Thursday, March 20, 2008

Endo Appt #1....

************WARNING: LONG POST********************

A couple of weeks ago I was talking to a "veteran" Mom.....she's been dealing with this disease for 13 years....she said to me that she quit going to the Endo appointments because she would get physically ill. She said before the appointments she would get migraines and when she would come out of the appointment she would feel sick to her stomach because no matter how hard they were trying and no matter what they were doing it never seemed like they were doing it "good enough". She said her husband has taken their daughter for years, and it works out just fine that way. At the time of this conversation I began to wonder....."Will that be me?" I'm beginning to think it will....and our first appointment was today.

OUR FIRST A1C SINCE BEING RELEASED FROM HOSPITAL

I may have mentioned the term A1C before, and I'm sure it's a foreign language to many. The A1C is a blood test used to measure how well someone is managing their diabetes. It is taken every 3 months, as it's an average blood glucose level over the life of a red blood cell. Basically the lower the A1C, the better chances a person has of NOT developing all the dreaded complications of diabetes. So basically it's a "grading" scale......how well are you managing your diabetes!!?? Here is a little chart used often to visibly show what the numbers mean:

J.J's A1C in the hospital was 12.3%. His A1C today was 9.8%. (I was sick!!) The last appt. they were hoping for at least an 8%, with an ultimate goal of 6-8%. I was extremely disappointed with this number. Doc wasn't too pleased either. We were only hitting our target blood range 30% of the time. (Sick some more!!) What makes it so sickening is just what the "veteran mom" said....we are trying so hard, doing everything we know how to do, and yet.....it's not good enough!!!

I contained myself during the appointment, and concentrated on asking the questions I needed to ask. I only choked down the tears once when I said to the endo "Look, I know from your point of view this looks really bad, but from my point of view I just don't know what else we can do. We are doing everything we're supposed to and trying so hard." When I got in the car it all came flowing....glad it was a sunny day and I could wear sunglasses. J.J. still knew something was wrong and I just said I didn't feel good....which was true.....I didn't!! A few minutes later when I was about to poke his finger he says to me (in his sweet J.J. voice) "Poor Mama." What a big heart!!! Here I am thinking "Poor guy, all these finger pokes, needles being jabbed in him etc." And he's thinking "Poor Mama."

As far as the rest of the appointment we have mixed feelings. This was the first time meeting this Endo because we were hoping to switch to a satellite clinic closer to our home. She is the only Endo working this site, so we thought we'd try the site and this new Endo. Well, we just have bad "vibes" about her. My husband, who RARELY.....EXTREMELY RARELY has bad vibes about ANYONE...(or any vibes for that matter!!).... just got a sense that she wasn't going to work out for us. It's probably just personality and philosophical reasons, but now we have to decide......stick it out with this Endo and have a closer drive.... OR.......drive farther and stick with the Endo we don't have bad vibes about? Hubby says "DRIVE FARTHER!!" I think I agree with him.

The head of the CDE's for the clinic was observing today because she wants to become a CNP. I tell ya, she was a God-send. If it weren't for her, I'm not sure how it would've gone.....since the vibes weren't the greatest with the Endo!! The visit lasted an hour and a half!!! I apologized up and down for taking so much of their time, but this CDE kept telling me not to apologize. She answered a lot of our questions even after the Endo said "Adios!" and went on to other patients.

Well, enough about that....so what about J.J.....and his treatment plan now!?!! Well, she wants him on the pump. Great idea!! This injection thing isn't working out the greatest because J.J. is so small and extremely insulin sensitive. DUH!! (Thus the high A1C). The problem with getting him on the pump? His basal insulin is so low they don't think the pump can give him that low of dose without causing problems. She wants to first try moving his Lantus dose to the AM, and upping Lantus. Sometimes that causes children to not even need to bolus for meals. She is thinking that the summer we will see much better control because of all the activity. She says fall might be a better time to try the pump once he's inside and not so active and possibly his insulin needs will have increased enough to get that basal number up to a better range. But she is leaving it up to us to decide.....we can dive in now and try to figure it out for the summer....or wait!! So prayers for wisdom would be appreciated!!

DONATED PUMP NEWS......I was able to get a hold of the gal who has the info on the donated pump. She gave me the brand and model and told me that if the doc said it was o.k. to use for J.J. we can have it!!! So today I asked about the donated pump. (This is where the CDE was invaluable!!) She said it's an older model, and the newer ones have a few more "bells and whistles", but in our case where we are doing all the figuring anyway it would be a great starter pump at a low or no upfront cost. She also explained that J.J. can go un-tethered once we get the basics down of using it. That means he could get his basal from a shot but his bolus's from the pump......thus getting the lower dosage we need for the meals, while eliminating the need to have a basal coming from the pump. It also means he would be free to take the pump off while playing outside......this was also discussed since my kids live in dirt, mud, and water all summer long!! She had so many options and the "down in the trenches" information from other parents we needed!!

We asked about protecting J.J.'s feet. Anyone that knows us, knows that our kids don't wear shoes much....if ever... in the summer. Going to church on Sunday becomes an all out "Where's Waldo" scene. All 5 kids walk around the house saying "Has anyone seen my shoes?" A lot of times the answer is "Yeah, out in the horse pasture". Knowing that diabetes patients have circulation problems and thus foot problems, I had to ask about shoes!!!

We were admonished that it's just common sense to keep shoes on!! My husband and I both choked when she said that!! What?? All kids don't have BLACK feet in the summer? I really think this is the "Country Mouse" VS. "City Mouse" mentality.....my neighbor called as I was walking in the door....she's a nurse....so we talked a while about J.J.'s appt. When I told her what the endo said about shoes she said "Those people living in the concrete jungle have no idea what it's like to live in the country." Thanks Donna!!

So what about shoes?......please pray about this.....because it will be HARD...if not impossible to keep shoes on J.J......and thus my whole family as proper examples to J.J. Also, to find shoes that can pretty much be in mud/water most days and not cause him to get sores etc. The endo said it's not a problem for him now.....she checked his circulation.....he has great circulation still.....and if being a kid means he doesn't wear shoes, he doesn't wear shoes. But if we want to think long-term, as a life long habit of protecting his feet we might want to consider getting him used to it now. So if anyone knows of any great products out there that can withstand all terrain type of beatings every day let me know!! I'm sure we'll have to experiment.

Overall, I'm glad they took the time to answer our questions, but I was just really bummed at that A1C. Really bummed!! I grew up getting A's and B's on my report cards...C's....what are those?......but to flat out fail.....UGH!!! Now, I know it's not all us....it's the equipment we are using, it's the small, constantly changing body we are trying to manage.....but the feeling of failure is still there all the same!!! On the long ride home I wanted to just be hugged!!! (I'm NOT a huggy person!!!)

I guess it all comes back to my 7 Words: TRUST GOD. EDUCATE YOURSELF. TRUST GOD MORE!!!

P.S.....Thank-you for all those pump prayers......looks like we will have one to get us started so we can continue saving for the next one. God is good!!! Also.....so far only Allison has had the stomach bug....we are hoping it stopped with her....but we'll see....it would be a first if only one of us came down with an illness and didn't "gift" it to someone else in the family!!!

6 comments:

Donna said...

Lynnea - Please don't be so hard on yourself. You are doing a great job. Too bad the endo was so critical because an A1C of 9.8 doesn't sound all that bad to me - especially since he was only diagnosed a few months ago. I know mine was that high or higher when I was a kid. You will get through this. It's just takes a while to get things straightened out. And with a little boy who is growing & active, you are going to have your challenges. But God will take care of things.

BTW - I think your hubby's right. If you get a bad vibe about someone, there's probably a reason for it.

Christine-Megan said...

It takes time to adjust to diabetes. I wouldn't worry about one or two elevated a1cs. You'll get there. Just be patient!

Great news on the pump!

bethany said...

if you could send me an email (i couldn't find yours) i have some more info on a pump for you. my email is shoeboxofdreams@yahoo.com and i have a minimed 512 that it's only a couple of years old but they let me upgrade for free so i don't use that one anymore. i'd be more than happy to pass it on to you if the other one doesn't work out or if you think that it would be a better fit for you guys.

Cody Turner said...

The A1C came down which is what you want. That means you are controlling his diabetes better. So that is good. As far as shoes go check into crocs. Payless has generic knock offs of crocks. It will protect his feet but yet them breathe and will withstand water and mud. All you would have to do to clean them is spray them down with the hose.
Also if you don't mind I am going to put a link to your blog on mine.

Cody

Anonymous said...

Lynnea--

I've followed your blog, and congratulate you for the fortitude you are demonstrating amid great difficulty. I've been married to a Type 1 for 43 years. (He's had diabetes since age 14 . . . and we both agree that your job, and JJ's, is made more difficult by his young age.)

I've not commented before . . . as I know you are overwhelmed not only by the newness of your "life with diabetes" but also by the huge amount of information you are getting from others who want to help or inform.

Today, when I read about the declining, but still high A1c, thought you might like to hear words of congratulations. Quite frankly, endos who recommend RAPID return to normal A1c after initial diagnosis may imperil their patient. Scientific literature (though I don't know whether studies included patients as young as JJ) indicate that RAPID reduction in A1c may not be most beneficial to the patient.

You've achieved a significant reduction, for which you should be proud. You've already discovered the importance of doing your own research. My suggestion would be to keep doing what you are doing. The A1c will come down . . . and MY worry for all who share your dilemma (parents of very young diabetics) is that doctors--with rigid, artificial guidelines--will fail to instruct you that to err is human . . . but in the world of T1DM, it is better to err on the 'high side' (A1c, bG) until you KNOW you are equipped to deal with the lows.

Melody

Lynnea said...

Thanks everyone for so much encouragement!! I'm feeling a little bit better today.

Donna--You are always so positive!! My mom said you have a great outlook on life!!

Christine--patience!! LOL!! I suppose I'm being training daily in that...no minute by minute....5 kids has given me some headway..but man....I've got a long way to go!!

Bethany--I just sent you an e-mail.

Cody--no prob--Link away!

Anonymous--you have quite the experience!! Thanks for taking the time to write!!

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