Balls
- Insulin in a fridge pack
- A few free foods under 5g - in case she is hungry but not low or if someone offers snacks that are over 5g and she doesn't want a shot - she can eat one of her own snacks as a substitute
- Carb Counting Book which lists carbs for all foods and many restaurant items
|Alex's Diabetes Bag - full of everything she needs whenever we leave the house.|
I fix dinner in the same manner as breakfast. I must measure all items and write it in her meal log book. I then test her blood and perform the math needed to come up with the amount of insulin needed based on her BGL and the carbs in her dinner. One...Two...Three...POKE. Alex has her insulin and now she can eat her dinner.
We are getting ready for the most dreaded of all insulin shots...Lantus, the long acting insulin she gets once per day. She hates this shot because she says it stings going in and there is more of it than the short acting insulin she gets the rest of the time. We must have this shot ready at 8:30 every evening. I get it out at 8:15 and draw it in the syringe and let it warm up a bit because that helps. Alex lays on my bed and usually she runs aways at the last minute. Joe or I have to call her back a few times. Then we have to convince her to give us one of her legs. On a good day she'll just whimper. On a bad day she'll scream and cry and tell us we are hurting her and to stop and she doesn't care if she gets sick or dies. Just leave her alone.
|The dreaded Lantus and one of her syringes.|
With the lantus on board, we return to the kitchen to do one more blood test. If her number is above 180, she'll get yet another shot to correct the high number. If it's below 90, she'll get a 15g snack. She prays it's a low number every time. Most days it's high and she needs yet another shot a few minutes after the Lantus with the shot acting insulin. If this is the case, she'll go to her bed and hide under the covers. I'll come in with the shot in hand, a bottle of water, and a cotton ball. I'll convince her to give me an arm or a leg and give her this final shot. Then I'll rub her back and wipe her tears and tell her good night. I'll tell her I'll see her around 12:30 - 1 AM.
I'll leave and put everything away and finish writing out her log book. Then I'll lay out her meter for the middle of the night check. If she is under 150 at 8:30, I'll be sure to poke her at 12:30 - 1 AM to make sure she isn't too low. If she was over 220, I'll also poke her so I can give her a correction in the middle of the night to bring down the high number. I promise her I'd wake her before poking her. She doesn't like to be awakened by the needle stick. She'd rather I wake her first.
I'll go check on her. If her number was between 150-220, I'll go just check on her and feel her forehead and most times she pops up since she's a light sleeper. I kind of gauge her and determine if I should poke her or come back at 5 AM. The middle of the night testing is the most turmoil for me - the endocrinologist says it isn't only required if she is sick. Otherwise, it's at our discretion to check and how often. I have yet to meet a parent who doesn't check every night. People tell me stories of diabetics who passed away in the night because of a low blood sugar. I find stories online and see real people and real kids who have died. I find it isn't as uncommon as you would think. So I check...even if I'm super tired and don't want to deal with her screaming. If she was under her target of 150, I poke her for sure. I've only had a few times that I have found her under 90 and in those cases I go find some sips of juice or like 5g of fruit gummies and have her eat them half asleep. I have yet to find her with a real true low. In fact the lowest number we have had this far is 65. I fear that day because I have yet to meet anyone who hasn't encountered it. If she is over 200, I give her get another correction shot. This has only happened when she has been sick (which has been most of the time since she left the hospital). I am betting they are changing her ratios and such when we go to her 6 week follow up this Friday because she is still running high more than average.
And this is a normal day in our life. If Alex is sick and running high or having lots of lows in a row, there are more shots, more blood tests, urine tests to check ketone levels, and more interaction with the doctor's office on what action to take.
It doesn't end. It isn't just about watching what you eat. It isn't about eating sugar free. It is about being your child's pancreas in a strange way. It doesn't do the work. So we must do the work for her pancreas until a cure is found for this disease.