I apologize. I just couldn't take it anymore and needed to circle the wagons for bit. Dealing with my son's diabetes was a battle from the beginning. I thought the pod would solve all of our problems - silly me. Not that it didn't help - it did. But it brought a whole new set of issues. I guess I wasn't up mentally for that battle and daily life.
So I found myself needing to coast for awhile. The last few months I have spent my energy helping Evin. The rest of my life took a back seat - waaay back. I knew I had to do something when I no longer took solace in all the sites I visited to learn more about this horrible disease. From past tragedies in my life I realized that this was the shock wearing off and reality setting in. I do want to thank everyone who continued to support me in my silence. You lifted me up more than you will ever know.
So I am slowly getting back to the world. The turning of the calendar can do wonders on the mind. Although I had sworn off doing the JDRF's Walk to Cure Diabetes this year, I somehow found myself working on getting a team organized. I invite you to visit my son's website and to watch our video.
Tuesday, January 15, 2008
Thursday, August 2, 2007
The Day After
I must admit that the last 5 months have not been easy. I seem to swing between feeling sorry for myself and my son to being down right pissed off. The last few weeks have been especially challenging – and I do want to share that with everyone – but all of that just doesn’t seem to matter much today. You see, I live in the Twin Cities of Minnesota. I have driven the bridge that collapsed many, many, many times. 35W is literal the main artery of Minneapolis. The Mississippi River twists and turns many times around the cities. You begin to take for granted the fierce river below, especially when you travel over a structure that feels like solid highway and not a bridge. And that is what that bridge felt like to me. It still seems so unreal.
My thoughts are with those families who are waiting to hear the tragic news and with those who will have to deliver it.
Friday, July 13, 2007
Third times a charm
Note to self, do not attempt life changing things on Friday the 13th.
We are podding but it has not been without its glitches. We had to put on 3 separate pods, but it was our fault, not the Omnipod system. After much discussion with our endo and Evin, we decided to place the pod on the right side of his belly. I wanted to use Emla cream to numb the infusion site. I had gone back and forth on this, but wanted it to be as painless as possible for him. I did not anticipate the problems he would have putting on the damn cream. You have to apply the Emla fairly thick for 60 – 90 minutes before use. You then cover it with a band aid like thing that will not soak up the cream but will keep it from leaking out. Sounds good, right? But you see, my kid hates band aids – I mean really, really hates them. I have no idea why. Other kids will gladly put a whole box on their bodies for no reason and mine will refuse one even if he is bleeding profusely. The first battle already...did I make the right choice? Once on, you are not supposed to touch the band aid. Try telling a 4 year-old not to touch something... not only will he continuously touch it, but his brother, who overhears the warning, will touch it as well. But we were on our way.
Our Omnipod training was done by a woman from Insulet Corporation. She's fantastic to work with and, being a RN and CDE, knows her stuff. Once we get through all the setup, it's time to activate the pod. Evin is bit strung out by now because of the Emla battle. He is also scared. He has been lied to by medical people in the past (you know, those kind hearted people who are about to do something and say something like, “it’s ok honey, it won’t hurt” and then it does) and he is now very skittish. We distract him with a new Thomas the Train movie. The band aid is removed, Emla wiped cleaned, pod placed, activated and then…“pop”. He doesn’t feel a thing! He’s excited, I’m excited, and then the pod starts falling off. It seems the Emla was not cleaned up enough. This actually shocks me. The Omnipod has some impressive tape. After our trial run with a pod, I thought we were going to have to dynamite the thing off Evin. So we get out the alcohol swabs and clean the kid up to try again. Evin is less than happy and is scared again. It’s activated and then…“pop”. Everyone starts dancing around like fools because once again he doesn't feel a thing. Ten minutes later the thing is falling off.
Have you figured out where we are going with this? We move the pod to the other side of his belly. So the dilemma is…do we tell him it will hurt or just go for it. We just go for it. We put the pod on, activate it and then…”pop” and a huge scream. He looks at me with such shock on his face. I was certain I would hear, "Mama, mama, please don't hurt me". Less than a minute later he's fine, but my heart aches. I'm also pissed off at this shitty disease. I am tired of hurting my little boy - bone weary tired.
We had promised a bribe – I mean reward – once the pod was on, so we finish up and pile him and Donovan in Homer the Minivan. It's gone pretty well since then, but I’m sure I won’t get much sleep tonight. My first impression is that I like shot free life and the Omnipod is pretty cool. Our settings are a bit high, but I know that’s what all endos do at first, just to be cautious. Better high than low, right?
There is more to tell but its time to test the boy again.
We are podding but it has not been without its glitches. We had to put on 3 separate pods, but it was our fault, not the Omnipod system. After much discussion with our endo and Evin, we decided to place the pod on the right side of his belly. I wanted to use Emla cream to numb the infusion site. I had gone back and forth on this, but wanted it to be as painless as possible for him. I did not anticipate the problems he would have putting on the damn cream. You have to apply the Emla fairly thick for 60 – 90 minutes before use. You then cover it with a band aid like thing that will not soak up the cream but will keep it from leaking out. Sounds good, right? But you see, my kid hates band aids – I mean really, really hates them. I have no idea why. Other kids will gladly put a whole box on their bodies for no reason and mine will refuse one even if he is bleeding profusely. The first battle already...did I make the right choice? Once on, you are not supposed to touch the band aid. Try telling a 4 year-old not to touch something... not only will he continuously touch it, but his brother, who overhears the warning, will touch it as well. But we were on our way.
Our Omnipod training was done by a woman from Insulet Corporation. She's fantastic to work with and, being a RN and CDE, knows her stuff. Once we get through all the setup, it's time to activate the pod. Evin is bit strung out by now because of the Emla battle. He is also scared. He has been lied to by medical people in the past (you know, those kind hearted people who are about to do something and say something like, “it’s ok honey, it won’t hurt” and then it does) and he is now very skittish. We distract him with a new Thomas the Train movie. The band aid is removed, Emla wiped cleaned, pod placed, activated and then…“pop”. He doesn’t feel a thing! He’s excited, I’m excited, and then the pod starts falling off. It seems the Emla was not cleaned up enough. This actually shocks me. The Omnipod has some impressive tape. After our trial run with a pod, I thought we were going to have to dynamite the thing off Evin. So we get out the alcohol swabs and clean the kid up to try again. Evin is less than happy and is scared again. It’s activated and then…“pop”. Everyone starts dancing around like fools because once again he doesn't feel a thing. Ten minutes later the thing is falling off.
Have you figured out where we are going with this? We move the pod to the other side of his belly. So the dilemma is…do we tell him it will hurt or just go for it. We just go for it. We put the pod on, activate it and then…”pop” and a huge scream. He looks at me with such shock on his face. I was certain I would hear, "Mama, mama, please don't hurt me". Less than a minute later he's fine, but my heart aches. I'm also pissed off at this shitty disease. I am tired of hurting my little boy - bone weary tired.
We had promised a bribe – I mean reward – once the pod was on, so we finish up and pile him and Donovan in Homer the Minivan. It's gone pretty well since then, but I’m sure I won’t get much sleep tonight. My first impression is that I like shot free life and the Omnipod is pretty cool. Our settings are a bit high, but I know that’s what all endos do at first, just to be cautious. Better high than low, right?
There is more to tell but its time to test the boy again.
Thursday, July 12, 2007
I am the pancreas, goo goo g'joob
Someone asked me today what I did for a living. I told her I was a pancreas. That’s what consumes me, 24 hours a day, 7 days a week. And I do a damn poor job of it.
I have really come to respect that little organ. It doesn’t matter how much we eat, exercise or stress over things, the pancreas knows what to do to keep levels in range. Working as Evin’s pancreas, my goal is to keep him between 80 and 200. We have been told that if we can hit that range 50% of the time, we are doing great. But it feels like we are failing him. We seem to be fighting lows all the time, which can then lead to these huge highs. My sweet little boy turns into a whining little monster when he goes high. And who can blame him. His head hurts, his tummy hurts, even his joints can hurt. But he turns his pain on his brother, and that just makes my failures twice as bad.
I know that these swings are “normal”, especially since he is still honeymooning. But knowing that doesn't help. It doesn’t even help to know others are going through the same thing (ok, that helps a little). But starting tomorrow we will have help on this journey of ours. Evin will be starting the Omnipod Insulin Management System. It wasn’t a hard decision to go on a pump (or, in our case, a pod). Trying to get just the right amount of insulin is almost impossible using a syringe or an insulin pen. We can now give insulin in .05 unit increments. No more shots, but we will have to replace the pod every 3 days – and that is not pleasant . Evin’s A1c was 7.1% when he was diagnosed, but up to 8.4% three months later. The pod should help with that. We have a lot of expectation for this little device – I hope we aren’t too disappointed.
But as sure as I am that the pod is the way to go, I still worry about this step. Right now, diabetes takes up about 10 minutes of Evin’s day (outside of the effects of highs and lows). He gets his hated, painful Lantus shot in the morning (his butt shot), and 4 – 6 shots of Novolog throughout the day. We also test his blood glucose 10 – 12 times a day. Lots of pokes, but it takes up just a small part of his day. Diabetes will now be “on” him 24 hours a day. I still have nightmares of those first few weeks and I do think there will be some tough moments going forward. But Evin is incredibly brave and never complains about having diabetes. Sometimes I worry that he doesn’t want to talk about having this disease, but he does want to know the ins and outs of the management. He always asks how many carbs he is eating and is beginning to remember some amounts. He loves to “dial-up” his insulin dosage on his Novolog pen and he always wants to know what his numbers are after we check his blood sugar. I think he will love his little PDM and I just hope that he will adjust quickly to the pod. We go live at 3:00 pm tomorrow and Donovan has assured Evin that he will be there for him!
The Omnipod has only been available in the Midwest since January and Evin will be the first child to use it at our endocrinologist’s office. I hope to video our first live insertion on Friday and post it here.
Wish us luck!
I have really come to respect that little organ. It doesn’t matter how much we eat, exercise or stress over things, the pancreas knows what to do to keep levels in range. Working as Evin’s pancreas, my goal is to keep him between 80 and 200. We have been told that if we can hit that range 50% of the time, we are doing great. But it feels like we are failing him. We seem to be fighting lows all the time, which can then lead to these huge highs. My sweet little boy turns into a whining little monster when he goes high. And who can blame him. His head hurts, his tummy hurts, even his joints can hurt. But he turns his pain on his brother, and that just makes my failures twice as bad.
I know that these swings are “normal”, especially since he is still honeymooning. But knowing that doesn't help. It doesn’t even help to know others are going through the same thing (ok, that helps a little). But starting tomorrow we will have help on this journey of ours. Evin will be starting the Omnipod Insulin Management System. It wasn’t a hard decision to go on a pump (or, in our case, a pod). Trying to get just the right amount of insulin is almost impossible using a syringe or an insulin pen. We can now give insulin in .05 unit increments. No more shots, but we will have to replace the pod every 3 days – and that is not pleasant . Evin’s A1c was 7.1% when he was diagnosed, but up to 8.4% three months later. The pod should help with that. We have a lot of expectation for this little device – I hope we aren’t too disappointed.
But as sure as I am that the pod is the way to go, I still worry about this step. Right now, diabetes takes up about 10 minutes of Evin’s day (outside of the effects of highs and lows). He gets his hated, painful Lantus shot in the morning (his butt shot), and 4 – 6 shots of Novolog throughout the day. We also test his blood glucose 10 – 12 times a day. Lots of pokes, but it takes up just a small part of his day. Diabetes will now be “on” him 24 hours a day. I still have nightmares of those first few weeks and I do think there will be some tough moments going forward. But Evin is incredibly brave and never complains about having diabetes. Sometimes I worry that he doesn’t want to talk about having this disease, but he does want to know the ins and outs of the management. He always asks how many carbs he is eating and is beginning to remember some amounts. He loves to “dial-up” his insulin dosage on his Novolog pen and he always wants to know what his numbers are after we check his blood sugar. I think he will love his little PDM and I just hope that he will adjust quickly to the pod. We go live at 3:00 pm tomorrow and Donovan has assured Evin that he will be there for him!
The Omnipod has only been available in the Midwest since January and Evin will be the first child to use it at our endocrinologist’s office. I hope to video our first live insertion on Friday and post it here.
Wish us luck!
Wednesday, July 11, 2007
Diabetes 101
Thanks to all who have taken the time to visit my little blog. Some of you have asked for a little more information on diabetes, so I thought I would attempt to do that. Please remember that I am not an endocrinologist and I have never even seen one on TV! I will try not to bore you to tears.
The food we eat is made up of fats, proteins, and carbohydrates. For the sake of this discussion, we will only be talking about the carbohydrates. Our bodies turn those carbs into glucose which then travel in the blood stream waiting to be picked up by our cells. Our cells need that glucose so we can run, jump and beat up our brother. But, the cells can not pick up that glucose without insulin. And that’s where the pancreas comes in. Our pancreas produces just enough insulin to keep our blood glucose level stable throughout the day. The pancreas has to take into account not only the carbs we eat, but also exercise, stress and other things when it’s deciding how much insulin to produce. In a non-diabetic person, our blood glucose shouldn’t exceed 140.
In a type 2 diabetic, the pancreas is working fine at first, but our cells become resistant to the insulin. Unfortunately, the industrialize nations on this planet eat way to many carbohydrates – especially the processed kind. After being bombarded with carbs year after year, our cells finally say enough is enough and stop taking up all the glucose. This leads to high blood sugar levels. This form of the disease can take a long time to make itself known. If caught in time, it can be improved and even be reversed with changes to the diet.
Type 1 diabetes is an autoimmune disease. This means that the body turns on itself and starts attacking the beta cells in the pancreas that produce insulin (and no, it has nothing to do with the food we eat). Although there seems to be both a genetic and an environmental aspect to this disease, it is not completely understood why some people will develop type 1 diabetes. The onset of type 1 makes itself known rather quickly. With no insulin in the body the cells can not get access to the glucose and lethargy sets in. Blood sugar levels will go very high which can lead to diabetic ketoacidosis. The body will try to get rid of all that glucose in the blood by forcing it out with the urine. This leads to excess thirst. There is some insulin in our fat, so the cells will access it just to survive, which leads to a big weight loss. Some people will have a blood glucose level over 1000 when they are first diagnosed with type 1 diabetes. At this time, there is no cure and the only way to survive is to inject insulin.
Regardless of the type, diabetes can be a deadly disease. Left untreated diabetic ketoacidosis can lead to coma or even death. Over time, prolonged hyperglycemia (high blood sugars) can wreak havoc on the body. All that glucose affects the circulatory systems, especially the eyes and the kidneys. Once we start injecting insulin, we have to be concerned about hypoglycemia (low blood sugars) which can also lead to coma or even death.
If you are still with me, that is a very broad overview of diabetes. I'm sure over time I will talk more about what this horrible disease can do to people and how we need to find a cure - now.
Friday, July 6, 2007
July 6th, 2001
Today should be Eoin’s sixth birthday.
"Sorrow is no longer the islands but the sea" – Nicholas Wolterstorff
"Sorrow is no longer the islands but the sea" – Nicholas Wolterstorff
Tuesday, July 3, 2007
Hitting Home
Ever since my son Eoin died, I have read the obituaries. I’m not sure what I am looking for in the tales of life and death, but I still look. It is always hard reading about the death of babies and children, but I read something today that caught me completely off guard.
Hill, Tyler R. age 16, passed away suddenly on June 29, 2007 from complications of diabetes. Rugby, hunting, skiing, scuba diving, hockey and more were his passions. His love of the lakes, forests, mountains and oceans lead him to be a steward of the earth and a citizen of the world. A friend, competitor, cousin, brother, grandson and son were taken from us a lifetime too soon…
Complications of diabetes?! I have thought about this all day and my heart aches for his mother and the rest of his family.
In case you are interested, his family has requested that memorials go to the Max McGee National Research Center for Juvenile Diabetes. Although I have never heard of this organization, I gave – for Tyler and Evin and everyone touched by this horrible disease.
Godspeed, young Tyler. I wish your family peace.
Hill, Tyler R. age 16, passed away suddenly on June 29, 2007 from complications of diabetes. Rugby, hunting, skiing, scuba diving, hockey and more were his passions. His love of the lakes, forests, mountains and oceans lead him to be a steward of the earth and a citizen of the world. A friend, competitor, cousin, brother, grandson and son were taken from us a lifetime too soon…
Complications of diabetes?! I have thought about this all day and my heart aches for his mother and the rest of his family.
In case you are interested, his family has requested that memorials go to the Max McGee National Research Center for Juvenile Diabetes. Although I have never heard of this organization, I gave – for Tyler and Evin and everyone touched by this horrible disease.
Godspeed, young Tyler. I wish your family peace.
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