It was a definite non-beach-day today, so we decided to embark on an "adventure" with the Earleys and explore some of the caches in the Nickerson State Park in Brewster.
The day started off traffic-y - which shouldn't have been a surprise, I suppose, for Saturday July5th on Cape Cod. Out of character, Tom hadn't objected when I mentioned our plan - but then again, he wasn't coming.
We did make it to Brewster within an hour, and had a great time searching for (and finding) a couple of caches overlooking Cliff Pond. A great spot, and fun finds.
Stupidly, though, I let it go too long without a big meal for TJ. (Supposedly with the pump he can skip meals, but this hasn't been our experience...those "starvation" keytones come on fast.) His numbers were great - staying right around 120 all afternoon, and he did have a snack and bolus at 2:00. But by 4:30 he was complaining, and I could tell he was getting keytones. Sure enough, his BG rang in at 126, but his keytones were climbing - technically OK, but still higher than I would like - 0.4. Mikey helped him with a bolus and a snack while we sat in traffic with a capital TRAFFIC and I found myself understanding my fathers lifelong resistance to Cape Cod.
Suzanne navigated us around a bit of route 28, and we hit a Sea Food Sams. TJ was still belly-aching (quite literally, I'm sure), so I bolused a little low for his 3 mozzarella sticks and bowl of chowder, not sure of how much he would finish (not to mention totally clueless as to how many carbs are actually in 3 mozzarella sticks and a bowl of chowder).
TJ seemed better, but when we got home (in much less traffic, I might add) he started hanging his head over the pot. UGH.
6:30 PM - BG is 446(!!!) and keytones of 1.4. Injection of 2.5 and temp bolus of 125% for 30 minutes.
7:30 PM - still a wet rag. BG is 460 and keytones of 1.7. Now we're going in the wrong direction.
A call to Joslin let us know we were doing things right, though (something I never mind hearing), and the doctor on call had us bump the temp basal up to 150% for 4 hours.
8:15 - he's down to 334 and keytones of 0.4. Phew! Not out of the water yet, but in the right direction. At least we can put him to bed.
9:30 - 143. Keytones of 0.2. Ahhhhh.....
Are we out of the woods yet? Time will tell. The last time this happened we fought keytones for a couple of days, but 0.2 I'll take.
Saturday, July 5, 2008
Friday, July 4, 2008
CAMP-Y
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Today marks the end of the kids week at Camp Farley!
Although I had driven by a few times, I had never given the camp a second thought until Sally mentioned that she would be sending her kids, and that the camp employed a full time nurse. (As always, my friends are graciously looking after TJ.)
I was nervous at first, but met with the nurse last week. She was eager to do anything I asked, and I felt confident that even if his numbers were not perfect, TJ would be safe at camp. Deb (our amazing Joslin nurse educator) helped to calm my fears a little, too, by reminding me that any nurse is totally capable of managing his daily care. So...off the kids went.
And...they have loved every campy minute of it. Walking through the Camp Farley grounds is like stepping into some '80's movie about camp. There is an outdoor stage area with bleachers built into the hill called - that's right - Council Grove. At Council Grove they kids have picked up many a traditional "camp" song. Council Grove overlooks the pond where they have swimming lessons and the many cabins for the overnight campers. The kids have produced yards and yards of gimp projects. This camp is so stereotypical, it is hard to believe its real.
Five days of hanging without the kids hasn't been too shabby, either. Taking a break from constant parenting, and from constant diabetes management, to just work in the yard, go out to breakfast, actually tan my back at the beach...I'm already planning for next year, when the kids will undoubtedly be enrolled in another session of camp.
Thursday, June 5, 2008
Don't you know ANYTHING?!?
At baseball last Saturday, Thomas' pump escaped from his waistband while he was running home. Not to be deterred in his (automatic - this is junior baseball, after all) score of a run, he grabbed the pump by the tubing and continued on.
As he returned to the bench, Tom witnessed the following conversation (and yes, this whole post is hearsay, but still, a mom's gotta brag every now and then):
Teammate: "What is that?"
Thomas: "My pump."
Teammate: "Well, why do you have it?"
Thomas: "Because I have diabetes."
Teammate: "Well why do you have that?"
Thomas (insert pithy tone and eye-roll here): "Because I have diabetes...my pancreas doesn't work."
Well obviously!
As he returned to the bench, Tom witnessed the following conversation (and yes, this whole post is hearsay, but still, a mom's gotta brag every now and then):
Teammate: "What is that?"
Thomas: "My pump."
Teammate: "Well, why do you have it?"
Thomas: "Because I have diabetes."
Teammate: "Well why do you have that?"
Thomas (insert pithy tone and eye-roll here): "Because I have diabetes...my pancreas doesn't work."
Well obviously!
Pumped!
Well, despite a two month hiatus from blogging, Thomas is pumping with the best of them. I have actually been holding off on this blog post until I could include a photo or two, but life has been a whirlwind, and I don't have any photos. I do have a day, off, however, so I'm updating the blog. Words only will have to do.
Thomas was "officially" hooked up over April vacation, and things have been running very smoothly since then. It's amazing how quickly the new "normal" replaced the old "new normal" of MDI (shots) therapy.
Thomas is pretty quiet about the pump, but when pressed he has all good things to say. Sure, most of them are verbatim things I told him would be good about pumping, but still, I think he likes it. It certainly has made life easier on our constantly on-the-go family. His numbers have also been much better.
Thomas has also been able to take even more responsibility for his care, which is nice for everyone. He is (as always) great about testing, and most likely could use the pump totally on his own if we would let him. As it is we have to slow him down to keep up with him. He was able to give a very detailed description of how the pump works it's magic to both Gram and Nanny, and successfully completed an overnight visit at Mimi and Papa's. Overall, the pump rocks!
The beach might be interesting, but all else is fantastic. The pump definitely minimizes the (inevitable) disruptions that diabetes brings with it.
Thomas was "officially" hooked up over April vacation, and things have been running very smoothly since then. It's amazing how quickly the new "normal" replaced the old "new normal" of MDI (shots) therapy.
Thomas is pretty quiet about the pump, but when pressed he has all good things to say. Sure, most of them are verbatim things I told him would be good about pumping, but still, I think he likes it. It certainly has made life easier on our constantly on-the-go family. His numbers have also been much better.
Thomas has also been able to take even more responsibility for his care, which is nice for everyone. He is (as always) great about testing, and most likely could use the pump totally on his own if we would let him. As it is we have to slow him down to keep up with him. He was able to give a very detailed description of how the pump works it's magic to both Gram and Nanny, and successfully completed an overnight visit at Mimi and Papa's. Overall, the pump rocks!
The beach might be interesting, but all else is fantastic. The pump definitely minimizes the (inevitable) disruptions that diabetes brings with it.
Friday, April 4, 2008
Seeing the Future
When Thomas was admitted to Children's Hospital almost a year ago, the constant message from the doctors, nurses, social workers, and child life staff was "you can do it." A large team of (very-well paid) cheerleaders, the CH crew made it their goal to drive home the message that life with diabetes was manageable, even swell.
Part of this, I'm sure, is survival on their part. There is a lot that parents (and children) need to absorb in a short time. In order to confer the most basic and important information, and be sure it sticks, the staff needs to focus on it and only it. The checklist is out during every meeting, and the staff is slowly but surely checking off all the requisite skills: drawing up insulin - check; treating a low - check; counting carbs - check; planning a meal - check; and the list goes on an on. There is just not time enough in the three or four days to dwell on anything but the necessary, and in order to do that, they need to keep parents in an up-beat "you can do it" frame of mind.
But even with all the cheerleading, the concerns creep in. At first, my concerns fell into one of two categories - self-centered or Thomas centered. Will we be able to eat out? Will we be able to leave Thomas with a sitter? Will he be able to play at his friend's houses? Will I have to quit my job. The worrying was endless, but it was all about our lives at the time.
Now, though, almost one year later, my worries have grown to those topics that were pointedly avoided at Children's: the life-long complications that diabetes carries with it. Although no doctor has laid the "risks" of type 1 out for us, it has become clear that there is not a part of TJ's body that is not open to the devastation that D can bring with it. Dentist appointments and check-ups - previously a nagging but minor concern - are now at the front of my mind. Diabetes advertisements that were background noise before are now red flags. The ubiquitous "ED" ads that once made me blush now remind me that if, in fact, I don't keep those numbers under control the consequences will resonate in every part of TJ's adult life (even the parts I would otherwise choose not to think about.) "Will he be able to go over a friend's house" has been replaced by "Will he see his grandchildren?"
In reality, none of us can see the future for our children. There are many tragic endings all parents avoid thinking about. Will diabetes ultimately get the better of Thomas, or will there be a cure in 15 years. No one knows. Each high or low number on the meter (heck, each test on the meter) stands as a reminder that we might not be doing enough to keep these complications at bay. But, today, almost one year in, Thomas is a healthy, happy boy who happens to have diabetes. And that is as far into the future as I can see.
Part of this, I'm sure, is survival on their part. There is a lot that parents (and children) need to absorb in a short time. In order to confer the most basic and important information, and be sure it sticks, the staff needs to focus on it and only it. The checklist is out during every meeting, and the staff is slowly but surely checking off all the requisite skills: drawing up insulin - check; treating a low - check; counting carbs - check; planning a meal - check; and the list goes on an on. There is just not time enough in the three or four days to dwell on anything but the necessary, and in order to do that, they need to keep parents in an up-beat "you can do it" frame of mind.
But even with all the cheerleading, the concerns creep in. At first, my concerns fell into one of two categories - self-centered or Thomas centered. Will we be able to eat out? Will we be able to leave Thomas with a sitter? Will he be able to play at his friend's houses? Will I have to quit my job. The worrying was endless, but it was all about our lives at the time.
Now, though, almost one year later, my worries have grown to those topics that were pointedly avoided at Children's: the life-long complications that diabetes carries with it. Although no doctor has laid the "risks" of type 1 out for us, it has become clear that there is not a part of TJ's body that is not open to the devastation that D can bring with it. Dentist appointments and check-ups - previously a nagging but minor concern - are now at the front of my mind. Diabetes advertisements that were background noise before are now red flags. The ubiquitous "ED" ads that once made me blush now remind me that if, in fact, I don't keep those numbers under control the consequences will resonate in every part of TJ's adult life (even the parts I would otherwise choose not to think about.) "Will he be able to go over a friend's house" has been replaced by "Will he see his grandchildren?"
In reality, none of us can see the future for our children. There are many tragic endings all parents avoid thinking about. Will diabetes ultimately get the better of Thomas, or will there be a cure in 15 years. No one knows. Each high or low number on the meter (heck, each test on the meter) stands as a reminder that we might not be doing enough to keep these complications at bay. But, today, almost one year in, Thomas is a healthy, happy boy who happens to have diabetes. And that is as far into the future as I can see.
Saturday, March 22, 2008
Going on a Bear hunt...
Last weekend the whole family trekked into the city to attend the Diabetes EXPO at the seaport world trade center. Although none of us were entirely sure what to expect, I had heard rumors of 'freebies,' and really wanted to get my hands on some! On top of the EXPO (which I worried might be rather boring for the kids) there was the Joslin Teddy Bear Clinic, one of the most well advertised events on the annual Joslin kid's calendar.
So, early Saturday morning we all headed to the city, bears in tow, to check out the scene. We were greeted at the entrance to the exhibit hall by a teddy bear who immediately drew the kids into, well, bear hugs and a TV camera that immediately made me nervous. The EXPO greeters were thrilled, cheering for us..."you might be on channel 5."
Next stop, Teddy Bear Clinic, where the kids took their respective bears (Tyler and Blacky) through the different parts of the Joslin check-up (blood draw, blood pressure, etc.) and also participated in some more routine diabetes care - making a BG log, testing blood sugar, planning a meal. Both Gwen and Thomas were enthralled, carefully completing the task at each station and doting on their patients.
We did score 2 free meters(!), found a new juice that has no carbs (it does have splenda, or course,) and even got to sample a little sorbet. Overall a very successful trip.
And the take-home message has lasted all week. Although I thought the "pretending" might be a little beneath the kids, both have been enthusiastically checking their bears' blood sugar. They drew and gave their own (saline) shots for the bears before bedtime one night, and Thomas is keeping a better log for Tyler than we keep for him. And the best part? The kids actually WERE on the channel 5 news that night.
Friday, March 14, 2008
D - upDated
So much has been going on...which seems to leave very little time for blogging. But, much of it has been good, exciting, and fun - a needed change. So, in no particular order, a few D updates:
We had our two pump visits in January and February (complete with math homework). The first was less than successful, ending in frustration followed by an A1C result of 10.1. (Yes, that's right, over TEN!). But, possibly spurred on by the realization that we really were not doing our best "managing" TJ's D, we have put significant effort into getting better control of the numbers, with much success. I think both Tom and I had become resigned to crappy numbers, but with the help of Dr. W and Deb, we have seen amazing improvements!
Our second pump appointment was a breeze, and in only a month his A1C is down to 8.8 (still high, but not as shameful!). So...we are pleased, to say the least. Plus, it is clear how much better Thomas feels when he is in range.
Which leads me to...Thomas' pump came!! His BLUE cozmo is waiting in the box for mid April, when we will do a saline start and April vacation when we will go for the real deal! Never one to disappoint on the humor side, Thomas' one comment when I showed him the pump was "good,
buuuuuuut, can you send it back and get a black one, I changed my mind on the color." I'm sure everyone has realized both Tom and I have taken to spoiling Thomas in an attempt to soften the blow of having D, but even I was able to find my backbone long enough to say NOPE to that one!
The pump couldn't be coming at a better time. Thomas - who has thus far been amazing and cooperative at every turn - is finally starting to tire of not being able to eat what he wants, when he wants. Not to mention he has not made any significant growth strides since diagnosis. He's not too small by any means, but he is definitely in a lower percentile than he was pre-D. The nutritionist was pleased with our carb counting worksheets, but made noted on each days logs that his caloric intake was less than a boy his age needed. So, I'm glad to have the opportunity to feed him a little more freely, and with increased calories! We are also very excited about the many pump features, including the attached meter and the integrated computer program. I'm sure there will be many bumps along the pump-paved road, but for now we are looking forward to hooking TJ up with unbridled optimism.
Finally...tomorrow is the Diabetes Expo. We are all excited to check out the scene, score some D-swag, and participate in the Joslin "Teddy Bear Clinic" (because what bear doesn't need a little diabetes care!?!). We'll also be on the hunt for a black case for the (repeatedly requested, apparently undesired) BLUE pump. Hopefully it will be as fun as the promos promise!
We had our two pump visits in January and February (complete with math homework). The first was less than successful, ending in frustration followed by an A1C result of 10.1. (Yes, that's right, over TEN!). But, possibly spurred on by the realization that we really were not doing our best "managing" TJ's D, we have put significant effort into getting better control of the numbers, with much success. I think both Tom and I had become resigned to crappy numbers, but with the help of Dr. W and Deb, we have seen amazing improvements!
Our second pump appointment was a breeze, and in only a month his A1C is down to 8.8 (still high, but not as shameful!). So...we are pleased, to say the least. Plus, it is clear how much better Thomas feels when he is in range.
Which leads me to...Thomas' pump came!! His BLUE cozmo is waiting in the box for mid April, when we will do a saline start and April vacation when we will go for the real deal! Never one to disappoint on the humor side, Thomas' one comment when I showed him the pump was "good,
buuuuuuut, can you send it back and get a black one, I changed my mind on the color." I'm sure everyone has realized both Tom and I have taken to spoiling Thomas in an attempt to soften the blow of having D, but even I was able to find my backbone long enough to say NOPE to that one!The pump couldn't be coming at a better time. Thomas - who has thus far been amazing and cooperative at every turn - is finally starting to tire of not being able to eat what he wants, when he wants. Not to mention he has not made any significant growth strides since diagnosis. He's not too small by any means, but he is definitely in a lower percentile than he was pre-D. The nutritionist was pleased with our carb counting worksheets, but made noted on each days logs that his caloric intake was less than a boy his age needed. So, I'm glad to have the opportunity to feed him a little more freely, and with increased calories! We are also very excited about the many pump features, including the attached meter and the integrated computer program. I'm sure there will be many bumps along the pump-paved road, but for now we are looking forward to hooking TJ up with unbridled optimism.
Finally...tomorrow is the Diabetes Expo. We are all excited to check out the scene, score some D-swag, and participate in the Joslin "Teddy Bear Clinic" (because what bear doesn't need a little diabetes care!?!). We'll also be on the hunt for a black case for the (repeatedly requested, apparently undesired) BLUE pump. Hopefully it will be as fun as the promos promise!
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