Monday, December 26, 2011
Monday, November 21, 2011
This past summer Joe learned to mow the lawn. His determination and will and drive is all that I see in these pictures. The pump, the CGM, the medical ID bracelet blend and meld into the periphery.
A day-in-the-life of growing up with diabetes.
Saturday, October 1, 2011
At 3:32 am....
I am awakened by the the bright glow of the hallway light flooding my room from the doorway, as Joe enters.
"Mom, can you cover me with a blanket? ... I just had a really bad dream..."
I got up. I followed Joe back to his room. I grabbed a blanket from his closet shelf and spread it over his lean little 8 year old body. I kissed his cherubic, dimpled cheek. I grabbed the glucometer and readied it for a blood sugar check. I lanced Joe's finger. The blood wicked up the test strip. 5-4-3-2-1. A 97 graced the screen. Dexter was showing a smooth trend-line. I picked up the Dex 4 container. Shook it a bit. Nothing. No sound. It was empty.
Joe then chimed in, "Oh, I just took the last glucose tab right when I woke up Mom ... Dexter was 71 with a diagonal down."
Too tired to process the information, I said goodnight and headed back to sleep.
This morning I addressed it. Apparently, Joe has been taking glucose tabs when he feels low in the middle of the night. He is not waking us up when he feels low. He reads Dexter and "boosts" accordingly. While I am encouraged by his independence and his diligence in avoiding lows, I am a bit concerned that he has not been letting me know that he is feeling low. And. His pump settings may be off a bit due to the fact that I have not been aware of his "nocturnal boosting". Great. I am livin' the dream folks...livin' the dream.
A day-in-the-life of reigning in Joe's evolving independence.
Thursday, September 29, 2011
Sunday, September 18, 2011
I enter Joe's room and turn on the lamp. I place the test strip into the glucometer. I lance and then squeeze Joe's finger tip to create a blood bubble. The blood wicks up the strip. 5-4-3-2-1. A 234 is revealed on the screen. I bolus to correct.
Joe wakes. "Is it morning Mom?"
"It is early buddy...go back to bed. Happy five years of living with diabetes."
Joe smiles a bit. "Gee, thanks Mom. Happy five years of having a diabetic kid."
A day-in-the-life of celebrating Joe's spirit and his enduring strength.
Saturday, August 13, 2011
Saturday, July 30, 2011
Bridget was glinting her eyes in the face of the blaring sun while trying to focus on me. Joe was crumpled by the side of a heavily traffic-ed road taking on sugar.
"We can either turn around and go back home on the same path that we took to get here. It is mostly down hill. It would be easier...blah...blah..."
"OR?" they chimed in.
"We can wait until Joe feels better and continue on up the hill. It is a big one. It will be challenging...blah...blah...blahbitty..."
As she was staring straight ahead and straddling her bike at the base of the steeply graded hill with the traffic whizzing by her, Bridget quietly stated under her breath "I hate Diabetes".
In a calm and amiable tone, Joe evenly stated "Me too Bridget."
I said nothing.
In unison, they agreed to take on the hill.
Thursday, July 21, 2011
"OK Joe, I need to talk."
Joe was pre-occupied with spying on Oscar (our Miniature Schnauzer) and Gus (our friend's Miniature Schnauzer) who were playing tug-of-war with a mechanically-squeaking Zhu Zhu pet, while Bridget played the Vietnamese Bamboo Xylophone as a "doggie distraction" (again, not making this stuff up).
"Joe, seriously, I need your opinion about something."
I have him come with me into a different room. "Joe will you be OK with doing all of your care in the Health Office next year? Or do you want to do some of it in the Classroom? I need to know."
Joe responds without hesitation "Not in the Health Office. I can do lunch, if I have to. I am late to Math every day. I am last to lunch every day. I miss so much and people make fun of me for not knowing what to do." This last bit was referencing instruction that Joe would miss while he was out of the Classroom for his Diabetes Care.
"Alright, I understand."
I don't know if the 'missing instruction', or being 'last to lunch', or being 'late to Math' are magnified in his 8 year old mind. Perhaps they are. What I do know. What I can tell you. And. What many of you know is that it isn't the pricks, the pokes, the lows, and the highs that get you down. It is the psycho-social ramifications that can wear on you a bit. The "waiting", the "missing", the "stopping" for Diabetes Care is the part of Type 1 that Joe could definitely do without.
Today on the phone, I explained that Joe is more than "diabetes", much more. He is a bright, eager student. I would hate for his school day routine to be based solely on his health needs. He is ready for more independence. I want to nurture this. I want to foster it. I want to facilitate a learning environment that isn't dictated by his diabetes care. I want this not for me, but because of what he said to me tonight. Trust me ... I was ready to not rock the boat.
During Kindergarten and First Grade all of Joe's care was done in the Health Office. Those classrooms are in close proximity to the Health Office. While Joe did all of his "physical" care at that time, he relied on the school nurse to guide him verbally with blood sugar and carb count entries into his pump. In Second Grade, Joe continued to grow with his self-care and had made the "calls" when he should "boost", when he should do a "combo bolus" of 0%;100% over 30 minutes when he was going into lunch with a borderline low (70s) blood sugar, and his carb counting and nutrition label reading were progressing. At the beginning of Second Grade, the school nurse came to his classroom for his morning snack check and bolus; he would go to the Health Office for his lunch blood sugar and bolus; the nurse would come to the classroom for the afternoon blood sugar check. The care in the classroom was taking the school nurse away from the Health Office too much, so all of Joe's care was transitioned back to the Health Office for the second half of his Second Grade year.
In the spring ...
I had met with school personnel to start planning Joe's care for the 2011/2012 school year. We were wanting to support Joe with his independence and personal growth. We were also wanting to limit his time away from the classroom.
The Health Office is at the opposite end of the school from Joe's home room. On a good day, Joe walks down to the Health Office through the halls decorated with all kinds of cool art made by his school-mates, he walks down to the Health Office passing by many of his peers, he walks down to the Health Office by water fountains, bathrooms, and all kinds of interesting~to~an~8~year~old~boy stuff... he walks down to the Health Office at a minimum of 3 times daily for routine Diabetes Care. This is on a 'good day'... a day without lows ... a day without highs. Joe misses quite a bit of class-time due to Diabetes.
The tentative plan that school personnel and I had arrived at during this meeting was that: Joe would do his morning snack blood sugar check and bolus in the classroom with an aide over-seeing his self-care. He would do his lunch blood sugar check and bolus in the Health Office. His afternoon, post-lunch blood sugar check would, again, be supervised by an aide in the classroom.
The plan is being questioned a bit. I won't get into the specifics out of respect for the staff whom all care deeply for Joe and our family. I am writing to get ideas, suggestions, and input.
Parents of CWDs and/or PWDs can you please provide me with any insight to the following:
- Where does your child's care take place? Health Office? or Classroom? or Both?
- Who oversees or conducts your child's care while he/she is at school? Is it a Nurse? Is it an aide/a teacher/a principal? If it is not a Nurse, do they delegate the medical tasks to the non-medically licensed-personnel?
- Have you been asked to sign a waiver if care is provided by anyone other than a nurse?
- Any other good tips/ideas/situations that you think could be helpful?
A day-in-the-life of going to bat for Joe.
Wednesday, July 20, 2011
The car-ride to camp yesterday was much different than the car-ride to camp on Monday.
Monday's drive sounded something like this: "Joe decrease your basal by 40% for 7 hours"... "Joe don't correct for lunch if your number is 140 to 220" ... "call me if your number is over 220 because we should just do a partial correction"... " just call me for all boluses, call me for snack times and lunch time if I am not there."
Yesterday's car ride went down like: "Joe you gotta keep moving when you are in defensive mode. You need the momentum to stop their push" .."Skate with the puck" ... "You, Joe, are an incredible skater and you know mom does not hand out compliments readily" ... "Try some shots from center ice" ... "Joe, your 'behind the net defensive move' is not a 'move'. Don't let yourself get trapped behind the net!"
Do you see the shift from Day 1 to Day 2?
From diabetes to hockey?
We are doing well.
First off, Joe loves Hockey Camp! The schedule consists of ice time from 8:30am until 11:30am. He eats lunch from 11:40 until noon. Then there is classroom time and land drills for the remainder of the day. The camp is fast paced and the activity level is up there. The diabetes management has been similar to how I ended up managing Hockey Tournaments during his past season.
I instructed Joe to decrease his basal by 40% while driving to the camp. I had intended to check his pump when we arrived to camp (I didn't...this is some foreshadowing).
8:30 am: Pre-ice blood sugar was 236, we did nothing
8:50 am: I was watching Joe from the warm room. He stepped off the ice and checked a number. He was 208. He did nothing.
9:10 am: Again, I watched him step off the ice. He was 150. He shot back 14grams of Nerds.
10:20 am: While the ice was being groomed, Joe came off for a snack. He was 53. He drank a juice. I then checked the basal reduction that wasn't a "reduction". Joe had accidentally set the pump to give him 40% more insulin per hour. I could have beat myself up here. I didn't. Joe and I treated the low and never looked back. Joe was really starting to feel the hunger pains from the low. He ate his F-Factor Bar (26 grams of carbs). After realizing our error and knowing he was headed back onto the ice for another hour, we did not bolus for it.
10:50 am: Blood glucose was 170.
11:40 am: As I entered the locker room Joe was programming his pump. His blood sugar was 218 and he was going to eat 88 grams of carbs. I had written a note to only bolus for 80 grams. I did not go over corrections. I told Joe to only do a carb bolus here. I did not want him to correct for the 218. I was concerned he would go low.
1:20 pm: While I was gone, Joe checked a number. He was 102. He took 2 Starbursts.
2:50 pm: Joe checked a number as we pulled out of the parking lot. He was 150.
*From 4pm until 6pm Joe was in the 300s. I find this to happen when we reduce basals and boost aggressively. I did not know how his blood sugars would respond to this particular situation. Tomorrow I will incorporate a post-camp basal increase into our "plan".
I decreased Joe's basal by 40% before pulling out of the driveway.
8:30am: Pre-ice blood sugar was 221 (nice)
9:30am: I am spying from the warm room. Joe steps off the ice for a routine check. 209. He does nothing (which is what I told him to do for that number).
10:20 am: I help Joe with snack. He is 150. I tell him to only bolus for 16 grams of the 26 gram F-Factor bar.
11:40 am: BG 136. Joe boluses for lunch giving himself 8 grams of carb for "free".
1:10 pm: BG was 213. He does nothing as he was going outside for drills.
2:20 pm: After the drills he checked himself. He was 99. He took 8 grams of sugar.
*Per previous experiences and Monday's post Camp highs, I decided to crank up Joe's basal by 50% for the next 3 hours. His blood sugars for the afternoon stayed in the 150s.
What I am learning: This whole letting Joe go out into the world without his Head Auxiliary Pancreas is going to be a "process". There will be mistakes. The numbers will not be perfect. Joe has "basic diabetes" and even "not-so-basic diabetes" down. I know Joe. I know that having to march from the locker rooms to a land-line in the front office to call his mom every time he boluses would take away from his first Hockey Camp experience. Admittedly, I have been lurking in the warm room. I check in with Joe three times daily. For snacks and lunch I am by his side. The "free carbs" with his snacks and lunch depend on where his number is. Also, I want him to not correct for blood sugars that range from 140 to 220, but I want the "negative" correction for blood sugars less than 120, and I wanna only partially correct for blood sugars greater than 220. Yes, I have issues.
We are doing this. Joe is doing this.
A day-in-the-life of trying to be a 'Remote Support Pancreas'. It is a tough job, but it must be done to allow my son to grow.
Monday, July 18, 2011
It is 4:30 am. I have been up since 2:30. Joe was high (blood sugar was 231), not "correctable~night ~ high." I usually only correct for blood sugars over 250 during the night out of fear of lows. This is a special night though. I did not want him to wake-up high and have "correction~insulin" on board along with his breakfast insulin as he starts his first day of Hockey Camp.
I was shaking my head a bit, in disbelief, at myself, dressed in black yoga pants, a long sleeve shirt, with a jacket tied around my waist. I was sweating. It was 90 degrees. I was driving Joe to a rink.
Looking in the rear view mirror, I saw Joe peering down at his phone; thinking about camp I assumed. He then started pelting me with questions. "So, I call you first?" "What if your phone is off?" "What if someone makes you turn it off?" "Then I call dad?" "What if his phone is off" "Then I call 9-1-1?"
My responses were as follows ... "Yep, call me first... but really Joe, I am gonna be there with you most of the time." ... "My phone won't be off. It never is when you are not with me." ..."No one can make me turn off my phone...nope, no one ... " (I would go all D' Mama Honey Badger on them if they gave me any guff) "Nope not even a policeman could make me turn it off." "Yep, dad." ... "I'll tell dad to keep his phone on this week."
Then to address the 9-1-1 question. Oy.
"Ah Joe, the 9-1-1 is on your phone to remind coaches or teachers or friends to call for emergency assistance in case you are unable to help yourself with your diabetes."
Joe replied "Well should I call them if I cannot get a hold of you or dad?"
Clearly my vague response above isn't gonna cut it. I am not one to mince words and have been open and honest with Joe about Type 1, so why am I struggling here?
"Joe please...please...please (insert a silent "For The LOVE of GOD" and a up~to~the~right~sideways heavily mascara'd fringed eyeball roll here) DO.NOT.CALL 9-1-1 if you cannot get a hold of mom or dad while you are at camp."
Joe then asked "Well when would my coaches need to call them?"
"Well Joe, they may need to call them if you went so low that you could not help yourself ... like if you went unconscious or had a seizure. The chances of that happening are rare Joe. But, we have to be prepared in case. Right?"
*please say "right"...please say "right"...please say "right" ... and drop this uncomfortable topic*
Joe then has the notion that 9-1-1 could 'help him' with bolusing if he cannot reach me. "Ah, Joe... (where to even begin)... 9-1-1 will not know the first thing about bolusing you. They can save you in life or death emergencies, but please, please, please do not call them for help with bolusing or carb counting. Trust me on this."
Saturday, July 16, 2011
I don't really think that far ahead.
I suppose, I take it day-by-day.
It is hard to describe. When I send him off on his bike as I follow on foot, I wonder if I will find him in the street crumpled from a low. I am relieved when I find him pedalling with intense vigor. When he is left in the car recovering from a low as I run into grab Bridget from an activity, I wonder what I will see when I return to our van. I am relieved when I find Joe with his eyes open and his skin taking on color. When I call into the house, I pause and wait for a response. I am relieved when the lisp-kissed, nasally voiced Joe calls out. Always, in the back of my mind...in the periphery of my conscious, I half expect no response ... eyes closed ... pale integument ... scrumpled...crumpled ... in-need-of-immediate-assistance Joe.
So, Joe has been giving camp a bit more thought than I knew about.
Last night, Joe's phone came.
Last night as he came up the stairs, Joe said "I feel low". He then headed into the bathroom. I stopped him. I told him to check a number first. I reminded him that he must "react" to a low feeling immediately. If he puts it off he could become too low to know what to do to help himself.
I don't know if it was the arrival of the phone and what it represents that initiated his response.
Perhaps it was the blood sugar of 63...and my reminder of the sequela of untreated lows.
Joe curled his long, lanky body up in my lap last night and cried in my arms. He cried because he is scared. He is scared to go to camp without me. He is scared to manage diabetes without "help". I explained that I will be around the rink quite a bit and we will figure this out as we go. I re-iterated that he is never alone. His family, his friends, his community envelope him in love and in support and in certitude.
I then did what any Temporary Head Pancreata In Charge would do ... I quizzed the shit outta him.
Me: "What do you do when you eat?"
Joe: "I look at the carbs."
Me: "What else? What else has to happen when you eat? Let me know everything that you do..." I wanted to make sure he knew the sequence of what needs to take place without me in the midst reminding him.
Joe: Right on the money with, "Check a number ... count the carbs ... bolus."
Me: "What if you are low?"
Joe: "I take 3 sugars or drink a juice."
Me: "What do you need to do 15 minutes or so after taking sugar?"
Joe: "Check a number to make sure I have come up."
Mentally and physically preparing Joe for his day-in-the-life at Hockey Camp with Type 1 Diabetes in tow. 8 years old seems so young to me right now.
Thursday, July 14, 2011
I wonder if I sounded a bit "nerdy" to the teenage boarders and skaters and bikers? Joe took his bike, his Rollerblades, and his skateboard to our local Skate Park yesterday. He consumed about 45 grams of free-carbs just to keep his blood glucose in the 70s and 80s.
The ramps and jumps are a bit intimidating at this particular park. Joe flirts with them a bit as he rides and rolls over the lower portion of the ramps. He is slowly creeping higher and higher up the inclines. His confidence wanes when he is on ramps that are over 5 feet. He rides and skates up them without hesitation. It is the going down that seems to make him stop and take pause.
I was encouraged by his reserved caution, as I looked up and watched him struggle with going down a rather high ramp while he sat at the peak perched on his bike. I could see the desire, the want, of conquering the fear of going down. The internal pull of his fear was visible. The older boys were encouraging to him. I stood back and watched the conflict conveyed through his eyes, his face, and his body. After many minutes, Joe decided he wasn't ready. He slid down the ramp while supporting his bike. He did not seem disappointed in himself. He simply stated "I am just not ready for that ramp".
Which brings me to my post...
A staff member from the Tim Thomas Hockey Camp called me yesterday afternoon. The connection was static-y, which in part, added to my feeling of isolation as I tried briefly to explain Joe's situation with camp, Type 1, lows, exercise.
I started out with a "thank you" for calling me back...blah, blah, blah..."My son Joe is in your camp next week in Vermont ... blah" ... "He has Type 1 Diabetes...insulin pump...blah...blah...blahbitty"... "Do you have a trainer that travels with your staff?"
Static-y...wind-ily...connected staff member responds with "well we do have someone that is CPR certified."
How do I even go into anything about anything with this guy over the phone?
I found out that they divide up the campers by age and ability. The groups will consist of about 15 kids. A coach will be assigned to stay with the group throughout the day as the campers go through different stations. They will be on the ice for 3 hours and then they will be off the ice for 3 hours for outside play, hockey videos, lunch...etc. Joe's schedule will not be known to me until I drop him off Monday morning.
Upon conclusion of the phone call, the pleasant staff member did say that I could give Joe's coach my cell phone number when I drop Joe off on Monday. I almost choked on my spittle at that point, thinking "you bet your bippy he is gonna have my cell phone number and a crash course on lows."
Explaining to the general public that a low blood sugar is something that must be dealt with immediately is complicated. It is difficult to convey that Joe may become a bit "off", confused, or be totally "normal" with a dropping glucose level. The lows can come on suddenly and they must be tended to...and Joe may not be in his right mind to help himself in this situation as the only fuel source for brain cells is glucose. The lows are one thing. Then add in what must go into eating: the blood sugar check, the carb counting, the bolusing, the "he must eat everything" ... and ... the compensation of insulin doses for activity, well, it is too much to communicate in an abbreviated manner for a week long camp.
I am looking down the "ramp" much like Joe was yesterday.
Am I ready?
Here is what I have come up with:
- Joe and I talked about a basal reduction for the day of 35% (I said 30%, he said 40%, and then he compromised with 35% ~ fine).
- I tweaked the Play Date Cheat Sheet for camp, keeping it simple...1 page.
- I will briefly go over the Camp Day Cheat Sheet and emphasize the importance of treating a low blood sugar with Joe's coach. I will have my cell phone number highlighted at the bottom of the Cheat Sheet.
- I will have Joe carry Woodchuck everywhere with him. It houses his glucometer and sugar sources.
- I am going to only partially bolus for breakfast. My biggest concern is Joe skating with breakfast IOB circulating. He will drop over a 100 points in 30 minutes with breakfast IOB lurking in his system. I can always correct a high before I leave him if need be.
- I will pack separate bags for snacks and lunch. Each bag will contain a carb count to make it simple for Joe to bolus.
- Buying TracFone today or tomorrow so that Joe can "practice" calling me over the weekend.
- I think I will go in every hour or hour and a half on the first day and go from there.
I wanna make it down the ramp. I wanna have the courage to push off and go. However, I think I may need to slide down the "ramp" on my butt.
A day-in-the-life of a glimpse of what it takes to send Type 1 to camp or anywhere really. It takes courage.
Thursday, July 7, 2011
I found out why, the hard way, you are supposed to use that little plug-cap that is enclosed with the box of Animas Insets. Now, don't get me wrong. I did, at one time, use them. I used them for every bath. I "plugged Joe off" for every dip in the pool or the lake. I did...years ago. Truly, I did.
When you are dealing with diabetes and the non-stop routine and management you start to cut corners a bit. Or... *ahemm*... at least I do. I count carbs down to the gram, I pop sites into Joe as sterile-y as possible, I mother bird like a pro... but apparently I cannot be bothered with this cap-thingy. Frankly, I haven't used it in years. We have never had an issue due to my plugging exclusion. No infections. No clogs. No anything. It was a corner I was fine with cutting in the grand scheme of things.
Back to the story...
We are vacationing. We are visiting Cape Cod.
Yesterday was the first time Bridget and Joe have ever played on an ocean beach. There was digging. There was castle making. There was crab saving. There was a pump~site~clogged~with~beach~sand. And. Once again, managing Type 1 in Joe's life provided us with adventure and the ability to effortless-ly entertain any on-lookers ... and trust me...there were a few.
Here is how it went down:
Joe emerged from making "low~tide~crab~sanctuaries" for a blood sugar check. 5~4~3~2~1. A 156 was obtained. He wanted to munch on a few potato chips. Fine. I am not a carb~tight~wad, as many of you know. I figured I would let him have a few chips for "free", but would plug him in and crank in a couple of hours of basal before he went back to wave-jumping and crab-saving. I go to plug in the pump tubing to his site. I line it up and start to insert it...it falls short of the "click". I flip it around...try to cram it in again...no "click".
Once the site was in and 2 hours of basal were given, I looked in Woodchuck #2 to see if we had a plug. I did have a plug, but it was for the Contact-Detach system. It didn't fit the Inset. Dave then MacGyvered the system by using the connector off of the new set. He went all "rodent~like" and chewed off the tubing. We then plugged the new site with the connector and covered the whole set~up with the IV 3000.
It worked like a charm.
A day-in-the-life of realizing the rules are there for a reason... sometimes.
Tuesday, July 5, 2011
Monday, June 20, 2011
A hushed answer of something like "Sure...I am just gonna check Joe's number and then I'll grab the veggies quick."
She knows that I am worried.
Joe is asleep or passed out or unconscious. I don't know which. My hunch is asleep, but with "D" as part of the picture it clouds my vision at times.
We had left the pool about 25 minutes prior. He slipped and fell in the pool parking lot as we departed. Road rash resulted. He didn't cry. He got up and brushed himself off. Once we were to the van though, his pump started in with the decrescendo alarm. "Pump Not Primed" was messaged on the screen. Fine. I unhook the pump from Joe. I rewound. I re-loaded the cartridge. I hooked the pump back up to Joe's site. And...off we went for our 20 minute, or so, drive to the farm. I hadn't checked Joe's blood glucose for about an hour...or so. Who knows.
I blare the music. I am thankful for the peace of the drive. The kids are too tired to bicker. The music drowns out any conversation they may want to initiate. I can mindlessly drive. I can enjoy my thoughts without interruption. I am now exhaling.
Then, I notice in the rear view mirror that Joe is out. Head~slumping~under~the~seat~belt, head~bobbing, mouth~slobbering~a~ bit~ "out". In my mind the following thoughts fleet "he is just asleep"..."however, what if the pump malfunctioned after that fall?" ... "how much insulin was in the cartridge?" ... "it would be too soon for him to pass out from that ... right?" ... "stop it, he is just sleeping!" ... "he is OK" ... "but..."
The thoughts continue as such. The positive, happy go-lucky me talking down the more realistic, morbid me. Through this conversation in my head, I decide to not freak and to just check his number once I arrive at the farm.
I prick his finger. He doesn't budge. 5-4-3-2-1. A 213 is obtained. I don't correct.
Salad turnips, kale, lettuce, garlic scapes, and radishes are gathered quickly so that I can get back to my tired crew that is holed up in the van.
Bridget is struggling with the in's and out's of sleep.
The drive home is more relaxing with the knowledge that Joe is indeed sleeping instead of the alternatives. Ah .... the little things.
A day-in-the-life of what enters my thoughts while caring for my child with Type 1 Diabetes.
Saturday, June 11, 2011
Joe had a busy week. His week entailed all the usual end-of-the-school-year festivities. Baseball for 2 hours each evening on Monday, Tuesday, and Wednesday. A field trip in 90 degree weather with a 3 mile hike on Wednesday. Thursday was Field Day followed by the school Bar-B-Q. Today was the "Closing Day" of baseball.
Joe is grumpy.
Joe refused to eat dinner tonight ... not out of spite, he was just 'not hungry'.
Fine. I decided to basal assess the little troll. He has been running high after dinner for the past few nights and I would love to see what is going on with his underlying rates.
I let him know that we would not be assembling any sort of meal for him at a later point in the evening. He understood.
About an hour later...
Joe was asking for food. Dave and I stood our ground and refused. I don't know if it comes through on Beta Buddies, but Joe is a strong-willed being. I admire this quality. It will serve him well. However, at times, it can be a difficult quality to cultivate and nurture...and tolerate...and deal with... and live with...and co-habitate with.
Joe, angrily and somewhat stomp-ily, headed up to his room. I went to the super-market for some wine and cosmetic products. Dave and Bridget were reading. I was gone for about 45 minutes.
Upon my return I checked in with Bridget. She said something about "Joe's door being locked... been trying to get in....blah...blah...blah" (she has a 'talking issue').
His last number was 80 about an hour or so ago.
I went to his door and attempted to turn the knob. Nothing. It was locked. I knocked, loudly.
I pounded and yelled a bit ... "Joe!!! Let me in!"
I called down the stairs for Dave. I needed some "back-up".
Then, I started in with the threats, "Joe Maher if you do not open this door right now there is no TV, no DS, no roller blading, no nothing, I will take away E.V.E.R.Y.T.H.I.N.G in this world that makes your life pleasurable!!!!"
Dave was then pounding on Joe's door, while I ran to grab my zebra-print bobby pin. I unbent it and straightened it a bit... I ruined it (one of my favorites). I tried slipping it into the key hole. It was too flimsy. Nothing happened. The door remained locked. My thoughts fleet to Joe's window. It is too high for us to reach exteriorly. Out of desperation and the need to 'do something' I pounded on Joe's door. Dave ran into our room and banged on the wall that separates Joe's room from my closet. Our efforts were loud.
Bridget was watching and asked (no, not even I ... can make this "stuff" up) "where is the cowbell?" I let her know that "this is no time for cowbell".
Dave ran down stairs. For what? I do not know. (a screwdriver, he now tells me)
I ran to my bathroom for my red~glitter~star~bobby~pin. It was firmer than my zebra one. It worked.
The sight when I entered was a sleeping Joe ... sweaty ... drooly ... sleeps~like~the~dead~Joe. It took a couple of minutes to shake and wake him. Dexter read 200 (double up). Real-time BG was 188. Wonderful, I found out why we are having so many post-dinner highs. I crank up his basal by 50% for 2 hours. I went ahead and increased his basal rate from 5pm to 7pm from 0.175units/hour to 0.2units/hour.
Joe was already back to sleep.
Dave, Bridget, and I were somewhat stunned over the antics that occurred during the previous 4 to 5 minute window of time.
A day-in-the-life of caring for someone you love who happens to have Type 1 Diabetes.
Sunday, June 5, 2011
Sunday, May 29, 2011
I haven't done one of these posts in awhile. It is more of a "day-in-the-life" of what many may not notice or see. The underlying work of diabetes is lost on many. Around-the-clock it goes. It knows no breaks. It does not acknowledge holidays. Vacations are not an option.
I have become so accustomed to utilizing Dexter (Joe's Dexcom 7+ CGM) in managing activity and special events that I felt "blind" yesterday. You see, Dexter fell out Friday, after school. Joe did not want to have a new one put in. He wanted a little "Dexter Break". Fine by me. I get it. It, diabetes and it's entourage, is a load, physically and mentally.
Note: Yes, in hindsight a decreased basal would have been a good idea for our day. First off, I think the rogue-pizza-insulin-resistant-highs that were corrected all night long finally crashed. The insulin caught up to him. Also, I had no idea that he was going to go all Lithium Energizer Bunny on me.
Tuesday, May 17, 2011
Yesterday, we headed into our local supermarket to recycle cans and bottles. The last "installment" from our neighborhood.
Joe had wanted to do more than "ask" for money for the Walk To Cure Diabetes. He wanted to earn it. He and Bridget decided to collect cans and bottles from our street and recycle them to raise funds to donate to JDRF.
Joe would get somewhat discouraged if there weren't cans out on the porch. He stated "these people aren't taking me seriously." He wanted to knock on their doors to point out that we were collecting the cans at this point in time. I reminded him that we distributed the letters so that we would not need to bother people. This didn't convince him. Bother people he did. If there were not cans left out, Joe went to the door, rang the doorbell, and explained his cause. He was pleasantly surprised when one generous neighbor gave him a $10.oo bill to donate.
Doin' the "Dirty"... The Maher Clan was cramming bottles and cans into those machines like nobody's beeswax.
In the four years since Joe has had Type 1 I have always been very cautious in this territory. The "Cure Territory" is dangerous I think. I have always been careful in what I say around Joe during the fundraising, the letter writing, the Walk Kick-Off Luncheon, and in general about a CURE. You see, I have never wanted him to think there is anything "wrong" with him per se. I have never wanted him to think something about him must be changed or fixed to make him "right". I have never wanted him to count on a CURE in his lifetime. I don't want him to be disappointed.
Perhaps I need to follow his and Bridget's lead on this one. My hope should be more than just a flicker.
I admire my children's desire to make a difference. I admire their hope. I admire their dedication.
A day-in-the-life of pride. I am proud of Bridget and Joe.
Wednesday, May 4, 2011
What about Dave's very Yoda-esque statement one evening when we decided to let a blood glucose of 220 "ride" without correction? Have I told you about that? I think I did during last year's Blog Week hosted by Karen at Bitter~Sweet (click here for details on this year's Blog Week, which starts next Monday, May 9th).
"An A1C does not one high night make."
Happy Star Wars Day!
In A House A Few Blocks Away (remember we have moved)
A Post Titled "Mom How Can I Win The Empire With You Checking Me"
A couple of hours later...
I go to check his number while he is playing Lego Star Wars on the X-box. He is using both hands on the X-Box controller. As I try to lance his finger, Joe emphatically states "Mom, I can't win the Empire with you checking me!"
A in-the-recesses-of-my-mind "for f*ck sake Joe" was muttered ... accompanied perhaps with a ever-so-slight eye roll, as a smile crossed my lips and face.
My response ... "Of course, Joe win the Empire" ..."just do it in a few minutes-OK?"
A couple of minutes later, Empire won and all, Joe did his blood sugar check. A 183 was obtained.
A day-in-the-life of recognizing that childhood trumps diabetes.
Tuesday, May 3, 2011
As my "network" of "D" friends expands, I am increasingly aware of type 1 deaths, diagnoses, and hospital admissions from low induced seizures and loss of consciousness. With each incident, I mutter sadly, quietly, and angrily, and pissed-offly in my head "yet one more reason why Insulin is not a CURE."
I pratically spit it, the statement.
Type 1 Diabetes is difficult, at best, to manage. It does not lend itself to being "controlled". It can kill. The medication used to treat type 1 Diabetes is insulin.
Insulin is a hormone.
Insulin can be deadly if too large of a dose is given. Insulin can cause seizures, coma, and even death. Insulin is the only treatment for type 1 diabetes. Without insulin, persons with type 1 diabetes die.
Diabetes affects EVERY organ system in a persons body. These people look totally "normal" from the outside, while this disease wreaks havoc on their vasculature and organs. Insulin is needed, not only as life support, but to temper the effects of high blood sugars on tissues, vessels, and organs.
Insulin is not a cure. It never will be.
It cannot be taken orally.
The acidity of the stomach destroys the proteins that "make-up" insulin and, consequently, render it useless. Insulin must be injected with a needle. It is give subcutaneously several times daily. It is give with food. It is given with high blood sugars. It is given as "basal", a maintenance dose so-to-speak. This, my friends, is no CURE.
Insulin must be administered to keep persons with type 1 diabetes alive. Without it, they would die. Prior to 1921, the year exogenous insulin was produced/discovered, a person with type 1 diabetes would die a death of "starvation," as their cells would be unable to utilize glucose as an energy source. The death was described as painful and agonizing and miserable between the unquenched thirst, the continual flow of urine, and the insatiable hunger ... to no end... well, there would be an end ... The End. "Life Support", it is. Again, A CURE, it is not.
Dosing is not simple. It is complicated.
It is not a medication where you can just "dose it" and "forget it". You administer it, you check on the effectiveness of that dose a couple of hours later by checking a blood sugar level. Needle after needle after needle is the life of a type 1 diabetic... around the clock ... hour to hour. Insulin is not a CURE.
The balance required in dosing insulin is tenuous.
If you give too much it can induce a low blood sugar reaction called "hypoglycemia" or an "insulin reaction". A low blood sugar is an immediate emergency and must be dealt with promptly. It can occur at any time. A low blood sugar can lead to seizures, coma, and/or death.
If you don't receive enough insulin over the course of several hours you can end up in Diabetic Ketoacidosis; this is a life threatening condition that requires medical attention immediately.
Finally there are the reasons we all do that we do. The reasons, and the list is long, as to why we attempt to keep "tight" control of blood sugars... the long term effects of diabetes... the "complications". High blood sugar levels affect blood vessels, organs, and nerves throughout the body. Retinopathy, neuropathy, nephropathy, and all the fucking "opathies" along with cardiac disease, peripheral vascular disease, and dislipidemias...and on and on ... are but a few of the consequences of diabetes. A CURE? Definitely not. Period.
Too much Insulin.... you fall victim to a low. Too little ... you are stuck chasing down a high. Not a CURE.
Activity, monthly cycles, stress levels, environmental temperatures, illnesses, and growth spurts must all be accounted for when administering insulin. Blood sugars are affected by all of these factors and by oh, oh ... so much more. Insulin is far from a CURE.
Insulin is not a CURE.
A CURE it is not.
A day-in-the-life of gratitude for Insulin .... yet hoping for a less laborious treatment regimen for type 1 diabetes. A CURE, this is not.
Thursday, April 14, 2011
I am finding Joe even more "work" as I am trying to keep him from tripping, careening, falling, or flying to the ground to smash his already damaged melon into the asphalt, dirt, wood chips... pick your poison... it is all dangerous to a concussed cranium.
As his body has slowed, interesting things have been discussed and divulged as his thoughts have time to stew. The discussions are particularly titillating on "Oscar's Business Walks".
During the "Business Strolls"...
Joe counts how many times he "marks", "squirts" (what is the difference?), and "pees", and well you know ... does the "big business". As we walk Joe continues to keep track and reports with each "mark", "squirt", and "real-business" the updated tally. I just "uhm" and "ahhh", not really listening, just waiting for the mother load of business so that we can head back home.
On our walk last night....
"So, am I to young to go to Juvie?", Joe sprang on me after a "mark, squirt...etc...tally update".
"What?" (dear God, seriously?)
"You know Juvvvie ... " (I guess the extra emphasis on the "v's" was employed to jostle my knowledge base) Joe then waits patiently for my response while he lets Oscar tangle himself on 30 feet of retractable leash.
"Ah, yeah ... too young"... I was not gonna go 'there' ... and I certainly don't wanna know why in the hell he is asking.
This morning, on another Oscar "Business" walk ...
Joe was talking about his tubing from his pump. Apparently it was giving him a "feel" in the "nether regions". I have never heard him complain about his tubing. It is all he has known since he was three years of age. So, I asked ... thinking he would answer "no"... I asked if his tubing bothered him. A simple "sometimes" was expressed in the soft-lisp-kissed-nasally voice.
"Yah know, there is a pump that doesn't have tubing." I then asked, "Would you want to try that sometime?"
"Sounds nice mom ... I think so ... maybe."
Wow... Not sure how I feel about this...
Pre-Ping, I wielded the Animas Insulin Pump like a pro while keeping up with an "On-The-Go-Joe". I could check the time, IOB (Insulin On Board), and bolus while Joe ran, slid, scootered... and ice skated. Not once was a site dislodged due to my pancreating feats and prowess.
The following depicts some of my adventures with a 3 year old, a 4 year old, and a 5 year old Joe (pre-Ping) ...
Scootering down the street during a correction bolus...
The "traffic-cone-appendage-skateboard" incident....
Running down the street during an IOB check ... I didn't dislodge his site even though the tubing was as tight as my Jordache Jeans were in High School.
The seriousness of this conversation has not been determined. I am willing to look into it for Joe if he is, indeed, curious about the pod. I have heard that they get "knocked off" easily during high intensity sports like basketball. Is this true? And, I have also heard there is/was an IOB issue. Laura ... Lorraine ... Penny... anyone? I guess I am willing to think about it. Also, does anyone know if Dexcom is as close to coupling with Omnipod as they are with Animas? Another concern of mine for sure.
A day-in-the-life of wanting to lose the "leash".