Diabetes Update Week Two

Well this has been an interesting couple of weeks to deal with the diabetes in the midst of a worldwide pandemic.  But, we are thankful and grateful for the gifts and love the Lord has bestowed upon us in so many ways. I just needed to write about the high’s and lows of the last few weeks for my own sanity saver.

Crazy that Rachel currently has 20 MEDICATIONS a day that she takes after we added in the two types of insulin. PRAISE the Lord for medication. But our already full medicine cabinet just had an increase of insulin pens, alcohol wipes, ketone strips, boxes of lancets, boxes of needles, and a few other things.

If there was a time to have to “learn” something as complex as diabetes with someone that has cf…being stuck…I mean SAFE at home is a blessings.

Rachel has rocked this new challenge LIKE A ROCKSTAR!  I will be honest the first time we gave shots, I didn’t tell her, but my hands were actually shaking.  So hard to purposely hurt your child (although most don’t hurt her too bad, there have been a few places that have really hurt and hurt for hours after.  Needless to say we haven’t stuck her in those spots  twice.)

Rachel is taking about four to five shots a day.  Last week we were on “clean up” dosing which meant that we only dosed her on the food that she had eaten (whatever her numbers were we would add insulin based on those numbers).  This resulted in high numbers most of the days, and evenings. There were times that she would see the numbers and think that she was going to “die” or have to go to the hospital at the least.  She now has some confidence that those crazy high numbers are not great, but not as scary as once believed.  We just need to keep working to get the numbers down, while bringing up her weight.

The end of last week we started dosing her on “clean up” carbohydrates as well as the carb count for the food that she was going to eat.  This has helped her numbers stay out of the 400’s. Those high’s we now are understanding are when she looks like she can hardly keep her eyes open.  Her eyes get blurry and she doesn’t feel great. YIKES! Hence we have since adjusted another two times this week.  From what I understand it is a constant process of adjusting to try to get her in the range while still allowing her to gain weight with Cystic Fibrosis as she needs the higher calories to keep her lungs well.

So far the hardest challenge has been trying to figure out what she is going to eat and how much of it.  For someone who doesn’t have a great appetite most days and is pretty inconsistent with food, this has been a struggle.  Not to mention trying to calculate EVERY SINGLE THING she puts into her mouth. I won’t like, this has been CRAZY HARD!!!! Mostly because when we are ready to eat, it’s like herding cattle in our home to get all 6 of us to sit down for meals to start with and then, we are trying to figure out her blood sugars with a finger poke and then the carb count so that we can dose her the insulin before she eats.  To say that part has been chaotic is likely an understatement! I know we will get it figured out, but…the learning curve is pretty high right now.  Add to that we are pretty tired from getting up in the night to check blood sugars.  That process is fairly quick, but for both Paul and myself, once we are awake, it is hard to get back to sleep for several hours at times.  Again, I suppose that will get better at some point too.

One of the kids favorite things lately has been iced coffees. Crazy that an ordinary one of these from Starbucks has somewhere around 60 carbohydrates. So, with whipping cream and a sugar free creamer, Rachel can have one of these with about 8 carbs and still get the 250 calories she needs for absorbing one of her mediations. Thankful for these little victories.

So far there have only been a couple of really hard days.  Saturday morning was one.  We had pancakes for breakfast and she LOVES pancakes.  It’s one of the few breakfast things that she will actually eat.  Anyway, I asked her to help calculate the carb count and she couldn’t find anything that was close to the mix we had.  She was getting frustrated, I was getting frustrated and I know she was really hungry.  Finally she tossed her book and ran out of the kitchen yelling, “FINE!  I just won’t ever eat again!” My heart broke for my girl.  This has to feel like yet another noose around her already difficult life of dealing with health issues.  I have talked with many diabetics and they talk of the constant vigilance that managing this disease requires.   CF ALONE is exhausting!!  The one thing that is good about cf is that they are constantly being told to EAT!!!  GAIN WEIGHT!!!  EAT SOME MORE!!  Now the one stable thing in her medial care has been altered, likely forever!  Since Rachel was 10 days old with the diagnosis of cf every single time she has eaten anythign that has fat, protein or complex carbohydrate she has had to take enzymes.  The only time that she had a pass on that was with simple carbohydrates, most fruit, fruit snacks or drinks.  NOW EVEN THAT HAS CHANGED!!  Not, there literally is not a time that she can eat without having to do something.  CAN YOU IMAGINE how hard it is to shift that thinking again.

Anyways, Saturday after Rachel ran out of the kitchen I went and found her she was sitting on the couch with a very angry face.  I had her get up, nearly lifting her up and guided her back into the kitchen.  She was MAD!!  I actually kind of play wrestled with her to get her to smile, but instead she burst into huge frustrating sobs.  We sat on the kitchen floor and cried together!  I told her how very sorry I was that this was yet another very difficult thing that she would have to endure.  I also told her how incredibly proud I was of her grit, determination, and ability to just keep moving.  BUT…that it was COMPLETELY okay to be mad.  It was expected that she was frustrated.  It was even understandable that she felt like things just weren’t fair and why did she have to figure out another complex medical issue.  We cried some more, then finally stood and got to work figuring out how to calculate the carbohydrates for the pancakes, and then what she could have for syrup.  I think it was vitally important for her to hear that we understood this was tough. Add to that, after she did all that she needed to do for diabetes and eating, she had to take a huge handful of pills and then still go and do 45 minute of CF lung therapy.  HOW HARD!!

I actually read a post from a very respected friend that has cf the other day.  She spoke of how having cf her whole life was tough.  Having had two double lung transplants, and cancer several times…she said that some days CFRD (Cystic Fibrosis Related Diabetes) was one of the toughest things for her to deal with on a daily basis.  The balance between eating enough healthy carbohydrates to keep her lungs healthy with the add weight needed to fight cf, and the struggle in trying to keep her blood sugars in range to keep her body well with diabetes was hard.  It was very eye opening for me as this sweet friend is INCREDIBLY strong, one of the fiercest people with cf that I know. For her to say that she felt like breaking from this CFRD addition to her life was tough to hear, but also very helpful.

One of the other scary things have been when I miscalculate her insulin dose. It has happened once so far (I am sure that it will happen again, but I really have a perfectionistic mentality when it comes to medical care, so it’s hard to accept anything less than excellence in myself).  The other morning I figure out what Rachel was going to eat and then dosed her accordingly.  However, as I was writing it down in her log book after the meal, I realized my mistake. I gave her twice the dose that she needed for what she ate.  I looked at Rachel and told her she needed to eat another 40 carbs and quick. My girl did not miss a step, I think she saw the fear in my eyes (if those sugars go too low because you have given too much insulin the person can drop to a point of not being able to function or respond. Rachel ate a banana and something else in no time flat.  Kind of made me chuckle later.  For a kid that doesn’t love to eat, she “scarfed” that food down QUICK!!

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In a strange way, the pandemic has helped not to make diabetes a complete focus on our minds right now. We have worked on making masks for our neighbors and others that we know (we have quality masks for Rachel and our family that we purchase each year and use on a regular basis for hospital trips). Good to think of ways to help those around us.

Thank you for the many prayers.  WE HAVE FELT THEM!!  While the learning curve has come with much heartache and challenge, there has been so much good in this process.  Life being slower is one of the greatest blessings for us.  Although we struggle with it just like everyone else and miss our friends, routines, and activities like crazy, I can’t imagine trying to figure this out with our normal chaos.  The other day we went for a hike.  It was warm so we had to think of all of the normal cf things with salt/dehydration but also the sugar issues.  Bringing the blood glucose monitor, the insulin pen, and snack for numbers that were high, and for ones that were low.  =0 Again, we will get it figured out…but pretty grateful for this time at home to slow down and just try to focus on understanding yet another very complex part of Rachel’s life.  This week we are scheduled to get the Dexcom G6 to start monitoring her numbers a little differently.  It is a device that is “stuck” into her arm and will be worn everyday and night.  We should be able to tweak her dose of insulin a bit better with this piece of technology.  Please pray that her body is able to deal with it well.  Specifically her skin allergies to adhesives and just the irritation of having another thing that reminds her that her body is not like everyone elses’s. God is ABLE!!

I was thinking it’s kind of funny IF we were having a cf walk this year, and if we were doing shirts…I have the perfect shirt for this year.  FIERCELY~ SWEET & SALTY!!  (Sweet for the blood sugar issues and salty for the cf salt on her skin, and fierce because she truly has more grit and perseverance than I will ever have.

Love you all and thanks again for the prayers. God is working and He is good.  Hope you have an amazing week this week and a Easter that is not only unforgettable, but simply beautiful.