Milestones of late

So, a lot of time has passed since my last post. It's not because there's nothing to report, it's mostly that there's not enough time in the day. ..and it's partly because when I do have the time, I don't want to talk (or write) diabetes.

Points of interest from last several weeks though:
1. Our team raised over $6000 for Juvenile Diabetes Research Foundation. We "walked for a cure" on November 6 around Dodger Stadium. Our team shrank the morning of the walk because of rain - but it was clear and dry the entire time in Chavez Ravine. It's always inspiring to see the thousands of people there for the same reason: to raise a cure for type 1 diabetes. It always brings a tear to one of our team member's eyes; this year my mom won that prize. Thank you to ALL who donated!!!

2. The following weekend, we used a new babysitter who, drumroll…. Has type 1 diabetes!!  I'd met her mom at one of our support group meetings (and her mom, an OB/GYN  helped deliver Michael !). She's 14 and uses the same pump as K! We still have other good sitters that we'll use, and Michael is a huge help in that scenario, but you have no idea how liberating it was to be on a date with my husband and get the following text: "She was 243 and I corrected her" - I mean, I was bummed her BG was so high, but hallelujah! - someone besides Marc or I can just "do it". The only person close to this functional with the pump is K's preschool director, who still calls me every time she checks her. I'm not complaining because it's probably my own control issues that I feel the need to know what her BG is after every check - but no one else is even close!  She's babysitting for us again tomorrow night. 

3. So the biggest news of late is that K is having her first sleepover tonight! I know some of you probably think I'm crazy because you're more paranoid than I am about sleepovers, but our boys have been doing sleepovers since they were 4 or 5 - so K's been wanting one too. The friend she is staying with stayed here a couple months ago and the parents, who we know, of course, have been wanting to reciprocate. They so sweetly want K  to feel "normal" too - and have no problem getting up at 3AM to check her BG. I've written up my 1.5 page "if this, then do that" cheat sheet. We'll be fully reachable the entire night. Now, we're wondering where to take the boys to dinner and have lots of lots of carbs. Is that wrong?

YAWN

I think in most posts, I mention being tired. The easy answer, I know, is "go to bed earlier." That sounds so simple, but for one thing I'm definitely a night owl; there's very little I love more than my quiet house, when it's just they hubby and I. The other issue and more problematic, is that if I go to bed early, I have a hard time falling back asleep after the 3AM BG check (we don't feel comfortable letting her go through the night most nights). Whereas, if I go to bed closer to midnight, 3AM is a blip, I sleepwalk through my duties and am able to fall right back asleep without issue 90% of the time. So, no matter what, for lack of a better term, my sleep is screwed up every weeknight. Because I don't work*, I take the weeknight shifts and hubby does the weekend. All the more reason to say TGIF! Even his nights, though, I still usually wake up to his alarm or his movements. 

Another disadvantage with going to bed early, is that I then find myself having to wake up twice during the night (unless hubby stays up until after 11), and I honestly hate nothing more than my alarm clock. (I have 2 alarm clocks: the clock radio is for the morning wake up and the iTouch is for night time alarms.)  Sidenote -- In the past year+, I have developed certain skills. It's nothing applicable to anything else in life nor anything to really be proud of, but, for example, I can check blood sugar in the dark better than anyone. (thank you for the applause; thank you, thank you ;) ) Another skill I have, but actually started when I was younger - stemming from having to wear a head gear at night - is my ability to take off or turn off things in my sleep.

So, back to that alarm clock... my subconscious also hates my alarm clock. I somehow have been turning off the 3AM alarm in my sleep. The only solid nights of sleep I was getting was when I was neglecting my daughter. So a few nights ago, I finally moved the iTouch onto a dresser that forces me to get out of bed. It was good I did, because that first night of doing so, after K's BG was 251 mg/dl at nearly midnight, she dropped to 50 mg/dl at 3AM. And we had just decreased the amount of insulin she gets from 12- 3 (aka "decreased the basal rate during that time"). I woke her up a little; gave her juice. It was one of the rare 10% of nights that I couldn't go back to sleep after going to bed after midnight. K couldn't sleep either; she was calling for me 20 minutes later saying her tummy hurt (which is her classic symptom for being low). I checked her again and she had come up to 83 mg/dl. Pretty good, but at 3:20 in the morning, I feared she might drop again, so I gave her a little more juice. I rubbed her hair, kissed her cheek the way most parents comfort a sick child, but I find myself doing every night, and bid her farewell, again. I still had trouble getting back to sleep. That was Tuesday AM and I'm still playing catch up - or maybe falling even further behind... 
None of my babies were great sleepers. Don't even get me started on my #2 child, but it seems like right when things were starting to mellow (because K was not a great sleeper even at 3)  - diabetes came and disrupted the sleep again. Oy.


* ok, regarding that work comment from up above, before you other "SAHM" snap at me, after all these years, I still don't know how to say "I don't work for $ and spend most my time caring for my children and my home" (thank you Kristin Maschka for detailing this dilemma in your book, This Is Not How I Thought It Would Be") - yes, I know it's a full time job in itself, but I don't need the same brain power my husband does for his job- or a restful sleep to stay awake while reading/reviewing boring stuff like he does. That's just the way we operate. It seems to work. 

How YOU doin?

Sometimes people ask my husband and/or I, "How are you guys doing (regarding diabetes)?" There are two reasons why I love this question:

1. When someone asks about how I'm doing, or Marc, or the family, they recognize that, at this point, it's not just about K. Yes, it is K's *disease* (I hate that word, but it is, right?) and it breaks my heart that she cannot take a break from it like we can - but for now, the caretakers in her life are filling in for her pancreas, so, at this point, the burden is on us - and the stress of that care and some of our restrictions likewise affect our sons. The question "how is K doing with her diabetes?" is a pretty short answer - she's good. Sure, she's not a fan of diabetes, but it's all she knows and we make it so she can lead a pretty normal life. No, she didn't get dessert at Islands last night when we dined with a cousin - but after carb heavy fried food for dinner, did anyone need a sundae? No, and nobody got one - as they wouldn't have 2 years ago.

Obviously, over time, K will take more charge of her care. I'm hoping that before kindergarten she can check her own blood sugar. I imagine we'll work on carb counting as she learns to read maybe. This will become more and more about her as she gets older and the question, "How is K doing?" will have a much more elaborate answer at that point.

2. The other reason I like this question is that this stupid disease is a constant, yet fluctuating, presence in our life. Very little has changed since K was diagnosed. She still needs insulin to live and it's not just a matter of carb counting, dosing and walking away. Yes, she's been on the pump for over eight months and it's been a life saver. And yes we're used to living shackled to the blood glucose meter and the timer and sensing low or high blood sugars. We're more adept and less stressed than a year ago. However, there are constant variations - this is not an exact science. We count carbs; we weigh food, we chart her BGs to look for trends - but sometimes there is no rhyme or reason for her blood sugar readings. How was K's BG high for six straight hours through the night and then 64 upon wakeup? How just a few days later is she running low during that same time period? It scares us, it frustrates us and no amount of tweaking the pump basal settings clears it up. In sum, again, it's a pain in the ass - and it's constant. Also, I'm really really tired.

So, I kind of answered the question, "How are you doing?" with that second point, which was not my intention. I was just trying to explain why it's a question worth asking.  :) The only time it's not worth asking is when K is around. She actually doesn't like us talking about it with people. We try to explain to her that in certain circumstances, we need to, for her safety.

Last note, we are walking again for a cure for diabetes. I hope that when K is my age, or younger, she can say, "I had diabetes when I was young." I'd love for her and all type 1s - a disease for which there is NO cause - to eat and run around carefree like most people. I don't want her to have to worry about the consequences of diabetes that may come as she gets older. JDRF is our best hope for a cure. Read more on our Kate Crusade Donation page if you'd like to walk with us or will consider donating.

Diaversary

So, it was one year ago today, July 27, that I took my 3.5 year old daughter to her pediatrician because she was peeing more than normal. It was one year ago today that we found out K had type 1 diabetes and that K's life, and our entire family's life, just drastically changed. It was also one year ago today that we realized, as we were injecting our daughter with insulin before she ate dinner in the Children's Hospital Los Angeles cafeteria, and witnessing the other children in the amazing facility, that we knew it could be worse.

It's been a long year and a hard year, and we've had other hardships, including loss of family and lack of help. Rarely do my husband and I both get a full night sleep and rarely can we both fully relax because we must be vigilant about her food intake and BG checks, in addition to observing her behavior, for symptoms of low BG. I have vented enough during the year on this blog and frankly, I am actually at a loss for words on this, K's first "diaversary". So, I thought I'd focus on the positive...

In the past year, my daughter has proven herself to be an incredibly strong, independent child. She will be able to handle anything in life.  Her big brothers, ages 9.5 and 7 now, have matured a lot too. They obviously know that they don't have diabetes but recognize that we all do things a little differently now, including usually waiting to eat 15 - 30 minutes from when K receives her insulin.  Our oldest son immediately took it upon himself to learn all he could about diabetes. Of late, only since K has consented, he has begun to check K's BG. On my birthday, earlier this month, it was the first time we were able to leave the kids with a babysitter early in the evening because our older son could check her. It was a great gift and something he is willing to do anytime.  Finally, I think my marriage has gotten even stronger. Despite typical tiffs or frustrations, my partner is the only person who truly understands this diabetes life. We bounce concerns or judgment calls off each other and never fault the other when there's a problem.

We have a long road ahead of us, but we've weathered the last 365 days fairly well. I'm thankful for this family of mine and I know, when she fully understands it, K will be thankful too.

Although we appreciate your good thoughts and prayers, we put our energy into raising money for researching a cure for t1d. We're assembling another team for the annual JDRF walk. Please consider joining us on the morning of November 6 at Dodger Stadium.

Trudging along

Well, K is nearing 10 months of having diabetes. I admire her spirit every day. She is such a trooper, seriously. I feel like I haven't had much to say of late, and I guess that's a good thing. Nothing is "easy" but we have just become used to the freak-show BG swings and to the daily challenges.  It's just our new "normal". If you lived my life for just one day, you'd wonder how we do it - but if you had to do it every day like we do - you just get used to it.

So, example of a fun blood glucose (BG) swing: Yesterday, when I picked K up from pre-school at noon, she seemed a little sluggish, so I checked her BG in the parking lot and it was 57 (too low; we don't want it under 70). Yoiks. I quickly gave her two glucose pills, adding up to 8 grams of total carbs. When I checked her 15 minutes later, she was 167. Last night, when her BG was 64, her dad gave her two glucose pills and when I checked her about 20 minutes later, she was down to 63. There is NO rhyme or reason to this!!

Earlier this month, we took a successful family camping trip to Yosemite and her BGs were pretty good. She tended to go low, so it was fun to just hand her free carbs as we were hiking around. Right before that trip and since, she was tending to go very high on her last day of the infusion set of her pump (she wears the same set for three days). So by the end of the second day, things just weren't right. So, this past Sunday, we switched her insulin (same, fast acting, just a different brand...) and we are on day 3 now and it's much better, though we're having to make adjustments because she's going too low before midnight and then too high by 3AM. As a side note, although I'm getting used to the 3AM checks, mostly because I do them more, the hubby still has a hard time when he's on duty (weekends). He is so disoriented at that time of night.  Funniest example yet is when his alarm sounded early last Saturday morning, he turned it off, but "it" kept beeping. After cursing at it, banging on it, ripping the cord from this seemingly possessed beast out of the wall, he realized it was his phone that was beeping because he had also set it to make sure he woke up. We laughed about that the next day. 

K is at a playdate right now with a friend of mine and her 2.5 year old. This friend picked her up from pre school along with her daughter, took K home, checked her, and then, over the phone, I walked her through dosing K for the lunch that I had packed her. I haven't heard from her again, so I'm assuming K ate the lunch we dosed her for - hallelujah! I am near tears (of joy) that she is at someone else's house, having a "normal" playdate. This is the first time since she's been diagnosed that a play date away from me hasn't been coordinated around a meal. For example, I've dropped her off after breakfast and before lunch for a couple hours at the most. This time, she's eating a meal :)

Why and how we do what we do

We've been on a decent run of late which is why I have not posted in a while. Sure, there are highs and lows, mistakes made, settings that need to be changed, etc, but no sicknesses and nothing too dramatic -for us at least. :) 

I thought I'd give a little overview of how/why we treat K the way we do. Again, I am not a doctor but I thought I'd give an overview so it's easy to digest for those who are confused by what we do or want to understand it better. So, what is "good management"?? Children's Hospital Los Angeles is on the cutting edge of research.  We are very comfortable with their guidance of "do this and your child will be healthy (now and in the future)". It's just the way it is: the more often t1d patients check their blood glucose (BG), the better (lower) their A1C, which is a test reflecting the average BG level for the past three months. The higher diabetes patients' A1C levels are, the poorer their blood sugar control and the higher their risk of diabetes complications (which include progressive damage to body organs like kidneys, eyes, cardiovascular system, and nerves). We try not to think about these things, but it's because of them that we take such stringent care of our daughter.

People who do not have diabetes have a normal BG range of 70-120 mg/dl. The target BG ranges for people with t1d will vary based on age, weight and other factors. K's target range is 70-130 mg/dl. There are so many factors that influence a person's blood sugar that it is incredibly challenging, if not impossible, to be as effective as a pancreas. Factors such as how much and what kind of food she eats, sleep (or lack of), activity, exercise, emotions, stress, bad dreams, hormones, and MORE all play a role in how much insulin the body needs. We have to predict these things before giving her (synthetic) insulin, which although is an amazing, life-saving invention, is not the same as the insulin a healthy pancreas makes. 

Because of the various factors affecting BG levels, we (as in all t1d parents and patients) are too rarely "right" - ie she is more often out of the ideal zone than in it (or it's at least 50/50). So, the reason for the frequent BG checks is to "correct". If we check often and immediately correct her BG (with insulin to bring down [the more frequent occurrence] or sugar to bring up), she'll have only been high or low for a limited amount of time (rather than through the night, say). We do feel like rock stars when we go a day without highs or lows, but it is infrequent!!! As an example of fluctuation - K had the same exact breakfast yesterday and today. When she was checked mid-morning at preschool yesterday, her BG was 151 mg/dl; she was given insulin (via her insulin pump) to bring her BG down. Today, also at preschool at nearly the same time, her BG was 55 mg/dl - and she was then given glucose pills to bring her up. Why? dunno - but we'll keep an eye on it to see if doses need to be changed - and we're just happy that we checked her!

To explain "checking" and frequency:  We check K's BG with a lancing device (the finger pricker) and glucose meter when she wakes up in the morning, before eating, ~2 hours after eating, before/after exercising, during the night, and anytime she seems too low or too high (the latter of which is still hard for me to identify and I don't always get the first one right either).  In a typical 24 hour period, we usually use up at least eight of her little fingers.  Luckily, she doesn't mind it in the least and it's only frustrating for her if she needs to stop doing something to wash her hands and be checked.

The reading of the glucose meter is how we determine if K needs "correction": more insulin to lower her BG, or fast acting sugar to raise her blood sugar (we use juice or glucose pills - the amount of which depends on her BG). If she is about to eat, we also have to factor in the carbs she is about to eat. We calculate carbs mostly by using labels, apps on our iphones/pods, weighing foods on our fancy nutritional scale, and experience (like I know that K's "favorite fruit" -an orange- has about 15 carbs for the whole thing). I'm thankful that in California, chain restaurants must provide nutritional info upon request. However, it's annoying when I do and our server points to the calories listed in a menu. I say, in a nicer fashion, "I don't give a rat's ass about calories. I want to know your carbs" and let them assume I care about that new French diet fad.  The amount of insulin she gets per gram of carb (the insulin:carb ratio) varies depending on the time of day and is always something we're tweaking anyhow, meaning if we find she's running low for a couple days after dinner, we may increase her ratio for dinner time; or if she's running high we'd lower the ratio. We have adjusted these ratios more times than I can ever count. The pump makes all these calculations much easier, but we still have to count carbs. 

Oh my, I have provided more info than I intended to and I hope I did not make your head spin too much!! Feel free to ask questions or leave comments.

Oops

First, before I acknowledge my (big) "booboo" last night, as I said to K, let me describe my state of mind and crazy afternoon: I hadn't gotten more than six interrupted hours of sleep in about a week (forget about uninterrupted) and the night before was especially bad. K was sleeping on a slow leaking air mattress in her brothers' room because my dad got to town that day and was sleeping in her bed. She slept HORRIBLY - and was awake and upset for a good two hours during the middle of the night. Long story short: I was exhausted.  So, as for my crazy afternoon: my oldest son had a basketball game at 5:30 PM. At 5:00, I drove him to his game location, as we were told to, and then, upon arrival, learned from his teammates standing outside that they couldn't get onto the court until 5:30. I then brought him back home so that his dad could just take him at game time (when he got home from work). Luckily, my dad was here to stay with the other children during that misadventure. --the other kids included our other two, plus a six year-old friend who had been with us all afternoon. Our middle child had a 6:00 little league game but had to ideally be there at 5:45. When I rushed in the door after the basketball snafu, I yelled at the little leaguer to change into his uniform and told K to put warmer clothes on. --and I still had to feed them. She spent all afternoon in a leotard - and when she does this, she has to wear her pump outside of her clothes. I undid her pump so that she could get out of the leotard. She picked a warm, flouncy dress and tights to wear which I helped her get into. I then checked her BG, *dosed* her for the awesome (ha ha) dinner of yogurt and noodles and soon fed both kids (basketball player had already eaten). Our guest smartly waited to eat with her family. Hubby came home and immediately left with oldest child and my dad. Continuing to rush, I soon gathered up the rest of the kids, and headed to the nearby park where the game was being played. K played at the playground with our friend until her mom picked her up there - and then she and I headed to her brother's baseball game. Once there, she found other little friends to play with and was running all around. Because of her activity level, I actually worried about her blood sugar going low, so I gave her a little bread that someone else had brought.

When we got home after 7:30, K was ready for bed. She changed into pajamas, brushed teeth and picked out stories. I read her stories and tucked her in. I then stupidly remembered that she had an early dinner and her BG needed to be checked. It had been a good two and half hours since she ate and closing in on 3 hours since I *dosed* her. I'll get the ** in a second...

Her BG at 8:15 was a whopping 397 mg/dl. I was flabbergasted. Her BG had been great ALL day! why now? and she had been running around at the park?? I checked her inset (the piece that sticks to her bum where the insulin goes in). It looked fine - oh wait, no, the pump is not attached to it??!!! It all came back to me - I never plugged her back into her pump after she changed before we went to the baseball game!!!  I felt horrible and realized how important those little drips of insulin are that she gets throughout the day (called basal)- but it still didn't explain a BG THAT high...  Brain was still working at super slow speed and I was trying to piece it together, even asking K, "what where you wearing when you ate your yogurt??!"  Holy moly - I took off her pump BEFORE she ate, and more importantly, before I dosed her for food (bolus). Because I can dose her remotely with her meter, the meter was communicating with her pump, sitting on her bedroom dresser. Her flouncy dresses hide her pump so well that I never would have noticed it missing. Of course, we dosed her down, with me apologizing to her for several minutes, and also telling her to let us know when she doesn't have the pump on (shows how little she notices it, I guess!). She fell asleep soon after (amazingly) and I went to bed within the hour, needing sleep and feeling like the worst mom EVER.

I blame all the distractions I mentioned in the first paragraph - but there's sincerely no excuse. I'm also thankful for my partner for showing me grace and understanding the distractions and not blaming me at all, telling me "she's fine" and "accidents happen". I need to remember that because I don't know if I'd be as understanding if he made the mistake... 

Sick Kiddo

It's been a tough week (and probably plenty of typos because of it):
K started coughing on Monday and fever came later that day. On Tuesday, I took her to her pediatrician because of cough and wheezing. Pediatrician assumed it was a virus and she's been on her asthma meds since, as well as Tylenol/Motrin to keep her fever down. Her BG was high ALL Tuesday because of the combination of all these things. We increased her insulin, but it still wasn't enough. By 7:30 at night, she had moderate to large ketones. I had spoken with K's case manager an hour before and she told me what to do if her ketones were at this level. Big learning curve this week, and remember, I'm no expert (far from), so here's a definition of ketones from webMD:
A ketone test checks for ketones in your blood or urine. Ketones are substances that are made when the body breaks down fat for energy. Normally, your body gets the energy it needs from carbohydrate in your diet. But stored fat is broken down and ketones are made if your diet does not contain enough carbohydrate to supply the body with sugar (glucose) for energy or if your body cannot use blood sugar (glucose) properly.

Our protocol is that when her BG is consistently high, we should test for ketones. We have done this several times over the last several months, but this was the first time the test strip changed to a dark color, indicating "large ketones". Panic mode set in; here's why,  from the ADA:
Ketoacidosis (key-toe-ass-i-DOE-sis) is a serious condition that can lead to diabetic coma (passing out for a long time) or even death. When your cells don't get the glucose they need for energy, your body begins to burn fat for energy, which produces ketones. Ketones are acids that build up in the blood and appear in the urine when your body doesn't have enough insulin. They are a warning sign that your diabetes is out of control or that you are getting sick. High levels of ketones can poison the body. When levels get too high, you can develop diabetic ketoacidosis, or DKA.

So, the goal over the last few days now has been to keep her from going into full-blown DKA. We upped her insulin even more and hydrating, hydrating, hydrating. Testing, dosing and hydrating her through the night. Her BG came down well Tuesday night and the ketones were "trace" by 12:30 AM.

Everything creeped back up again Wednesday: her BG, her fever and her ketones. She had large ketones before bed, again, and her BG was going up, not down. At that point, I called the Endocrinologist on call and she was helpful and supportive -reminding us not to overdose K, as much as we wanted to quickly bring her BG down (over time, she'd be TOO down, as she had been the night before).  Her BG did come down that night and we missed the opportunity to check her urine in the middle of the night but when I checked her urine the next morning, her ketones were moderate. Although she had a high mid-morning BG, keeping her hydrated and dosed heavily (of insulin), combined with her fever not being quite so high, her BG later leveled off and her ketones were trace again. Her BG was great through Thursday night/Friday morning (comparatively).

So, although she's certainly not "healthy" at this point, the fever seems to have broken, and she's slowly on the mend. Phew.... 

Support Group

We all went to the CHLA diabetes support meeting last August, after K had been diagnosed for less than a month. I wanted to be there for K to meet other children with diabetes and for us to meet other parents with children with diabetes. (Notice I don't say "diabetic" very often? It's one thing I've learned from other t1d parents - is that our children are so many things; they aren't "diabetics", they "have diabetes" - but I'm not going to be uptight about it or correct you if you call her "diabetic".) However, I so did NOT want to be at that meeting either. I didn't want to be at a park with strangers talking about diabetes because I didn't want my daughter to have fricking diabetes! (Was thick in the denial stage.) But, in the end, we were happy we went. We met some really nice people, who were amazingly supportive (hence the name, "support group"). They all could identify with that early stage of shell shock we were experiencing. We all spoke the same language although my husband and I weren't quite fluent yet.  We also felt slightly discouraged at that meeting; we got home and realized - it never changes- we just get used to it. And in the seven months and one day since she was diagnosed, that is exactly what has happened.

For scheduling, irrational, and/or emotional reasons, we never went back to another monthly support group meeting until yesterday afternoon. We saw a few familiar faces, met more people - including some who live walking distance from our house, and the kids had a blast. We learned new things, thanks to the amazing doctor who leads the group - including, much to my dismay, that K's numbers will be more wonky once she's done "honeymooning". They call the period after diagnosis the "honeymoon" because the insulin producing beta cells in her pancreas are still functioning. This period can last weeks, months, or with good control, more than a year. And despite the inconsistency of when the beta cells are producing insulin during this honeymoon, we learned yesterday that once she's out of the honeymoon, her BG will be harder to control, she'll have more (high and low) swings, she'll have more risk for hypoglycemia, and higher overall BG.  For some reason, because I live day to day with this - not really thinking about the future in an educated sense - thought once her beta cells were kaput, she'd be more stable. But, there's absolutely nothing logical about t1d. NOTHING.

One more point of interest from the support group, which takes place in Pasadena, conveniently, just for us ;) : a family came all the way from the South Bay who have an 11 year old daughter, diagnosed for over 9 years to their first ever support group. They said she's always been great about her care and not self conscious, until this school year. It was heart wrenching to hear the father talk so openly about the struggles they were having (an fyi, the children play in another room for most of the meeting). And, selfishly, despite my line above about about living day to day, my head cannot help but wander to adolescence with our own child. 

When I tucked K into bed last night, we talked about the fun girls with whom she played who had t1d like her, all of whom were older and doted on her. She smiled and then said, "I don't want no diabetes." Rather than correct her grammar, I told her that I wish she didn't either and snuggled her. She then asked, "Will it ever go away?" (like a cold...) and I said that hopefully, they'll find a cure, but for now, no, it won't go away.  I gave her a kiss and was happy I could tear up outside her room.

Still stressful

So K has had the pump for over 5 weeks. It has made such an improvement to her and our lives as I detailed in my previous post. However, it is still not perfect. We have had two recent experiences to rattle our nerves.

First, this past Monday night, her BG was a very high 323 mg/dl at midnight. We of course gave her insulin to bring her down and three hours later, she was even higher: 367. Our guidelines for rare occasions such as this is to assume there is a problem with her infusion set. So we had to bring her down old school style (hello syringe) and change her infusion set -at 3:00 AM. She did not enjoy any of it and neither did we - it's a rather time consuming process and a little harder when we're half-awake. We also checked her ketones because ketoacidosis can occur pretty quickly --but she luckily had no traces of that (we test her, easily, but sticking a little test strip in her urine). We then had to check her two hours later. I don't know how I was able to function yesterday - so tired!

The second stressful event occurred the next day (yesterday) when she was high again, mid-morning at preschool. I walked our great preschool director through dosing her with the meter/remote - as I've been able to do since K got the pump (which is SO incredibly liberating!!) - and K received the recommended amount of insulin. A short while later, she was to get her "free carb" that she gets every mid-morning. At this point in her routine, she gets 10 -12 grams of free carb every day at that time to keep her from going too low - whether it's because her body is making a decent amount of insulin at  that time, her hormones aren't over producing (like they do after bed-time), or because she's more active at that time of day - who knows - but it's just what we've been doing pretty much since she was diagnosed. Anyhow, yesterday, she did not eat all of her free carb (cheerios) and I should have known while we were driving home that she was low because she was especially irritable. Lesson learned: pull over, check her. Don't continue to drive. Don't stop at Ralph's to pick up a few groceries because it is conveniently located on the way home. When we got home and I finally checked her, her BG was a freaking 37 mg/dl!!  I was floored. I was guessing she might be in the 50s based on her behavior, but never thought that low. How was she even conscious?? I immediately gave her three glucose pills and she devoured a whole apple. Her blood sugar rose immediately to an appropriate level. I also discussed with her teachers and the preschool director today that she NEEDS to have that free carb. If she didn't want the cheerios yesterday, I need to be called and we can figure out how much of something the school has on hand for her to have.

Lots of learning still going on and still plenty of stress.

maybe it's time to change the blog title...

So, K got her pump one week ago today. I wouldn't say that life is "easy" but it is SO much easier!! Here are the upsides:

• We are no longer injecting her with insulin several times a day! 
• We have given her insulin during the night without waking her up! 
• She could have cake at her birthday party without having a shot first! 
• We don't give her the long-lasting insulin every night at bedtime anymore, thus making bed time rituals more enjoyable again.(she gets minuscule drips of the short lasting insulin throughout the day to make up for that long lasting one - and we're able to alter how much she gets depending on the time of day - because her body is very different at different times of the day)
• She loves her little pump cases and enjoys showing whichever one she's wearing to friends (the advantage of her being 4, not 13...)
• Her BG levels have been awesome! she's been high; she's been low, but not as severely as prior to a week ago. 

So, we still have to check her BGs -day and night - but she doesn't mind that. and, of course, we still have to count carbs. The pump makes that easier too though because it has a food database on it of 500 food items (that I still need to configure more to her diet). The pump also does the math for us (the insulin/carb ratio) and has all the ratios programmed throughout the day (because they vary) - as well as the amount she gets (depending on the time of day) when she goes too high. We have to change the insulin and inset to the pump every 3 days. We've done it twice at home now and although it's still a two man job, it's not a big ordeal.

The only slight hardship we've had lately is that K's been sneaking food... We don't get mad at her but let her know that she can usually have the food item, but just has to tell us first so we can dose her. We know we will have plenty of challenges ahead of us, but we are just thankful for this very manageable week!!

Imagine waking up in the middle of the night...

Imagine waking up in the middle of the night, feeling pain, then looking at the source of the pain - and it's your parent giving you a shot!! That's what happens to K more often than we can count. Last night, I was the source of her pain. Her BG was 273 at midnight. She woke up a little bit as I checked her (pricking her finger with lancet; meter then reads that drop of blood, giving us that 273 number) and, as usual, never minds getting checked. (The lancing devices are amazing these days - one hardly feels the prick.) But with a 273 reading, she needed insulin and because she was somewhat awake, I let her know what was coming; other times when she sleeps through the check, we inject her as stealthily as possible and sometime she thankfully sleeps through it, sometimes she jerks her arm/leg (and then we wonder if all the insulin got in there...), or she squeals.

Sometimes I walk through our actions with regards to diabetes emotionless - it's just something we have to do: get checked, get injections, make sure she doesn't eat more or less than what she's been medicated. It's what we have to do to keep her healthy; there's no point spending much time feeling sorry for K or us. But last night, in my half sleepiness, I just felt horrible. She cried and cried about that shot, and in turn, made me cry that I was the source of that pain. It's easier in the daytime to explain that she needs it to stay healthy and to eat good food, but at night, when we're both asleep or borderline sleep - it's just plain sad.  I am so thankful that nights of injecting her are nearing an end. The pump arrived last week and we're getting her on it with a day of training on Monday!! So, from then on, when we have to give K insulin, we just press a few buttons on the meter remote and she's medicated!!! 

Here is the opened package of the pump (on the left) and the meter remote. We have a very FULL day of training on Monday; she'll be on the pump by lunchtime that day :)  . She's excited too (but was first angry that it did not come in purple) but I worry how she's going to feel wearing it with her cute leotards and similar clothing :(