The Hill

"The way I look at it guys is that we have one of two options." We were faced with a dilemma on our "Adventure Ride" yesterday. Joe and I were in-line skating. Bridget was biking.

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.

A day-in-the-life.

For Joe...

Pre-post note: Joe's school, his teachers, his teacher's aides, his school nurse, his principal have all been exemplary in their care of children with diabetes. I am sharing this out of Joe's need and out of my need to support Joe.

"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.

Some history...

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:

1. Where does your child's care take place? Health Office? or Classroom? or Both?


2. 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?


3. Have you been asked to sign a waiver if care is provided by anyone other than a nurse?


4. Any other good tips/ideas/situations that you think could be helpful?

A day-in-the-life of going to bat for Joe.

About The Phone...

So, his phone does not get service at the rink. Oh how I wish diabetes management was "black-and-white." It is difficult to explain the complexity of basic diabetes, let alone diabetes management on 'steroids', which is what managing this much activity is like...and add in leaving him for periods of time without a 'trained' person and no phone...well, I have been lurking more than I anticipated.

**********

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.

Day 1:

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".

Day 2:

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.

Ah...9-1-1...Q&A Session With Joe

Good, the correction is kicking in. "Dexter" just showed a "175 smooth".

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.

**********

Yesterday...

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?"

*Oh FUdGe-sickles*

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."

A day-in-the-life of hoping Joe doesn't call 9-1-1 for Diabetes Management instructions.

Check out the awesome Camp Tips from the DOC here.

The Phone...

About a week ago a good friend asked me if it helps knowing adults with Type 1? She wondered if knowing adults that have had diabetes since they were pre-schoolers gave me hope for Joe's future.

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."

Me: "Right."

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.

The Ramp

"Joe, pull Dexter outta your pouch and eat your bunnies!"

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."

*ugh*

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.

"Rodent-like" MacGyver-ing

Sometimes, in this life, I feel the rules don't apply to me. Like the Rule of 15's... sometimes I tweak that a bit. Or, like a month ago ... when I was going 32mph in a 25mph zone and I got pulled over by the Fuzz, I immediately asked the officer for a reason as to why I was being detained. He gave me a little guff and then let me know. I was internally eye-rolling my Lancome fringed eyeballs and internally muttering a "For goodness Sake isn't there like a 10mph grace-speed with the whole speeding thing?".
Well...

Yesterday...

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.

So...

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".

The Removed Site (note the tan color in the set)

The pump insertion site was filled with sand. Joe calls for a site change and exposed his cheek. Dave was my assistant. I needed one. Slapping in a site in the middle of a wind-swept, sandy beach requires some mad pancreating skillz. IV 3000s were blowing in the breeze...IV Prep was precariously placed on a towel ... We used the old cartridge. It still held about 36 units of insulin. And, we used the old tubing too to avoid the whole unloading, re-loading, and priming steps that the pump would require.

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.

The Chewed-Off Tubing MacGyvered Plug

It worked like a charm.

A day-in-the-life of realizing the rules are there for a reason... sometimes.

That Is NOT On My Playdate Cheat Sheet...

What sending Type 1 on a Play Date looks like:

A few days ago...

The water mushroom and the blaring music were a concern.

I lounged on my chair by the pool. The cell phone was poised on the arm of the chair. My eyes scanned it regularly for any sign of a call, a message, a notification. I was with Bridget and her friend. Joe was at his friend Adie's house. The phone is a constant companion during Joe's absence. I have trust and faith in Joe and in Nikki, Adie's mother. They may need me though.

The green notification light started blinking.

My right hand refreshed the phone. Damn. I missed the call. It was them.

I call them. The peripheral background noise makes the call difficult to interpret. Nikki let's me know that Joe was 63. I think that is what she said. I repeat into the phone staccato-like "six" "three". She confirmed. Something about sugar or Starbursts was mentioned. I ask in a loud cave-woman-y voice "He.took.sugar!?" Again, at least I can hear the "yes" that is delivered in response. Nikki goes onto say something about Joe wanting a snack and he was mumbling something at her like "combo bolus". Well.... Ok then. This isn't on my Play Date Cheat Sheet.

Joe gets on the phone.

The lisp-y, the nasal-y, and the soft spoken-y really isn't working for me here. The noise of the water 'shroom splashing and the Pop Rock spewing from the speakers is too much. I heard "snack" and "combo". I interpreted the issue as "Joe, are you wanting to eat now? ... are you calling because you don't want to wait the 15 minutes to recheck your blood sugar? ... and you want to do a combo bolus to cover the snack?"

I heard a "yes", with the emphasis on the slightly drawn out "s" that we all know and love in the lisp.

Fine.

I understood.

I tell him to do a 0%:100% extended over 30 minutes (this is NOT intended as medical advice). I tell him not to enter in his BG, assuming he will correct with the 12 grams of carbs he just consumed for the low. I can pick out an "OK" from his end. Then, abruptly, the call is ended. He hung up, ready to man his pump with the instruction given I assume.

Bridget comes at me from the snack bar. She is shaking two Tootsie Pops like they are maracas to the beat of the music with confidence and sass. I continue to scan my phone.

A text came in... "Don't worry... we r all good!"

I responded with ..."I know he is in good hands!"

A couple of hours later, when Joe is back with me, he checks his number. A 108 graces the glucometer screen.

A day-in-the-life of critical thinking as he expands his independence.

Click here for my original post on "Play Dates".