Sometimes... it's sooo frustrating

Parents
1

Hi. I'm glad I have a spot to post, as I know that you can all relate. 

My son Jon is ten and has had T1 for two years. He's been an OmniPod user for about a year. Jon loves playing sports, and the thought of tubes made absolutely no sense to him. (It didn't hurt that one of his favorite counselors at Camp Joslin in Massachusetts had an OmniPod!)

Jon gets so stressed every time he needs to change his Pod. I don't blame him. He never knows if it's going to hurt, or how much it will hurt. Certain rituals have been ongoing, so that he feels he has some control over the situation. He always get a hard candy. The TV - the great distractor - is always on. Et Cetera. 

Last night was an exceptional bummer, as his endo told him to turn around the Pod - so that the infusion site was more toward his side. He usually puts the Pod on either side of his belly button, or his backside. He was really stressed because he didn't think he had enough fat there, but the endo said he did. I saw Jon pinch, and I felt there was enough. It took the longest time until he was ready to hit the start button on his PDM. He finally did it. The unknown countdown began. There are times when after the CLICK he says, "Good." This was not one of those times. He was in nasty pain that even a Bruins game in the Eastern Conference Finals of the NHL couldn't pull him out of despair. Yes... eventually he was able to focus on that great distractor/hypnotizer, but it was a real bummer. My heart went out for my child. And inside, I was so, so mad.

Today we went to an outdoor batting cage to play some baseball together. On his first swing, his Pod jabbed him. The tough kid kept up his swings... and I kept up my pitches. We took a break. "We're gonna have to change it later today, you know. You have a game tonight, and you can't play while you're hurting. You'll want to do your best, and you won't be able." No way. That wasn't happening. I've seen him limp through basketball games rather than prematurely change a Pod. Once we got home, my wife Linda took over and she helped Jon change his Pod to a often used, more "comfortable" site.

Yes... I know. We've come a long way, baby. The fact that he's on a pump... especially one that lets him jump in a pool without thinking twice, is awesome. Meal plans and shots were a drag. But I get crushed when I see him hurting. 

My son Jon is one heck of a brave boy. I just wish he could prove his bravery in a different way.

If you got this far, I thank you for reading my words. I wonder how others deal with sites.

I thank you.

Respectfully,

Brad

2

I'm 16, and I was diagnosed at 10. I know I'm not a parent, but I can see your point of view. I was never compfortable to give anything in my hip/back area because I didn't have the fat there even though the docs said I should be fine. I will give you a warning: as a girl, my stomach is something I pay a lot of attention to. I came off my pump after 9 months on it because it didn't fit my lifestyle at that point (I do rodeos). I'm just NOW, after two years of being off of it have lost most of the scar tissue in my stomach. Try to get him to move his sites around to any where on his legs or back, I know I really regretted not moving from my "favorite spot" when I had my pump.

3

What your son is experiencing is pretty common.  I've pumped for 9 years and still kind of dread having to change the infusion site.  Keep in mind that sometimes if the site hurts at first, the pain fades away after a few minutes.  It it still really hurts an hour later then change it.  

You're smart to use distractions like television.  That helps me.  I'm also a Christian and I pray each time before I insert a new site.  It helps a lot.  

Like Alyssa said, it's important to rotate sites and not just use the easy ones.  The first couple years on a pump I overused my stomach and it become too tender to use for a couple of years.  Just now starting to be able to try those spots again.  Know that the difficulty you're experiencing won't last forever.  I've noticed that struggling to find a pump infusion site or having painful finger pokes seems to come and go.  It reminds me of how marriage or parenting can be really easy sometimes and a real struggle at other times.  Life is always changing and if you hang in there you'll be okay.

Take care.

-Jenna

4

My 10 year old has been pumping for 6 months. She will only let us use her belly. We have managed to get her to use the lower back and hip the last couple weeks. When we first started those sites were painful. She would really cry and she has been pretty tough through all this. Her belly is looking rough now after so little time. I wonder if there is something we can do to help it heal.