You Never Know Who's......

LURKING!!!

Last week I wrote a quick post about the events of the previous 24 hours. I didn't think much of it......ya know....just relaying some more "firsts" in our journey.

Well, Saturday morning as I'm just getting out of the shower hubby comes with the phone and says in a whisper, "It's Medtronic. They want to talk to you about your blog. Do you want to talk to them?"

A lot went through my mind in that instant. Why do they want me? What did I write? I was a little fearful, yet excited. What was this all about?

Adrian was her name. She made sure I was the author of J.J.'s diabetes journey at blogspot dot com, then went on to explain how she was alerted to my blog.....something about an e-mail, and a vice president of something, and whatever. Somehow, someway she was in charge of the situation at this point.

She complimented me on my writing.....thought I was a nurse.....yada, yada, yada... I really wasn't paying much attention I just wanted her to get to the point!! Turns out there were multiple "points".

Basically I believe my last post was a bit concerting to the folks over at Medtronic. J.J. had the "bleeder" when he took out the site, said he wanted to switch to shots(nothing new), a piece on his clip had busted off, and there was a cannula that was a tad longer than normal. To me, just a relay of information....not to the folks at Medtronic. Maybe it was bad press for them to write what I did. I was in no way lambasting or even complaining about Medtronic. All of it was typical for kids with type 1.

At any rate....Adrian was sweet and offered us a new pump clip to replace the broken one. She also wanted J.J. to enjoy his pump and offered to send us a pump skin to make his pump more "fun". Then I was transferred to another nice lady who recorded the lot number of the "long" cannula for future reference and quality control. She threw into the mix a couple of infusion sets.

Pretty nice "offers" for simply writing about my day dontcha think?

So.....I guess the good folks over at Medtronic have blog lurkers out there. Who knew? I wonder why they weren't listening when I talked about the $500 transfer fee for donated and/or used pumps. I didn't receive a phone call then!

KINKED & KINDNESS.......

KINKED

J.J. was running super high on Saturday night, but he had been somewhat high most of our trip. I had him on a 150% temp. basal which had been helping. But the highs we were experiencing Saturday night were really weird. Numbers in the 400's and 500's....no ketones...thank-you Lord!!

This situation was somewhat like the last time we traveled. J.J.....high. Mom and Dad....confused. However, this time we were less stressed about it. We started giving shots to get him down, but then he would eat again or the shot would wear off then ...... Whammo!!.....TO THE MOON. We figured it was one of three scenarios.....

1. He was getting sick---possible since his sisters had vomited the night before.
2. Our insulin was losing it's effectiveness----possible since we are on week 4.5 w/ this vial.
3. The site was kinked---possible since hubby did the site change....maybe his 3rd EVER.

All three scenarios swirled in my head Sunday morning. I haven't had a kinked site yet....at least when I was using the right infusion sets....so I had a hard time thinking it was the site. I kept asking hubby what he had done knowing full well that he probably wouldn't be able to tell me. Plus, even if he did everything "right" it could still be kinked.

We were about ready to head home from Nebraska but J.J.'s post breakfast numbers were through the roof. I decided to change the site real fast before we left. I left the old site in. I didn't want to rip his skin off since there wasn't time to soak in a tub & I didn't bring any De-solve It.

We made it home.....J.J.'s number still running high.....but acceptable. I had upped his basal by 200%.....knowing he would be sitting all day. It wasn't until the next morning I realized that I needed to take off the old site. When I did my reaction was:

WHOA!! NOW THAT'S A KINKED SITE!!!!



The cannula was scrunched up sitting right on top of his skin. Didn't even penetrate the skin. Hubby was with me when I took it off and was shaking his head wondering how he managed to kink it so bad. I really don't have an answer for that......I know it just happens sometimes.....but.... poor guy....it had to happen to him when he was trying to give me a break!!

KINDNESS
When we got home there was plenty of mail to weed through. One of the items was a package from Molly over at Dam Diabetes . She had contacted me a couple weeks ago wondering if I could use some supplies she didn't need anymore.

She sent us a load of supplies....months worth for us. I can't tell you what a blessing this is to us....not just financially, but the act of kindness encourages us and strengthens our desires to persevere and endure. It reminds us that we aren't alone in our struggles and there are others out there willing to come alongside to help. God is so good to bring people like Molly into our lives. Thank-you Molly for reaching out to us & giving so generously!! (Oh...and go over to her site to see Dixie....her "diabetes dog".....she is just adorable!!)

More problem solving......

Last night it hit me how serious J.J.'s tape allergy is. Before last night he would tell me his site itched, and I'd look at it, and see that it was red and tell him not to itch it. You know, the typical...."Yeah, yeah you'll be fine" response. I even knew he was itching to the point of breaking his skin. I should've been more attentive and aware of REALLY how bad he must be suffering.

J.J. knew I had gotten a kit from Medtronic to help relieve the itching. What he didn't realize is that to relieve his itching I needed to find the right barrier and or infusion set that won't irritate his skin...BEFORE the site goes on...not after it's taken off. He was thinking I would take off the site, apply some magical cream and it would all go away.

So last night he told me it was itching. I tried hydrocortisone cream per the CDE's recommendation. He comes to me within 5 minutes....."That didn't work, Mama." Hmmmm.....so I take a look at the site. It's now red, puffy and reminds me of when I get a mosquito bite....except this "mosquito bite" is about an inch and a half in diameter.....perfect circle by the way...right where the tape is on his skin.

My Mama heart was sick. I thought of how itchy one mosquito bite can be, but such a large area. I tried another anti-itch cream I had. A few minutes later...he's chanting, "That didn't work, that didn't work!" He told me to get the stuff from the "kit". When I explained to him what the stuff in the kit was for, his face looked like he was in a horror film. My heart sank. I couldn't relieve his pain. I began praying and hoping the "hives"...."rash"... whatever you want to call it, would subside enough so he could get to sleep.

So now I'm a little fearful that he may be allergic to all medical tapes. I know that may be irrational, and I have yet to put to use the supplies Medtronic gave me, but it isn't uncommon for a person that has one allergy to tapes to be allergic to all tapes. So pray with me we can find a barrier tape that he isn't allergic to.

I also realized that I HAVE to change his site every 2 days. I was reluctant to do it. The CDE told me I had to. But honestly I didn't think it was all that bad. I was hoping he would just NOT itch. So....why would I be reluctant to change the site, if it means he'll have better numbers and be less likely to be irritate by the tapes? Ahhh.....the almighty dollor. Site changes are spendy when you're paying out of pocket for the supplies.....about $15/site. So costs also cause me to be fearful. But if it's what he needs, it's what I need to do.

As I was typing this, J.J. came up for breakfast. I asked him to show me his old site. NOTHING!! The site looked fine.....healthy. He didn't itch it last night, so it's not raw broken skin. I've read that some people use a Benadryl spray after they change out a site. Maybe that's what will work on the "back side". Of course I'll try the other barrier methods BEFORE I put on his site and see if any of them relieve the pain and itching, but maybe if I can find something that inhibits his desire to itch. Hmmmmm.....

And thus the problem solving continues.

Great Service...but......

......now what??????

J.J.'s sites are really itching him. They don't seem to be infected as it's not at the site of the cannula but the area around, where the adhesive sticks. After talking to the CDE last week, she told me to call Medtronic to have them send out barrier samples.

I called Medtronic late Saturday night. They were extremely helpful & helped me troubleshoot for about 20 minutes. We're thinking J.J. is allergic to a chemical in the infusion set adhesive. Told me they would send me out barrier samples. Little did I know they next day aired them!! About 9 am this morning the supplies arrived. Whoa....now that's service!!

However, I'm kind of wondering where to start and how am I to know if the product works with just ONE sample of each product? And what about the "tapes", like Tegaderm....do I have to cut a hole in it before I put the set on, or will the needle just penetrate the "film"?

Aye, aye, aye......so many NEW things to learn!

So.......Why are we pumping?....

You know it's time to question the pump decision when an endo looks at you and says, "You probably won't get a better A1C on the pump than you got with shots." This from the endo we saw today after reviewing the past two weeks of numbers on the pump. She was trying to persuade me that the 200's, 300's, 400's we've seen in the past two weeks aren't all that bad. When I tell her we didn't see those numbers using shots she gives us the line about the pump not being much better as far as bringing down an A1C in our case. So then I begin to question.....Why are we doing this to ourselves? We had a great system down with the shots. Not a bad A1C.....7.5. So yeah...I begin to ask WHY?

Especially since the past few nights have been pretty grueling with the pump. He comes down beautifully after dinner then proceeds to go sky high. Thus keeping us up most of the night giving corrections, checking ketones, and hoping and praying he comes down.

The lack of sleep combined with the lack of help from the endo and CDE made me a little snappy with them today. I wish I could retype some of the conversation we had, but my brain is fried. I will say that the bulk of the time I spent trying to get them to adjust night-time basals/corrections. She began to start on the daytime, but I quickly told her to fix the night.....FIX THE NIGHT!!!!! I need sleep. If I have sleep I can figure out the day. If I don't have sleep I'm not good for much, let alone trying to problem solve something with soooooo many variables. I thought with shots there were a lot of variables.....now with the pump we've added all the pump variables. It's just mind spinning.

Let me clue you in on one variable that through us for a loop last night. J.J. was at the park and comes running up to his dad saying the pump is beeping. Hubby looks at pump and it's completely reset. No basal information anymore, and there are a couple of warnings blaring. He calls me for all the basal settings so he can reset the pump.

I begin to freak. Why did it reset out of the blue? Why would it do that? Is it broken already? So I spend my "quiet house time" troubleshooting the incident. Turns out that insulin pumps are senstitive to static electricity...like most electronics. The plastic slides at parks, combined with J.J.'s nylon shorts pretty much shorted the thing out and caused it to "protect itself" and him from getting an accidental dosage. Who knew? I am so thankful for the internet....I figured out the problem in less than an hour. I discovered that to help prevent it from happening is to wrap the pump in a dryer sheet. Makes sense!!

But again......there's just one more thing to think about. Or how about tonight. I gave a bolus for a snack around five. A little over an hour later....325!! What? So I check the pump......seems that hubby used cold insulin this morning when he changed the set so there were tiny little bubbles in the reservoir and tubing. Those tiny little bubbles can make a huge difference in a kid only getting tiny little doses!! I used close to 20 units of insulin to get all the air bubbles out of the tubing!!:-(

So......yeah.....this pump thing is kickin' us!! I keep telling myself it will get better, and it will be worth it, but man.....I'm soooooo wanting to go back to the familiar.

O.K....this is just written out of tiredness....maybe I should try to sleep!!:-)

Pumping Weekiversary.....

J.J.'s been on the pump for one week. These are my impressions of this first week.

The week began a little stormy. Having NO experience, LITTLE knowledge, and EVEN LESS sleep made the first few days stressful.

His basal doses in the beginning ended up being way to low, especially at night. After 24 hours we said, "Forget this, we're increasing his basal." The increase at night helped some, but it was still clear he wasn't getting enough. After a couple more tweaks we are at a pretty good range. Not optimal, but at least at a level where we aren't having to bolus every hour all night long to keep him from going to the moon.

The first set change was a little nerve wracking. Having no help, a household full of active children, and forgetting to set out the insulin beforehand made it somewhat difficult. I spent some time on the Children with Diabetes Forums and the Type1parents Forum reading their tips and tricks for site changes. It helped, but it's only knowledge.....the experience is what I needed. I shook like I did the first time. It went in well, however, and seemed to give him the insulin he needed. PHEW!!

The first set change was under my belt....the next one would prove much easier. No shaking, no nothing. J.J., however, did wake up to the fact that it is painful. He fussed and fussed and said he didn't want to do the pump anymore. I asked, "You would rather go back to doing something like this 4-6 times a day instead of once every 2-3 days?" That kept him quiet. I'm sure we'll get the fussing for the set changes. We got them for the shots, but if we sympathize yet remain firm in our resolve, he gets over it quickly and begins playing seconds after it's in.

We've had issues this week with him peeing on the pump. Thankfully the pumps are somewhat waterproof, but we can't get him to remember to move it out of the way. I'll leave Dad to help in that training!!

After changing the reservoir this morning it was apparent that J.J. will need more than one vial of insulin a month. We're having a difficult time trying to figure out how that is so, since we were throwing away half vials on shots. But he's taking in an average of 13 units of insulin a day, and the vials are only for 100 units. I called our CDE this morning and left a message. It will be interesting to see how much insulin she ends up prescribing for him on a monthly basis.

The CDE feel's comfortable with our ability to manage and tweak the pump on our own. We rarely wait to talk to them about much, so when they do call to check up and we've made adjustments that sound like what they would've done, I think they're going to let us be. Not a big deal....I'm not much for hand holding. We will attend another class next week to get even more information on using some of the pumps extended features. I also ordered "Pumping Insulin" by John Walsh. Hopefully with those resources we'll be able to use the pump to it's fullest potential.

So far we are liking the pump experience. It's nice to have precision....but weird to actually have the capability. On shots we would figure he needed 2.7 units, but only be able to dose a 2.5. It's also nice to be able to give him the insulin he needs at various times of the day. We couldn't do that with shots. So far we have only let him have an unscheduled snack once or twice because we are still figuring out basals and meal bolus's, but it's been nice to have the ability to do that. It's also wonderful to be able to dose BEFORE he eats.....a little different than my routine, but I'm getting used to it.

So there you go......our first week on the pump. A little roller coaster ride, but we're coasting a bit now. We have much to learn and experience to be sure.

Oh, What a Night.....

I crawled out of bed this morning with an old tune in my head..."Oh, what a night...la, la, la, back in '63....la, la,la,....What a lady. What a night." I really don't know much of the words, but the tune was there. Man did we have a night!! Our first night with the pump was memorable for sure.

Knowing how much my hubby loves to be the first one to play with any new gadget that comes into the house. And knowing I would be out of town next weekend. I thought HE would need the practice, so I tried to stay out of the decision tree last night for dinner.

There were two heart stops, however, that made me wonder how this night would end up. First, was when hubby was walking toward me with the take-n-bake pizza's at Wal-mart. I began to think that pizza was not the best choice for our very first dinner on the pump. I mean everyone knows about the pizza phenomenon, right? We've experienced it. We know that J.J. ALWAYS goes high and requires a second and sometimes third shot to cover pizza.

The second heart stop was when hubby was figuring everything out for dinner. I made a comment about how nice and wonderful it would be or will be to be able to use the different bolusing features on the pump to cover the pizza. He says something like, "Well, let's do it. Why do I need to wait for them to tell us? I can figure this out?"

Of course, my mind did a quick......"I wouldn't do that if I were you." But when I decide to have him take over diabetes I like to be removed from the decisions. Normally it gives me the break I need.....so I kept my mind on the task I was doing and somewhat ignored his actions with the pump.

When we put J.J. to bed around 10 pm, he was in the 180's. High even for him at night. But hubby said he programed the pump to be delivering insulin and we really couldn't or shouldn't correct for anything until midnight. He asked if I would check at midnight, then he would check at 3.

I was doing all I could to stay up until midnight.....remember yesterday's early morning drive to St. Paul? But I managed to make it, and stumble downstairs to J.J.'s bedroom. The first thing I noticed when checking his blood was how big the new meter was. It's very bulky!! I fumbled a bit but was able to get a reading........

483!!

My heart stopped. The fear of DKA while using a pump was drilled into us at the clinic.

It took a second for me to think of what to do.

O.k......I think I need to check ketones...is that right? Do I give him a shot and not use the pump? Has the pump failed already.... WHAT DID HE DO? WHAT DID MY HUSBAND DO?

I ran upstairs to the fridge to look at the magnet the clinic had just given us.

Over 300... check for ketones.

Ketostix....Where are the Ketostix? I just had them right here!! Where are the Ketostix? Wait....I'm gonna have to get him to pee for me. I can't get him to drink for me at night, how am I going to get him to pee in a cup? Ketostix....whare are the Ketostix?

Hubby finally wakes up to my frantic searching for Ketostix and asks what's going on. I informed him of the situation. He gets up right away and begins to help.....and bring a sense of calm to my heart....I'm not in this alone!!

We get J.J. up to pee in the cup. Well, hubby did. He laughed at me this morning. Told me that when he heard me say in a sweet little voice, "J.J..... Sweetie.....you need to get up and go potty for Mama." He knew I was doomed, and proceeded to yank him out of bed and "walk" him to the bathroom. He's had experience with that and knows that J.J. won't wake up even to taking him to the bathroom.

1-2-3-4-5-6-7-8-9-10-11-12-13-14-15

PHEW...negative ketones.

A weight is lifted....momentarily.

How old are those Ketostix? Do they really go bad that fast? What if they're wrong? I should've bought some on the way home today. They told us to have fresh Ketostix. And the pump.... Is the pump working right? What do we do now? A shot or use the pump? Check the magnet....CHECK THE MAGNET!! Thank God for magnets.

NEGATIVE KETONES....USE PUMP TO GIVE HIGH CORRECTION BOLUS AND RECHECK IN ONE HOUR TO MAKE SURE BLOOD SUGAR IS COMING DOWN.

ONE HOUR....I could barely make it to midnight, and now I'm staying up until 1 am?

Like I could sleep. I tried to figure out hubby's scribbles in the log, and even checked the meter to see what it had actually done, but I couldn't really figure anything out. I waited the hour out praying that the correction was working and he was coming down.

368

YES, thank-you Lord.....he's coming down.

Hubby took the rest of the night and continued to give correction doses to bring him down. That is normal on a pizza night...but what is not normal is him being so high.

At 6 am J.J. walked into my room and said, ."Dad forgot to check my blood. I just saw him drive away. He needed to check my blood."

I asked him if the pump was beeping or something and he said it was.

I got up to check the log and his meter and noticed hubby had checked him 2 minutes prior. J.J. probably woke up to the beep the pump gives when a blood glucose reading has been received from the meter.

While I'm checking the log J.J. had run to the bathroom and I hear a THUD. I run to the bathroom where J.J. is holding the pump saying "What do I do with this thing.....I have to pee soooo bad.....what do I do?"

Poor guy.....we'll have to figure this all out. Not being attached to something all the time does have it's advantages. I'm sure he'll get used to it. I just hope the pump holds up while he's learning how to live with it.

The funny thing about this whole night is that J.J. had no clue any of it was happening!! When I told him we had to get him up to go to the bathroom to check ketones he didn't believe me!!

Kids are sooooo resilient.

Now.....how do I function with so little sleep while the rest of my brood has slept so soundly!!???

CAFFEINE!!! I NEED CAFFEINE!!!

Officially Pumping.....

Look at him.... all smug with the pump on his hip!!:-)

It's hard to believe this day is here. Who'da thought? Almost 10 months into this and J.J. is off all those nasty daily injections!! YAY!! Of course we face new, but different challenges I'm sure, but we are excited to see how this works for us. So far it's been amazing.

We got up really early to make it to St.Paul by 9 am. The news had us (read ME!) worried with all the riots and blocked traffic because of the RNC. We ended up being 45 minutes too early....oops!!

The first couple hours we went over the basics and made sure all the numbers were confirmed with the endo before we went "live". The pump seemed to be working properly throughout the set-up process, which was encouraging.

Finally, it came time to insert the cannula. I was somewhat nervous because I had requested numbing cream when we used the trial pump. This time he would feel everything. He really wanted the site in the stomach, but the CDE said there just wasn't enough fat. So the bum it was.



My hands were shaking.....I don't know why, I give him 4-6 shots a day, what's one poke? He didn't even flinch. I was shocked. I'm not sure if it was because two other guys were also starting at the same time and he was being brave, or he really didn't feel it all that much. At least this first one wasn't so painful. For that we are very thankful.

We were given two brand new meters that link with the pump!! It's always fun to get diabetes freebies!! We just thought we weren't going to be able to use that feature. The strips are the same ones we've been using this whole time, so that's an added bonus.

We took his blood sugar and out of nowhere the pump beeped then showed the result. Yay....that worked too!!:-) It showed a high number.....mainly because they take the kids off Lantus the day before so they can start on the pump. We gave our first correction bolus AND IT WORKED!! He dropped from the 200's to the 70's.

Today has been all a'flutter with NEWNESS. Like.... going to McDonald's and bolusing BEFORE he ate...and NOT giving an injection!!! How about changing clothes? Or "going poop"? J.J. came to us wondering how he was going to use the bathroom with his pump on......good question. We're still trying to figure all that out.

For the next 3 days we have to check his blood every 3 hours around the clock to make sure everything is working properly and the pump settings are accurate. Really this is nothing new for us. We were already in this habit, so it's not so much a big deal.

There's a feature on the pump which can be set to alert us when we need to check his blood after giving a bolus. So we told J.J. that if the pump starts beeping to let us know. At one point hubby looks at me and says, "J.J.'s pump should've gone off by now. Hasn't it been 3 hours?" We called J.J. in from playing outside and he says, "Mom, Dad, the pump has been beeping at me.....dooot, dooot, doooot." We were like "YEAH....that means you have to GET US, DUDE!!"



We are just so thankful for this day, and want to thank everyone who has prayed for it. We also want to thank the generous person who gave us the pump.....what a blessing....we cannot thank you enough.....God bless you!!

Please continue to pray for the adjustment.....we know we'll have problems along the way. Also pray for continued provision. Pump supplies (unfortunately) come out of the durable medical portion of our policy, instead of prescriptions. So basically we pay out of pocket for his monthly pump supplies. We hope to never have to make a decision between money and his health.

Now......off to figure out how to sew pump pockets in his clothes......and find a few belts....the weight of the pump causes his pants to sag.:-(

Insulin Sensitivy: Take Two.....

Since we tried to get his insulin sensitivity yesterday and well, it appears it was somewhat botched... I really didn't think we would have another opportunity. However, his number right before lunch was over 200. So I thought we should give it another try.

(As a side note I have come to the conclusion that this kid should NOT eat Panera bagels for breakfast. WOW....talk about high carb!! This is the first food I've seen a pattern where I just can't seem to dose enough for it. He loves them so much and we get them free....so quite the bummer.)

I decide to dose just a half unit for the 220, and give him eggs, diet pop, and cheese. The pop is in there to entice him to eat the eggs AGAIN for lunch!! I check 2 hours later:

62!!!!

Gee....so that dose...the lowest dose I can technically give him using a syringe.... dropped him 158 mg/dL in 2 hours..... OH MY!!

I still wasn't able to check him at the 3 & 4 hour marks because I had to give him carbs to correct the low!!

Oh well......such is life. As usual his numbers are all whacky the week we head to the endo. This is beginning to become a habit for him. I'm learning to not let it stress me out.

Pump supplies arrived today.......Can you feel the excitement?....Are ya'll counting down with us?........3-2-1---just three days until J.J. goes on the pump.

Pump School Completed!!

Yay!! We just completed one of our requirements for pump start this Friday. Honestly it was sooooo boring. This stuff is not rocket science....as my husband put it. The experience and the "doing" is going to be the biggest hurdle. We know what we can at this point. Now it's just figuring out how this will specifically affect J.J., and putting everything we've learned into practice.

The only big hurdle this week is trying to figure out J.J.'s insulin sensitivity. We don't have exact numbers and the clinic wants those. We usually just say a half unit will crash him, so watch out if we correct for a high. We factor in so much when we correct for highs that we generally don't have an set rule like if he's over 150 give him .5 units. The clinic said that we should do it on a morning he wakes up high....give him a correction and only let him have a protein breakfast. The problem with that.....he doesn't wake up high.....so should we allow him to go high just for this test...probably....but it's a hard thing to do.

Hubby said many times during "class".....now, why can't we just do this on our own? Why do we have to drive 150 miles, pay hundreds of dollars to have them show us how to use this? Aren't the supplies being shipped right to us? Don't we already have the insulin? Can't we have so and so just come over and get us going...she's been on the pump for most of her life?

Although he is soooooo right, we will have to jump through the hoops. Do a bunch of head nodding and tail wagging. Tis the system we're working with....

Stay tuned....

Pump Start Scheduled.....

I called our CDE because we are down to our last penfill of insulin. I didn't want to reorder another 6 months supply if J.J. were to get on the pump in the next couple of weeks rendering the penfills useless to fill the pump reservoirs. To me, not a big deal....nothing threatening, nothing that screams "WE'RE MOVING FORWARD!"

When she calls back, however, she asks us if we want to start J.J. on the pump. Gee... what do I say...? Yes, no, maybe? I ended up telling her yes. Wow...she moved into action...set a date for next Friday, rattled off a bunch of requirements and what I'm calling "homework" assignments.

While she's talking I get BLEEPED twice....but can't really answer the calls since she's in super-duper CDE mode. The calls were from the pump supply company and my hubby. Both had input to this situation that I wasn't privy to....since I couldn't answer the bleeping phone!!

Turns out our insurance isn't going to pay a penny, as we(I) figured, for the supplies until our outrageously high deductible is met. I was figuring that was the case....but hubby wasn't. So when the supplier couldn't get me, she calls hubby....who goes into complete sticker shock!! Ends up NOT giving them a credit card number and calls me...on both my phones.

I was already a little apprehensive about this pump start, but when I talked to hubby and he's like, "Are you sure we want to do this? Is it really going to be (insert cost) a month? I mean, I know it's what's best for J.J., but is it really going to cost that much a month?"

And then later I try to prepare him for the difficulties ahead by saying, "It's like STARTING OVER...it's like HAVING A NEWBORN IN THE HOUSE AGAIN....Are you prepared for that?"

He responds by saying, "NO! Nobody is ever really ready for a newborn, but it has to come out sometime. So this has to happen sometime."

By this time I AM TOTALLY FREAKING OUT....

Wow...if he's not ready for this, I can't do this....this is going to be way bad. No way....I'm calling everybody back NOW...no supplies, no pump start.

But then the fam leaves for soccer, and I have a quiet house. I decide to sit down to "vent" in my journal when I read the very last entry:

"No, we wouldn't choose to have storms, but what we will find in the storm is God, who changes our fears to faith."
--Fern Nichols in Every Child Needs a Praying Mother

Fears to faith...exactly what I needed to read. The tornado of fears was whisking me away...causing a frantic frenzied crazy Mama. For the next two hours I turned my fears over to God, knowing I can cast all my burdens upon Him because He cares for me. In those hours I found the faith to free me of the fears. He has an endless supply of grace, strength, and perseverance....I just need to ask Him for it.

This very long winded post is to say that J.J. is scheduled to receive his supplies by early next week, and to start on the pump Friday September 5th. We would appreciate your prayers that:

• The adjustment would go smoothly
• Our minds would be able to absorb the enormous amounts of NEW information we need to care for J.J. using this different method of treatment...and the kids would understand while we learn.
  
• J.J.'s fears would be calmed...he said he's "a little" scared.
• We would trust God completely and fully for financial provision..He has never failed us...
• Our marriage would remain strong--lack of sleep, nerves on edge, lack of time to just be with one another, and keeping all the plates spinning at the same time--can all put a strain on a marriage.
• The used pump will work until we can get a new one....possibly the beginning of 2009....and it won't be too frustrating to use it.
  

Will it ever happen?....

I suppose the big question on people's minds lately is:

When will J.J. get on the pump?

I'd love to know that myself. One thing we've learned in the past 9 months is that the medical industry likes to take their time. To get things moved through faster it takes time, energy, and resources. Of which I have none.

Medtronic called me this morning wanting to send out J.J.'s pump supplies. I had requested they contact me with a final authorization before they shipped. So they call today to tell me the basics, but then tell me that Medtronic is not an "in-network" provider. Meaning it will cost a lot more to buy from them.

We determined that our insurance has a distributor that we need to order from to get better benefits. I had to cancel the order (which took 2 weeks to process) from Medtronic, then call this other company. Thirty minutes later, J.J. is in the new system and set to receive his supplies by THIS FRIDAY!!!

WHAT? FRIDAY? YEAH--RIGHT!!!

I chuckled when I heard that. The sweet customer service rep. assured me that the their company moves things through quickly and worst case scenario would be next Tuesday.

Should I hold my breath people? Will he have his supplies by next week this time??? Could J.J. be on the pump within the next two weeks?

Back in Business.......

Our internet has had problems for some time. After much stress and a bit of money, we can hopefully say our internet troubles are behind us....for now!! I've had many posts started in my head, but I thought I'd throw out a post.....it may be long and ramble-y....lots in my head!!

Yesterday, I finally got around to calling Medtronic to order supplies for the donated pump. When I called I assumed the clinic had informed them of what J.J. needed, but they didn't. So here I was on the phone looking like an idiot. He has only tried a dummy pump once, so I had no clue what infusion set he used, or reservoirs he needs.....other supplies??? I was clueless. She set me up anyway with what she thought he would need, while I agreed to call my CDE to figure out if the order was correct. Seems like it is....so......

Maybe in a few weeks.....or months.......insurance is involved here people.....J.J. will be on a pump.

I can truly say I have completely mixed feelings about this. My head knows that this is the absolute best for J.J.'s overall health. Control is everything with this disease. The better his numbers, the better his chances are of avoiding heart disease, kidney disease, amputations, nerve damage, blindness.....you get the picture. My heart wants the best for him as well, but I'm tired, my emotions are frayed, and I wonder if my mind can handle more information. Some days I'm all gung-ho.....lets tackle this next hurdle. But other days I know I'll lose it totally. I'm afraid I won't get through the adjustment and end up chucking the thing off the back deck.......or out the car window, or off the dock....depending on where we are at the time of the break down!!

So..... prayers that I can do all things through Christ who strengthens me!!(We all see Donna smiling here!!)

Also if you could pray for this weekend. We are going camping. We went two weekends ago, and found that camping is crazy on diabetes. We were constantly chasing lows. The extra exercise was really something we hadn't encountered before. He rode his bike non-stop around the campground & on the bike trails, then went swimming, then rode his bike some more.

Of course he exercises all the time, and we thought we were adjusting this weekend, but..... WOW!! The first night we put him to bed then my gut said to check him.....low, correct, low, correct, low, correct......sigh...finally at an acceptable number. Check.....SUPER HIGH!! Nice rebound, Bud!! Oh yeah....try correcting a low on a kid who has totally exhausted himself....he was spitting out everything we tried to give him.....imagine milk/juice/Smarties spewed across sleeping bags!!! Not fun!! Interestingly....he doesn't recall any of this the next morning.....but we'll never forget it!!

So the next night, bound and determined not to repeat the previous night.....we lower his Lantus, then we let him have a Smore......can anyone recall the carbs on a smore? Well it's 25 grams.....or at least that's what his was. 25 grams!!!!! I checked him an hour after he ate it to see if it actually did spike him.....now, keep in mind we let him have this after he was done exercising & we're all telling stories around the fire......so an hour later I check..... 115!!! Lets see.....all that sugar is doing NOTHING!!! But he's in an acceptable range, so we leave him.....no shot, no nothing. Put him to bed.....check.....low!!! This is a kid that can have a piece of gum that has 5 grams in it and it spikes him 75 mg/dl!!! That night my poor hubby was up 3-4 times correcting lows. He was a little more cautious and conservative in his adjustments so J.J. didn't rebound, but still.....ALL NIGHT basically!!!

Oh....one more story.....we went on numerous bike rides with J.J.while camping.... I strapped a meter with Smarties to my belt loop. About halfway through I check....he's low, I correct....as best I could. Normally if he's going low at home I have him sit, but we were still a good 2 miles from camp and he wanted to get back and eat.....yes, lows make him very hungry.

We keep going....he complains that his legs hurt. I get the meter out....CRUD....where are all the test strips? I must've dumped them the last time we stopped. Thankfully we only had 4 in there....but still....how am I going to check him? I gave him more Smarties......assuming he was still low. While he's eating them a "walker" walks by and says, "Oh....stopping to have a treat?"

SIGH.....big 'ol sigh......

I WISH IT WERE JUST A TREAT.....but NO.....this is keeping him from passing out on me thank you very much!!!

O.K....I wasn't that sarcastic with this nice person....I just told her he had diabetes.

So back to my original request......prayer for this weekend. I know each new experience causes us to stretch ourselves and learn more about our son and his needs, but sometimes it's scary. Hopefully we've gained some knowledge from the last camping trip and this one will go much better.....number-wise.

:) Sorry for the long-winded post!!:-)

Endo Appointment #2.....

Endo appointment #2.....new endo.....better results!!

Since our last endo appointment didn't go so well, we decided to go back to the endo we had in the hospital. It proved to be worth the extra drive to see her!! She is just kinder and gentler in her approach and extremely thorough. We will definitely stick with her.

She did ask about some of our numbers, but mainly to see if adjustments needed to be made in our dosages.

The great news is that J.J.'s A1C is 7.5!!! More in range!!! The endo said if we can keep him here for the next few years, that'd be great. She says for his age they're happy with 8.5, so to see 7.5 means we are controlling his diabetes fairly well.

Because of the control we are able to achieve right now, it's very hard to look at the pump and get excited. Our endo said, yes, 3 months ago they were pushing for it, but now.....it's not so necessary. I'm concerned that once winter hits we won't be able to get these results because of the decreased activity.

So.......here is the pump status.......

We still haven't heard from Medtronic about getting our pump supplies. Our clinic called and approved the donated pump use, and said Medtronic would be calling me to set up delivery of supplies. It's been 4 weeks today since that call!! I was beginning to think Medtronic was not going to work with us at all. In fact I was on ipump.org's website yesterday and it states that it's illegal to give medical supplies like a pump to someone. Today, however, when I was in the clinic our CDE says that I probably haven't heard from Medtronic because another form or a phone call from me was in order!! That was news to me!! She was going to make a phone call to the rep and try to get the ball rolling and he should call us in the next few days.

Now this was interesting.....both my CDE and Endo were in the room at the same time while we were discussing the pumps. At first the donated pump wasn't mentioned, I began talking about how if we were to get a pump I was going to have the reps from two companies in my home because walking around with a DUD pump is NOT a way to decide on a $6000 device. I told them I wanted to get a real feel for how the mechanism works----the electronics----the pros and cons, etc. My endo tells me she'd rather I not do that, but to rely on the CDE staff in the clinic to explain the pro's and con's because a rep will only give me the positive, but the CDE's will know more of the negative and give me a better rounded knowledge of the two. She did say both pumps are excellent whatever we decide, but she would have the CDE show us both.

So the CDE takes FOREVER to gather a few things and then hands us the latest model of the two pumps to "play with", but they would have to stay with the clinic. Then she hands us the two manuals for both and says we can take them with us but we would have to ship them back as soon as we were done. She was going to leave us in the room to "decide'. Here I am thinking...."GEE....that was really informative". She still isn't showing us the features, pros vs. cons.....etc!! We really had to be somewhere, so I told her she could have it all, but thanks anyway!! I already know this clinic leans very heavily toward one company, so I really didn't expect much.

I find it very interesting that the endo would discourage me from seeing the reps. Hubby is a manufacturing sales rep.....so of course he got in the van and said....."We're getting the reps to come out!! Let's see how well they sell their product. If they're good they'll tell us the cons of their product and maybe a few of the other product.....don't worry we'll have a well rounded knowledge."

Overall it was a good appointment. It was nice to come out with a smile instead of tears!!:-) We'll just have to figure this pump situation out.....but it'll happen eventually.

Happy 4th to all!!:-)

I'm amazed.....

I'm in shock is more like it.......here's the scoop.......

I came home today to a message from the head CDE at the clinic wanting to discuss with me the "pump situation", that she had final word from our endo, etc. I instantly got sick to my stomach. My emotions are completely frayed at this point. I just didn't think I could call her back. I wasn't ready to ask the right probing questions, figure out how to be assertive, get what we needed for J.J. etc.

I called hubby.

Voice mail: "Uh, hon, the clinic called. They want to discuss the "pump situation". I'm just not up for this will you call her back? Her number is........"

A half hour later (after jotting down a few notes so I wouldn't lose my brain) I call clinic.

Voice mail: "Yes, this is Lynnea _____calling in regards to J.J._______ and the "pump situation". I'll be home all afternoon if you'd like to give us a call back. Our number is_____"

A half hour later hubby calls me: "You left a voice mail, but I didn't get to listen to it, did you need something?"

I tell him the situation and how I'm really an emotional basket case and shouldn't be trying to talk to anyone about this today, but I just had to call her back. He said he would call so he could talk to her instead of me.

Hubby calls clinic.

Hubby gets voice mail!!!

Hubby comes home......no call from clinic yet.

Hubby leaves to get pizza.....(we have last minute out of town guests.)

Phone rings.

It's the clinic.......I have to take the call. Where's hubby? Getting pizza.......!!!!

"Hello?"

"Hi, this is ______ from Children's. I'm calling to let you know that after Dr. _____ consulted with her colleagues and risk management we have come to the consensus that this, being such a unique situation , but not an unreasonable request.....we totally understand the request......we have concluded that you may use the donated pump for J.J.........."

A lot was said after the verdict was handed down, but I seemed to be in a little mini shock. I listened and I remember the conversation, but I'm not sure I was all there!!!

I think she went on to talk about how this situation is just like others who begin pumping......the risk is just the same as anyone may encounter when using an insulin pump. There are malfunctions in electronics many times with pumps, but the danger to the individual is kept in check by the blood glucose monitoring etc., not so much by if the pump is working or not. If the pump is a dud or malfunctions we'll go back to shots......and go from there. Just like any other person on a pump. So this situation isn't necessarily a greater risk.

She said she would send in a prescription to Medtronic for the pump supplies. Medtronic would be calling us to get our insurance information. Then when we get the supplies we can call to schedule an appointment for pump start!!

YIKES!!

Let me say that again:

YIKES!!!!!

Believe me I'm thankful.....I just didn't think they would approve the pump!!! Now I'm just wondering if we are really ready for this. Yeah, the past week has been making us wish we had the pump with the crazy nighttime numbers and all the events where there's a lot of random eating going on, but to actually start. I must say I'm slightly unsure of the whole thing.

As cruddy as MDI is for us right now, it's familiar. It's what we know. To start with something new again.......I don't think I have it in me right now. But I suppose all the paperwork, scheduling, etc.....it could be a month before we actually start. We are told we need at least a good month to dedicate to this pump start. There is a lot to learn......a lot can go wrong......it's like starting over again!!! STARTING OVER AGAIN.......starting over again......starting over again.....not again!!!!!

Ain't no thang.....

Yeah....so......J.J. wakes up this morning and wants his pump off. "He's done", he says. Good thinking....it was time the infusion set came off anyway. I told him he needed to get in a tub to soften it.

While he's drawing his bath and getting in, I decide to give Sarah her spelling test. A couple minutes later I hear:

"Got it!! It's off, Mom!"

By the time I got in there, he was getting out of the tub......acting like it.... "ain't no thang."

"No big deal, Mom. Here....(as he hands me the infusion set.) Can I play outside now?"

So that was that. Nothing eventful. Thanks for your prayers.....guess it was a breeze. He didn't even bleed, no rash, just a tiny hole where it was placed. I asked him all sorts of questions because I was curious to know if it just started coming off on it's own, or did he rip it off? He says he didn't look he just ripped it off!!

I took the opportunity to show the girls what eventually will "feed" J.J. his insulin. Here are a couple pic's from today!

I'm trying to show the cannula in this picture. This is what is in J.J's skin. A needle is used to insert the cannula, but it is then discarded.

J.J.'s skin just after he removed the infusion set. It looks better than I thought it would.

Is that your final answer?.....

Can you tell hubby is gone? I've got a lot to say!!:-)

I just read an awesome post written for prospective pump parents. In it Sandra outlines how they went through the process of deciding which pump was best for them. After reading the post I just had a clearer vision of what we need to do to move forward in the process.

First, I'm going to call the clinic on Monday and request kindly, but firmly that they give me a final answer on the donated pump. It's holding us up. If we can't use it, I need to spend more time researching pumps.

Also, the article helped me realize the process our clinic uses to help us make a decision on the pump is, well.....lame!! I think they just assume we'll use Medtronic. I'm not saying we won't, I just want to try different pumps before I make the decision. So.....

I'm going to ask them to put J.J. on another trial with an Animas pump. That way we can compare at least infusion sets, size, and weight. Since our clinic doesn't do a saline test it really is hard to see how we'll like the electronics.....bummer of a deal.

Finally.....if the clinic is not willing to help.....them I'm calling all of the companies we are considering. I've done my online research, but I want more hands on feel for them. If I have to have all the reps come to my house and "sell me" their product that's what I'll do!!

As I keep saying.....PEOPLE!!! THIS IS A $6,000 DEVICE!!......I need a bunch more information before I just "decide". I even told the CDE so much this week....she just smiled and said "uh-huh".

So there you have it.....a course of action.

As a side note.....if you happen to be in the blogosphere this evening and made it to the end of this post, would you pray for tomorrow. I have to take off the infusion set. We've been told this is where a lot of the pain can come from. I plan on having him sit in a tub for a while, then removing it, but he's already putting up a fuss about it.....he probably overheard the CDE talking about the removal process last Wed.:-(

Nurse Educator called....

This will be a quick one....as we are headin' out the door.

The N.E. called me back this morning and said we probably hit a surface capillary, but it shouldn't be a problem. She told us to continue with the trial and take off the pump tomorrow or Saturday. She said there might be more blood released when we take it off, and he'll probably need a band-aide on it after it comes off. She said it happens more when there isn't anything flowing in the tube.

Last night I had visions of waking up this morning and seeing the reservoir filled with blood, like when they draw blood at the doc's office!!!:-) However, this morning, there was only a bit more and most of it was dried up...so I wasn't as concerned as I was last night.

I'm not sure if this is a good thing, but J.J.'s been using the pump for a cell phone!!! He pushes the buttons and pretends to call people. I told him he won't be able to do that with the real one. As I'm saying that to him I am really hoping there is some sort of child proof lock on those keys.....I can just see him giving himself too much insulin or turning the thing off.

Gotta run......

Pump Prep Class.....

J.J. holding his "dummy" pump. This pump has no insulin or saline in it. We are just trying it out for a few days to get a feel for insulin pump therapy.

Today we went to St. Paul for Pump Prep Class. It was a lot of repeat information that has been drilled and drilled since the beginning. Kind of seems like kindergarten talk at this point in the game. I suppose they are just making sure we understand all about carb counting, and what a hypo looks like and what to do with ketones, and hypers...and....and....and....

It wasn't until the very end.....almost 2 hours later...that we were given new info. We were shown how to hook up the pump....or insert his first infusion set. I asked that J.J. be numbed for his first insertion. I want this to be as attractive to him as it can right now. I don't want him turning away from it without even trying. They placed a patch of numbing cream on him, then J.J. watched another young man get his first infusion set placed.

The other boy didn't flinch and said it didn't hurt, which you would think would help J.J., but it didn't. J.J. for some reason got even more scared. Don't ask me why. He does that sometimes with his shots. We trudged ahead......I inserted his very first infusion set in his bum since that's the place he has the most fat right now. There was some pre-set fussing, but after I was done he said he didn't feel a thing. I don't want to be dependent on the numbing cream, so hopefully we'll wean off quickly.....but then again, if it's what it takes for him to be on the pump, it's what we'll do.

We put the set on his bum because he has the most fat there.

They put the pump on him without any saline, just an older model, dry pump They said in their experience it was more of a hassle than a help to have the saline in it. So for the next few days he'll just get to feel for what it's like to have this thing attached to him 24/7.

Doesn't it look huge??

It is kind of big for him. It was leaving marks in his stomach from the seat belt pushing on it. So on the way home he said he didn't want it anymore. I think a pump pack will be nice for him so it won't jab him as he plays. The first thing he had to figure out when we got home was how to change his pants. Then he had to figure out how to go to the bathroom.....he still pulls his pants down to his ankles!!:-)

The next few days should be interesting to see how this new gadget will work in our lives. How this will now change everything AGAIN.

As I was typing this J.J. was getting ready for bed and we noticed blood in the tubing. Not a whole lot, but enough to make me want to talk to someone about it. The nurse didn't mention anything about what could go wrong. That frustrates me right now.....I even said to Jason when we were leaving...."You know they make this pump stuff sound so easy, it's such a breeze, no problems, the best thing to happen to diabetes......but you know for sure there are problems and frustrations just like anything else." So anyway..... Yes, I am a bit concerned. I figure something isn't going right. It's not an emergency, so I'll wait until the morning to call the nurse. I'm glad we aren't "live" with insulin right now.

The clinic still hasn't decided about the donated pump. So we were not able to start the process of filling out paperwork etc. I just have this gut feeling that they are going to deny my request. Seems like we are somewhat "famous" in this clinic....no matter which CDE I talk to they always say "Oh, you're the ones with the donated pump". The CDE today hinted at there being liability issues....afraid we'll sue them or Medtronic if something were to happen. As soon as she said that, I figured they were not going to allow us to use the pump we have.

So I guess now I'm back to figuring out which pump. This clinic really pushes Medtronic....in their own way. Technically they can't recommend any pump. The CDE had a Medtronic "dummy" pump and infusion sets out before even asking us what we were looking into getting. Which begs the question....how in the world am I supposed to know what we should get??? They really haven't told us a thing about any of the pumps. I have a hard time buying a $25 item without a ton of brand comparison, how am I supposed to figure out a $6,000 item.

So that was our day with Pump Prep. I'm wondering if our 3 day trial will end up being an 18 hour trial. They may want me to remove the site. I want to take it out, but I also want to get a good few days under our belts so we can get a feel for living with this thing. Gee....just what I needed....more stress!! I'll keep ya posted.

Pump in Hand.....

Medtronic 512 Insulin Pump (on left) & Meter

I picked up the donated pump on Friday. They sent along the meter that links with it as well. I still haven't heard from our clinic about a final verdict on whether we'll be allowed to use this pump. I trust that all will work out for good. Even if we do have to buy a new one, I know all will be at J.J.'s best interests.

We may end up holding off on the pump until fall when J.J.'s insulin needs have increased. We may see good results with MDI this summer with the extra outside activity. Then as his honeymoon wears off and he needs more insulin in the fall it may be beneficial to put him on the pump. We'll have to wait and see. We are still going to proceed with pump training, so when the time comes we'll be ready.

Since our endo appt, we've kept J.J.'s numbers lower, but unfortunately as we predicted they are a bit too low for our comfort level. Although I do like seeing the average lower on his meter, I just hate that he's truly going "low"---i.e. below 60----or he is in the buffer zone a lot ----60-80. So basically, what do "the forces that be" want.....high or low? We'll keep tweaking a bit.....maybe a good middle ground can be reached.

Thanks to the D.O.C. for the Smarties tip!! Smarties have been perfect for raising J.J.'s low(er) numbers. J.J. doesn't really need the full 15g of carbs to get him up, so just one roll of Smarties at 6 g's does the trick!! Plus it was one of his favorite treats before being diagnosed. I grabbed a whole bag on clearance at Wal-mart this week. Doesn't quite compare with Scott's stash, but it will do for now!! Plus they are perfect for him to tuck in his pockets!! When the N.E. showed us the glucose tabs in the hospital I nearly choked......or knew J.J. would choke if I tried to give him one!! They are HUGE......but Smarties are just right!! So thanks for the tip guys....love it!!

As I end today I just want to say that as any household we have our good days and bad days. The weeks that Jason is out of town are harder, and especially the weeks he's out of town and I'm in that "tired" week of the month.....the two always seem to coincide....hmmmmm....I wonder if he does that on purpose!!! I'll have to have a chat with that man!! At any rate I wanted to end with a good day, and a "fun" picture.

This was taken Friday afternoon. Jason came home early and surprised us with a few kites. Here is J.J. flying a kite for the first time!! As I look at this picture I can see the fullness coming back into his face. Yippee!!