Sunday, January 10, 2010

I have hit a dead end....

...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!!!!


phonelady said...

some ppl cant wear the pump because of this reason and I am also allergic and kind of glad I am cause I cannot afford a pump, Im glad your sons skin healed . yeah it would be kind of depressing to go back to shots after the pump . kids are troopers as I am sure you know . Have a blessed day .

Shannon said...

OH NO!!! That looks horrible!

I hope things turn out.....I HATE DIABETES TOO! Just so you know! (((HUGS)))

Christine said...

Cale is a trooper and you are too!

I did a little research. I don't know if it would help considering my knowledge is limited on the subject. I found this forum where some people are talking about allergic reactions with their Omnipod.

They mention securing it with either Mastisol or Skin Tac. Just thought I would pass it along.

Hang in there mama!

:) Tracie said...

You stopped crying and I started.

I can't believe those rash areas! I thought for sure the IV3000 would be the way out, dammit!

Did you just die when he said he'd be ok going back to shots if the Dr. said so?!? He's the BRAVEST boy I know!

I hope the Endo will come up with something, if not but to put him back on injections until he can fully heal, and in the meantime maybe OmniPod can come up with something better. I've heard about reactions, but yikes!

I'm so sorry you guys are going through this! I'll see what I can dig up, if anything.

Hang in there, this too shall pass.