Thursday, July 30, 2009

Oh me Oh's been awhile!!

I started a long wordy blog post this evening.....thinking I really had time to do this...but I don't so.... here is the short version.

Endo appt. 3 months ago.....

A1C..... 7.5....yes steadily rising!

LOTS of LOWS!! He wasn't feeling them until he hit 30's. NOT GOOD. Endo wanted to see us keep him high for a month at least. Told us not to worry about the next A1C....YEAH RIGHT!!!

Had his yearly blood draw....did AWESOME!! And results were all good. The not so good thing is that our insurance renegotiated rates with the clinic so we ended up paying close to $400 for those tests and found out the rest of the year we'd be paying near $70 for each A1C!!!! NOT GOOD!!

Dermatitis...he began developing really bad rashes where his pump sits on his stomach at night.....due to the fact that he goes high overnight.....thus peeing more.

Our endo suggested trying a professional type continuous glucose system for a few nights to see if we can pinpoint exact times he skyrockets. But finances halted us from pursuing that any further.

Endo appt. this week......

A1C....8.2.....UGH!!!!!!!!!!!! Endo is fine with it since we are trying to get J.J. to feel his lows....but it made me sick to my stomach.

Lows.....he's feeling them in the 50's now, but endo would like to see 60's and 70's!!!

Dermatitis.....still a problem. Endo suggested switching from a pull-up to a which J.J. laughed a nervous laugh....and to which my Mama heart broke.....the thought of putting my 6 year old BACK in diapers is just plain SAD to me!! Anyway.....her reasoning is that diapers are meant to wick the moisture away from the body while pull-ups are meant to have the child feel the moisture so they can be potty trained. His moisture problem has to do with the diabetes (I'll explain in a sec.) we aren't trying to get him to potty fact he sleeps through just about everything....including when he's low and we have to give him something to drink!!!!

Night time highs......we've watched this happen for such a long time now.......J.J. will come down beautifully from his dinner dose, we put him to bed and WHAMMO.....TO THE MOON!!! He can sometimes jump nearly 300 in an hour!!! We've tried many different food/exercise/bolus/basal options....but like with most diabetes....there is no consistancy!!! Endo said that he is just one of those kids that it happens to......not every parent has to deal with this....we must be the lucky ones!!

The obvious question educated people are asking right now is "So....why don't you just increase his basals to match this trend to skyrocket?" Ahhhhh.....easier said than done. The problem is J.J.'s insulin sensativity. We can increase his basals, and we have in the past, but then we are risking lows.....which we saw when we increased even by .05 increments!! Often we are chasing a high all night, and then risk the crash in the morning. My wonderful husband gets up 2-3 times a night trying to keep the highs in check. He wanted to stop after we talked to another type 1 mom who said they never got up in the night with their daughter!! But I convinced him (and thankfully the endo concured) that everyone's diabetes is different.....we can't go off of what this other person is doing.....J.J. is unique and so is his diabetes.

The solution at this point is to try increase his basal again.....TRY it ONE MORE TIME!! See if we can get him to stay a bit steadier.....but it really looks like we're in for a long battle with this.

What we've learned this summer:

90 degree weather + pump=HIGH's from insulin being destroyed in the heat

rolling down hills=breakage of pump clips

sliding (falling) down slides=pump being jammed into side and causing an injury

....if you remember to bring extra insulin in case of emergency....don't forget the syringes!!!!

slushies or freezies=REALLY high carbs!!!(But they're so cheap here...89 cents for 44 oz!!)

LOT 8----we're sitting on 3 boxes .....hmmmmm!!!

....situations with a lot of candy are way too much pressure for a little kid with diabetes....J.J. succumbed to "sneaking" after a couple incidences.....SAD!!!

.....some people get really squeamish if you do a blood check in front of them!!! HAAAAHAAA!!!

....remember to bring a pump clip if he's wearing a pump-pack with belted pants and wants to change later into elastic type shorts!!

......the free shake they gave away at the end of the fair=132 carbs & causes little boys to get bad tummy aches!!!


.....if a person starts telling you about someone they know that has or had diabetes and wants to add a "yeah but" (like "yeah but he has kidney disease" or "yeah but he lost a leg" or "yeah but he went blind.").....put your hands over your ears and start singing The Smurf Song.


Sara said...

Glad to see you back on here! While those A1c's are higher than what you wanted to see, I hear they are pretty typical for growing kids.

I have no idea how many pump clips I've broken over my 5+ years on the pump.

Sasha Bay said...

You know I salute you very much, being a mother is the most difficult job you will ever find in this world, these job gets more difficult especially when we found out that one of our kid have a sickness like diabetes, for sure at first it brakes your heart but still you made me amaze because you still handle the situation smoothly and even let the other people your family's story without hesitation.

So, I pray that your son will have more years to come in his life.

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Bernard said...

This may not console you, but I've had higher A1Cs, wait MUCH higher A1Cs. I do hope you figure out an approach that works. Thanks for all the work you do to keep him healthy, it will make a big impact when he's all grown up. Maybe your endo could get a week's 'trial' of a CGM for you? If it's a Dexcom, I'd give you a sensor.

Anonymous said...

thanks for sharing all this Lynnea--reminds me to pray for you daily. I forget sometimes with you all being so far away . Praying!


Scott K. Johnson said...

Thanks for the updates! Life gets busy, I know! Sounds like you are doing a great job - even if his A1C's are higher than you want them. But like Sara said, he's growing, which is CRAZY hard to deal with, and like Bernard said, I too struggle with my A1C's.

Hang in there!

Anonymous said...

I really salute you. You are a very great person and of course a very great mom. You showed me the true meaning of bravery. Being brave not for yourself but for your child. It's really heart breaking to know that the baby you take good care was diagnosed with an incurable disease when he grow up.

Really diabetes is a cheater. Anyway, I'm praying for your child's fast recovery.

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