Diabetes is.....

A pain in the ass... There I've said it. I try very hard to be optimistic, and opened minded about everything diabetes throws our way. But every once in a while we have nights like tonight that just leave me wanting to take a break from Diabetes and give Clifford some well deserved vacation time from D!

3 site changes, 1st didn't stick, 2nd he said was hurting him, checked and it looked as if it wasn't sticking right so I pulled it (at bedtime no less), bent cannula with blood in it. Stupid diabetes. Before pulling the site, he was high 289 (no ketones though so thought just a fluke) apparently insulin definitely went through with the bolus we gave because he was 65 30 mins later... Really 65! Ever have one of those moments you just want to go back to bed and start the day all over? Yeah that's diabetes

Diabetes is...

• Confusion
• Exhaustion
• Overwhelming
• Heartbreaking
• Scary
• Impossible
• A moocher
• Nagging
• Never ending
• Overbearing
• Emotional
• Gut wrenching
• Guilt
• Sadness
• Shame

But diabetes is also

• A smile
• A hug
• A kiss
• Compliments
• Friends
• Family
• Love
• Understanding
• Compassion
• Joy
• Strength
• And so much more

Yeah once in awhile you have a bad day like our day today and get pissed off at diabetes. But there's always tomorrow, the sun will be shining, and you're given a chance to start all over. Diabetes never place fair, it never sleeps ( I really wish I had it's energy), and it's just a thorn in your side that won't go away. But like a thorn that causing pain and hurt you tend to get used to it being there. It' will never get any easier, but it will get better.

It's all about the basals....

The last few days have been nothing short of "interesting".... Tuesday evening Clifford has low after low, after low, starting at dinner with a 58 that he didn't feel. We couldn't get him up for anything, ended up having to suspend his pump until he finally got up to 98. At bedtime he was now a nice 105... But to me I expected some rebound highs from the lows that couldn't be brought up. And he got them 316 at 12, then 215 at 3am. At 5:15 I decided to test to see what was going on and he was 432?? Checked ketones 0.4 (okay well now that is not good since there are ketones)... Rechecked at 6:15 he was 319 still 0.4 ketones. Then he woke up at 6:30 saying he didn't feel good at all. We checked 419 0.8 ketones... (now that tells me something isn't right, tried to call his endo, but they told me that no one came in till 7am??? Whatever, after getting off that phone call not even 5-7 mins later he was 535 and 1.2 ketones.

Clifford at this time said you could tell I was serious because I took my robe off, went running for a syringe (on the shelf, don't keep them out anymore b/c of pumping), came in did some quick math, calculated 3.6 for correction via syringe, corrected, and pulled the site. Wish I would have taken a picture of it now. At first glance didn't seem too bad, but a closer look showed it was slighty askew and there was blood in the cannula. (sneaky little sucker, somewhere between 3 and 5 it did this) All was well with a correction shot, and a new site change. Called his doctors and told them I was keeping him home for monitoring. Took until about 3pm for him to get down under 200s but he did, and eventually was 111 for dinner time.

That was our first experience how everything can go downhill fast if the pump is not working properly. As for the title of this post, we're trying to figure out his basals, should it be 0.3 at night or 0.35, or 0.2 during the day or 0.3.. Honestly it's giving me a bit of a headache, but I know once they are figured out it will be smooth sailing... until he grows at least.

Pumping Update-How's it going?

We've technically have been pumping for 11 days now, including our 5 days of saline. We are one week shy of actually pumping "live" on insulin. So you might ask and wonder "how's it going"... For the most part everything is going great. The first three days it was like his pancreas woke up and decided that it no longer wanted to be lazy, but the actuality of it was we had a new "robotic" pancreas to help us with this. His numbers were nothing short of beautiful, with exception to 3 lows in the 50s each day. Then the weekend came along, and he headed to his dad's and his basal rate for 7am to 6pm was changed from 0.3 to 0.2...

That and coupled with the fact that the beautiful weather we were experiencing decided to die out on us as well, he started having a few "highs", boy how I hated to see those highs mixed in with the "beautiful numbers". Sunday rolled around, he was high 306 2.5 hours after eating dinner at his dad's and getting a site change earlier in the day. I checked the tubing, checked the site, all looked well, so he had a snack, I corrected and sent him outside to "work off" the high as I call it. An hour later after some hard playing he was 72... Quite a drop for him, but at least we ruled out a site problem. I was beginning to contemplate a site change before bedtime if he was still high. Up until bedtime I couldn't seem to get him higher than 86 (all that great exercise you know) this lead me to believe we would be seeing some delayed lows during the night. When I checked him at 10:30 however he shot right back up to 316. Honestly that absolutely made no sense to me, so I washed his fingers and retested. Still high 309..... SO I made the decision to correct. I can see letting a lower 200s, or mid 200s ride until the midnight check, but I didn't like seeing him over 300, not with his new "robot pancreas". But with it being the first correction at night (YIKES), and knowing his past experience with a lot of humalog at night dropping him. I backed off the 1.7 units the pump recommended and went with 1 unit.. I made sure to retest within and hour and a half to see just how much he was coming down. He was showing 285, then at 3am he was 256.. At wake up he was 230, still high but much better than the 300s. School went good for the most part except when snack time came along and he was 295! Tested him after school, for ketones too, just to be sure. No ketones (okay sites good I thought), this time no correction (too close to dinner) just sent him outside to run off the high again. It worked he came down to 77. Now dinner time rolled around, and I honestly was too tired to prepare anything wonderful so we had PIZZA! Pizza always makes me nervous because of the fat and it's ability to make him higher for a long time. Thankfully at bedtime he was 86(again), do you see where I'm going with this now?

At 10:30 he was 275, 12:30 he was over 300 (again) so corrected him again, this time I got a little more comfortable and gave him 1.2 units (pump suggested 1.6). 3am he was still in the 200s (can't remember the number right now) but at wakeup today he was 183 (much better, still above target but under 200).. A call into his CDE and she adjusted his basals for midnight increased from 0.3 to 0.35, and at 6pm increased 0.3 to 0.35. Here's hoping this helps. I however have a feeling that once the weekend rolls around and he is home and the weather is nicer that he will get back into range and possibly lower. Got to love diabetes. Definitely no consistency ever!

How do you feel?- Sleeping through an alarm

How do you feel when you sleep through an alarm for a nighttime blood sugar check? Last night I didn't hear my alarm at 12 and woke up at 12:30 out of the blue to test him (thankfully still early enough) but as I ran upstairs frantically to get him tested the only "feelings" that went through my mind were "fearful and guilty".

I mean it's my job to make sure I get him tested overnight to ensure all is well in blood sugar land, to me my son's life depends on it. So you can see how the guilt added up. Thankfully I have this internal clock that will not let me sleep for too long in one stretch and woke up in time to check him. He was, I am happy to report at 140. But from my point of view it was very scary for the fact he was 108 at 10pm, and I gave him 15grams to pull him up, 108 to me is hit or miss and could go either way in 2 hours. So not waking at the midnight alarm had me running like a crazy lady upstairs as if I was fighting time to get to him.

A change in the life ...

So all along our journey in getting to having Clifford on the insulin pump I pictured a jump back to diagnosis time when he first started. And in a sense it is. There is so much new things to learn, tweaking like crazy to his ratios and basals that will go on these first few weeks to a month after starting on insulin. As we move forward and are one day out to going live on insulin, I am not as nervous as I thought I would be. I have become comfortable with the features of the pump that I've been taught. In addition I've gone and done additional training and courses that Medtronic offers online. It's really quite nice how they have their education site set up with practice quizzes at the end. I think their training process on the site has made me much more comfortable with everything.

Now one day before I have to make sure all information is ready to go when we leave bright and early at the crack of dawn tomorrow. This includes a 3 day log or diet sheets of what he is eating to get an idea of how many carbs a day he has. I'm not really sure what the average is for kids his age but Clifford's average has been between 218 and 270 grams a day. And the funny thing about that all is it might seem like a crazy amount. However if you were to review his sheet you'd see he eats a lot of fresh fruit and vegetables. He is following a gluten free diet for the most part and eats really healthy. I kept thinking the doctors and educators may look at his sheets and say "um yeah sure this is what you are feeding him". In addition to these sheets I've made sure to have an updated DMMP (Diabetes Medical Management Plan) printed out, filled out, signed, and ready to go for our endo's signature for the school now that he is on the pump. That is one thing to remember if you are moving forward from MDI's to the pump, make sure your DMMP, is updated to include your pumping information. Tonight I will be reviewing some more information, and uploading his numbers for the past few days that we've been on the pump to carelink, and printing out our charts just to have because you never know. Clifford is excited that today will be his last day at school where he gets injections, it's like a new normal, or life is starting to unfold for him and he's ready. We've already experienced one bad site change due to the site not sticking properly and locking in place. So now he understands that not all the time will it go perfectly.

He got as brave today as to go in and lock his pump on his own. Then I asked what he was doing, he goes "I've seen you do it all the time so I locked it". That boy, he is smart and will pick up on it very easily. However I've told him to give it some time before he starts wanting to press buttons while we're on insulin so we all get used to it and in time he can start bolusing himself too. So tomorrow or Thursday depending on what time we get home. I am hoping to have an updated picture and our pump story about going live on insulin and moving forward to our new normal.

The overnight fear, and the rejoice of the morning

I have to admit that I despise going to sleep, not because I don't like to sleep, I love my sleep (what little I do get of it). But I despise the night time because that is the most uncontrolled environment for diabetes. Every day we battle controlling this beast, but the night time we have limited access. Yeah we set alarms and test at 12 then again at 3am and sometimes again at 5am. But really it's a very scary situation.

During the day I can see Clifford up and playing. I can see the look in his eye's if he goes low. You know that glazed over look that seems to stare right through you? Yeah that one, I can see it, and can catch that low even if he doesn't feel it. I can see if he isn't acting quite like himself and prompt him to test himself, and catch a low that he might have missed as well. At night time however I cannot see either of these things. I can only rely on my testing ability while half asleep with one eye open, and my D mom instincts that wake me out of a dead sleep at an unscheduled time to test.

So every morning when he wakes up and begins to walk down the stairs I say a little prayer to God and thank him for waking my son up this morning. Every morning no matter how tired or grumpy I am is a little brighter for the fact that Clifford woke up, and made it through another night of dealing with diabetes.

I have to say I am jealous of parents that are able to put their kids down to bed at night, give hugs and kisses, tuck them in with their favorite stuffed buddies, and think no further as to what the night might hold for them. Parent's that get awoken from the occasional cries of their child from a nightmare they had. A cry or scream in the middle of the night from Clifford sends chills down my spine that I do not wish for anyone to experience. In those few seconds I seem to gather super human speed and rush up to his room in the matter of seconds for fear that he is dropping low.

So for those of you that have the same fears I do every night as we lay our little ones down to bed, I want to let you know you are not alone and I understand. I understand the joy in your heart when morning comes and you walk into their room and stand for a few seconds to wait to see if they are breathing, and then they do. I understand the fear you go to bed with every night as you tuck them in. I understand the sleep deprivation and being fueled by caffeine alone. You are not alone, I understand!

To those that do not have a child with diabetes, cherish the moments that you put your child down to bed at night and have no worries about what the night holds. These moments are priceless, believe me I would give anything to have them back again.

Pumping!

It's official, Clifford has become a pumper... Of saline right now, but still pumping.... Wednesday he goes live on insulin. It is surprising just how easy the whole process is. We are bolusing at meals and still giving shots, but the pump calculates everything in there, it will show you how much to cover the carbs, and how much correction. We had a 2 hour class to learn to fill the reservoir, place on his infusion set, set basals, and how to bolus.

Right now Clifford's basals are set at 0.3 per hour for a TTD of 7.2 units. This is pretty much how much Lantus he was getting daily. However this may change because with the pump since it's subcutaneous it absorbs better than injections. It may seem like a lot of information in the beginning, but when you are there and actually have to bolus it's really quite simple. The pump did all the work in calculating the dosage for me this morning as well for what I gave him via syringe. It's nice to have another "brain" helping along the way. I think we will enjoy having the pump very much. He is scheduled to have an infusion set change today which Chad is going to do (Yay! to him), then again on Monday, and then on Wednesday (day we go live on insulin)... We are only 4 short days away from putting injections in the past, unless we need them in an emergency situation.

Clifford is slowly adjusting to having it attached to him. He couldn't figure out how to change out of his pants into pjs, but we figured a solution out for that. Then he was concerned about playing with the twins and that they would pull on it. But they left it alone and he got to play like normal. So for now this new norm is good. We'll be even more diligent the first few weeks of pumping insulin and perhaps a bit more sleepy but it will all be worth it.

The start of something new

I've taken a brief hiatus for a few days from blogging only because I've been a bit busy. Diabetes hasn't really given us too much of a problem, numbers for the most part have been pretty good, with few lows and highs. Night time numbers have done pretty good as well, so I cannot complain in the Diabetes department. We've recently switched to a new way of eating that is overall benefiting everyone. I've probably mentioned a few times in my blog or via facebook, but Chad and the twins are Lactose Intolerant, so they follow along with a Lactose free diet. There have also been tummy issues that have been plaguing most everyone in the home, and not just from an illness. So after talking about it and the benefits, we've started going with a gluten free diet as well. I have to say figuring out how to cook gluten free /lactose free is pretty tricky. I'm still new to it and slowly getting the hang of it. I'm sure in no time it will become second nature as well.

The grocery store was interesting yesterday too, trying to figure out what to get and definitely reading more of the labels than just how many carbs are in it. I spent a total about 25 minutes in the fresh foods section, getting many fresh veggies and fruits as well as some new ones to try, asparagus and brussel sprouts (not sure about these but Mom ensures me they are good with her recipe). The good news in all of this change in eating is that everyone is feeling better. It's been about a week now since we switched, there is no more complaints of tummy aches from Clifford, and I have to say I feel a bit better as well. I haven't had as many migraines as I was getting accustomed to, which was daily. In all I believe I only had 1 this week.

Clifford even packed his lunch for school today which was very impressive that he had a steak salad (spinach, not lettuce), with cherry tomatoes, and cucumbers. He had strawberries and blueberries as a treat, as well as an apple sliced, and the squeeze type of apple/strawberry sauce (both gluten and dairy free btw). And as a healthier option for his snack he had Buddy Fruits, fruit bites , they look like fruit snacks but contain only fruit ingredients and nothing else. They are dairy free as well, and the site stated gluten free, but further investigation on the package shows that they may contain traces of wheat starch.

So I as I stated we are only a week in, but I will be sure to keep everyone updated on how we are feeling as we embark on this new healthier way of eating from here on out. On a side note we are now only 7 days away from pumping.

A day for Praying for a miracle

I am taking the time today to direct away from anything diabetes related. A big advocate and voice in the DOC needs our help in praying for a miracle for her husband and family. Ryan and Meri Schuhmacher have been married for 19 years now. They have 4 sons ranging in ages from 8 to 16. Three of their boys have Type 1 diabetes like Clifford. We connected online due to our connection with diabetes, and I have read many blog posts from Meri that have helped tremendously throughout our dealing with Type 1. On February 26, 2012, her husband Ryan was taken to the ER for an evaluation of right sided leg numbness and heaviness. The head CT discovered that he has 6 brain tumors. Additional testing revealed tumors in his lungs and abdomen as well. Ryan is only 40 years old.

Their road ahead will be long and rocky, as it will be filled with radiation and new drugs that have just been recently approved by the FDA. It will be filled with exhausting emotions, moments of fear, and endless questions. But it will also be filled with hope, and faith beyond measure. The family is asking today March 4th that you join them in time of prayer for a miracle. I am asking if you could take a small moment of your day today to help pray for them all.

For with God nothing will be impossible Luke 1:37

My thoughts and prayers are with Meri, Ryan and their boys today, please join me in this also.

For a further look at Meri's blog please go to:

http://www.ourdiabeticlife.com/

Wordless Saturday

So you have Diabetes.... Now what???

Today is Dr. Seuss's birthday, the kids have been celebrating this all week long with various things at school, and today in celebration we had "Green Eggs and Ham" for breakfast. So in light of Dr. Seuss, I thought it would be fitting to find a quote from him that fits into our lives with diabetes, and I've found the perfect one.

"Don't cry because it's over, Smile because it happened"... You may be wondering how this fits into diabetes. Well think of it this way. We all look back on pictures of times before diagnosis, and if you are like me then chances are you have a hard time viewing these pictures. The "pre D" pictures. They depict a carefree life, pictures of countless amount of carbs being eaten without a care to count how many. Pictures of a sweet little sleeping face without the fear of death during sleep. They are hard pictures to look back on, and often the ones closer to diagnosis, I find myself trying to pick out signs that I "SHOULD HAVE" seen. But in order to move forward with your new life and diabetes you have to figure out a good balance of things. This involves letting go of the guilt of not catching it sooner, and thinking about the memories that you that you often block because you you don't want to think back on simply because it's too hard to do so. So from here on out I challenge you to think of "Pre D" life according to Dr. Seuss. Don't cry because it's over, smile because it happened.

The most important thing you can do for yourself and your family after a diagnosis of diabetes, (New or old) is to move forward, and choose to be happy. Yes we still live in fear of what D will do, but it doesn't have to run out lives. If you are a parent, like myself to a child with diabetes, I know how hard it is to not give into that fear, to not let D take over. But in order to show our children that living with diabetes isn't the end of their life, we must accept that it happened, and it's here. We must show them that even though they have diabetes, diabetes doesn't have them.

So instead of looking back on a "Pre D" picture today and crying for the carefree childhood lost, smile because they had a chance to experience it, even as brief as it may have been. Don't let diabetes have more control in your life than it already has....

Hope is what we have!

Today, March 1st, 2012 is a Day for Hope around the Diabetes Online Community (DOC). When you live with a chronic illness, and invisible one at that it can get frustrating and overwhelming. The word "cure" has been thrown around for many, many years now when
others before were diagnosed. While it can get upsetting to see that today we do not have one yet, we don't give up, and have "HOPE".

I will be honest there are times I shrug my shoulders in defeat that we may never see one, but deep down I still have Hope that we will. When Clifford's bg#'s are on a roller coaster of a ride, I usually want to scream, but in it all I still have hope. I really don't think I could get through all this without it. When you have hope you see a light at the end of this long dark tunnel you travel through every day. If I didn't have hope I would feel as we/ he is stuck in this dark tunnel for the rest of his life, and that's just too depressing to think about.

I have hope that there is a greater reason that God chose my son and many other great children and adults to get this disease. There has to be, and that's why we have hope. We are closer today to a cure than we were yesterday. It's difficult enough to manage a disease that doesn't play by any rules to NOT have hope. You must stay positive and know there is a light at the end of the dark tunnel known as diabetes....

So if you are reading this, join me today by writing "HOPE" on your hand for those that you know and love suffering in that dark tunnel, for yourself, or just because you too have hope that those suffering will find their light.