If ya'll haven't noticed caring for J.J. is a wild roller coaster ride. Highs, lows, twists, turns, loop-d-loops. Just looking back over the blog entries helped me "see" the ride we're on. Seems like one day we're up, the next down.
I just want to thank everyone who is staying on the ride with us!! You know who you are and I appreciate having the company.....granted you have the privilege of getting off the ride...I still appreciate it when you're with us in spirit and in prayers. Means the world to us. All you D-bloggers out there....thanks for the encouragement as well!! What would I do without the internet!!?
Today is an UP day!! After Saturday night's highs, being up til the wee hours of Sunday morning, nearly chopping hubby's head off in church(brought on by the stress of J.J. still in the 400's!), taking a long nap, then loving hubby to the Nth degree(a nap was much needed!), finally seeing some decent numbers on Monday, and today getting a phone call from our CDE.......phew....today is much better! ROLLER COASTER!!!
I called our CDE yesterday after reading some of the comments to my blog....again....thanks much to the D-Bloggers out there. I had to admit I haven't run a lot of what was happening by our CDE. Also, yesterday I decided to download our meters into the computer and see if I could analyze the numbers a bit. Right away I noticed I saw a few trouble areas, plus the line graph revealed that he was so stable during the week, but the weekends were CRAZY!! This reassured me that the pump is in fine working order....(This is a contention with hubby....he automatically thinks the pump is failing, while I on the other hand have about 10 other things I think of before I think the motor is going bad!!...Love ya, hon!!:)
Our CDE was able to help explain some of the past two weekend's situations. For one she said we may NEVER know WHY he went as high as he did. We could get 6 different opinions but all of them would still only be hypotheses'--nothing concrete. YAY!! I can stop racking my head against the wall!!(Not literally....although seriously was contemplating it!)
She did help explain why the highs were taking so long to come down. Seems that once he's that high he is resistant to insulin. Also, trying to dose with the pump for those highs will take longer. They don't know why the pump absorption rate is slower, but that's what they've seen in practical experience. So she said a strategy a lot of parents use is once they reach the 300's or 400's they automatically correct with a syringe until they see the numbers stabilize, then they check to make sure basals are working etc. Doesn't mean we don't check the obvious tubing issues, etc....but if a visual is not showing any signs of problems with the pump then don't automatically assume it's the pump. Sometimes it is the set, tubing etc, but in both cases this month he was getting insulin fine by the pump.
She also gave us a few things to try for J.J.'s sites. We believe he is allergic or greatly irritated by the adhesives on the infusion set. At times the sets have itched so bad he rips them off. At other times it's after I take them off he itches to the point that they bleed. It's mainly where the adhesive is, not where the cannula enters the skin. So we're going to try a few things and if they don't work I'll have to call her back. I'm assuming we'll have to try a different infusion set. I'm not sure how far we go before it really isn't benefiting him to be on the pump. For now we'll hope the simple answers work.
It was also a good call, not only because we got a few things figured out, but because she complimented me, inadvertently. She said a few things about my character that lend themselves well to the care of J.J. that I've often thought of as negatives. So while my detail oriented, critical thinking, analyzing mind may drive everyone else crazy it seems to be working well in caring for my son. Thank-you Lord!:-)
So if today is UP.....does it mean tomorrow will be down?? Maybe if I close my eyes and scream really loud with my hands in the air on the way down it will feel better!........hmmmmm....I'll have to try it!