Wednesday, July 30, 2014

The Spice of Life

In the hospital, not much changes from day to day.  I choose my food from the same menu that I've now perused for more than seventy of my most recent meals.  There's no humidity, no wind, no warming rays of sunshine, and the temperature is always 67 degrees.  The shades go up and the shades go down, but any time past ten in the morning, the overhead lighting needs to come on.  My vitamins come right after breakfast and supper, my anti-contraction meds come every four hours 'round the clock, my shower follows the fetal monitoring, blood draws are an every-three-days treat.  Each day is a reasonable facsimile of the last.

But the staff members.  Oh, the staff members.  They provide the spice of life around here.

Perhaps my favorite is the Go-Getter.  She's young and fun, but she is motivated.  Go-Getter is planning a path to nurse practitioner, and she jumps for any opportunity to do something cool.  When the first nurse blows your vein trying to get in an IV, she calls another nurse who looks over your veins with uncertainty, and then that nurse calls Go-Getter.  Who slides that IV in no fuss, no muss.  Boom.  And then she raves about your juicy veins.  Gross?  Maybe, but all is forgiven in the world of IV successes.

SuperTech is a lot like Go-Getter, except she's a nurse technician.  A nurse technician who does the best blood draw in the tri-state area, is ever-vigilant to keep your water jug full, waits to change your sheets until after your crumby little children have visited, and just generally makes life pleasant.  She pumps up your air mattress pad on the regular, and you never hesitate to ask her to open or close your blinds, because she's just great that way.

The Chatty Night Nurse is lovely and so totally European.  She's more thorough than any of the other nurses, the only one that ever pulls out a stethoscope or checks the pulse in your feet.  Chatty Night Nurse wears shoes that squeak across the floors in the night, but it doesn't really matter, because she's got you up talking, anyway.  Whether it's the disorder she discovers in the bedside supply drawer or the incomplete information displayed on the dry-erase board, she's always got something to cluck about, something to tend to.  Chatty Night Nurse has a tendency to ask for a verbal response to her midnight bed checks and to require weigh-ins and blood draws in the pre-6AM hours.  With someone else, you might tire of that, but she makes you feel united with her in the drive for order and efficiency.  You mean that IV was flushed twice within a 12-hour period?  Hoo-rah!

The Bubbly Fellow finds herself working on the Fourth of July and dresses...like a sparkler.  Because, you know, some people might not get to see any that night.  Her words.  Head to toe black, with silver sequins exploding across her chest and shoulders, topped off with a hair adornment that sparkles and shimmies while she assesses your blood loss and orders magnesium.  She's the one you seek out when your back hurts after a couple weeks of bed rest, when you're wondering about a change in medicine, when you just want one more detail of the surgery plan explained more thoroughly.  She relates, she sympathizes, she problem-solves, and she has seriously impressive accessories.

The Bubbly Fellow has a counterpart in nursing, the Bubbly Nurse.  Bubbly Nurse wears hot pink clogs and also ascribes to your big hair beliefs.  She monitors your baby bedside and for twenty minutes, gives a running commentary about him lacing up his Nikes a little tighter this morning and being an athlete, an over-achiever, showing off for his mommy.  She calls his heart rate decelerations dipsy-do's and when she's not satisfied with the brand-new resident's assessment of the dipsy-do's, she runs the results down to the attending doctor, just to be sure.

The Circumspect Resident comes on a little more slowly.  She spends the first three weeks of bed rest showing up at your bedside every morning at 6:15, prodding your tummy with ice-cold fingers, inspecting your legs, running through a rote list of questions--all of which you regularly answer in the negative-- and then leaving without so much as a good-bye.  But after a couple days off, she shows up and tells you she's been thinking about you all weekend, hoping that things were still going ok.  And that just might bring a little sting to your eye.  After that, she never leaves without saying goodbye.


The Menu Planner works for food service, delivering the meal trays.  She seems to favor meat-heavy meals, or else she's got something against cheese.  Jury's still out on that one.  But if one day you dream up a way to divert from the ordinary menu and order macaroni and cheese as your entree, she will let you know--in a jolly way--that she thoroughly disapproves.  She thinks it's something her son might order, but you--YOU!--should not.  And if she happens to be the one dropping off your lunch of grilled cheese a couple days later, oh! woe to you.  Never have you seen a head shake so gravely.


Giggles is the housekeeper.  She comes giggling in each morning, greeting you with a giggle, replying with a giggle to your inquiries about how she's doing, giggling that she's just here to take the trash.  And then again in the afternoon, a knock at the door is followed by a giggled announcement that it's time to sanitize the room.  More giggles about the dirty lunch tray and any towels that might be in the linen deposit, and then a last peal of giggles as she wipes down the bed rails with rubbing alcohol and giggles herself into the hallway.

Nurse Matter-of-Fact is all business for the first couple of days she cares for you.  Perfectly friendly, but no personal stories, no inquiries about your life outside.  Just medicine and monitoring and routine checks, right on schedule.  But one day, she finds you in a mess of tears over a proposed medical plan involving a good bit of pain and discomfort, and she immediately tells you that that plan will need to be "reassessed."  And then she goes to bat for you with the doctors and the head nurse, and you overhear her describing you as "extremely reliable," "careful," "trustworthy."  And by the time she comes back, the plan has been changed to one that achieves practically the same result and involves no pain or discomfort, but more work for your nurses.  You cry in amazement and she wins a forever fan.  She also calls you "doodlebug" from there on out.

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A salute to all you hospital staff members out there!  You make a difference in each patient's day.  And when a patient spends a while inside, YOU are their spice of life!

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Thank you so much for all the prayers being said for our family, for all the kind and encouraging words you have offered.  We are truly overwhelmed by the love that has been shown our family...so many fun visits with friends, mail deliveries, play dates for the children, meals for the home crew.  So much love.  Thank you!  I hope to do the same for each of you one day.

Thursday, July 24, 2014

Still Here. 30 Weeks.

30 weeks today.  Cheers!


I've figured out that Fridays in here are tough.  I came in on a Friday, so each Friday marks another week away from home (three, this Friday).  Each Friday marks a week since the last time our family has been together.  Each Friday has been met with previously un-topped behavioral woes among the children.  Each Friday, it feels like I've been here a really long time, but still have so very much longer to go.

So, on Fridays, I cry.  The rest of the week, I usually do ok, except when Baby Girl glues herself to my lap at the end of their visit, and bawls to stay with me or for me to come home.  Or, when Buddy Boy's lip trembles as he asks Ten more days? and I just can't bear to tell him that it's so many more than that.  Or, when Little Guy has spent hours snuggled at my side, but weeps that he hasn't spent any time with me when it's time to go .  I cry then, too.  But mostly, just Fridays.

Mama and Nanny are earning stars in their heavenly crowns each and every day, managing my three rascals.  The children seemed to sense a power vacuum, once I was firmly established at the hospital and the Mister was back at his desk, and they each have been doing their earnest best to work their way up--through some sort of battle of the baddest, behavioral display of shock and awe-- to alpha dog status or something.  Their world has been all shook up, and I know that accounts for a lot of the turmoil, but it's been disturbing to see just how devious they can be without me around to enforce standards.  So, that's a challenge.  More for Mama, Nanny, and the Mister than for me.  But goodness, reality hurts sometimes.  And there's the tendency to feel like a failure.  How thankful I am to have people willing to see my children through this most difficult time, and to keep on loving them!

Oh!...how I wish I were there for Little Guy losing his first tooth.  The excitement, the milestone, the fairy visit.  


How I wish I were there to find the littles in bed together.


We are used to so much togetherness.

Most importantly, though, the baby is still cooking and, truly, THAT is what I am called to be seeing about right now.  I've had some selfish moments where I've thought, I wish we could just have the baby and start the path toward restoring our family life now.  But I snap out of those pretty quickly when I think of how very badly I hurt for Buddy Boy when he suffers from his conditions, and how very badly I would hurt for this baby if he were to suffer.  More time in this hospital bed makes his suffering less likely.  Baby is where he needs to be.  I am where I need to be.

There must be something all of us are meant to learn from this.  We just haven't fully unearthed it yet.

Saturday, July 12, 2014

The Days in Here

I've been here a little more than a week now.  I was moved to the high risk unit Sunday night, and haven't left my room--barely my bed, even--since then.  It's a very strange feeling to have no idea what the temperature is outside, or even what the hallway looks like outside of my room.  I've learned to tell some of what's going on by the noises that accompany...the dining cart rattling down the hallway at meal times, the laughter and hub-bub of shift changes, the sound of plastic wheels across carpet when it's time to bring the medicine-charting computer to my door, the swish of garbage bags when the housekeeper is making her rounds.  And the periodic intercom calls about Code Blues, Code Yellows, and Code Reds, often accompanied by the whir of rescue helicopter blades.  There's a lot that goes on in a hospital that makes you thankful you're not worse off.

The doctor told me to wear these leg squeezers all day and night, and that if I wanted a little break to just pedal my feet back and forth the whole time I had them off.  That didn't sound like much of a break, so I just keep them on.  The nurses keep commenting on how compliant I am about them.  Ain't nobody got time for blood clots!


Bed rest in the era of the world wide web has got to be vastly better than in the dark ages.  These are my lifelines.  I'm probably going to hit some limit for maximum number of allowed Facebook comments or something.  But until then, I surf...


The food is actually not too bad.  And hey, I neither cook it nor clean up from it.  


I'm working my way through all the menu options during lunch and dinner, but I've pretty much settled on a "regular" for breakfast.  Pancakes, eggs, and sausage, hot chocolate and a Diet Coke.  When I got to the hospital, I'd gained 18 pounds so far this pregnancy, which was waaaaaay less than ever before.  Now, I haven't moved in 8 days and this is my breakfast.  Not sure I'll be breaking any personal records any more.  Oh well, more for baby!



After breakfast, my IV site gets wrapped up for showering.  It's funny, no nurse does it the same way.  Some with way more success than others.  You'd think they'd standardize these things.


And then I spend a little time mooning over pictures of my babies.


And downing a few pills.  I get my anti-contraction medicine at 6 and 12, around the clock.  It really messed with my sleep at first, but I'm learning to practically keep my eyes closed through my midnight vitals check and pill.  Makes me think of how Buddy Boy sleeps through a lot of finger pricks and insulin shots.  Actually, I think a lot about what he goes through daily.  Bucks me up.


After the morning meds, we do a fetal non-stress test, to listen to the baby's heartbeat and check for contractions for about 20-30 minutes.  We also do shorter tests throughout the day.


The readings are printed out.


But I can also watch them in real-time on the monitor.  The blue line is baby.  The green line is me.  This day, I didn't have any contractions during the monitoring.  Yay!  I've been having a few contractions some days, but so far, they've been able to give me my next dose of medicine a little early and get things to quiet down.


I've enjoyed so many sweet visitors this week.  It really helps the time pass pleasantly.  And so do the magazines some of them have brought!

When I moved up here, I asked the Mister whether he thought it would be like the KD house.  He didn't.

They do have a social hour on Thursdays, which the ladies get wheeled down to attend.  But only if your doctor clears you.  No clearance for me this week.  Maybe next Thursday.  A friend said the conversations are bound to be a bit like prison talk...What are you in for?  How long you been in?  How much time do you have left?  Any priors?


Time for lunch.  See?  Not bad.


And then, the best part of the day!  Mama and the children arrive for their daily visit.


I get to hear all about their morning, and then we usually do something quiet, with them snuggled in my bed next to me.  I love it.


There's also a lot of adjusting of the hospital tray and smushing of the bed buttons.  They love to raise my bed {and me!} up above their heads.  So far, we've only earned one visit from maintenance and one from the electrician.  They said it happens all the time...


Baby Girl's favorite attraction by far is my water jug.  There's just something about Mama's water.


Their visits often end with a good many tears on their part and mine, so their little creations are nice to look at when they're gone.


And the most important part is that baby is still tucked away, growing and doing beautifully.  28 weeks now.  Grow, baby, grow!

Monday, July 7, 2014

His Yoke is Easy and His Burden, Light

Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.
Matthew 11:28-30


A sweet friend sent me the above passage from the Gospel reading for this past Sunday, and I've been resting in its truth ever since.

As I have shared here, my current pregnancy started without much hope, but turned into a miracle of life.  Miracles aren't always simple, though, I'm learning.  

In late March, at 16 weeks, I had a hemorrhage that led to the discovery that I have placenta previa.  In late June, at 25 weeks, I had another hemorrhage, accompanied by a little hospital stay, that led the doctors to conclude that I was at high risk for a dangerous complication called placenta accreta, due to multiple risk factors, including two C-sections and two D and C's following miscarriages.  Although they thought from the sonograms that I did not have accreta at that time, they recommended a follow-up on the accreta and modified bed rest due to the complete placenta previa.

So...I rested.  The children spent a lot of time snuggled with me, reading books and playing games, and we scrambled to get plans in place for the longer term, to allow me to spend as much time as possible off my feet.  



Those plans included my mother coming to the rescue once again, on the first flight from Alabama, and our lovely friend who has helped us in summers past taking on a larger role in the children's care.  It was so strange to go suddenly from being the one taking the children on adventures to the one receiving pictures of my children out and about.




But I think we all managed pretty well, and I was--and am--so thankful for the blessing of being able to entrust my children's care to people who love them and care for them so beautifully.

I had my first appointment with the high-risk obstetrical practice last Tuesday.  After almost two hours of songram and a 1.5 hour consultation with the doctor, Mama and I walked out rather shell-shocked.  The most important information was that the sonograms do show placenta accreta, and actually, it looks like I have the most severe form of accreta, called placenta percreta.  They can't be completely sure from sonogram imaging, but it appears that the placenta has grown completely through the uterine wall and is now at the edge of the bladder wall.  

The high-risk specialist explained that what this means for baby and me is that the best case scenario for delivery is now at 34 weeks, which would be August 21.  If we are able to make it that far, and have a scheduled delivery, then the plan would go as follows {if you're comfortable reading about medical procedures}: I'll receive an epidural in the morning, then be taken to interventional radiology, where they will thread balloon catheters through my femoral veins, to be used during surgery to reduce the bleeding.  Then, I will go in for a combination C-section and hysterectomy.  The Mister will be able to be with me for the delivery of the baby, and I will be awake for that time.  The high-risk obstetrical team will deliver the baby by using a vertical incision to about 4cm above my belly button and removing the entire uterus, which then will be cut from the top down the back side to get the baby out without cutting through the placenta.  The Mister and the baby will go straight to the NICU, and I will be put to sleep by general anesthesia.  Then, the gynecological oncology team will step in to perform the hysterectomy.  Gynecological oncologists are the surgeons most skilled at this type of surgery, because, as I understand it, they are accustomed to dealing with parts of the body having grown and attached in ways they weren't supposed to.   The surgeon will separate the placenta from whatever it has attached to outside the uterus (like the bladder) and repair that damage.  Then, I'll be sewn up and likely taken to the ICU for a couple days' stay, before being transferred to another unit.  Major blood loss is expected--I learned today from one of the doctors that the national average of blood loss for this type of surgery is 5-6 liters--so the blood bank is already prepared with matching blood parts for transfusion and that team will be in the OR, as well.

The doctors had explained that they usually follow a "three strikes and you're in" rule, as far as hemorrhaging and hospital bed rest go.  On the evening of the Fourth of July, I hemorrhaged again, so the Mister and I arrived by ambulance to my home for the next couple of months {at least, we hope it's that long!}.  It was found that I had had a small placental abruption and was showing signs of pre-term labor.  I spent a really gruesome, but ultimately effective, 36 hours on a magnesium sulfate drip to quiet the contractions.  The nurse they called in to cover my case was told that they were delivering my baby that night, so I am really thankful that that did not turn out to be the case.  Once I stopped contracting, I was put on an oral medication to precent further contractions and transferred to the high risk unit, where I will stay until we deliver the baby.


Now, I even get pictures of what life is like at home.


Obviously, this is not what any of us would have chosen.  I don't want to be on bed rest, I don't want to be away from my husband and my children.  I don't want the baby to be delivered early.  I don't want to be having a hysterectomy, and certainly not under the frightening circumstances that I will be having one.  But I know--without a shadow of a doubt--that we are in the Lord's hands.  And that whatever happens, He will make good of it.

The Mister and I have always said that we would take as many children as God would give us.  I am so thankful that He gave us the grace and the desire to accept with open arms and in pretty rapid succession these beautiful gifts.  Now, it seems my childbearing years are coming to a close.  Earlier than I expected and definitely not in any way I could have imagined.  But even with that sadness, He is giving us one final gift of life born of our love.  We are so very grateful for this baby whose life we thought was not to be.

This morning, after cruising the Amazon Prime movie lists for a good hour or more, I decided to spend a little time coming up with some worthwhile goals for this stretch of rest I have in front of me.

1. Grow the baby.
2. Pray the Rosary each day.
3. Watch those movies that people always talk about, but that I've never seen.
4. Write a little.

For the second item, I thought to myself that I needed to ask Mama to bring my Rosary up to the hospital, and made a mental note to do so.  But God knew better than to leave it to my multitasking brain.  Just a few minutes later, a lady from the chaplain's office stopped by to administer Holy Eucharist.  This time--unlike at past visits--after I had received the Eucharist, she asked whether I had a Rosary with me at the hospital, and pulled one out of her pocket to give to me.


Everything is going to be ok.  I do not walk through this alone.

His yoke is easy and His burden, light.

Wednesday, June 18, 2014

Strawberry Picking

Some days, when our little adventures turn into day-long sagas of whiny children and blowout diapers and appetites that hit at all the wrong times, I return home feeling defeated and just flat worn out.  With a picnic cooler to unpack, a load of laundry to spot treat, and a mess of grubby kids to bathe.  

But there are other days--when the weather is pleasant enough to enjoy an entire day outdoors, the activity appeals to all ages, the moods are good and the behavior is satisfactory--that our little adventures completely energize me.

Strawberry picking was one of those days.














Wednesday, June 11, 2014

6 Months In


It's been six months since Buddy Boy was diagnosed with type one diabetes.  It has been a wild, exhausting, frightening, and oftentimes upsetting ride, but one through which we have learned so much.

Looking back, even though I was vaguely aware of type one diabetes before Buddy Boy's diagnosis and had a surface (like, not even scratching the surface) understanding of the disease, I realize how very little I knew.  I knew that people with type one diabetes had to check their blood sugar and take insulin shots or use an insulin pump.  But if I had even considered it, I would have thought that the insulin dose was a standard amount, like taking an antibiotic...one teaspoon twice a day or some such.  I would have thought that, as long as the person with type one diabetes took his insulin, he was good to go until the next dose.  I just assumed that the disease could be managed perfectly, and relatively simply.  Even when Buddy Boy was diagnosed, that was basically the very well-intentioned and kind encouragement that I received from lots of people who either didn't have personal experience with type one diabetes or didn't have experience with type one diabetes in a small child.  So many times in motherhood, I've been taught and re-taught that I don't really know a struggle until I've experienced it myself, and this was just another lesson in humility.

I had NO IDEA about counting carbohydrates and dosing according to those numbers, correcting high blood sugars with extra insulin, treating low blood sugars with fast-acting sugars, monitoring blood sugars all day and all night.  I had no idea that a person with type one diabetes would feel bad (really, really bad) when her blood sugar was low or high.  

I think the movies had given me an idea of the possibility of diabetic seizures and that an insulin overdose could kill a person, but I had no idea that high blood sugars could also kill a person, and that insulin overdoses were a terrifyingly easy thing to have happen.  

You know that unsettled, sightly panicked feeling you feel when the baby sleeps too long or is unusually quiet?  Where you run in and stand over his crib, willing his little chest to rise and fall?  I had no idea that type one diabetes would give me that feeling on a permanent basis, that fear of SIDS would be replaced with fear of DIB (Dead in Bed syndrome).  

I had no idea that the most central considerations in our daily life and in any family decisions would become diabetes-related; that discussion of Buddy Boy's blood sugar would become the Mister's and my first conversation upon his return from work and the topic of many middle-of-the-night exchanges, and the first thing we talked about every morning; that babysitters or gym nurseries or vacation Bible schools or day camps would become largely impossible; that the hours I had to myself after the children's bedtime and before the Mister's return would be consumed with nightly sessions of research and reading about type one diabetes and its treatment.

And yet...here we are.  Six months in.  

This disease makes me so very, very sad for what it does to Buddy Boy, but I am thankful that the Lord has used our experience to draw the Mister and me closer, to cultivate more compassionate hearts in our family, to refocus our priorities, and to allow us to see the wonderful ways He works good in our fallen world.

Buddy Boy, with his "dolly" and his beloved Rufus, the bear with diabetes, waiting out a blood sugar low in the middle of the night.
I know there are so many things people deal with--which I've become more attuned to noticing as a result of our experience--and it's hard to keep up with all of them, and you probably have your own thing to deal with, but this is our thing, so I thought I'd spend a few weeks snapping a picture here and there to document daily life with type one diabetes.  The post turned out quite a bit longer than I expected (like, maybe it should be offered in chapter format?), but if you're willing to stick with it and if you are as unaware of the ramifications of this disease as I was just six months ago, maybe you'll pick up a new thing or two?  

Please remember that we are still new to this game ourselves, and are not medical professionals.  We're just parents trying to take care of our child.  I'm sure I'll look back in another six months or so and marvel at how much I had yet to learn!

Ready?

OK, so the basic overview is this: 24 hours a day, we are fighting to keep Buddy Boy's blood sugar between 80 and 180 (a normal blood sugar for a person without diabetes is around 100).  Unfortunately, we are unsuccessful in that fight a whole lot of the time, due to the stage of the disease that he is in, his age and his extreme insulin sensitivity (even teeny tiny little smidges of insulin drop his blood sugar by 100-200 points; medical folks, we're talking 1/4 - 1/2 units!).  Buddy Boy is still in what is called the honeymoon period, meaning that his pancreas still produces some insulin.  Eventually--probably in the next few months--his pancreas will conk out completely and he will be totally dependent on injected insulin, but in the meantime, he's got these fits and spurts of insulin that his body produces. But most of the time, we don't know when those are going to hit, so they can cause us major problems.  As Buddy Boy grows and as his pancreas stops producing insulin altogether, we hope to have better control of his blood sugar.  But for now...we have a lot of lows (we regularly see numbers in the 40s, which are dangerous) and a lot of highs (we regularly see numbers in the 400s, which can also be dangerous if not dealt with quickly).  Both of these extremes make Buddy Boy feel awful...a low seems to sap all of his energy and leave him lying on the floor in a moaning puddle.  A high that lasts a couple hours or more makes him extremely irritable and agitated.  Even in his sleep, if he is high, he will cry out and thrash around in his bed.  Being super high will make him wet the bed.  And lemme just tell ya, trying to change an extremely irritable and agitated (and sleepy) child out of wet pajamas ain't nobody's idea of a walk in the park.  

So, how do we manage Buddy Boy's blood sugar?  It's a combination of monitoring the blood sugar levels and dosing with either insulin (to bring the blood sugar down) or sugar (to bring the blood sugar up).  

We check Buddy Boy's blood sugar by finger prick 6-8 times a day and give Buddy Boy 5-7 shots of insulin a day, depending on whether he has big snacks.  He gets one shot of long-acting insulin each day to cover the sugar released by his liver on a continuous basis, and the rest are short-acting insulin shots to cover the food he consumes.  We also give him at least one shot of short-acting insulin in his sleep, because his blood sugar naturally rises right after he falls asleep.  The amount of insulin we give him depends on what we judge his needs to be that day and how many carbohydrates he has consumed. His needs change based on whether he has a virus or infection of any sort, whether he's in a growth spurt, whether he had more or less exercise than usual, and what his pancreas decides to do on any given day.  And his pancreas hardly ever gives us advance warning.  So inconsiderate, that pancreas of his.



To help us with the monitoring side of things, Buddy Boy wears a continuous glucose monitor (CGM) 24/7.  The sensor has a little wire that is embedded under his skin and it takes a reading of the sugar level in his interstitial fluid every 5 minutes and sends that reading to a receiver that we carry around.  We check the receiver at least every thirty minutes or so during the day and probably at least six times after he has gone to sleep, far more than that if we've got a blood sugar issue on our hands.


Because the CGM is testing the interstitial fluid, rather than the blood, the reading is about 20 minutes behind real time.  So, for short-term decisions like insulin doses we still have to do finger prick blood tests, but the CGM gives us a wealth of information about what happens in between those finger pricks, as well as a prediction about where the blood sugar is headed.  It is tremendously useful in helping us prevent lows, especially when Buddy Boy is playing outside.  It's my best friend at the playground!

The CGM also helps me know when we are dealing with an actual behavior issue that needs to be corrected and when Buddy Boy is just behaving symptomatically.  Prior to the CGM, I would find myself in the ridiculous position of testing Buddy Boy's blood sugar before deciding whether to send him to timeout for some sort of aggressive behavior or temper tantrum.  Obviously, he still has to learn to behave well when he doesn't feel good, but my correction in those times is going to be much milder and more sympathetic, and more oriented toward getting him back to feeling good enough to act good.  With the CGM, I'm always aware of his general blood sugar level, which makes that part of our lives a lot more natural.

To do a blood test, we prick Buddy Boy's finger with a lancing device and squeeze out a drop of blood, which is then applied to the test strip inserted at the bottom of the meter shown above.  In just a few seconds a number pops up.  Well, usually it's a number.  This was a day where Buddy Boy went inexplicably high after breakfast.  That seemingly friendly little greeting means the blood sugar is so high that the meter can't read it, which means something over 600.  As it turned out, Buddy Boy was coming down with a cold, but he wasn't showing symptoms yet, so we had no idea that his insulin needs had increased so drastically.  Thus, the high.  Or, the HI.

This was an absolutely gorgeous day--probably the best we've had since diagnosis--which is why I took a picture of it.  Truthfully, his pancreas did a lot of its own work that day, which is why it went so well--our bodies do so many amazing things we take for granted...until they don't.  We've yet to have a day with numbers like this when we were in charge of the insulin production.  The 142 at the top is the current reading and the straight arrow means the blood sugar is holding pretty steady.
This was a couple nights ago, after supper.  Not a gorgeous day.  He was super high before supper, as you can see from all those dots at the 400 line, which is as high as the CGM reads, and then I gave him insulin, but he didn't eat all that much supper and he's also getting over an infection and has had some tummy troubles, so for whatever reason, he started to drop like a ROCK.  He was dropping about 50 points every five minutes.  The beauty of the CGM is that I knew what was happening.  When he was in the low 200s with two arrows straight down (which means falling fast), I took his blood and found that he was already at 109.  So, he had a juice box right then, which helped slow the fall, but when I tested his blood again 15 minutes later, he had still gone down to 49, so he needed more sugar right away.  Without the CGM, I would have had no idea he was actually in a quite dangerous situation and he probably would have gone lower than we have ever had him go before.  I'm quite thankful for this technology.  We had no idea how blind we were flying before we had it.

As you can probably guess, Buddy Boy's (and our) favorite part of diabetes management is treating a low...juice or candy, candy or juice.  What a delightful choice for a three year old!  But nighttime lows.  Ugh.  The Mister deals with most of the night action (testing blood, checking the CGM, injecting insulin for highs, treating lows), but when he is traveling or when we are traveling or when he needs to catch up on sleep, I handle the nights. 



Drinking juice or chocolate milk or eating Skittles in the daytime is fun.  For the first couple of months with diabetes, it was even fun at night.  Now, not so much.  If it's the only low of the night, Buddy Boy's usually pretty compliant about slurping down some juice.  But if it's the third low of the night, waking him at 2:30 AM to drink MORE juice, when he just drank some 15 minutes ago is not popular.


But when the CGM is saying he's still headed down after juice, we MUST get the sugar down the hatch.  Sometimes this means pulling his lips apart and putting Smarties in his mouth to dissolve.  


Sometimes, it just means a lot of tears and struggling by the light of a camping lantern.


On the flip side of that, the deepening of Buddy Boy's relationships with his siblings as a result of his disease has been a joy to watch.  Little Guy has learned how to do injections in an orange and just yesterday, checked Buddy Boy's blood completely unassisted.  If the CGM alarms and I'm not nearby, Little Guy will often bring me the receiver, as well as the meter kit and log book, and let me know I need to check Buddy Boy's blood sugar.  Baby Girl has a basic understanding of diabetes--she knows shots are for highs, while candy and juice are for lows.  She has declared the beeper in her toy medical kit to be a CGM and she reads off all kinds of numbers from it when she is playing doctor.  Both she and Little Guy have voluntarily had finger pricks and shots (with nothing injected, obviously) to experience a bit of what Buddy Boy endures.  Completely their idea!  And they all adhere to the same eating schedule and the same limits on snacks and such, so that Buddy Boy will never feel isolated inside our family.  As a silent recognition of all that, we occasionally let them have a piece of candy or a juice box, too, when Buddy Boy is treating a low.  Snodgrass solidarity!


Counting carbs is a huge part of managing Buddy Boy's diabetes.  If we don't know how many carbs he eats, we can't know how much insulin to give him.  I think this part will get easier as he gets older, because he will be more able to judge for himself what he is going to eat at a sitting.  As it is now, we have to guess at what his appetite is going to be like, serve out a portion accordingly, measure the parts of the meal that have carbs, and then dose accordingly.  Often, we wait until he is done eating to give him his insulin, because we just never know whether he'll just pick at a meal or ask for seconds.  Unfortunately, that means his digestion gets ahead of his insulin, so his blood sugar spikes pretty high before coming down, but it's the best we can do.

So, what this looks like in practice is that if we want to serve something like this...

...we separate out the noodles and weigh them, then the tomatoes, etc., and then put it all back together to serve.
Or, if we give him a bowl of cereal and he doesn't finish it all, we pour the remainder back into the measuring cup to get an idea of how many carbs he didn't consume from the measured portion we gave him.  Of course, when we're eating out, it is usually much more of a guessing game.  How many french fries did he eat?  What's in that fruit salad and how many bites of each type of fruit did he have? It can get a little complicated.


Every bite of food needs to be thought out and prepared for.  When we went strawberry picking, I figured Buddy Boy would eat a good many strawberries in the field and I knew the strawberries would be smaller than the ones we are used to counting from the grocery store, so I did a quick consult of my Calorie King book to find the carb counts and then kept a close eye on what was going in Buddy Boy's mouth in the field.  I try really hard to let Buddy Boy maintain as natural a relationship with food as possible, though, so while I was ticking off strawberry carb counts all the time we were picking, it was important to me that he not be aware of that.  He knows we measure his foods at home and check labels for carbs and ask for nutritional information at restaurants, and he should know that, because eventually he will take on doing all this for himself, but there are some things that just shouldn't be marred by carb counting.  In my opinion, a beautiful summer day in the strawberry fields is one of those!

Sick days are another thing we've learned about.  Thankfully, we have not had to deal with a stomach bug since diagnosis, but even other types of illness can be greatly complicated by type one diabetes.  I mentioned that viruses and infections often raise one's blood sugar (or, they can lower it--roll the dice!), but vomiting and diarrhea can cause severe lows, due to carbs not being absorbed.  How I treat Buddy Boy on a sick day now is very different from how I treated him before diabetes...I can't let him sleep too long or go without food or liquids with carbohydrate.  We have to check his blood sugar more frequently and do urine tests for ketones to make sure his body isn't being harmed by the toxic acids.  There was one little fever virus a couple months ago that really wouldn't have been a big deal without diabetes, but almost landed Buddy Boy in the hospital, because he just did not want to eat or drink anything and wanted to sleep all day.


And then there are the sick days caused by diabetes itself.  Here, an infection in a finger prick site, despite our every effort at avoiding such a thing.  An antibiotic has helped to heal it up, but of course along with strong antibiotics in small children come strong tummy issues.  Remember that non-carb absorption issue?  Soooooo, Buddy Boy has dealt with several blood sugar lows caused by a reaction to the medicine he is taking for an infection caused by the treatment protocol he follows for his diabetes, which is meant to avoid blood sugar lows and highs.  There are times when I'm tempted to feel like the poor boy just can't win.

But I know--I KNOW--that God is using this disease to work good for Buddy Boy and for others.  I've already seen some of that good.  There will be more.  And there is so much hope and consolation in that.



The CGM sensor has to be changed every 7 days, and while Buddy Boy says it is not particularly painful, he does not enjoy the process at all.  The insertion device is a little intimidating and the noises are kind of scary.  Watching the Ninja Turtles has been known to help.

Here you see his old sensor, which is about to be removed.


All the supplies for the change...the insertion device for the new sensor in the clear plastic sleeve on the left, Unisolve wipes to dissolve the adhesive of the old sensor, a Skin Tac wipe to help the new sensor adhere more securely, alcohol wipes for cleaning the old and new insertion sites, and Opsite tape to tape down the edges of the new sensor.

Old one's off and he's sensor-free for just a minute.


The adhesive for the new one is applied, and on Buddy Boy's count of 1, 2, 3 GO! we will insert and then withdraw the needle that embeds the wire.



New sensor in, transmitter attached.  After a 2-hour startup period, it will ask for two blood readings for calibration, and then it will be up and running for the week.


Tape keeps the edges down.


Thank goodness that's over with!


The wreckage...


And another deposit in the sharps container.


This is about a week's accumulation. I'm thankful that the Mister usually empties the sharps container for garbage day, because this visual representation of what my boy goes through every day is one of the saddest for me.


If you stopped by our house around 7:30 PM each night, you'd most likely find the counter looking like this.  I take a few minutes to work over our supplies each evening after the children are in bed...make sure there are enough alcohol wipes, gauze pads, and test strips in each meter pack; dispose of the sharps we used while we were out that day; add a few more syringes to the go-kit and replenish any sugar sources we used that day; change the lancets in the lancing devices; record in the log any blood sugar numbers or insulin doses from when were out; get us ready for nighttime testing and the next day's outings.



And every three months, you'd find Buddy Boy and me here, at the endocrinologist, for his diabetes checkup.  We had his six month checkup last week, and are very excited that we got approved to begin the transition to an insulin pump, which will probably be a 2-3 month process.  Contrary to what I thought six months ago, the pump doesn't come close to managing diabetes on its own, but it IS an awesome tool to have in the diabetic arsenal.  We are hopeful that with the teeny-tiny doses of insulin that are possible to administer through a pump, we will be able to keep Buddy Boy feeling better more of the time.  


Did you make it this far?  If so, you are AWESOME.  Thank you for taking the time to understand more of Buddy Boy's life!  Please always feel free to ask any questions at all.  I'm very happy to talk about type one diabetes and would love for people to know more than I did pre-diagnosis.  And if I don't know the answer, we can find out together!