Tuesday, March 29, 2011

Pancreas Boy and the Case of the Vanishing Pancreas

Yesterday was a day of revolving door meetings with nurses and and doctors regarding the whosits and whatsits and howsits of diabetes.

The who: Pancreas Boy

The what: Type 1 Diabetes

The how: autoimmunity?  trauma?

There are 2 main types of diabetes. Phillip's is the most common in children, yet the least common overall. The suspicion is that during the battle of skateboard v pancreas- the blow that the pancreas took started a chain reaction that ended up with Phillip's immune system targeting pancreas cells as damaged and starting to get rid of them. Now if we could just nail down these premises for targeted cancer therapy.....or hell I'm gonna go out on a limb and call for the actual cure of diseases.

The docs went back and reviewed his previous scans and saw the deterioration and that was why we were monitoring his sugars. The questions are why now? and what is the mechanism?  We may not find the answers, but will get him into a couple more scans to see what's going on. None of this stuff affects the course of treatment- all that is standard for type 1 diabetes. Studies have shown that in cases where the pancreas has been pummelled- sometimes it results in diabetes, sometimes not.  Since it is a pretty rare occurrence- again not a lot of data on that. 

Pancreas Boy faces each and every challenge and keeps us in stitches- fortunately not literally.  Yesterday his IV was sore and creating difficulty for him. That is to say that when he bent his arm to play video games - the darn machine kept beeping. We discussed with the nurse either moving it or getting rid of it altogether and she put in the call to the doc for approval. We then transitioned the conversation to taking blood glucose levels and that Phillip could do it himself and even give himself the insulin shot.  Phillip apparently reached an intense moment in Angry Birds Rio and missed the transition. He hardly paid attention as the nurse removed his IV.  SO when she asked him if he was ready to poke himself he dropped the game and looked to me in utter panic- I don't want to do it.  Phil gives him a confused look and asks why not- he did it earlier.  Phillip shakes his head and says- no the guy in the ER did it.  At which point we all realize he thinks we want him to start a new IV on himself. Phil doesn't miss a beat and says well- if you're not ready- you're not- how about taking your glucose level? Yeah I can do that- that's easy. I even gave myself a shot already.

Monday, March 28, 2011

The Return of Pancreas Boy and the Diabetic Disaster

Of all the things I had to do this weekend- I hadn't ruled out the possibility of ending up at Tripler. To be perfectly honest- it's always a real possibility- especially when you have 6 sports games lined up and a birthday party involving pony rides. I just didn't see us going in for diabetes.

3 years ago this week, I was returning some borrowed items to my mother in law's house. Phillip and his friend were outside playing around with the neighbor's longboard skateboard. In trying to perform some death defying feat, he fell and jabbed himself in the stomach with the board.  We called them in for pizza and Phillip looked like he was going to be sick. He took one bite of pizza and refused the rest. On the way home he got all clammy and started throwing up- he look awful so I took him in. He bruised his pancreas, spent 10 days in the hospital with a feeding tube and from there on out became pancreas boy.

He has routine appointments with the endocrinologist- which is to say, I usually drag him along for Lily's appointments and she squeezes him in. I check his blood sugar sporadically, which is to say when I think of it. As of the last time, I found all my test strips expired last year. A quick internet search revealed I could trick the machine by telling it that it is 2009 so it will read the strips. Brilliant. At his last appointment the endocrinologist was optimistic because all of his tests still look good, which is to say she wasn't expecting that.

For every symptom he had, there was an explanation. He's moody- he's 11 they are all just learning to deal with hormones crazy little maniacs- right? He's tired- but pre-teens sleep like the dead don't they? He's been thirsty- but he's reffing soccer in 80 degree weather, playing flag football and growing- he needs lots of fluids.  Going to the bathroom- well he's old enough I don't have a good record of this- although he did pee behind a lot of bushes in Volcanoes National Park if I stop to think about it. But in my second job as a camel- I was pushing liquids on the little hikers like you read about.  The one symptom that got me is the weight loss.

My kids chunk out and then grow. When they were babies- it fascinated me to watch it- one day they were all pudgy roly poly and they would wake up the next morning lean and wirey. It happens now that they are older- I just had the discussion with Phillip because a month ago he was rounding out a little and I knew he was getting ready for a big growth spurt. So it didn't surprise me when he started looking skinnier- I assumed he grew. Then about a week ago he was walking around without his shirt and I noticed he looked thin. We are active every day, but he played 4 seasons of basketball and never looked this trim. I made a mental note to check his sugars next chance I got. Thin isn't in my repertoire. Call it big boneded, call it whatever you want- my kids come from sturdy stock. I come from generations of food=love and eat the stress away.  Skinny is saved for sickness and chemo- I have many times tried to retrain my thoughts. We have been eating healthy since Phil joined the Crossfit Cult, I mean lifestyle. Eating right and exercising is actually part of our lifestyle- but when Phillip started looking gaunt, I knew something wasn't right.

I wanted to take his fasting blood sugar Saturday, but he ended up wandering over to my neighbor's house for waffles while I was in the shower. I left for a birthday party with Lily and Bell and it got put off for another day. Sunday he rolls out of bed and looks haggard. Haggard enough for Phil to ask him if he's ok. I grab the glucometer, reset the date to 2009 and we give it a whirl. 238. That can't be right. I scrub another finger with alcohol, and the lancet and we try again. 278. No that's not good. "Try me." says my husband sticking out his finger. I laugh, but it's not a bad idea- he's 98. Kiera lines up, she wants a turn- weirdo. I check mine- a little over 100. I try Phillip again- 278. I call my neighbor, who is also one of my few links to sanity. She has a diabetic dog and hence a glucometer that has strips from this year. Can we run a glucose test on him over there- I tell her our problem. He and Phil go over since I still am not dressed. It's 288. My neighbor tells him to take Phillip directly to the ER- she has a diabetic sister and niece- she knows more than your average bear.  We decide that Schofield is a better(faster) option, the boys set out. She tells us we are crazy- he's gonna get a fast pass. Define "fast"?

Hours later, Phillip is formally diagnosed with diabetes and has a bunch of labs drawn. He gets to ride in the ambulance to tripler- and makes Phil take pictures of him.  Phil lets me know when they get admitted so I can bring them overnight bags. And tell Monica she was right. It's a long running battle between the two of them. He tells her she's not right, she pretty much knows she is- he tells her she's not the boss, she rescues us when we need it.  My neighbor shakes her head as she herds my non diabetic children over to her house- he didn't even pack a bag. Look- we know cancer- this is new territory for us. And while we are at it- I'm not happy he's got diabetes- but I am glad it's not a rare disease that nobody knows anything about- it's something, well, manageable. I have a feeling I will be seeing more of our endocrinologist than my husband in the next few months. yaaaaaaay.

I feel the familiar knot in my stomach as I drive to the pink palace on the hill.  Braddah IZ is singing away about somewhere over the rainbow- I look for my sign but either the storm just passed or it hasn't hit yet- hard to say. The boys are sitting outside on a bench and I notice Phillip is just drowning in the hospital gown. I should have tested him sooner. Phil tells me the ER tech said most onset diabetics come in a coma- he wanted to know how we knew to bring him in? Did you tell him Monica made us? She's not the boss of me, he says- even if she was right, this time.  He told the tech that we have monitored him after he busted his pancreas. He was thirsty, losing weight and tired . So the tech asks- why didn't you bring him in sooner? Ah I love medical professionals. I'm pretty sure Phil didn't regale him with tales of tournaments and daily life with 4 kids- I'm sure he just said we brought him in as soon as we tested him. I guess we could have waited for the coma, but that seems a little silly. They will be doing round the clock labs and monitoring all kinds of things. Once he gets the sugars managed and we get our medical degree in diabetic home management, we will be allowed to bring him home. We hope for Tuesday. Phil hopes they have insulin blow darts.

Wednesday, March 9, 2011

Kalo n Kiera

I had the chance to go to the Kalo(taro) Patch with Kiera's Class. In 4th grade, they learn all about Hawaiian History and Culture. A trip to the Taro patch enlightens the children to the importance of playing in mud. I learned quite a bit. For instance, I still do not like poi which is the famous Hawaiian glue, I mean root. Actually, Taro is the root and is very much like a potato and is great in breads, or baked with a little seasoning- but when it is ground into Poi- it looks like purple snot. After learning that 4th grade classes from all over the island swim around where it is planted, I question my need to eat it at all. I know 4th graders, they are not clean. I also learned that mother of a classmate is a poopologist. Her son informed me that she can identify animals by the way their poop smells. Does she dissect it? Sometimes, was the answer- if she's looking for something. I don't think he was joking. I wonder what Kiera tells the kids I do.....

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Tuesday, March 1, 2011

Parenting Crossroads and the Yes Man

I am not a single parent, but I have been playing one for quite awhile now.  I can say that there are benefits to both sides of the parenting fence. I will also say that a single parent can parent as effectively as a couple, because as in all things life- you are only as strong as your weakest link.  Yet it is always nice to have a partner. Playing good cop- bad cop just looks silly if there's only one actor.  I have learned some amazing things about parenting by watching my husband interact with our children.  When he is debriefing behavior, he covers the finer elements of a standard flight defrief. Since there are rarely films to evaluate- the replay is more of a constructive questionning with a fair amount of detective work. This detective reasoning leads to the reconstruction of events and well as an opportunity to guide the children into the problem solving Woulda Coulda Shouldas. Once these have been established, they once again reflect on the positive and negative aspects and compare them to other times we have seen or not seen such behaviors. Once the child has effectively reflected, the true redirection (aka parenting- lecturing- mentoring- guiding- brainwashing-etc) begins. Once the debrief is concluded he usually asks them a trivial question. They usually respond, "Yes, sir"- and he knows they understand where everyone stands. Except Bella, she always responds "Yes Man"  because the other ones used to say "Yes Ma'am" and he would then have to say "Your mom is a Ma'am. I am a Sir."  I have yet to hear him correct Bella and neither one of us can resist snickering.

His talks are always one of the highlights of my job. He doesn't talk down to the kids, nor does he lecture over their heads. He is relateable yet authoritative. I often have to leave the room in a fit of giggles because when you watch an adult debriefing a toddler on the finer points of appropriate behavior choices- it is inherently funny. The one thing you will not see him do is negotiate with them. Some call it stubborn, but I think it is an element of parenting that is often overlooked these days. If children were equipped to handle all of the choices society has to throw at them- they would not be kept under the parenting umbrella until they are 18- oh wait- maybe it's 21-or is it 23 now? Oh yeah- some policies allow you to extend coverage to your "child" who is up to 26 years of age.  It wasn't so many years ago that a 26 year old was considered an old maid and destined to live a life of solitude. Time to take off the kid gloves people.

As I said, I've been tackling some parenting hurdles solo.  I have found that yelling only works to get their attention- but doesn't accomplish much else. I'm sure my neighbors appreciate my extensive research on the subject. Ignoring doesn't work either. Telling the children to work it out- plain old ridiculous- if they could work it out on their own- really would there be a conflict- um no.  What does work?  Consistency. For the same reasons children go haywire as soon as you get on the phone, talk to a neighbor, or are out in public- those are precisely the times you need to enforce appropriate behavior. Especially if it is uncomfortable. You will save yourself lots of discomfort in the long run.  Lately- my kids like to approach me after 8 pm. I go off duty at 8. Off duty in my world means I'll deal with you- but in an adult fashion.   It occurred to me that I was completely enabling their behavior because I was tired and it was quicker to just sign their homework logs after hours than deal with the fallout. Every night I was dealing with the logs. I finally said I wouldn't do it. If it wasn't done by dinner- it wasn't signed. The result was Phillip sneaking his on the counter in the morning.  I would sign it without thinking.  And then I didn't and I refused to.  It took 2 days and he finally figured it out.  Children have to face the consequences. I didn't want him to go to school and have his planner not signed and have the teacher think I wasn't doing my job.  And then it occurred to me- my JOB is to teach him to be responsible. That's the whole point of consequences. It doesn't matter what anyone else thinks- if I am doing what needs to be done.

I don't like public humiliation. I don't like to humiliate my children in public and I sure as heck don't like being humiliated. Yet at some point, children subconsciously recognize this and use it to their advantage. Like yesterday morning. Bella chose to ride her scooter to school. Once we drop the kids at school, she decides she is done riding the scooter. The rule is- you choose it- you have to get it home. I remind her of the rules and listen to her complaining for a block. We get to the corner of death( a main intersection with only a 4 way stop and people who would rather have your blood on their car than take the time to obey the rules of the road- like stopping). I usually carry her scooter across and hold her hand so if necessary, I can slingshot her to safety and take the full impact of a hit and run. Bella refuses to hold my hand and stomps her feet. I grab her hand and threaten punishment in the form of my hand hitting her butt if she doesn't hold my hand and walk across the street, she pulls it away. At certain ages- immediate reward and punishment are needed. And then for good measure- booster shots of reinforcement need to be given as kids get older. She then does the wet noodle act and throws herself on the ground.  I now have to spank her because I threatened it. In public. So I do. I can tell you this because I already had about 25 witnesses to it- it's not a secret. She still refuses. At some point this is not working and reinforcement has the potential to become child abuse. That point is now. It is not a battle of the wills- it is me making a point and getting a child across the street safely.  I pick her up grab the scooter and dash across the street. Before I even get to the sidewalk- I hurl her scooter into a grassy patch and park her butt on a nearby step. I get down on her level- because that's what Supernanny says to do- it's less intimidating. I then wonder if I should stand back up- because she just publicly disobeyed me and threw a fit- if this doesn't call for a little intimidation- I don't know what does. And as a sidebar- I don't watch supernanny- I've seen it twice and both times it was the exact same. I only watched it those 2 times so I could feel like my children weren't Satan's spawn- and it worked. I stay at eye level and explain to her that when we get home, since she is sooooo tired of walking she will sit in time out until she is no longer tired. At that time she will clean the backyard and if she gets tired she can go back to timeout. Do you understand? Her response "Yes Man."

 The good news is I can say "I am not a MAN I am a MA'AM" without sounding utterly ridiculous. But I don't because I have to walk away so she can't see me snickering.