Yes, I admit it. I am a “Think About it Staller”. I have blamed my son for many of the diabetes messes we have landed in but if I was a much more conscientious Mom and a bit less of a “think about it staller” we may not be in the current predicament.
Last night, we went for an evening walk. My phone was running on fumes so I plugged it in to charge and left it behind for a change. Imagine my surprise when I walked back into the house and saw two missed calls from my youngest son. There had to be trouble. He had left a message but I simply called him instead.
“My pump won’t let me bolus. When I need to bolus it screams at me instead.”
A lot of not so nice words went through my head as I realized that my son was at his father’s, not coming home for another week, and had no spare pump with him. I asked him if he had tried to take out the batteries, restart it and bolus. He had tried everything. Super crap! I asked him for the serial number off of his pump and the support line telephone number. I told him I would get on the phone and we would go from there. In the meantime, he had told me before he left that he had syringes at his father’s house so he could inject.
I called the Cozmo support line and was shocked to no longer even hear, “Press 3 to deal with warranty issues”. There was just dial the extension or press 2 for clinical support. Eek!! The client list must be getting smaller. I finally spoke to the on-call answering service. I knew she was not a pump person. It took five spellings for her to type out “bolus”. It was frustrating but not her fault. I waited to get my call back from the clinical staff (last time I called there was only two of them left).
A woman called me within a few minutes. She quickly said that she would replace the pump. They only have one color–slate grey. They can only ship during office hours. The pump most likely would not go out until late tomorrow afternoon due to many downsizing issues. What can you do when they don’t make your pump anymore?
In the meantime, my son had called two more times. He had finally got his pump to bolus…oh and correct that high that had happened because he was eating cinnamon buns. Yes, I screamed. Yes, I reminded him to inject! Yes, I suggested that foods that were not high in fat and a carb counting nightmare would be the best to use until he had a fully functional pump. I then began the search for his old Cozmo 1700.
This was the pump that usually travels with him. This was the pump that I had thought about sending along (and normally do) “just in case”. This was the pump that was instead hidden somewhere in the depths of his room. When I finally found the lifesaving pump, I set about the task of reprogramming.
And here would be where further proof of me being a “think about it staller” came in. What were his basal rates? What were his carb to insulin rates? Heck, what was his insulin sensitivity these days? I had no idea! I searched for the log sheets from his last endo appointment. I tried to boot up my old computer that had his Cozmo program running. Neither would have the latest results but after numerous calls and texts, my son was no longer answering his phone or his messages. I had no way of getting the actual, recent rates. Before he left to go away I had thought, “I should write down all of his rates just in case. I should actually keep a book that has the latest changes in it at all times.” Of course, that is where it ended…as a thought.
The old pump is in the mail. Because of where my son is staying, the only courier service that has a slight chance of getting to him within 24 hours is through Canada Post. I am crossing my fingers that he gets it tomorrow, if not it will take until Monday. I am kicking myself for not sending it to someone at an address with higher odds of it arriving on Friday but you only think of these things once it is too late.
Lesson learned. This “think about it staller” will never let her son go anywhere without the spare pump. Said pump will have the latest rates programmed in before leaving the house. An updated list of basal, bolus and correction rates will be kept near to me…Hopefully!
|The old standby and one of the old Lean Green Pumping Machines|
My son got off of the plane, stumbled towards me and yawned. He had to be up at 6am and for a teen who likes to sleep until noon, this was just way too early!
After our initial chatter he turned to me and said “You will be happy to know that I now wake up from my lows.”
“You mean you woke up more than once?”
“Yeah, I wake up feeling starved. I hate it. It messes with my sleep.”
“Waking up is a good thing. The alternative is not waking up!”
“I know but it wrecks my sleep. I would rather have uninterrupted sleep.”
“That is not an option. Waking up is a great thing. I hope you continue it!”
“Sleep is a good thing. I would really rather just keep sleeping. That would be great.”
I shook my head and attempted to explain that an eternal sleep was not an ideal. My son grumbled some more. He is not nearly as enthused as his mother is. He understands my relief but yet another glitch in his life thanks to Diabetes is not at all welcome.
Oh well! Hopefully we are onto something that lasts!
“Your A1c is good. Your thyroid is fine. Your urine is high. Are you supposed to have a 24 hour urine collection done?” Our nurse asked us and both of us were unsure.
I was still trying to process. Did she say “your urine is high”? High in what? That isn’t good. Nothing is supposed to be high. Why was she asking about the 24 hour test? She did say high urine didn’t she?
My mind was reeling but I tried not to overly concern my son. He was less than worried. I was sure that there was not a problem but why did she say high?
What was high? Isn’t that protein levels? Isn’t that bad. Doesn’t that indicate kidney issues?
We have been dealing with diabetes for over 12 years but my son is only 14. There could not be a problem. I had to be over-reacting.
His A1c’s have always been great. There is no problem. It was just a fluke.
My son said “Didn’t Grandma die of kidney failure?”
Yes, but I explained that his previous doctor did not feel it was something for us to be concerned about.
Crap! I have tweeted. I have gone to my trusty CWD parents list and I have chatted with my peeps on Facebook. I am doing my best to go, “yep, it showed up but that doesn’t mean anything.” (and people are telling me that it does not mean a lot. Even the worse case it is still very treatable with modern medication).
But…Crap I hate this disease! I hate the stress. I hate the fact that I even have to consider that this could be a problem. My son is not yet 15 years old. His kidneys should be lovely, not constantly warding off potential danger because of Type 1 diabetes.
Okay, that is vented. I will get it out of my head and pray that they don’t call back looking for more urine either way. No matter what, at least we live in a time when doctors are able to be proactive about these things.
“Isn’t today the day that you need to change your site?”
“I don’t think so.”
“Let me see your pump. I am sure that you are due for a site change. If not today then you are overdue.”
Begrudgingly, my son handed me over his pump. The first thing I noticed was that his battery was stating that it was dying and almost dead. “You need to change your battery…like now. Its on its last legs and I was right! Your site change is today. Get the stuff out and get the site changed.”
My son grumbles and heads out of his room.
“What are you doing?”
“I need to get some insulin.”
“Holy cow, you are going for the full meal deal tonight! You have a dead battery, no insulin and a dead site!”
I”ts not a dead site. The site is fine.”
“Its due to be changed its a dead site. Time for a clean slate!”
Soon we had everything new but sadly he was still high during the night. Can’t win them all with Diabetes in the house!
I was talking to my mother the other day about my youngest son’s lapses in memory concerning his diabetes care. She told me that I was just worried because he will soon be an adult and I will lose all control. He will be on his own.
I laughed at her. I am not worried, I am downright terrified! I am not sure if the terror is magnified because my oldest son is now days away from being 18 and is currently planning his future with little input from Mom. Knowing that the first child has reached this stage means that the second one is only a few years behind in doing the same thing but the second child has a bit more baggage to consider.
I know in my head how much my youngest son has learned over the past few years. I see some small changes. I know that he will learn at his own pace and he will surprise me when need be. I also know that he will be a young man one day. He will drink. He will most likely do his best to ignore his diabetes. He has already stated that he would rather go back on injections than have to continue to visit a doctor on a regular basis to have prescriptions refilled. (I told him that he still had to go back once a year either way. He was not happy.)
He will most likely move to an area where I am not two minutes away. He sleeps through his lows. He answers his phone only when he feels like it. He has no interest in a CGM and I am not sure if I will be able to convince him of its benefits before he goes off on his own.
Its not just about control…being able to tell him to test or to bolus. Its also about complications. Its about not waking from a low. Its about not telling people around you about your diabetes and getting into trouble with no one to know the difference. Its the fact that he doesn’t wear his Medic Alert bracelet or necklace unless I tie it to him. The list goes on and my terror grows.
I can’t dwell on any of it. It is still a number of years away. I can only hope for the best. I must prepare myself to accept a happy medium and teach, teach, teach without coming across as preach, preach, preach. Let’s hope that there is enough wine and hair dye in the world to get me through! Why do I want a cure? To save myself from myself and this list of fears!
I have been trying to give my son space. My boys are growing up and I have to step back and allow them to fall on their own at times. I think that is the hardest part of being a parent thus far. The older they get, the less I can stop them from doing things that could harm them. I have to sit back and be ready to wipe their knees and help them back up again. Diabetes is no exception.
For almost 12 years, I have preached about testing, bolusing, counting carbs, carrying meters, carrying glucose and the list goes on. Now that my son is a teen, its important that he start doing many of these things on his own. It is also important that I don’t drone on and on so that he completely tunes me out. Finding that balance is hell!
Now that he is more self-sufficient, I don’t think as much about two hour after tests. I go to bed knowing that he will test and if he is not in what we have established as a “good” range, he will either get me up or handle it himself. I know that he always has his kit with him. I know that he usually has glucose somewhere in a pocket.
Being a teen, he can take advantage of that trust…and does. Last night I went through his meter. I knew that we were having a few issues with lows so I had let things go for a few days to see if there was a pattern or if it was human error. As I sat down with meter and paper, I found huge lapses in readings. I really didn’t know what to do.
The lapses were during the day. They were sometimes while he was with me. More often, they were while he was at school or with friends. My son is terribly private. I think he is dangerously private when it comes to diabetes. He doesn’t want his friends to really “see” his diabetes. He carries his meter but he leaves it in his pocket. He is great at detecting when he is out of range so he uses his internal compass to keep him out of trouble. At night, when he knows he will not wake up from a low, he makes sure that all tests are done.
I was proud of myself. I didn’t yell when I saw blank spaces of up to 10 hours with no readings. I wanted to scream but I also wanted to cry. I was failing. I was being too lax. I laid out some new ground rules for the next little while. He will do all of his tests at school. No exceptions. No excuses. He will text me those readings for the next week. I will text him to remind him (in case his pump is not enough of a reminder). If he fails to do this, he will lose all online privileges including his xBox.
I then told him that testing takes about 10 seconds total. It can be done quietly by heading into the washroom or sliding it out at his desk. He does not need to draw attention to himself. He can stay private but he MUST test. He is putting himself in danger. I told him that quietly testing himself will not draw nearly the attention that throwing up from being high or passing out from being low will. Those are big time attention getter’s. If he wants to avoid them happening in front of his friends then he must test.
I left it at that. I was sad. I was ashamed. How could I let him go so long with no tests? Because I believed him when he said he tested. I trusted that testing when he got up was routine.
I give him breaks in his care. I test for him. I bolus for him. I help him with carbs. I remind him. I back off and let him remember. I do not ask a reading before asking him how his day went.
Its a struggle. I know we are moving forward. I acknowledged how much I appreciate that he is bolusing. I told him that remembering to test before bed was super important and I was so glad that he was doing that.
He is now in class for the day. I have texted him asking for his reading. He hasn’t replied. I am hoping it will happen by their first break. I hate one step forward and then sliding back. I know…its called parenthood. I have to be glad that there is forward movement but… AAAAAAHHHHHHH!! Okay I feel better! Today is a fresh new day.
|I Googled “fear of slides” and this image popped up!|
“Its what your body needs for what you ate. If you are worried that its too much, you will find out when you test in a few hours.”
This was our conversation after breakfast the other morning. My son had had his usual stack of pancakes. His carb to insulin ratio in the early morning hours is something like one unit of insulin for every 5 grams of carbohydrates, so 100 grams of pancakes equals a LOT of insulin.
I never heard any complaints when he came home later that day suggesting that there was an error or he was low. I think he just realized that he uses way more insulin than he once did. He also eats WAY more food than he once did!
He is a teen. He began this journey when he was a toddler. Way back in time, he would not use 29 units of insulin in a day. When we first began pumping, I would fill his pump to about 150 units and still throw out insulin after a week.
I remember when his basal rates moved from .1 unit per hour to .5 and then 1.0 units. I was terrified. I had to keep reminding myself that this is what his body needs. If he had an internal pancreas, it would be pumping out gallons of insulin as well, its just that I would not have the visual to go with it.
As he grew, his carb to insulin ratios were no longer 1:40 or even 1:20. He now sees ratios of 1:5 to 1:15. Insulin sensitivity is not even a consideration any more but thankfully insulin resistance has not become as much of a problem as it could have been either.
When my son first began to see major changes in his insulin needs, I spoke up to friends and said I was concerned. A wonderful woman who lives with diabetes laughed at me and reminded me that my son was no longer two. He was becoming a man and that journey would be filled with many more empty insulin vials before we were through!
Last week was a bit of a muddle. I injured my foot and spent most of the week sitting on the couch going crazy. I hate being laid up but my foot was not happy if I used it. As I sat, self-absorbed and frustrated, I really did not pay a lot of attention to diabetes.
I yelled out the normal “Did you test?”. I asked what he bolused and helped to calculate meals. I hobbled out of bed each night to test. I failed at Reading Review Thursday and swore we would do it the next night, and the next night, and so on. I didn’t keep track of when the next site change was due and sadly trusted my 14 year old to actually pay attention to the alert on his pump. Yes, I majorly failed as a parent of a child with diabetes and diabetes got its revenge.
I finally looked at my son’s pump after a bolus and decided to check when the next site change was due. My son quickly grabbed his pump back and attempted to escape my limited grasp. I somehow hauled him back and reviewed the screens. The site change was FOUR days over due! I could not breathe. I wanted to beat him with his tubing. What was he thinking? Or not thinking? What the heck was I going to do to get him to remember??
I told him to change his site NOW! No games, no chats, no text. March his butt in his room and change that site before I put one in his tush! I was doing my best to breathe and allow him to live another day. He had been high for the past few nights…now I knew why.
I kicked myself. I should not have allowed things to slide. I should have been on top of things. I have been slack on a lot lately. I had to pull myself together! The next thing was to review the readings.
I had him bring out his meters and a sheet of paper. We were going to get down to brass tacks and review things.
“Mom, we really can’t make a lot of changes. My site was really old so the readings won’t be accurate.”
Thanks! I needed to be reminded of how we failed! I told him that I wanted to check things anyway. I looked at the first meter. It was his USB one. This meter is still so neat but I couldn’t remember how we reviewed readings without sticking it into a computer. Finally we figured it out and I began my review. I loved the highlighted highs and lows. The readings were everywhere but the display was so cool that I was oblivious to much else.
Next I moved onto the school meter. There were no readings. None. Nothing. Was he using a different meter? He brought out a second one. It had a few readings but something was seriously wrong. He swore he tested. I checked the dates on the meters. We have a real issue with One touch Mini’s changing the date and time. I know that they are supposed to be the most accurate meter on the market but this problem drives me insane.
The meter was off…like by years! It had the time as two hours later than it should be, the year was 2010 and the dates was October. How the heck was I supposed to go back and figure out what he really was and when? He had missed tests so I could not really even take three tests each day and guesstimate. I was frustrated.
We made a small change and I told him we were going to have to be way more on top of this. He had to test at school. We had a problem but I couldn’t solve it without the data of those tests.
As he left, I wanted to scream at myself. How could I be so slack? He is only 14 and he is a teen. He forgets. He gets lazy. If I was on top of this days ago, I would have information and would have known that the meters were off. I wanted to cry. I wanted to yell. I should have run over a meter. That just may have helped.
Instead, I promised myself that today will be better. I have circled his next site change on the calendar. I will try to be more proactive. I will work harder to be a better pancreas guide. I have to. We aren’t allowed to quit.
Does this happen in your house?
“What was your reading?”
“No, what was your reading?”
“I don’t know but it was good.”
Arggghhhh!! “Good is not a number. Good is a four letter word. Yes, “four” is a number but good does not necessarily mean “four”. “
At this point, my son usually looks at me like I am completely insane. If I am lucky he has figured out that I would like to hear a real blood glucose reading and not his generalization of his take on his reading.
“That is not good. That is actually a bit high since you just woke up and should technically be under 7.”
“I like it. Its good for me. I think 10 is a good number.”
“And that is why good is not a number. What you define as good and what I define as good are not the same.”
The teen years can be trying enough, but a teen with diabetes? Well he may well tip my sanity scale! Time to buy some more hair dye to cope with the dozen new grey hairs he just caused me.