This week I was harshly reminded of how terrible Type 1 diabetes is. I was reminded by a little girl named Eilish. Eilish passed away in the middle of the night because of a disease that she and my son shared.
Most days I'm able to push diabetes to the back of my mind. I count carbs. I help with boluses. I adjust basals. I monitor sugars at half time of soccer games. I ponder what to do about that 2 AM sugar that is a little on the high side. But, somehow, I keep the "bad things" at bay. All the "what ifs".
The first thing I do when I wake up every morning is tiptoe into Riley's room and listen for his breathing or watch for his chest to rise. I've been doing it for 5 years now. It's become somewhat of a habit. I think I had convinced myself that he'll be OK. He's been OK for 5 years now.
But, the story of this little girl, this girl with so much life left to live, has brought all of the "what ifs" flooding back in. I haven't slept well in 5 years. I get up at least a couple of times a night to check Riley's sugars. But, now, my sleep is tempered with something else. My brain seems to be on alert all the time. I can't quite rest. I've had several fitful nightmares where Riley was in a coffin.
It's horrible. I hate this disease. I hate it with a passion. I hate that it can rear it's ugly head and anytime steal away what little bit of peace I had made with it. I hate what it makes Riley have to do on a daily basis. I hate the little black dots it leaves on his fingertips. I hate how it alters his moods. I hate what it did to Eilish, what her parents must be going through. And, I hate that I cannot be sure that it will not happen to Riley.
Yes, it's a harsh reminder that no matter how much you convince yourself that everything will be fine, it's just smoke and mirrors. It's just a way to get yourself through each day. A way to cope with a disease that you are helpless to make go away.
My heart is broken right now. I haven't felt this way about diabetes in a while. I had stupidly convinced myself that everything will be fine. And, this story reminds me that it may not. This story reminds me how fragile life is and how we really don't have the control that we think we do.
The only thing I can do is hope and pray for a cure . All of my fundraising efforts go toward Dr. Faustman's research.
I will do what I can. I will pray for this family. I will pray for a cure. And, I will hope and pray that Type 1 diabetes spares my son from the same fate.
Saturday, October 23, 2010
Wednesday, October 06, 2010
A Five Year Battle
Five years ago today my son was diagnosed with Type 1 diabetes. I don’t have the energy, either physical or emotional to write an actual blog post about it.
Right now I am exhausted. I was up late doing a site change and then up every two hours all night checking sugars. So, yeah, I’m tired. Not just because of last night, but because of the last five years. I’m just tired of it all.
But, I felt like I had to come here and acknowledge this day in some way. I know this blog post isn’t the most uplifting, and I’m sorry about that. I can barely keep my eyes open, let alone put together a coherent post summing up the last 5 years of life.
All I can say is that we’re still here. We’re still fighting. Five years later we’re still determined to fight a battle that seems will never end. Actually, Riley is fighting the battle, I’m just the one on the sidelines trying to make the strategic maneuvers that will hopefully keep him safe for one more day. Today I feel like waving the white flag, but I know I can’t. A little boy who means everything in the world to me looks to me to lead him in this battle that he didn’t chose. The enemy just snuck up on him and we’ve been on the defensive ever since.
He’s been fighting this battle for 1,825 days now. There have been no cease fires called, not for birthdays, holidays, or even the middle of the night.
He needs a cure. It’s as simple as that. He needs a cure.
Right now I am exhausted. I was up late doing a site change and then up every two hours all night checking sugars. So, yeah, I’m tired. Not just because of last night, but because of the last five years. I’m just tired of it all.
But, I felt like I had to come here and acknowledge this day in some way. I know this blog post isn’t the most uplifting, and I’m sorry about that. I can barely keep my eyes open, let alone put together a coherent post summing up the last 5 years of life.
All I can say is that we’re still here. We’re still fighting. Five years later we’re still determined to fight a battle that seems will never end. Actually, Riley is fighting the battle, I’m just the one on the sidelines trying to make the strategic maneuvers that will hopefully keep him safe for one more day. Today I feel like waving the white flag, but I know I can’t. A little boy who means everything in the world to me looks to me to lead him in this battle that he didn’t chose. The enemy just snuck up on him and we’ve been on the defensive ever since.
He’s been fighting this battle for 1,825 days now. There have been no cease fires called, not for birthdays, holidays, or even the middle of the night.
He needs a cure. It’s as simple as that. He needs a cure.
Thursday, June 17, 2010
Another Quicky Update
It seems I always promise a real post, yet always do little bullets. One day, I'll write a real, heart-felt post about diabetes. But, not today.
*** I'll start with diabetes things: ummmmmmm, not much to report. His last A1C was 7.3. I'm happy with that. But, if things continue like they've been lately it should be even lower next time. But, we all know that he could start running high 24/7 and that "great" A1C will be out the window. For the most part diabetes has been behaving itself as much as it can. Riley was playing soccer and baseball at the same time and was on a temp basal quite a bit because of it, but his sugars did well. Right now he's just playing baseball.
*** Speaking of baseball... It was supposed to end this week. But, he made Allstars. While I'm proud of him for making it, I'm not happy that he has practice every. single. day (other than Wednesdays and Sundays). I was looking forward to relaxing on my one month off (July), but it appears that will not be happening. He is playing in a tournament next weekend. Then the Allstar tournament is July 5-11. If they do well it may last longer than that. Still, Riley is excited about it. He didn't think he was going to make it and was a little upset. The smile on his face when they called out his name was priceless.
*** My last day of work for the summer is June 30th and it can't come quick enough. I'm off today and loving it. Even though I'll be busy the whole month of July I'm looking forward to not having to go into work every day.
*** We are planning a trip to New York City in July. We were planning on leaving on July 12th, but because of Allstars I'm looking at going the last week in July instead. I am very excited. None of us have ever been to New York. It's going to be a bit expensive, but it will be worth it. I figured since Holden is getting married next year, this will be our last chance to have a real family vacation with just the four of us. Holden has always wanted to visit New York, so that's what we are doing. If any of you have any tips or suggestions let me know. We are driving up and planning to spend 3 or 4 nights in Manhattan. I plan to use the subway for transportation once we get there. I have a lot of planning to do between now and then. I want to kind of know what we're going to do every day, so we're not just wandering all over the city. Again, any advice on what to do while we're there and where to eat would be greatly appreciated.
*** In addition to going to New York we will be going to Myrtle Beach in July also. We are going on a church mission trip. We've gone several years, but were unable to go last year because my mom was so sick. We've always spent 3 nights before and this year we will be spending 5. I'm looking forward to it. We do that as a family too. And, my future daughter-in-law is going too. We have fun helping others and have some down time in the pool too. And, one day we visit a water park. So, it's also kind of a little vacation.
*** Not enough things to do in July? How about we throw in swimming lessons for Riley? That's right, the one week we don't have vacation, a mission trip, or baseball, Riley will be taking swimming lessons. I wasn't going to sign him up because it was being done the week we were going to New York. Since that has changed I figured I'd sign him up. I'm not doing it because I'm a glutton for punishment and want to spend my entire time off shuttling him from here to there. I'm doing it because we live around water and he loves getting in it. It's important to me that he knows how to swim. Holden took swimming lessons pretty much every year for several years when he was younger. He's not a great swimmer, but he knows enough to keep from drowning. Riley took lessons last year, but still has a lot to learn.
*** My mom is STILL sick. June 20th will be exactly a year since her first visit to the ER. And, to be honest, we're not really any closer to knowing what's wrong with her than we were then. We have been around and around in circles. She's seen every doctor that has been suggested to her and some who haven't. And, they always send her on to someone else, because they can't figure out what going on with her. She has an appointment with a GI doctor next week as well as a urologist. Even after all this time, I always hope that we'll walk in and they'll say: "I know what's wrong with you." But, it hasn't happened yet. I have to believe that it will one day soon. At least she's not bad all the time. She never has a great day. But, she has good days and bad days. I never know how she's going to be from one day to the next.
*** Michael is off for the summer. He is still doing pool work on the side. Currently he and Riley are in Holden's room playing video games together.
*** Holden is home for the summer. He is working a few days a week. He also goes back to his apartment and spends a night here and there. It's nice having him home again. We watched The Book of Eli together last night. He has already seen it, but wanted me to see it with him. It was a good movie. I really liked it, but can see why it wouldn't be for everybody.
I guess that's it. Isn't it enough? Really, when I get time between games, vacations, and swimming lessons I will write a real post. I missed out on diabetes blog week. I plan on doing the posts at a later date. There are some good suggestion given on what to talk about. I'm overdue for a sappy, emotional diabetes post anyway.
*** I'll start with diabetes things: ummmmmmm, not much to report. His last A1C was 7.3. I'm happy with that. But, if things continue like they've been lately it should be even lower next time. But, we all know that he could start running high 24/7 and that "great" A1C will be out the window. For the most part diabetes has been behaving itself as much as it can. Riley was playing soccer and baseball at the same time and was on a temp basal quite a bit because of it, but his sugars did well. Right now he's just playing baseball.
*** Speaking of baseball... It was supposed to end this week. But, he made Allstars. While I'm proud of him for making it, I'm not happy that he has practice every. single. day (other than Wednesdays and Sundays). I was looking forward to relaxing on my one month off (July), but it appears that will not be happening. He is playing in a tournament next weekend. Then the Allstar tournament is July 5-11. If they do well it may last longer than that. Still, Riley is excited about it. He didn't think he was going to make it and was a little upset. The smile on his face when they called out his name was priceless.
*** My last day of work for the summer is June 30th and it can't come quick enough. I'm off today and loving it. Even though I'll be busy the whole month of July I'm looking forward to not having to go into work every day.
*** We are planning a trip to New York City in July. We were planning on leaving on July 12th, but because of Allstars I'm looking at going the last week in July instead. I am very excited. None of us have ever been to New York. It's going to be a bit expensive, but it will be worth it. I figured since Holden is getting married next year, this will be our last chance to have a real family vacation with just the four of us. Holden has always wanted to visit New York, so that's what we are doing. If any of you have any tips or suggestions let me know. We are driving up and planning to spend 3 or 4 nights in Manhattan. I plan to use the subway for transportation once we get there. I have a lot of planning to do between now and then. I want to kind of know what we're going to do every day, so we're not just wandering all over the city. Again, any advice on what to do while we're there and where to eat would be greatly appreciated.
*** In addition to going to New York we will be going to Myrtle Beach in July also. We are going on a church mission trip. We've gone several years, but were unable to go last year because my mom was so sick. We've always spent 3 nights before and this year we will be spending 5. I'm looking forward to it. We do that as a family too. And, my future daughter-in-law is going too. We have fun helping others and have some down time in the pool too. And, one day we visit a water park. So, it's also kind of a little vacation.
*** Not enough things to do in July? How about we throw in swimming lessons for Riley? That's right, the one week we don't have vacation, a mission trip, or baseball, Riley will be taking swimming lessons. I wasn't going to sign him up because it was being done the week we were going to New York. Since that has changed I figured I'd sign him up. I'm not doing it because I'm a glutton for punishment and want to spend my entire time off shuttling him from here to there. I'm doing it because we live around water and he loves getting in it. It's important to me that he knows how to swim. Holden took swimming lessons pretty much every year for several years when he was younger. He's not a great swimmer, but he knows enough to keep from drowning. Riley took lessons last year, but still has a lot to learn.
*** My mom is STILL sick. June 20th will be exactly a year since her first visit to the ER. And, to be honest, we're not really any closer to knowing what's wrong with her than we were then. We have been around and around in circles. She's seen every doctor that has been suggested to her and some who haven't. And, they always send her on to someone else, because they can't figure out what going on with her. She has an appointment with a GI doctor next week as well as a urologist. Even after all this time, I always hope that we'll walk in and they'll say: "I know what's wrong with you." But, it hasn't happened yet. I have to believe that it will one day soon. At least she's not bad all the time. She never has a great day. But, she has good days and bad days. I never know how she's going to be from one day to the next.
*** Michael is off for the summer. He is still doing pool work on the side. Currently he and Riley are in Holden's room playing video games together.
*** Holden is home for the summer. He is working a few days a week. He also goes back to his apartment and spends a night here and there. It's nice having him home again. We watched The Book of Eli together last night. He has already seen it, but wanted me to see it with him. It was a good movie. I really liked it, but can see why it wouldn't be for everybody.
I guess that's it. Isn't it enough? Really, when I get time between games, vacations, and swimming lessons I will write a real post. I missed out on diabetes blog week. I plan on doing the posts at a later date. There are some good suggestion given on what to talk about. I'm overdue for a sappy, emotional diabetes post anyway.
Thursday, May 13, 2010
Eight Is Great!
My sweet baby boy turns 8 today. I cannot believe how the years have flown.
Happy birthday, little man. You inspire me with your courage and positive attitude each and every day.
I am so blessed to get to be your mom.
Friday, April 09, 2010
Quicky Updates
I don't mean to stay away for so long. I really don't. So, for now, here are some quick updates on life.
** Had my surgery (hysterectomy, kept one ovary) on March 29th. Everything went well. I spent one night in the hospital. I begged the doc to let me go home the night after surgery, but he wouldn't let me. He said there was too much of a risk of bleeding. But, he did take away my pain pump and catheter so I could move around more. So, I came home first thing the next morning and have done well. Probably have done too much on some days. My belly lets me know when I've done too much because it swells. As far as the pain goes, it has not been anywhere near the pain I was in before surgery. Only having to take Ibuprofen for the pain. Have my post-op appointment on Monday and plan to return to work on Tuesday. ( In addition, the two stray kittens (Savannah and Samantha) we got in December had their hysterectomy this week. We've all been lounging around together. Actually, we haven't. They started jumping up on the couch and chasing each other the night after surgery. They took it a little better than I did.)
** My mom is still not doing well. We still do not have any answers as to what is going on with her. She has good and bad days. She has been sick for 10 months now. I've lost count of how many doctors she has seen or how many times she's been in the hospital. So, if you don't mind when you say your prayers include a quick one for my mom.
** Holden is doing well. In a few short weeks his first year of college will be done. I can't believe it. It has flown by. You know, I thought I would die when he left for college, but I didn't. It was rough for a while, but it was also nice to see him out on his own and to know that I didn't do such a bad job raising him after all. He still comes home pretty much every weekend. He will be home tonight. He is going to work first and then he'll come home. He texts me almost every day. I am so proud of the young man he has become.
** Michael and I are still saving up a down payment for a house. It's not easy. We have both been on spring break this week and he's worked most of it putting up and working on pools. I hate that he has to do it. But, it's good money. And, I want a house that we can call our own. Also, since my last post we celebrated our 10 year wedding anniversary. We didn't do anything special. We went out to eat at a local restaurant that night and the following Saturday we went and looked at houses and went out to eat again. (Also, Michael had a birthday yesterday. Happy birthday Michael Alexander. I love you!!!)
** Riley is playing soccer and baseball. Soccer practice started a few weeks before baseball did. Baseball games start a couple of weeks before soccer ends. It makes for busy weeks. He had baseball practice on Monday and soccer practice last night. His first soccer game is Saturday at 11:30 and he has baseball practice that morning at 9:00. It seems like a lot, but he loves it and doesn't want to give up either one. I am glad he is able to play both.
___________________________________________________________________
Now, let's talk diabetes. That's what this blog is supposed to be about anyway.
** A few days after my last post Riley's pump starting unpriming itself. It had done it before but not enough to warrant a new pump (according to Animas). This time they said to send it back. We got another Animas 2020 while we waited for the PING. It didn't take long before the paperwork was straight and he had his new pump. And, it didn't cost us as much out of pocket as I thought it would. To sum things up we love, love, love it. The remote is fabulous!! He can be up to 10 feet away from me and I can bolus him. He got it in Duke blue. (BTW way to go Duke 2010 National Champs !!!)
** Don't really have much else to say about diabetes. I guess that's a good thing and a reason I don't post as much as I used to. What else is there to say? Diabetes sucks, enough said. He has highs and he has lows and he has some sugars in between. He deals with it really well and I'm very proud of him. He is taking on more and more of his care. I hardly ever check his sugar anymore, only when he asks me too. He does all of his bolusing at school, but I handle it when he's at home. He's able to read labels for carbs now. He understands so much about what affects his sugars and what doesn't. I still hope and long for a cure. All my donations continue to go to Dr. Faustman's research. I pray every day for a cure, but have learned to live life as though there will never be one (if that makes sense).
Well, I guess that's it for now. Thank you to anyone who is still reading.
** Had my surgery (hysterectomy, kept one ovary) on March 29th. Everything went well. I spent one night in the hospital. I begged the doc to let me go home the night after surgery, but he wouldn't let me. He said there was too much of a risk of bleeding. But, he did take away my pain pump and catheter so I could move around more. So, I came home first thing the next morning and have done well. Probably have done too much on some days. My belly lets me know when I've done too much because it swells. As far as the pain goes, it has not been anywhere near the pain I was in before surgery. Only having to take Ibuprofen for the pain. Have my post-op appointment on Monday and plan to return to work on Tuesday. ( In addition, the two stray kittens (Savannah and Samantha) we got in December had their hysterectomy this week. We've all been lounging around together. Actually, we haven't. They started jumping up on the couch and chasing each other the night after surgery. They took it a little better than I did.)
** My mom is still not doing well. We still do not have any answers as to what is going on with her. She has good and bad days. She has been sick for 10 months now. I've lost count of how many doctors she has seen or how many times she's been in the hospital. So, if you don't mind when you say your prayers include a quick one for my mom.
** Holden is doing well. In a few short weeks his first year of college will be done. I can't believe it. It has flown by. You know, I thought I would die when he left for college, but I didn't. It was rough for a while, but it was also nice to see him out on his own and to know that I didn't do such a bad job raising him after all. He still comes home pretty much every weekend. He will be home tonight. He is going to work first and then he'll come home. He texts me almost every day. I am so proud of the young man he has become.
** Michael and I are still saving up a down payment for a house. It's not easy. We have both been on spring break this week and he's worked most of it putting up and working on pools. I hate that he has to do it. But, it's good money. And, I want a house that we can call our own. Also, since my last post we celebrated our 10 year wedding anniversary. We didn't do anything special. We went out to eat at a local restaurant that night and the following Saturday we went and looked at houses and went out to eat again. (Also, Michael had a birthday yesterday. Happy birthday Michael Alexander. I love you!!!)
** Riley is playing soccer and baseball. Soccer practice started a few weeks before baseball did. Baseball games start a couple of weeks before soccer ends. It makes for busy weeks. He had baseball practice on Monday and soccer practice last night. His first soccer game is Saturday at 11:30 and he has baseball practice that morning at 9:00. It seems like a lot, but he loves it and doesn't want to give up either one. I am glad he is able to play both.
___________________________________________________________________
Now, let's talk diabetes. That's what this blog is supposed to be about anyway.
** A few days after my last post Riley's pump starting unpriming itself. It had done it before but not enough to warrant a new pump (according to Animas). This time they said to send it back. We got another Animas 2020 while we waited for the PING. It didn't take long before the paperwork was straight and he had his new pump. And, it didn't cost us as much out of pocket as I thought it would. To sum things up we love, love, love it. The remote is fabulous!! He can be up to 10 feet away from me and I can bolus him. He got it in Duke blue. (BTW way to go Duke 2010 National Champs !!!)
** Don't really have much else to say about diabetes. I guess that's a good thing and a reason I don't post as much as I used to. What else is there to say? Diabetes sucks, enough said. He has highs and he has lows and he has some sugars in between. He deals with it really well and I'm very proud of him. He is taking on more and more of his care. I hardly ever check his sugar anymore, only when he asks me too. He does all of his bolusing at school, but I handle it when he's at home. He's able to read labels for carbs now. He understands so much about what affects his sugars and what doesn't. I still hope and long for a cure. All my donations continue to go to Dr. Faustman's research. I pray every day for a cure, but have learned to live life as though there will never be one (if that makes sense).
Well, I guess that's it for now. Thank you to anyone who is still reading.
Monday, March 08, 2010
What's Happening
I don’t post on a regular basis anymore. My blog reading has slowed down considerably too. Still, I think about you guys often and even if I don’t type out an actual post, I’ve written many a blog post in my head.
Just wanted to update anyone who might be interested on what’s been going on lately.
● First, the biggest news; Holden got engaged last weekend. He and his new fiancé, Brittaney, have been dating for almost 4 years now. They have set a date for April 23, 2011. That will be the 5 year anniversary of when they first started going out. He’s young and she’s young, 19 and 18. I’m not thrilled about it and would rather he wait until he’s out of college. Still, it’s his choice. He assures me he is still going to pursue becoming a physical therapist. She will be starting college in the fall at the same place Holden is. They both assure me they are going to stay in school. It’s doable, but it will be hard. I am a firm believer that anyone can do whatever they want as long as they are committed to their goal and will work hard for it. Still, he’s my baby and I’m not ready for it. Guess I have another year to get ready anyway.
● My surgery (hysterectomy) is scheduled for March 29th. The closer it gets the more anxious I get. I’m just ready to get it over with so I can stop thinking about the “what-ifs”. I hope to be having a DaVinci robotic surgery. (I have my pre-op on the 19th so will get more details then.) Mainly I’m worried about how speedy the recovery will be. Really don’t have a whole lot of time off of work. The doctor told me I’d be out 2 weeks, but I’ve requested 3 weeks off to be safe. I’m going to try to go back at the 2 week mark if at all possible. That way if Riley gets sick or has a field trip I want to go on I can take a day off for that. Just don’t want to use up all my sick time if I can help it.
Like I said, I’m anxious. I’m starting to work on getting my house in order. I want everything clean and straight prior to my surgery. My problem is I know what I want to do, but haven’t gotten motivated to do it yet. I’m a very last minute person which only adds to my stress level. I’m trying to push myself to get things done now rather than later. My surgery is the Monday before Easter so I know I need to get my Easter shopping for the kids done pretty soon.
I’ve weighed the pros and cons of surgery and the pros far outweigh the cons. The one thing I keep reminding myself when I have doubts about going through the surgery is that I’ve been hurting going on 20 years now. Also, I hurt about 2 weeks out of every month. When you add that up it means I’m in pain about 6 months out of the year. I just thought of that yesterday. It’s staggering, really, to think I’ve given that much of my life up with this. Just ready to get it over with and get on with my life.
● Riley’s been having a lot of lows lately. I’ve been kind of holding off on doing anything with his basals. Usually this sort of thing works itself out. It doesn’t seem to be doing that so I’ll be sitting down tonight and trying to figure out what to do about the lows and his basals. He had a 48 last night (the lowest he’s had in a good while). Usually, he just says he feels low, drinks a juice, and goes on about his business. But, the 48 threw him for a loop. He was shaky and looked scared to death. The low came right at bedtime and thanks to good ol’ rebounds and my overzealous attempt to stop the low, the rest of his nighttime sugars were over 300. He was 188 at breakfast this morning, so was finally starting to come down. His teacher called at lunch and he was 72. That’s how most of his lows have been: low enough to have him drink juice, but not low enough to really make him feel bad.
● I totally missed Riley’s pump anniversary. I’ve remembered it every year but his one. On March 3rd he had been on the pump for 4 long years. That means his pump warranty has expired. At first we were told that once it expired he could get a new pump. Then, I was told that insurance would not pay for another one until his current pump malfunctions. He has an Animas 2020 now. Once this one croaks he will be getting a Ping. Animas told me that once his pump does malfunction they will still send a replacement pump until all the paperwork is done for a new one. That made me feel better because I thought he might have to be without a pump for a while. So, we sit and wait for his pump to do something crazy. He’s had 9-10 pumps over the past 4 years. The last one he got was in September. This one will probably last for years. While I’m not looking forward to the out of pocket expense for a new pump, I cannot wait for the remote. It seems like it will make things easier. Riley currently wears his pump in pockets sewed into his waistband. So, every time he needs insulin he has to dig in his pants and fish out his pump. It will especially come in handy for dosing in the car.
● My mom is doing better, but still doesn’t have any real answers as to what is going on. Over the past 9 months she’s been in the hospital 4 times. She’s been to the ER 5 times at 3 different hospitals. She’s seen 3 neurologists, a rheumatologist, a psychiatrist, a cardiologist, and a gastroenterologist. She’s even had gallbladder surgery. Everyone she’s seen tells her they can’t find anything wrong with her. Whatever is going on is neurological but no one can seem to put their finger on what is causing her symptoms. She got her 3rd neuro opinion from a physician at Duke a couple of weeks ago. He’s given us more hope than anyone else. She goes for a sleep-deprived EEG on Thursday. Her test is at 10:00 AM and she has been told she cannot sleep past 12:00 PM on Wednesday. That means she has to stay awake for 22 hours. I can’t imagine even trying that. Of course, I’m sleep-deprived all the time. What with sugar checks and belly pain I’m lucky to get 5 hours of sleep per night. Luckily, Holden is on spring break this week. He has volunteered to stay with Mom Wednesday night and help keep her awake by playing games with her and stuff.
● Michael and I are trying to save up a down payment so we can build a house. At first, we were talking about buying a house, but we changed our minds about that. We’d rather have something we built together. We have found some land we’re interested in, but are trying to save up enough money to make a down payment on the land and house at the same time. I’m just hoping the land isn’t sold before we can get it. But, if it is, it is and we’ll have to find something else. Saving up a down payment wouldn’t be as hard if Riley wasn’t in private school. I’ve said before that the local public school system here leaves much to be desired. Holden went to private school and Riley is still there. Unless some drastic changes are made to our school system he will be there until he graduates. So, in addition to saving up for the down payment we are also saving up for a tuition payment.
● My wedding anniversary is on March 11th. We will have been married for 10 years. I really do love Michael more now than when we got married. We’ve been through a lot together the past 10 years, the toughest being Riley’s diagnosis. Somehow we always make it through. I love him very much and I am very blessed to have found him. We don’t really have plans to do anything special. We had talked about going away for a couple of days, but had to nix that plan due to a) my mom’s health b) trying to save money for a down payment and c) not wanting to take any more time off of work because I’m already taking time for my surgery. Like I said Holden will be home this week, so I’m sure we’ll go out Friday and eat and go to a movie of something while Holden watches Riley for us. It’s not important what we do, what’s important is that we made it this far and we’re more in love than ever. It’s nice to know I can trust him and that he will always be there for me. Knowing that whatever I go through I don’t have to do it alone is a big comfort to me.
Geez, I guess that’s enough for one day. I really don’t need to go so long without posting anymore. I will try to post again soon, but I’m not making any promises. I’m going to be busy cleaning house and pre-preparing meals…
Just wanted to update anyone who might be interested on what’s been going on lately.
● First, the biggest news; Holden got engaged last weekend. He and his new fiancé, Brittaney, have been dating for almost 4 years now. They have set a date for April 23, 2011. That will be the 5 year anniversary of when they first started going out. He’s young and she’s young, 19 and 18. I’m not thrilled about it and would rather he wait until he’s out of college. Still, it’s his choice. He assures me he is still going to pursue becoming a physical therapist. She will be starting college in the fall at the same place Holden is. They both assure me they are going to stay in school. It’s doable, but it will be hard. I am a firm believer that anyone can do whatever they want as long as they are committed to their goal and will work hard for it. Still, he’s my baby and I’m not ready for it. Guess I have another year to get ready anyway.
● My surgery (hysterectomy) is scheduled for March 29th. The closer it gets the more anxious I get. I’m just ready to get it over with so I can stop thinking about the “what-ifs”. I hope to be having a DaVinci robotic surgery. (I have my pre-op on the 19th so will get more details then.) Mainly I’m worried about how speedy the recovery will be. Really don’t have a whole lot of time off of work. The doctor told me I’d be out 2 weeks, but I’ve requested 3 weeks off to be safe. I’m going to try to go back at the 2 week mark if at all possible. That way if Riley gets sick or has a field trip I want to go on I can take a day off for that. Just don’t want to use up all my sick time if I can help it.
Like I said, I’m anxious. I’m starting to work on getting my house in order. I want everything clean and straight prior to my surgery. My problem is I know what I want to do, but haven’t gotten motivated to do it yet. I’m a very last minute person which only adds to my stress level. I’m trying to push myself to get things done now rather than later. My surgery is the Monday before Easter so I know I need to get my Easter shopping for the kids done pretty soon.
I’ve weighed the pros and cons of surgery and the pros far outweigh the cons. The one thing I keep reminding myself when I have doubts about going through the surgery is that I’ve been hurting going on 20 years now. Also, I hurt about 2 weeks out of every month. When you add that up it means I’m in pain about 6 months out of the year. I just thought of that yesterday. It’s staggering, really, to think I’ve given that much of my life up with this. Just ready to get it over with and get on with my life.
● Riley’s been having a lot of lows lately. I’ve been kind of holding off on doing anything with his basals. Usually this sort of thing works itself out. It doesn’t seem to be doing that so I’ll be sitting down tonight and trying to figure out what to do about the lows and his basals. He had a 48 last night (the lowest he’s had in a good while). Usually, he just says he feels low, drinks a juice, and goes on about his business. But, the 48 threw him for a loop. He was shaky and looked scared to death. The low came right at bedtime and thanks to good ol’ rebounds and my overzealous attempt to stop the low, the rest of his nighttime sugars were over 300. He was 188 at breakfast this morning, so was finally starting to come down. His teacher called at lunch and he was 72. That’s how most of his lows have been: low enough to have him drink juice, but not low enough to really make him feel bad.
● I totally missed Riley’s pump anniversary. I’ve remembered it every year but his one. On March 3rd he had been on the pump for 4 long years. That means his pump warranty has expired. At first we were told that once it expired he could get a new pump. Then, I was told that insurance would not pay for another one until his current pump malfunctions. He has an Animas 2020 now. Once this one croaks he will be getting a Ping. Animas told me that once his pump does malfunction they will still send a replacement pump until all the paperwork is done for a new one. That made me feel better because I thought he might have to be without a pump for a while. So, we sit and wait for his pump to do something crazy. He’s had 9-10 pumps over the past 4 years. The last one he got was in September. This one will probably last for years. While I’m not looking forward to the out of pocket expense for a new pump, I cannot wait for the remote. It seems like it will make things easier. Riley currently wears his pump in pockets sewed into his waistband. So, every time he needs insulin he has to dig in his pants and fish out his pump. It will especially come in handy for dosing in the car.
● My mom is doing better, but still doesn’t have any real answers as to what is going on. Over the past 9 months she’s been in the hospital 4 times. She’s been to the ER 5 times at 3 different hospitals. She’s seen 3 neurologists, a rheumatologist, a psychiatrist, a cardiologist, and a gastroenterologist. She’s even had gallbladder surgery. Everyone she’s seen tells her they can’t find anything wrong with her. Whatever is going on is neurological but no one can seem to put their finger on what is causing her symptoms. She got her 3rd neuro opinion from a physician at Duke a couple of weeks ago. He’s given us more hope than anyone else. She goes for a sleep-deprived EEG on Thursday. Her test is at 10:00 AM and she has been told she cannot sleep past 12:00 PM on Wednesday. That means she has to stay awake for 22 hours. I can’t imagine even trying that. Of course, I’m sleep-deprived all the time. What with sugar checks and belly pain I’m lucky to get 5 hours of sleep per night. Luckily, Holden is on spring break this week. He has volunteered to stay with Mom Wednesday night and help keep her awake by playing games with her and stuff.
● Michael and I are trying to save up a down payment so we can build a house. At first, we were talking about buying a house, but we changed our minds about that. We’d rather have something we built together. We have found some land we’re interested in, but are trying to save up enough money to make a down payment on the land and house at the same time. I’m just hoping the land isn’t sold before we can get it. But, if it is, it is and we’ll have to find something else. Saving up a down payment wouldn’t be as hard if Riley wasn’t in private school. I’ve said before that the local public school system here leaves much to be desired. Holden went to private school and Riley is still there. Unless some drastic changes are made to our school system he will be there until he graduates. So, in addition to saving up for the down payment we are also saving up for a tuition payment.
● My wedding anniversary is on March 11th. We will have been married for 10 years. I really do love Michael more now than when we got married. We’ve been through a lot together the past 10 years, the toughest being Riley’s diagnosis. Somehow we always make it through. I love him very much and I am very blessed to have found him. We don’t really have plans to do anything special. We had talked about going away for a couple of days, but had to nix that plan due to a) my mom’s health b) trying to save money for a down payment and c) not wanting to take any more time off of work because I’m already taking time for my surgery. Like I said Holden will be home this week, so I’m sure we’ll go out Friday and eat and go to a movie of something while Holden watches Riley for us. It’s not important what we do, what’s important is that we made it this far and we’re more in love than ever. It’s nice to know I can trust him and that he will always be there for me. Knowing that whatever I go through I don’t have to do it alone is a big comfort to me.
Geez, I guess that’s enough for one day. I really don’t need to go so long without posting anymore. I will try to post again soon, but I’m not making any promises. I’m going to be busy cleaning house and pre-preparing meals…
Thursday, February 04, 2010
Kinder than necessary
I started to write a blog post and deleted it. It was just way too negative. I have a lot going on in my life right now. My mom is still sick with no answers, a piece of land we were looking at to build a house fell through, I have to have surgery…
Anyway, not going into details about the negative today. It’s just too easy to get sucked into a black hole when I think about it.
So, a few positives…
** Holden is doing great in college. Last semester he got 4 A’s and 2 B’s. The B’s were in his easiest classes (sociology and music). If he had done what he needed to do in those classes he would have had a 4.0. But, I’ll take a 3.7. It’s not too shabby either.
He’s enjoying college and doing well living on his own. He has yet to bring home even one item of dirty clothes for me to wash. It makes me think I didn’t do such a bad job raising him after all.
Also, his birthday is tomorrow. He will be 19. I can’t believe it’s been 19 years. They really have flown by.
** Riley’s sugars have begun to behave for the most part. He’s had a few lows and a few highs. He was going into the 300s at least once a day, but that hasn’t happened in a while. His nighttime numbers, which have always been a challenge, have been great lately. I’m just going to try and enjoy it while I can. I know tomorrow everything can change and I’ll be cursing his meter again.
** On the diabetes front, Riley’s pump warranty expires next week. I am already in the works to get an Animas Ping. He has an Animas 2020 now and we love it. The Ping has a remote and I cannot wait for that. Right now he keeps his pump in a pocket sewn into the inside of his pants. So, we have to dig around in the pocket every time he needs to bolus. And, when he’s strapped into the car it’s even more of a pain. So, yay to diabetes technology!! I can’t wait to get the remote for his pump.
** I saw this quote in a doctor’s office the other day and it really struck a cord with me. Like I said before, I have quite a few things causing stress in my life right now. But, I am truly blessed all at the same time. Anyway, this quote reminded me that everyone has their own things that they are going through. We often have no idea what the bank teller is going through or our waitress at a restaurant, or even our co-workers for that matter. So, we shouldn’t be so quick to jump to conclusions about people.
The quote is: “"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Truer words were never spoken…
Anyway, not going into details about the negative today. It’s just too easy to get sucked into a black hole when I think about it.
So, a few positives…
** Holden is doing great in college. Last semester he got 4 A’s and 2 B’s. The B’s were in his easiest classes (sociology and music). If he had done what he needed to do in those classes he would have had a 4.0. But, I’ll take a 3.7. It’s not too shabby either.
He’s enjoying college and doing well living on his own. He has yet to bring home even one item of dirty clothes for me to wash. It makes me think I didn’t do such a bad job raising him after all.
Also, his birthday is tomorrow. He will be 19. I can’t believe it’s been 19 years. They really have flown by.
** Riley’s sugars have begun to behave for the most part. He’s had a few lows and a few highs. He was going into the 300s at least once a day, but that hasn’t happened in a while. His nighttime numbers, which have always been a challenge, have been great lately. I’m just going to try and enjoy it while I can. I know tomorrow everything can change and I’ll be cursing his meter again.
** On the diabetes front, Riley’s pump warranty expires next week. I am already in the works to get an Animas Ping. He has an Animas 2020 now and we love it. The Ping has a remote and I cannot wait for that. Right now he keeps his pump in a pocket sewn into the inside of his pants. So, we have to dig around in the pocket every time he needs to bolus. And, when he’s strapped into the car it’s even more of a pain. So, yay to diabetes technology!! I can’t wait to get the remote for his pump.
** I saw this quote in a doctor’s office the other day and it really struck a cord with me. Like I said before, I have quite a few things causing stress in my life right now. But, I am truly blessed all at the same time. Anyway, this quote reminded me that everyone has their own things that they are going through. We often have no idea what the bank teller is going through or our waitress at a restaurant, or even our co-workers for that matter. So, we shouldn’t be so quick to jump to conclusions about people.
The quote is: “"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Truer words were never spoken…
Tuesday, January 19, 2010
Endo Rant and an Ode to Dr. M
Riley had his endo appointment on Friday. His A1C had gone up from 7.2 to 7.8. I wasn’t surprised. On the way to the appointment Riley and I took a guess as to what his A1C would be. I said 7.8 and he said 8.1. I’m glad, at least, that I was right and he was wrong.
December was pretty rough on his numbers. There were highs and lows (mainly highs) with no pattern to them. Still, I knew I hadn’t been on top of his numbers like I should. I knew I didn’t adjust basals as often as I should. I have no excuse as to why. I just know I could have, should have, done better.
This was our second visit to this endo. Our first visit was quite pleasant. I liked him and he was quite pleased with Riley’s A1C of 7.2 and said his goal for Riley was 7.5. Last time he didn’t recommend much of anything other than a slight little basal increase. He didn’t like that Riley’s basals were a little higher than his bolus, but other than that he was pleased. He did say that sometimes when basals get like that he orders to have the child to go on a set basal rate all day. That was not a pleasant thought for me.
I knew, without a shadow of a doubt, that Riley’s A1C would be above 7.5, so I wondered what the doctor would say this time. I didn’t know him well enough to know if he’d fuss at me or not.
The nurse came in first. She looked at the numbers and graphs I had printed out from excel. She looked at his basal to bolus ratio. I told her we’d had a rough couple of months to which she replied, “I can see that.” Then, she made a comment that he had one night that he was 57 at 3 AM and another where he was 315. She just raised her eyebrows like that had never happened before. But, unfortunately it has, way too many times to count. That is why I have been sleep deprived for the past 4 ½ years.
Then, she wanted to know how often we change sets. I told her every 3 days. She suggested we try every 2 days instead to see if that helped. I told her that I really didn’t want to do that, that a needle stick every 3 days was enough. I also told her that Riley goes low with most site changes, even though I don’t fill his canula and decrease his basal 60% for 3.5 hours. It’s just one of those things. (Not to mention the increased cost…)
She looked at me and said, “It’s because it’s fresh insulin. That’s why he goes low.”
I looked at her and said nothing. I know from my (almost) 4 years of experience with the pump that it is not fresh insulin. That’s what I used to think too. But, there have been times when Riley’s insulin was starting to get low and it wasn’t quite time for a site change and I just put in fresh insulin without changing his set and he didn’t go low at all. She went on to say that since that is what causes the lows that changing every 2 days would make more sense because the insulin wouldn’t seem as new.
Huh? She lost me there. Again, I looked at her and said nothing. Then she said we’d see what the doctor said about it.
She checked out Riley’s pump sites and said they looked fine. Then, she checked out his feet, which, thankfully, were fine too.
Then, I mentioned how I knew his A1C would be up. She went out to check and came back saying it was 7.8. I guess she saw me cringe and she said, “Oh, don’t worry about that. We have kids that come in with 9’s and 10’s.” Then, she shut the door and walked away.
Then, the doctor came in. He said that Riley’s A1C was up from last time but that it was still “very good”. He went on to say that his goal for Riley was 8.0, so 7.8 was just fine. So, let me get this straight? When he was 7.2 his goal was 7.5, but now that he’s 7.8 his goal is 8.0? I don’t get it. I don’t go to the doctor’s office to be pacified. I go there for help. I don’t go to get a pat on the back and to get told I’m doing a good job when I know that I’m not. They didn’t even ask how often I’d been logging and adjusting basals.
Then, the doctor went on to say, “I’ve had kids in here who’s A1Cs were 13 or 14. So, 7.8 is good.”
Let me just stop here. I have NEVER compared my kids with other kids. I have NEVER compared standards for my kids with other people’s kids. I HATE it when people do that. My son is not everyone else’s son. He is my son and I know what his A1C could be. That’s like Holden or Riley making a “C” in a class. They have always been capable of straight A’s. It doesn’t matter to me that everyone else in the class made a C too. What matters is that I know what kind of grades my children are capable of making. I also know that some kids are just not capable of that. Some kids are happy if they make a “D” and they really worked for that D. I know that. I work in a school system. Every child is not the same. And, if my children were only capable of making a C or D, then I’d be quite pleased with a C. But, they are capable of all A’s and B’s so that’s what I expect. I really, really don’t care what the kid next to them made.
If I were only capable of having Riley’s A1C in the high 7’s, then I guess I’d have to be OK with that. But, I know I’m capable of better, at least for now. I also know that once he hits puberty and his hormones go all out of whack I might be elated to have it at 7.8.
Furthermore, I know there are parents reading this right now who would be thrilled with a 7.8 and don’t understand why it bothers me. I know parents who are very vigilant with their children’s logging and adjusting of basals and they still don’t see 7’s very often. For whatever reason, their children’s sugars are harder to stabilize. Which brings me back to my earlier point that everyone is different and shouldn’t be compared to one another.
Now, that I’ve ranted about that for a bit, let me say that the 7.8 didn’t upset me all that much (contrary to all the stuff I just said). I knew that’s what it would be and I knew what I needed to do to see that change. He’s been that high before and I’ve gotten it down. I also know that it happens from time to time and you make adjustments and move forward.
What got me was the constant comparing of how bad his number could have been, that his A1C wasn’t a “bad” as a lot of kids. I kind of felt like I was being chastised for caring about his A1C.
OK, let me continue with my rant, which at this point, is probably incoherent to most of you.
The doctor went on to say that Riley’s basal to bolus ratio was dead-on. It was 50/50 just like it should be. But, you see, I know that Riley does better with it being 45/55 or so. I know that doesn’t seem like a big difference but with his tiny doses, it is. For example if his total daily dose of insulin is 16, then a 50% basal would be 8.0. A 55% basal would be 8.8. To the adults out there, that may not seem like much of a difference. But, for Riley it is a huge difference. And, I know from experience that’s really where it needs to be.
Then, the doctor goes on to say that sometimes parents do too much. And, then went on to say that I am one of those parents. He said I needed to back off a bit and stop checking so often. He said that there was no reason to check Riley 2 hours after he had breakfast because I knew he’d be high anyway. First off, I don’t check Riley 2 hours after he eats unless he says he feels low or something. The only time Riley’s sugars are checked is at meals and snacks and if he says he feels low. He is also checked a couple of times in the middle of the night. I’ve already gone over why we do that. For example, Riley eats breakfast at 7 AM, he is not checked again until 10:45 AM when he is about to eat lunch at school; then, again at 1:45 PM for snack. Excessive, I don’t think so. Often, unless he says he feels low, he’s not checked again until between 5-6 PM when he eats supper.
Secondly, when I’m trying to get his basals right I’ll probably test more. Because, guess what? I don’t want him in the 300s every single day 2 hours after breakfast. That can be fixed most of the time. Plus, how do I know what his carb coverage should be without testing after meals? (Man, you should see me typing this right now. I bet my keyboard is glad it doesn’t have feeling.)
Then, the best part of all, the doctor told me that because I was doing too much for my child, I had probably gotten his basals all out of whack. He didn’t quite use those words, but that’s basically what he said. He then said he had taken Riley’s total basal and divided it by 24 and come up with 0.35. He said he wanted Riley’s basal to be 0.35 all day and all night. Then, he said he wanted his carb coverage to be the same all day too.
I had kept my mouth shut up until then but when he said that I had to say something. Riley’s carb coverage is about the same all day, for the most part, anywhere from 25-27g. But, at breakfast, it is 20g. It has to be. Otherwise he’d be really, really high. When I told him that he said, “OK, we’ll keep his breakfast coverage at 20g”, like he was throwing me a bone or something.
And, I was thinking, “You’re darn right I’m keeping it at 20g. I don’t need your permission to do that.”
Anyway, that’s the gist of what went on. He handed me my instructions and sent us on our way.
I know I’ve made him sound like a horrible person. But, I don’t really think that he is. I think it all boils down to the fact that we had the very best endo in the world before. After you’ve had the best, everyone else pales in comparison.
Dr. M would have looked at those sugars in the middle of the night and said, “Why do you think he was 57 one night and 315 the next? Was it increased activity? Did he eat something different for supper?” And, if there wasn’t anything out of the ordinary she would chalk it up to just one of those things and move on.
She would always ask Riley how he was doing. The question she always asked him, without fail, even when he was 3, was: “Is diabetes keeping you from doing anything you want to do?” She always asked how school was going and how soccer was. During this endo visit Riley lay on the bed reading a book the whole time. The only thing the doctor asked him was what he got for Christmas. Otherwise, it was like he wasn’t even in the room.
Riley always answered Dr. M’s question with a “no”. But, I know that if he ever said yes, she and he would come up with a plan of how to change it.
Also, when Riley’s A1C was up to 7.8 she would say she was OK with it, but she knew I wasn’t so we’d sit and figure out what to do about it. On our very first visit, she brought up how much we were checking in the middle of the night. When I told her why, she never brought it up again.
Dr. M would always make suggestions about what to do and then ask me what I thought. There were times when our opinions differed. She always said that she trusted my instincts and we’d try it like I wanted it. She said more than one time she would look at his basals and wonder why it was like it was and then she’d look at his sugars and see why I had done what I had done.
I guess it all boils down to the fact that Dr. M may have gone to years and years of medical school and she had years and years of pediatric endocrinology under her belt, but, she still realized that, when it came down to it, I was the expert when it came to my son. My 4+ years of experience with his disease trumped her 30+ every time. Because, we all know everyone with D is different. There are no cookie cutters when it comes to this disease. Dr. M got it. I’m afraid many doctors do not.
OK, rant over. I don’t despise Riley’s doctor. I think he’s doing what he thinks is best. I don’t have plans to change endos any time soon. (unless, Dr. M comes out of retirement)
And, by the way, I didn’t make Riley’s basals 0.35 across the board. I made a few basal changes and that was it. I’m not saying that the time won’t come that I might have to try it, but that time is not right now.
When, I was talking to Michael about it, he said, “What would Dr. M tell you to do?” I said she would tell me to trust my instincts and he said that is exactly what I should do.
So, right or wrong, that’s what I’m doing.
December was pretty rough on his numbers. There were highs and lows (mainly highs) with no pattern to them. Still, I knew I hadn’t been on top of his numbers like I should. I knew I didn’t adjust basals as often as I should. I have no excuse as to why. I just know I could have, should have, done better.
This was our second visit to this endo. Our first visit was quite pleasant. I liked him and he was quite pleased with Riley’s A1C of 7.2 and said his goal for Riley was 7.5. Last time he didn’t recommend much of anything other than a slight little basal increase. He didn’t like that Riley’s basals were a little higher than his bolus, but other than that he was pleased. He did say that sometimes when basals get like that he orders to have the child to go on a set basal rate all day. That was not a pleasant thought for me.
I knew, without a shadow of a doubt, that Riley’s A1C would be above 7.5, so I wondered what the doctor would say this time. I didn’t know him well enough to know if he’d fuss at me or not.
The nurse came in first. She looked at the numbers and graphs I had printed out from excel. She looked at his basal to bolus ratio. I told her we’d had a rough couple of months to which she replied, “I can see that.” Then, she made a comment that he had one night that he was 57 at 3 AM and another where he was 315. She just raised her eyebrows like that had never happened before. But, unfortunately it has, way too many times to count. That is why I have been sleep deprived for the past 4 ½ years.
Then, she wanted to know how often we change sets. I told her every 3 days. She suggested we try every 2 days instead to see if that helped. I told her that I really didn’t want to do that, that a needle stick every 3 days was enough. I also told her that Riley goes low with most site changes, even though I don’t fill his canula and decrease his basal 60% for 3.5 hours. It’s just one of those things. (Not to mention the increased cost…)
She looked at me and said, “It’s because it’s fresh insulin. That’s why he goes low.”
I looked at her and said nothing. I know from my (almost) 4 years of experience with the pump that it is not fresh insulin. That’s what I used to think too. But, there have been times when Riley’s insulin was starting to get low and it wasn’t quite time for a site change and I just put in fresh insulin without changing his set and he didn’t go low at all. She went on to say that since that is what causes the lows that changing every 2 days would make more sense because the insulin wouldn’t seem as new.
Huh? She lost me there. Again, I looked at her and said nothing. Then she said we’d see what the doctor said about it.
She checked out Riley’s pump sites and said they looked fine. Then, she checked out his feet, which, thankfully, were fine too.
Then, I mentioned how I knew his A1C would be up. She went out to check and came back saying it was 7.8. I guess she saw me cringe and she said, “Oh, don’t worry about that. We have kids that come in with 9’s and 10’s.” Then, she shut the door and walked away.
Then, the doctor came in. He said that Riley’s A1C was up from last time but that it was still “very good”. He went on to say that his goal for Riley was 8.0, so 7.8 was just fine. So, let me get this straight? When he was 7.2 his goal was 7.5, but now that he’s 7.8 his goal is 8.0? I don’t get it. I don’t go to the doctor’s office to be pacified. I go there for help. I don’t go to get a pat on the back and to get told I’m doing a good job when I know that I’m not. They didn’t even ask how often I’d been logging and adjusting basals.
Then, the doctor went on to say, “I’ve had kids in here who’s A1Cs were 13 or 14. So, 7.8 is good.”
Let me just stop here. I have NEVER compared my kids with other kids. I have NEVER compared standards for my kids with other people’s kids. I HATE it when people do that. My son is not everyone else’s son. He is my son and I know what his A1C could be. That’s like Holden or Riley making a “C” in a class. They have always been capable of straight A’s. It doesn’t matter to me that everyone else in the class made a C too. What matters is that I know what kind of grades my children are capable of making. I also know that some kids are just not capable of that. Some kids are happy if they make a “D” and they really worked for that D. I know that. I work in a school system. Every child is not the same. And, if my children were only capable of making a C or D, then I’d be quite pleased with a C. But, they are capable of all A’s and B’s so that’s what I expect. I really, really don’t care what the kid next to them made.
If I were only capable of having Riley’s A1C in the high 7’s, then I guess I’d have to be OK with that. But, I know I’m capable of better, at least for now. I also know that once he hits puberty and his hormones go all out of whack I might be elated to have it at 7.8.
Furthermore, I know there are parents reading this right now who would be thrilled with a 7.8 and don’t understand why it bothers me. I know parents who are very vigilant with their children’s logging and adjusting of basals and they still don’t see 7’s very often. For whatever reason, their children’s sugars are harder to stabilize. Which brings me back to my earlier point that everyone is different and shouldn’t be compared to one another.
Now, that I’ve ranted about that for a bit, let me say that the 7.8 didn’t upset me all that much (contrary to all the stuff I just said). I knew that’s what it would be and I knew what I needed to do to see that change. He’s been that high before and I’ve gotten it down. I also know that it happens from time to time and you make adjustments and move forward.
What got me was the constant comparing of how bad his number could have been, that his A1C wasn’t a “bad” as a lot of kids. I kind of felt like I was being chastised for caring about his A1C.
OK, let me continue with my rant, which at this point, is probably incoherent to most of you.
The doctor went on to say that Riley’s basal to bolus ratio was dead-on. It was 50/50 just like it should be. But, you see, I know that Riley does better with it being 45/55 or so. I know that doesn’t seem like a big difference but with his tiny doses, it is. For example if his total daily dose of insulin is 16, then a 50% basal would be 8.0. A 55% basal would be 8.8. To the adults out there, that may not seem like much of a difference. But, for Riley it is a huge difference. And, I know from experience that’s really where it needs to be.
Then, the doctor goes on to say that sometimes parents do too much. And, then went on to say that I am one of those parents. He said I needed to back off a bit and stop checking so often. He said that there was no reason to check Riley 2 hours after he had breakfast because I knew he’d be high anyway. First off, I don’t check Riley 2 hours after he eats unless he says he feels low or something. The only time Riley’s sugars are checked is at meals and snacks and if he says he feels low. He is also checked a couple of times in the middle of the night. I’ve already gone over why we do that. For example, Riley eats breakfast at 7 AM, he is not checked again until 10:45 AM when he is about to eat lunch at school; then, again at 1:45 PM for snack. Excessive, I don’t think so. Often, unless he says he feels low, he’s not checked again until between 5-6 PM when he eats supper.
Secondly, when I’m trying to get his basals right I’ll probably test more. Because, guess what? I don’t want him in the 300s every single day 2 hours after breakfast. That can be fixed most of the time. Plus, how do I know what his carb coverage should be without testing after meals? (Man, you should see me typing this right now. I bet my keyboard is glad it doesn’t have feeling.)
Then, the best part of all, the doctor told me that because I was doing too much for my child, I had probably gotten his basals all out of whack. He didn’t quite use those words, but that’s basically what he said. He then said he had taken Riley’s total basal and divided it by 24 and come up with 0.35. He said he wanted Riley’s basal to be 0.35 all day and all night. Then, he said he wanted his carb coverage to be the same all day too.
I had kept my mouth shut up until then but when he said that I had to say something. Riley’s carb coverage is about the same all day, for the most part, anywhere from 25-27g. But, at breakfast, it is 20g. It has to be. Otherwise he’d be really, really high. When I told him that he said, “OK, we’ll keep his breakfast coverage at 20g”, like he was throwing me a bone or something.
And, I was thinking, “You’re darn right I’m keeping it at 20g. I don’t need your permission to do that.”
Anyway, that’s the gist of what went on. He handed me my instructions and sent us on our way.
I know I’ve made him sound like a horrible person. But, I don’t really think that he is. I think it all boils down to the fact that we had the very best endo in the world before. After you’ve had the best, everyone else pales in comparison.
Dr. M would have looked at those sugars in the middle of the night and said, “Why do you think he was 57 one night and 315 the next? Was it increased activity? Did he eat something different for supper?” And, if there wasn’t anything out of the ordinary she would chalk it up to just one of those things and move on.
She would always ask Riley how he was doing. The question she always asked him, without fail, even when he was 3, was: “Is diabetes keeping you from doing anything you want to do?” She always asked how school was going and how soccer was. During this endo visit Riley lay on the bed reading a book the whole time. The only thing the doctor asked him was what he got for Christmas. Otherwise, it was like he wasn’t even in the room.
Riley always answered Dr. M’s question with a “no”. But, I know that if he ever said yes, she and he would come up with a plan of how to change it.
Also, when Riley’s A1C was up to 7.8 she would say she was OK with it, but she knew I wasn’t so we’d sit and figure out what to do about it. On our very first visit, she brought up how much we were checking in the middle of the night. When I told her why, she never brought it up again.
Dr. M would always make suggestions about what to do and then ask me what I thought. There were times when our opinions differed. She always said that she trusted my instincts and we’d try it like I wanted it. She said more than one time she would look at his basals and wonder why it was like it was and then she’d look at his sugars and see why I had done what I had done.
I guess it all boils down to the fact that Dr. M may have gone to years and years of medical school and she had years and years of pediatric endocrinology under her belt, but, she still realized that, when it came down to it, I was the expert when it came to my son. My 4+ years of experience with his disease trumped her 30+ every time. Because, we all know everyone with D is different. There are no cookie cutters when it comes to this disease. Dr. M got it. I’m afraid many doctors do not.
OK, rant over. I don’t despise Riley’s doctor. I think he’s doing what he thinks is best. I don’t have plans to change endos any time soon. (unless, Dr. M comes out of retirement)
And, by the way, I didn’t make Riley’s basals 0.35 across the board. I made a few basal changes and that was it. I’m not saying that the time won’t come that I might have to try it, but that time is not right now.
When, I was talking to Michael about it, he said, “What would Dr. M tell you to do?” I said she would tell me to trust my instincts and he said that is exactly what I should do.
So, right or wrong, that’s what I’m doing.
Tuesday, January 05, 2010
Rambling Ranting Time
I’ve had lots of blog posts running through my mind lately. But, due to some sort of virus issue with my computer I’ve been unable to get onto blogger. I finally found a solution to the problem today.
Where do I start?
Frustration…yeah, that’s where I will start. Riley’s sugars have been out of control for the past month or so. He’s gone high several times a day, with no obvious rhyme or reason to it, no pattern, no red- flag- here’s-where-you-need-to-adjust-basals, and, no obvious need for a basal increase. By “obvious need for a basal increase” I mean his ratio is dead on. I learned a long time ago that Riley’s basal needs to be about 55% of his total daily dose of insulin. Well, it is. Yet, still the highs. I say high, but he woke up with a blood sugar of 66 this morning. That, after going to bed with a sugar of 351.
I know I’ve been there and done that before, yet still frustrating. And, I know I shouldn’t focus on his A1C, but I can’t help it. His last one was 7.2. His new endo was amazed at it and thought it was great. Well, we go back next week and, somehow, I don’t think he’s going to be quite as amazed. I’m guessing 7.8, if we’re lucky. Aggggghhhhhhh!!!! I just want to scream. But, experience tells me that it won’t help, it will only give me a sore throat.
Maybe he’s growing? That’s what I usually blame for the wacky sugars. Another problem is that Riley has been out of control hungry lately. By that, I mean he is asking for food on an almost hourly basis. He’s started checking his sugar more frequently claiming he feels low (he rarely is). I think he’s checking because he hopes his sugar is low enough to eat. And, who am I to deny him food? Yet, he’s usually in the 200s when he checks and he just ate an hour before, and……
Agggggggggghhhhhhhhh!!! (Yeah, still not helping.)
Every time I tell him he can’t eat, I feel guilty. Yet, if I let him eat and his sugar is high I feel guilty too. Still, in the back of my mind I have this nagging feeling that by not letting him eat whenever he wants it is going to bring up issues of control later.
Maybe his carb coverage needs adjusting? Maybe I just need to let him eat and let the chips fall where they may. His sugars are sucky anyway, he might as well eat. It doesn’t help that there are still a few holiday treats at the house. Santa is forbidden from bringing chocolate and candy next year.
I guess the best thing to do is let him eat, but keep it low carb and healthy? Sounds good on paper. Doesn’t translate so well into the real world.
I am just so sick of this disease. Diabetes has a way of making me feel like a failure. I feel like I’m not doing enough for Riley, yet, strangely, at the same time, like I’m doing too much. How does that work?
OK, rambling ranting time is over. Any suggestions would be appreciated. I know he needs to eat, he’s obviously growing, but any suggestions on what to do about his basals?
I have good things going on too, lots of them. I am blessed beyond measure. I am excited about what 2010 might bring.
Yet, today, I just need to vent about this stupid, terrible, very bad disease that makes me want to pull every hair out one by one.
Where do I start?
Frustration…yeah, that’s where I will start. Riley’s sugars have been out of control for the past month or so. He’s gone high several times a day, with no obvious rhyme or reason to it, no pattern, no red- flag- here’s-where-you-need-to-adjust-basals, and, no obvious need for a basal increase. By “obvious need for a basal increase” I mean his ratio is dead on. I learned a long time ago that Riley’s basal needs to be about 55% of his total daily dose of insulin. Well, it is. Yet, still the highs. I say high, but he woke up with a blood sugar of 66 this morning. That, after going to bed with a sugar of 351.
I know I’ve been there and done that before, yet still frustrating. And, I know I shouldn’t focus on his A1C, but I can’t help it. His last one was 7.2. His new endo was amazed at it and thought it was great. Well, we go back next week and, somehow, I don’t think he’s going to be quite as amazed. I’m guessing 7.8, if we’re lucky. Aggggghhhhhhh!!!! I just want to scream. But, experience tells me that it won’t help, it will only give me a sore throat.
Maybe he’s growing? That’s what I usually blame for the wacky sugars. Another problem is that Riley has been out of control hungry lately. By that, I mean he is asking for food on an almost hourly basis. He’s started checking his sugar more frequently claiming he feels low (he rarely is). I think he’s checking because he hopes his sugar is low enough to eat. And, who am I to deny him food? Yet, he’s usually in the 200s when he checks and he just ate an hour before, and……
Agggggggggghhhhhhhhh!!! (Yeah, still not helping.)
Every time I tell him he can’t eat, I feel guilty. Yet, if I let him eat and his sugar is high I feel guilty too. Still, in the back of my mind I have this nagging feeling that by not letting him eat whenever he wants it is going to bring up issues of control later.
Maybe his carb coverage needs adjusting? Maybe I just need to let him eat and let the chips fall where they may. His sugars are sucky anyway, he might as well eat. It doesn’t help that there are still a few holiday treats at the house. Santa is forbidden from bringing chocolate and candy next year.
I guess the best thing to do is let him eat, but keep it low carb and healthy? Sounds good on paper. Doesn’t translate so well into the real world.
I am just so sick of this disease. Diabetes has a way of making me feel like a failure. I feel like I’m not doing enough for Riley, yet, strangely, at the same time, like I’m doing too much. How does that work?
OK, rambling ranting time is over. Any suggestions would be appreciated. I know he needs to eat, he’s obviously growing, but any suggestions on what to do about his basals?
I have good things going on too, lots of them. I am blessed beyond measure. I am excited about what 2010 might bring.
Yet, today, I just need to vent about this stupid, terrible, very bad disease that makes me want to pull every hair out one by one.
Subscribe to:
Posts (Atom)