Posts Tagged With: Type 1 Diabetes

Diagnosis Diabetes: After a Year

025It’s actually been a year and almost three months since the 12 year old was diagnosed with Type 1 Diabetes.  A year and three months of shots, insulin, blood testing and Those Infernal Glucose Test Strips scattered all over the floor.

He swears he puts them in the trash can.  But there they are, on the floor, stuck to the bottom of my shoe, under the couch.  I have even found them inside my book bags. And of course, as I mentioned in a previous post, once in my salad.

Our floor has also been carpeted this year with the paper seals from insulin pen needle cases, and the little green caps from pen needles (which, just for the record, hurt JUST as bad as a LEGO if you step on them barefoot), and occasionally the needles themselves (I think we have already established that those hurt worse than LEGOS).

We had some real fun back in August, when the 12 year old left his insulin pen in its case on a bench at an outdoor mall, and five minutes later, when he ran back to get it, found the case, but no pen.

At least it didn’t have a needle attached to it, so whoever took it couldn’t have given him or herself a shot, because that could have been really, really bad, if not fatal.  But seriously, what kind of person takes an insulin pen that they find on a bench?

A month ago, the 12 year old was finally put on an insulin pump.

<pause for heavenly music and rainbows>

No more pen needles!  Only one needle every three days instead of 5-6 shots a day!

The blood testing remains a constant, however, 5-6 times a day.  So the Infernal Test Strips are still the bane of my existence.

The pump gives him a steady supply of insulin throughout the day, as well as delivering extra when he reports that he is about the eat carbs, so overall his blood sugars have been much more manageable.

Everything is wonderful.

027Well, EXCEPT FOR the times when the pump doesn’t work.  It can be bubbles in the tube, or the catheter (infusion set) not being set correctly, but when the pump fails to deliver insulin, it gets very bad, very quickly.

A week after he got the pump, there were bubbles in the delivery tube, which meant he wasn’t actually receiving any insulin. His glucose number was so high then the meter couldn’t read it. That means it was over 600.  Normal is 80-150.  Very bad, very quickly.

Although we gave him an injection of insulin and brought it down right away, he ended up with such bad stomach cramps at 6 a.m. the next day that I called 911 for the first time ever.  By the time the ambulance and paramedics arrived, the stomach cramps had lessened enough that they let us drive him to the ER instead of giving him a $1000 ambulance ride (phew).  And by the time we got to the ER the cramps were pretty much gone, so after some tests, they sent us home.

But still, the neighborhood appreciated the excitement early in the morning.  I know this because the 8 year old from across the street called me, much to her mother’s chagrin, in the middle of the excitement (no fewer than 9 people in my tiny living room) to ask me why the ambulance was outside our house.

And then there was the other day, when he rolled over in bed at 6 a.m. and knocked the infusion set out of his side, and then shoved it back in (all the nurses reading this scream “Noooo” in unison) and taped it in place with medical tape. He got up at 8:30 a.m. and told me “Oh, Mom, by the way, I don’t have any infusion sets left,” so I called the pharmacy, only to be told us we couldn’t get any more that day because the insurance company wouldn’t pay for more until the following Monday, six days away.  Just then he came out of his room and said, “I guess the infusion set isn’t working right after all, so I’m not actually getting any insulin, because I just tested my blood sugar and found it was over 500.” Well, that’s just an example of spectacularly bad, very quickly.

Diabetic supplies sharing the table with Halloween candy... the new normal.

Diabetic supplies sharing the table with Halloween candy… normal around here.

The day was saved by Shelley, our rep with Roche, the pump manufacturer, who drove over here that afternoon, in the RAIN (again, a big deal, here in So Cal this year), to drop off a couple of infusion sets to get us through the next few days.  Luckily the 14 year old had just baked some gluten-free cookies and we were able to share some with her.

All this to say, if you are diabetic and are considering a pump, we highly recommend the Accu-Chek Combo System.  Especially if you live in Southern California, because then you might get the World’s Best Rep, Shelley, who delivers miracles with or without cookies. 🙂

And that if you do get a pump, check for bubbles in the tube.  Often.

And also, that even with a diagnosis of Type 1 Diabetes, life goes on.  After a while it stops being the “new normal” and just becomes “normal.”

And that life with diabetes is nothing, if not interesting.

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Diagnosis: Diabetes. No Filter Friday

Since it’s No Filter Friday, I will not attempt to write all these thoughts into a “piece,” but will instead simply categorize the list as

Everything I Said On Facebook About Living With Diabetes That Didn’t Get Made Into A Separate Blog Entry.

October 11, 2013
Ryan is doing really well.. probably will go home from the hospital late tomorrow. In the meantime, Alan and I have received so much training about levels and dosages that our late night texts to each other consist of equations. #NerdsRule

080October 14, 2013
Determined to give himself the next shot, Ryan carefully prepared the syringe and then dropped it. It impaled itself in the hardwood floor and there it stayed, quivering. Well, if you’re going to drop your medicine, it might as well be cool.

October 15, 2013
Apparently the new diabetes regime is not enough for my brain to keep track of, because it has started inventing new, vital tasks that must be done daily and showing them to me in my dreams. Which is why I woke up at 7 a.m, clutching my phone, saying, “We have to do something at 7 every day. What is it, Alan? What is the 7 o’clock thing?”

October 16, 2013
So I now know two things: 1) It’s not a good idea to try to dispose of lancet needles in the dark at 2 a.m. and 2) Lancet needles are sharp. At least I got a good draw off it. Too bad I didn’t need to test my blood.

November 1, 2013
For dinner I picked tomatoes out back to put in a salad, and as I put a serving of salad on my plate I could have sworn I saw a pincher bug run across the plate.  I quickly lifted the salad up and found a blackened, wilted piece of lettuce, but no pincher bug, no matter how hard I looked.  So I convinced myself I had just seen the dark piece of lettuce falling onto the plate, not a bug or anything, and made myself eat it, tomatoes and all, because I just went out and picked them so I was darned well going to eat them.  And then, when I was close to being done, I looked down on my plate and found one of the test strips from Ryan’s glucose meter in my food.  A USED STRIP.   AAAAUGH.   Needless to say, I stopped eating.

January 21, 2014
Everyone is always going on and on about how painful it is to step on a Lego. I used to agree. Until I stepped on an insulin pen needle. #IWin

Categories: Diabetes, Family | Tags: , , , | 1 Comment

Diagnosis: Diabetes – For those of you who are Visual Learners …

A good in-a-nutshell about Type 1 Diabetes.

Eden's Effort

I found this terrific Infographic the other day so thought I would share…

Not all of us find it easy to learn with a bunch of words on paper (or a computer screen).

Hopefully this might help a few of you out there – please SHARE to help EDUCATE…

infographic

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Diagnosis: Diabetes. Nurses – My New Favorite People.

Don’t get me wrong.  Doctors can be pretty awesome too. But the nurses we encountered at Miller Children’s Hospital were amazing.

I know, I know, I sound like a PR campaign, but if anyone made the transition easier for us into this new lifestyle of Type 1 Diabetes, it was the nurses.

Up in the PICU, they kept telling us about the “awesome nurses down on the second floor,” who would be training us about diabetes.  But the thing is, these PICU nurses loved their jobs so much, they just couldn’t help themselves. They went ahead and showed us the ropes.  One nurse brought in a bunch of different syringes and, apologizing that it wasn’t really her job to do this, proceeded to explain how they all worked and what the measurements were and how to remove bubbles from them and how to dispose of them, just because she “loved this stuff.”  It was her job, and she had a chance to talk shop with some willing listeners.

Nurse BrianShe went off duty and Nurse Brian came on.  I remember his name because he was the nurse for the two boys in the room, both of whom were named Ryan.  We had fun with that. And he not only showed Ryan how to lance his finger to get a drop of blood to test, but made him do the math to figure out what the dosage should be.  And then, when Ryan got that math right, he gave him a hypothetical number and asked him to figure out the dosage if that were the blood sugar.  Word problems from a nurse in the PICU. The homeschooler in me cheered.  He even told him to show his work (while Mom did a fist pump behind Ryan’s back).

And then he handed me the needle and said, “Okay Mom, you do the shot.”

I have never shot anything before.  Other than with a camera, I mean.  But sticking a needle into someone’s skin, on purpose? Especially on my sick baby?  My sick 11 year old “baby,” who is taller than me, granted, but still.  I had no idea how to do it but there sat Nurse Brian and Ryan, looking at me expectantly, and I realized I had a choice.  I could freak out, which would communicate to Ryan that this was scary and awful and wrong, or I could just suck it up and stick the needle into his arm and get on with it.  Because this was not going to be the last shot I gave.  So I did.  Grabbed it like a dart and jammed it into his arm.

Diggin' Myself a Hole

The Fence Post Hole Digger

Well.  Apparently I have watched too many episodes of Gray’s Anatomy.  Nurse Brian winced and said, “Oh, um, you don’t need to drive it in.  You just stick it in.”  Ryan did a little more than wince.  The shot I gave was a good intramuscular shot.  We were aiming for subcutaneous.

Croquet

The Croquet Hoop

Think fence-post-hole digger as opposed to a crouquet hoop.

Still, at least it could only get better after that first one.  Although Ryan did wrap his arms around himself and declare, “You are never allowed to touch me anywhere ever again.” But I’m sure that was the blood sugar talking.

The next day, Ryan was moved into the care of the “awesome nurses on the 2nd floor.”  And they lived up to their name, but they were quite surprised with how quickly we caught on to the diabetes stuff.  I don’t remember if we let them in on the fact that the PICU nurses had already been over it with us.  So they probably think we’re all just geniuses, and that’s okay with me.

The day after that, we had three nurses.  Two were student nurses from California State University at Long Beach.  It made me want to go back to school, just seeing how eager they were to help, to learn, to become medical professionals.  By the day after that, Ryan was in such good shape, he was asked by another student nurse if he would be a test subject for a demonstration.  The student needed to pass a hands-on exam to show that he knew the correct procedure for a head-to-toe physical assessment.  Ryan agreed, and the student nurse came back a few minutes later with his instructor to do the test.  However, he had been banking on just Ryan and Dad being there, not being privy to the fact that two sisters and a mother were on their way back from the cafeteria.  So when he walked in the room he blanched visibly and said, “Oh, I didn’t know I would have an audience.”  Poor guy was nervous enough, but we made it twice as hard.

He did well, despite the fact that he stumbled a little when rattling off the lymph nodes.  I had no idea the human body had that many different lymphatic glands.   Well, maybe it doesn’t; he was stuttering a little.  At any rate, when it was over, the family gave him a round of applause and voted to pass him with flying colors.  I don’t know if the instructor took that into consideration, but he came back later, beaming from ear to ear, to announce that he had passed and to thank us for allowing Ryan to be his victim… er… subject.  He was a bright young man, and very personable.  I’m sure he will go far.  And the fact that he was able to display such grace under pressure as to pass that test under the watchful eye of no fewer than four family members may indicate that he has a promising future in ER nursing.

By the time we were sent home, I was genuinely sorry to say good-bye to the staff.  They had been our guides on our first shaky steps down this journey, our support, our safety net, our teachers and our cheerleaders.  And it hit me hard, as we left the hospital, just as it had 19 years before when we left the hospital with our first newborn child, that they weren’t coming with us. I had become quite adept at giving shots by then, and Alan had started out being adept, what with his classical guitar-playing, artist background, which had apparently developed far greater fine motor skills for him than my Keith-Greenesque piano-banging did for me.  Even big sister Emily had given a few shots.  And all that complicated dosage math?  I could do it in my sleep.  This year, my homeschooling/tutoring duties require that I teach 6th, 8th and 10th grade math, so I was up to speed on all the subtracting, dividing and ratio skills I needed.  I worked long division faster than the nurses could input the numbers into their calculators.

But the question still loomed, What If Something Goes Wrong?  As we walked to the car, I mentally reviewed the training notebook I clutched in my hands.  We had numbers to call.  We had a sheet that told us symptoms to watch for. We had two different blood glucose monitors and a whole box of insulin, not to mention some 8mm syringes.  We even had a red case that carried an emergency super-glucose dose in case Ryan passed out from low blood sugar.

But most of all, we had the assurance of all the trainers and nurses that we really had learned what we needed to know, and that we would do fine.  So just as I did when I gave that first shot, I chose to suck it up and get on with it.

Only this time, I was determined not to dig any fence post holes. Metaphorically speaking.

Categories: Diabetes, Family, Homeschooling | Tags: , , , , | 2 Comments

Diagnosis: Diabetes. The First Week

ambulance transport

Somewhere underneath all that equipment is an 11 year old boy being loaded into
The Cadillac Of All Ambulances

Our family has been taken down a new path recently. It started with our 11 year old, Ryan, feeling unwell for a week or two, which culminated in a day of throwing up.  We just figured it was the flu, but by the end of the day, he was still throwing up and looked terrible, and had started having muscle cramps in his chest.  It was the muscle across his rib cage, so I wasn’t concerned about his heart, but it was so obviously painful I thought perhaps it was a sign of severe dehydration and took him to Urgent Care.  The receptionist and nurses there took one look at him and advised we just take him straight to ER and save ourselves the co-pay, since they were pretty sure the doctor would be sending him there anyway.

On the way to ER he was petulant about the sun in his eyes, the length of the trip, his need for a drink, over and over.  My 11 year old had degenerated into a 4 year old.  I knew something was up.  So I prayed all the way there and kept a patient tone in my voice.  At one point I felt reassured that he would be fine, but also felt that this was not a quick fix.  We were headed for a journey, but one in which the Lord was going to use Ryan to bless others.  And while it wasn’t going to be the road we would have chosen to walk down, it was going to be okay.

So when we got into the ER, said the magic words “chest pain” and got whisked immediately behind the doors, I should not have been surprised when the doctor came back within minutes of his initial introduction and blurted out, “Bad news.  He has Type 1 Diabetes.”  But I was.  Diabetes?  That doesn’t run in either side of the family.  I just blinked at the doctor while he hovered above me, bouncing slightly on his toes.  What then ran through my head was the thought that maybe this doctor was mildly Aspergers. He was not the best with his bedside manner.  He seemed to be lacking social cues and had strange body language.  But then, we’re all closer than most to the Aspie end of the spectrum in my family, so this didn’t bother me. To the contrary, it reassured me.  It told me this guy was completely focused on his medicine and knew what he was talking about.  Maybe that was a jump to a stereotyped conclusion, but it worked for me.  I blinked again.  Diabetes.  Okay.  So that’s what we’re doing now. I had a vague idea that this would involve shots.  We’re not medical in our family.  We don’t do shots.

Well, okay, I thought, I guess we do now.

And the next thought was “But we’re not giving in to it. We’re not taking on the cloud of dire, life-threatening illness and wearing it like a shroud.  We will walk down this path, but God is still God, which means He is the Great Physician, and His power is greater than any disease.  And He can call this game any time He chooses.”

I know this for a fact, not just as a matter of faith.  Four years ago, He healed me of an autoimmune disease I had had for 25 years.  Almost two years ago, He healed me of a mysterious ailment that the doctors never did figure out. But those are stories for another post.

Within hours we were in an ambulance, being transferred to Miller Children’s Hospital in Long Beach.  I had a nice conversation all the way there with the ambulance driver, about kids, game-changing moments, what kinds of messed-up things you see when you work in the medical field and how well you can get inured to it over time, Haiti, voodoo, the spirit realm and how we don’t need to be afraid of demons as long as the Spirit of God dwells within us.  I’m pretty sure it wasn’t his normal chit-chat with a mother who has just been handed a diagnosis for her son.  Then again, everyone deals in different ways, so perhaps it was.

Ryan was sitting fairly happily on the gurney in the back, being fed IV fluids, which helped a lot, although it didn’t do anything for that diabetic dry-mouth that comes with a blood sugar of over 400 and ketones off the chart.  The nurses in the back kept him happy by showing him Madagascar on the DVD player.  This was my first clue that Miller Children’s excels in meeting the needs of children.  I was so grateful.  Except for the part where the song, “I Like To Move It, Move It” got stuck in my head.  It was nearing midnight at this point and I had been up since 3:30 a.m., so I was exceptionally open to ear-worms.

Into the PICU at Miller we went, met more incredibly awesome nurses and a couple of doctors, and I was introduced to the chairs-that-fold-out-into-beds-for-Mom-to-sleep-on.  My friend Cynde, whose daughter Yverline has multiple medical issues and has logged a lot of time in children’s hospitals, has many colorful adjectives to describe these beds.  The most repeatable one is “medieval torture device.”  At any rate, I was exhausted and once the nurse had pulled the confangled thing out into its proper bedishness, I fell asleep right away, dreaming of lemurs.  My husband Alan had to hold it together a little longer than I did and navigate the freeways home.  Turns out I actually got a better night’s sleep than he did.

And so began our crash course in Diabetes. After four days in the hospital and a number of intensive training sessions by nutritionists, diabetes experts, nurses and physical therapists, we knew all about carb-counting, insulin shots, blood sugar levels, ketones and which of the puddings in the cafeteria fridge to avoid at all costs (the banana.  Step away from the banana pudding with its luscious-looking whipped cream, cute little rolled cookie and promising cherry on top. It lies).  Alan became an expert in syringe sizes, and when we were sent home with bigger syringes than the ones we had used in the PICU, he spent a good two days on a crusade, making calls and demanding smaller needles.  Apparently 2mm can make a huge difference to the pain level of a subcutaneous shot, and he didn’t rest until he had a box of 6mm needles in his hand.

diabetes memeThus the new normal came to the Schmidt household. A normal that involves planning ahead everything that goes into Ryan’s mouth, perfecting the Elevator Pitch explanation of Type 1 Diabetes, packing syringes and blood glucose meters and insulin bottles and alcohol wipes and snacks in case the levels fall too low every time we leave the house. A new appreciation has arisen in my heart for the fact that we homeschool — as scary as the first few weeks have been, I am thankful that is hasn’t also included having to deal emotionally with handing the daily care of my Diabetic Newbie over to a school nurse that may not even be on campus full-time as he or she tries to cover multiple campuses.  Ryan is coping well, bouncing back with the resiliency of youth.  And while I am aware that his emotional reaction may be delayed until he is older and fully understands what this means, we will continue to treat this as what it is: the new NORMAL. Okay, we give shots now. Life goes on. You are still an awesome 11 year old.  You still have a role in the Christmas musical at church. And you still have math to do.

Speaking of which, the day that I reminded him to do the dishes and he threw himself backwards on the couch, moaning, “Oh! Diabetes!  Oh, my pancreas!”, I knew we were going to be okay.

Categories: Diabetes, Faith, Family, Homeschooling | Tags: , , , , , | Leave a comment

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