Here's the latest on Cale. He is still getting daily injections. His pod sites are looking better, but there are a few that still need some healing, mainly his arms. That skin is the most sensitive. His back and stomach look great though!
Cale amazes me daily. He has yet to complain about getting the injections, aside from the occasional cold insulin. I keep waiting for the time to come when he turns down a snack because he will need a shot. It has been two weeks and I still haven't heard anything. He has also not asked to have the pod put back on. I am really very surprised. Although, he is really loving when he, Daddy and Ryan play rough and there is no question about where his pod is so that it doesn't get knocked off.
While the injections are making me think more than normal, what with the carb counting (which isn't new) but with the taking into consideration his BG before eating, the carbs, the way he reacts with the carbs he is eating and with his insulin to carb ratio for that time of the day, my head is spinning!! HOWEVER, his BG's have been pretty good!! Sure, there has been a high here and there, but he is waking up right on target!! For the most part, when he checks himself, he announces his number with what sounds like pride! Now, I know that whatever his BG is has nothing to do with him and what he is doing, but he seems very happy when he sees what they are!! Another highlite for Cale...he has started pulling up his own insulin into the syringes - correctly!! He keeps thinking he may give himself an injection, but he is just not there yet!! Baby steps!
Deep down, I am really hoping that he will be back on the pod soon. It is just so much easier for him and seems more "natural". But, we are still waiting for his sights to be completely clear and I am waiting for him to ask to start it up again. In the meantime, I have started stocking up on the new products that we will be trying in the hopes that they will help with the allergic reaction. Either keep your fingers crossed for him or pray that the pump people pull their heads out of their rears and figure out how to remove what is causing the reaction from the adhesive for so many people!!!!
It wasn't that bad!! The doctor, the nurse and the lady that shadows the doctor and writes up everything that he says (Isn't that great? I don't have to take notes!!) were really shocked at the pod sites and their appearance. I was given a couple of more tips to help with the reaction, so once he is totally "healed", we will try the pods again. His doctor was very understanding and concerned. He made sure to talk to Cale about what will happen if he is still reacting to the pods. He told him that he will have to go back to doing shots and Cale told him that he knew and was ok with it (makes you want to cry doesn't it??). He also told Cale (and I love his doctor for this) that what is happening is not his fault and that he didn't do anything wrong to make this happen.
So, another week or so on shots and then he would like to see his BG log. He will do any tweaking necessary and we are to let him know how if we are starting back on with the pods. Then, we just go back for his appointment in April (unless we have some pod issues). The highlight of that appointment is getting all of the doctor's paperwork completed for ADA Day Camp. It's in June and he is already excited about it!!!
Last time, Cale's A1C was 6.7, which thrilled me to no end. This time, it was 7.4. Not as bad as I thought it was going to be. I know, I was getting worked up too much and I need to relax. But when things take a turn and you don't know why or what really to do, your mind goes wild. Live and learn and start drinking!!!!!
Where do I start? Cale is doing injections today. Really kinda weird. I have to actually do the math in my head!!! I got too used to the pump giving me the suggested bolus!! At least I dusted some of the cobwebs from my brain!!!
As I said in the last update of my last post, I kept Cale home from school today because he had been over 350 since midnight with ketones. Slowly, but surely, we got him down with negative ketones. By 1:00 pm he was 115!!! BIG SIGH OF RELIEF!!!!
I am still worried and upset, but at least he is doing better!! Thank you all for the words of encouragement and for the suggestions. I am going to look into the ideas. I appreciate them so much! Keep an eye out for my post after Cale's appointment. I have a feeling it will be written through tears again! Wait a minute, I need to stay Positive!!!! I'm trying!!
Another update...per Chris' link, I have order a small bottle of mastisol. Fingers crossed and thank you!!!!
...and I have no idea what to do! Cale has an endo appointment on Wednesday (I am sooooo scared of this A1C, yet prepared for it all at the same time). I am 95% sure that he is going to have to go back to daily injections, at least for a few months. I know it isn't the end of the world to have to go back, but when we have come so far with the pod...his last A1C was 6.7!!! I cannot tell you how good that felt!! Makes all of the worry and the sleepless nights totally worth it!!!
However, we have been having nothing but trouble with the pump these last few months. Cale has developed an allergic reaction to the adhesive on the pods. Not a slight one, it can look really nasty. Here are two pictures to show just how bad it can get....
This is his arm
This is his leg.
And these marks last a long time. There was a point where we didn't have anywhere to put a new pod and had to wait for an area to clear up. I took the boys swimming at the YMCA last week and wanted to cry. He had these marks on the back of both arms, two marks on his back and two on his stomach. I was so thankful that his swim trunks are long and I couldn't see the marks on each of his legs. Why? Why? Why? I don't know what to do. We have tried several things including skin tac, tegaderm, IV3000, benedryl spray, what next??? We have even gone to changing the pod every two days instead of three hoping that it won't irritate the skin as much. The OmniPod people have been helpful, but I need more help. I need to meet with one of their specialists, with Cale, and really work on this. Did they change their adhesive? Do they have any more ideas? They have already given a few...I NEED MORE!!!! Let me rephrase that...CALE NEEDS MORE!!!! This is something that is affecting his whole life. It is a constant worry about the pod. Always checking to make sure that it isn't too irritated. Always thinking to himself "don't scratch, don't scratch".
Right after Christmas, we went away for a few days and I took him completely off the Pod for the time we were away. This gave his skin 3 days to heal and there wasn't the worry of allergic reaction while we were supposed to be having a good time. He was really, really good about having to have shots again. I was so proud of him (AND he has also told me that he will be ok with going back to shots if that is what the Doctor wants him to do)! For an 8 year old, he is really mature about all of this. Sure, he has his moments. Who could blame him? I have a lot of moments and while I am "living" with diabetes, I am not living with diabetes. This is his life and to put it mildly...IT SUCKS RIGHT NOW!!!! But, I have to try and hide all of my frustrations and put on a positive aire for Cale. Like I said, right now, he is taking it so much better than I am. He has to deal with the reaction daily and he is doing so well with it. He is an amazing boy!!
I think I have rambled enough. I probably don't make total sense, but I had to sit down tonight and just get it off my chest. The tears are now dry and I will get thinking positively and wait for Wednesday. It's all I can do!
3:30 am update...thinking positively is not working!! Whatever new junk I tried last night to supply a barrior between Cale's skin and the pod and his skin has caused the adhesive to slide off! This in turn caused the cannula to come out while Cale was moving in his sleep. BG 383 and moderate ketones!!! I gave him an injection and pulled the pod off. Get to start all over again in the morning!!! Here is some positive thinking...I AM POSITIVE THAT I HATE DIABETES!!!! Now let's see if I can get back to sleep...doubtful!!!
7:00 am update...Cale is not going to school today. I can't get his BG below 350 and he still has ketones!!! Just gave him 5.5 units of insulin via syringe and 11 units of Lantis. He is off the pod for at least today! Calling the doctor this morning if he doesn't go down. THIS SUCKS!!!!
On New Year's Eve, we went over to our friends, Gordy & Susan's house. We actually got there in the late afternoon and were able to suit up and play some pond hockey. This was Ryan's first time skating outside and it was actually the exact same place we took Cale for his first time when he was about 3 years old. Turns out, THEY LOVED IT (and when I mean they, I am talking about Pat, Cale and Ryan - I stayed nice and warm in the running car taking pictures)!!! They cannot wait to go back! If they ALL have their way, they will be going back every Sunday (starting next week, I vetoed skating in below zero temps!) to skate some more! I am all for it...mainly because I don't have to participate. Stay home, keep warm, enjoy silence. Good enough for me!!!
Doesn't he look like a pro?? Daddy made him suit all the way up!!!
Cale loved it and he is really good!
His blood sugars didn't...they dropped. We have learned, rather quickly, that his blood sugars drop FAST when he is skating.
Pat had fun...but he paid for it on Friday!
We stayed all night at their house and rang in 2010! The boys had so much fun. Cale ended up with a little bitty four year old girl attached to him the entire night. Turns out that their neighbor's daughter, who is 4 but actually looks about 2, loved him. They adopted her from China and she is so stinking adorable!! Cale actually told me that he wanted to take her home. Her mom wanted to take Cale home!
So the boys played, Pat hung out with the guys in the garage and I caught up on A LOT of gossip with the chicks. Good times!
I am a mother of two boys, Cale, 11 (my Type 1 - dx 8/6/07 - was using the OmniPod, but because of an allergic reaction, is back on MDI's) and Ryan, 8. I have been married to Pat for 12 years (WOW!!). I am currently a stay-at-home mom, part endocronogist/part nurse, full time pancreas, driver, cook, maid, accountant (not a good one!), activites director, etc....
This blog is here not only to keep our family that live out of town in the "loop" but I also come here when I need to "let it all out" about Diabetes and it's affect on not only my son, but on life in general.