Wednesday, February 23, 2011

7.0!!!

We went yesterday morning to Dr. A., (the endocrinologist) for his every 4 month appt. I was nervous and excited at the same time!!! Really looking forward to his a1c reading - keep your fingers crossed for below an 8 - or close to a 7 would be great!!! (kind of like a hemoglobin test, but looking for diabetes high blood sugar markers...)

So, we've got Jimmy's results!!!
We're at a 7.0 A1C... I feared it would be below a 7 with the lows lately, but... I'll take it! Without the lows, it would have been a 7.5 ish - Pretty good!!! Of all of his readings, he's got 14% that are in the low range. They want it to be only 5% or under. We just changed a bunch of things - one being that we're not going to correct at the 10 a.m. snack anymore (regardless of whether or not he was corrected for breakfast.)

We also changed overnight basal rate as well as the night time snack bolus. We'll see what this brings!! All of which are an easy fix for any md professional, but ALL NEW TO US!!!

On a positive note, he grew over 3 inches since his appt in November!!! Woohoo!!! Also gained 3 pounds!!! Woohoo!!! We saw Dr. Ay instead of Ai... She was very pleasant, but Rachel had already told us everything we needed to know and basically had already recommended all of the changes the dr. was going to make!! They've really got a gem in Rachel - something about her is just quite super hero -ish!!! I couldn't imagine going through this without her!!!

Got an appt for Jimmy w/ the eye doctor on March 3rd... Keeping my fingers crossed that it goes well! He's been monitored since he was 2 since Jenna had "ambliopia" if thats how it's spelled... But now, it's more important than ever to make sure his vision is ok... He seems to be more light sensitive than ever (he's always been light sensitive with his blue eyes...).
Started communicating with people on "juvenation" which is a blog site w/ JDRF. Even got a new follower!!! Will contact them as soon as I get a moment to breathe...


One more thing... Jim complained to the dr. that I don't sleep - and inquired how to fix that...
Dr. Ay more or less agreed that it was ok for me to stay up until midnight to test him and that one of us test him at 3a.m. There's no other way... It's awful, but necessary... There went Jim's theory that sleep was more important... maybe for the kids, but not for us. We gave up our rights when we had the kids. What's some more grey hair, right??? I'm willing, and after last night, I think he is, too.

You see, last night, I decided to retire at about 10:30 - even though I wanted to stay up and test him at midnight. I told Jim that Jimmy needed to be tested at midnight and at 3a.m. Since he told me that he felt it was important that we all get our sleep... I put it in fate's hands. I told him where the glucagon was, gave him the tester, and went to sleep (although I didn't sleep very well).

He woke up at 3 a.m. and tested Jimmy. He was in the 300's. YIKES. He had to wake me up to find out what to do, and wound up staying awake for the next hour on his own, worried, about what the next reading would be...

In the meantime, a midnight reading would have revealed a high, and we could have avoided the 3am high.

Lesson learned. I'm going up soon to test him at midnight - at Jim's request (he doesn't want a repeat...). If I test him at 12, then he will hopefully be fine at 3am.... At least, more often than not...

We'll get it right - just over nights is where it's at now...

Totally looking into the sensor. Better nights to be had... Details to come!!!
Peace,
June

Monday, February 21, 2011

Alcohol wipes...

I might be the worst mother in world...

He was told to grab his tester before we got into the car to go meet his friend for lunch and a movie today. We were almost there when I asked him if he wanted to test in the car or at the restaurant.

He forgot his tester.

Not the end of the world -- we weren't going to be too late, but it was just a pain. Note to self - always check that he has it - I usually do, but I guess my brain is on vacation mode this week!

So, now we're back on our way... He opted to test himself before the restaurant so his friend didn't see him - sometimes he wants you to watch, and other times he doesn't want to be seen testing... maybe he just wanted privacy - no big deal...

We've been having an issue lately with him testing. He simply doesn't want to. Poor kid. We're looking into the sensor that will monitor his levels and will mean less testing, but in the meantime, he still has to test at least 6 times a day.

Another glitch is that - when he tests, he hates using an alcohol wipe. It's faster (and lazier) to just test and then wipe the blood on a tissue (or his shirt, or the tester case, etc...) Then, I noticed that when I made him use a wipe, he'd wipe one finger and use another, so he didn't have to wait for it to dry. His school nurse noticed as well... he's a stinker, but it needs to be done the right way. It's not blowing a nose, it's testing BLOOD. The alcohol wipe is necessary.

It came to a head today.

We were in the car on the way to lunch and as I mentioned, he wanted to test before we got there. So, I reminded him to use a wipe. He said he did, and gave me the tester. I asked him to give me the wipe so I could put it with the garbage. He said that he already shoved it in the pocket of the seat. I told him to get it and give it to me...

As a teacher, I know what it looks like when a child is looking in their backpack or desk for a homework assignment that doesn't exist. This wipe he was looking for clearly didn't exist. He lied to me! He eventually admitted that he hadn't used a wipe after all!

I wanted to turn around and bring him home - skip lunch and the movie as his punishment, but would that have punished his friend who was waiting for him???

Here's why I feel like the worst mom that ever lived. I'm punishing him for lying, but is he going to be mad at me for it (which would be fine) or is he going to be pissed every time he has to test himself? I fear I made the wrong choice to punish him (he lost tv for the rest of the day).

The rest of the way there, I lectured him on why it's important to use a wipe, and that his diabetes doctor would not be very happy if he found out that he wasn't doing the right thing - the healthy thing - He said he would do the right thing.

He's 6. I know. but the diabetes MUST be taken care of to a "t" if he's to live his life without complications. Can he have candy and ice cream and forget to test here and there??? Yes, but if it's such a simple thing such as using a stupid alcohol wipe - I have to win that battle, right???

I just feel so bad for him that it's a battle that he even has to have.
Peace,
June

Sunday, February 13, 2011

Angels exist.

Just sighed as I was logging in to post.
Go ahead, sigh. Feels good, huh? We need to take time here and there in the form a sigh to stop, regroup, and well, just get ready for what's next...

I encountered a symphony of angels today.

Go back to last night when I discovered that we no longer had any site changes left. (read the last entry before you read this.) Not that it was the end of the world, but Jimmy has gotten used to having no shots since we started the pump. The idea of shots sent my poor little man's head spinning. After talking with the doctor via the answering service, I gave him the shots last night, and he cried himself to sleep (and as a result, so did I.) I hate that he has to endure this, and will have to for the next 90 years...

So, this morning, I did all I could possibly do. I called Medtronic, and they said they would RUSH out 2 emergency infusion sets - that would arrive early Tuesday morning. Ugh!! what kind of rush is that???

Angel number one: I facebooked my nurse friend who was there the whole first day when Jimmy was diagnosed -her son is also a diabetic. She said she had extra site changes and the angel she is, she even offered to assist in in putting the site in (it turns out that there are different infusion types, and we don't use the same one...) So, I told Jimmy that we would go to the hospital and our favorite hospital Nurse was going to put in a new site so he didn't have to have shots while we waited for the mail carrier to bring us the new sites. I think it was probably the word "hospital" which was the reason that he bolted out of the room. Like lightening, he was gone. Poor kid. So, there was my first angel in our corner. (thanks J!) It was an amazing offer - for her to have reached out to help us - it meant so very much, and we're so very grateful!

Jimmy was ready to ride out the shots until his shipment came in...

Angel Number 2: Just to give it a shot, I figured I'd reach out to Matt (our Medtronic Angel, a.k.a. Molly's brother.) I sent him the following email early this morning:

Hi Matt, First off - LOVE THE PUMP!!!!!
Jimmy is doing so very well, and we're so proud of him - he's even trying his own site changes the past couple of times, which leads me to the reason for this email... hoping you get this today... if not, no worries...

Last night at midnight, we discovered that we were out of infusion sets... My husband and Jimmy are learning, and they use 2 or 3 infusion sets when they try to get it right... So, noticing we were down to about 1/2 dozen, I placed an order last Wednesday, but it's not due to come until this Wednesday.

When I checked him at midnight, he was a 400 +. Turns out, the site had become dislodged. Discovering we had no more infusion sets, I panicked and called the answering service for Dr. Aisenberg. We were instructed to give him both levemir and novolog via the shot pens. My heart broke for my Jimmy when he heard the shots were coming. He cried himself to sleep. But, I now know that he is truly on board with the pump!!!!!

So, I called medtronic and they're shipping out an emergency supply - but it won't get here until Tuesday. Our regular shipment is not due until Wednesday. There might be a chance that his nurse at school has an extra set, so we might be able to change it tomorrow... BUT, if you happen to be in the area, would it be possible for us to come an pick up any extra sets you might have? I just gave him his shot again and the poor kid was so upset... He'll live, but I thought I would try reaching out to you.

As I said, no worries if you don't get this today - hoping this email finds you well!
June


Ok, so now, we wait and see... We can hang in there until Tuesday, and we're competent in giving the shots, but he's 6 and so used to the pump now, and so reluctant to have th shots...

Angel Number 3: In the meantime, I wanted to call Jimmy's nurse at school. I know I have the number somewhere, but where??? So, back to facebook... I sent a message to her family (she's not on fb, but her family is!!) In about 15 minutes, I got a call from her!!! Turns out, that she had just gotten finished reading my blog, when her daughter called her to let her know that I had requested that she call!! We seem to be consistently thinking of Jimmy and/or each other at the same time... calls to each other, emails to each other, etc... I truly believe that she is another angel here on earth. Jimmy is unbelievably blessed to have her in his corner and on his side looking after him! So, there we were... wondering a way to get into the school to get the infusion set she had in her office... how would we do it when the school was closed??? janitor??? police??? we decided it probably be best to wait until Monday morning... It wasn't a matter of life and death - it was a matter of catering to a 6 year old who didn't want shots (and let's face it - who WANTS shots???!! We'd wait until Monday morning, and she would meet me early at school to help with the site. Jimmy's school nurse is an angel here on earth, who I am so very fortunate to have on my side and in my corner. (Thanks A!!)

Back to Angel Number 2: So, I'm talking with Jimmy's nurse on the phone planning to meet early tomorrow morning to insert a new site with the infusion sets she has... All of a sudden, Jimmy comes bolting into the family room (in the back of the house) waving 2 new sites in the air!!!!! With my jaw dropping to the floor, I asked "Where on earth did you find them???" He said, "Matt just brought them."

ok, time for another sigh... Jimmy's definitely got a guardian angel (and probably more than one) up there looking after him... deep breath...

As Jim and I sprinted to the front door, Jenna let us know that Matt said he couldn't stay. that his daughter was sleeping in the car. I couldn't let him leave. My heart beat out of my chest as I ran out to hug him to thank him for coming to Jimmy's rescue. A "thank you" wasn't nearly enough. A hug was not enough. What do you say or do for the person who consistently comes to your rescue??? His sister was how we were introduced to Matt. The pump is how we fell in love with Matt. And now? well, there I go again with the sigh... ... ... There's no question that he's and angel on earth. I'm positive. He's a super hero. He's amazing.

So, Jimmy's got some angels out there... hospital nurse, school nurse, and Super Hero Matt. I firmly believe that Jimmy will be ok. I've got goosebumps reliving today. His hospital nurse offering to come to his rescue, his school nurse ready to come to his rescue via whatever means possible, and Matt literally going above and beyond what is expected of him in his job. Who works on Sunday, not to mention makes a house call, if they don't have to??? Only angels.

Our deepest appreciation to our angels out there. Jimmy is sleeping soundly (even snoring) at the moment. I've got to go test him for his midnight check, but I know the result will be perfect. I'm asking my angels (here on earth and beyond) to gather all that happened in the last few days and regroup. A sort of "sigh" among all involved. Jimmy would have been ok without all of the angelic intervention, but with it??? No contest. All is well.

Peace,
June


3 posts today!

busy day today - read on!!!

PEACE,
JUNE

oh boy...

Jimmy has been attempting to insert his own sites. WONDERFUL, but tricky!! I went to see Jersey Boys on Broadway for my 40th birthday (thanks Jennie, Julie and Michelle!!!) and Jim was in charge of the site change last Sat. night. It took 3 tries, and they did it!. Monday night, Jimmy insisted on trying it himself. Woohoo! So very proud of him!!! The site however, came out after about 10 minutes. poor kid.

Tonight, Jim and Jimmy changed the site again (it's supposed to be changed about every 2 to 2 1/2 days.) It came out twice. poor kid.

About 3 days ago, I noticed that we were down to about a week of site changes left. Well, if you do the math, he's out of site changes. We ordered a new shipment of site changes, and it's due to come tomorrow or Monday - good huh? Well, we don't have any left since we've been using more than necessary.... I just had to wake up the poor doctor via the answering service. The poor woman sounded so tired (at about midnight.) Since there are no site change sets left, I had to give Jimmy 2 shots tonight. He cried for about 10 minutes afterward. One levemir (long lasting insulin) and one novolog (to cover for his high blood glucose reading he had - over 400!!!!! Ugh.) Evidently, even before the site had come out late tonight (just as I was going to check him close to midnight,) it must not have gone in correctly... It had come out at about 8 pm when he and Jim put it in and then wrestled, and then again at midnight when I just recently went to test and noticed it was out.

That's when I was made aware that we no longer had any site change sets. OMG, to say the least.

The doctor on call walked me through it and came up with a plan. I think we're good to go for tomorrow, but I'm not sure if I'll sleep tonight. Wish me luck at the 9:30 mass tomorrow.
Peace,
June

Saturday, February 12, 2011

Sugar!

We just got back from a "Build-a-Bear" birthday party. Take a guess what my diabetic son named his new doggie...

Sugar!!!

Pretty ironic for a diabetic, huh?

Gotta love him!
Peace,
June

Close one???

When Jimmy was first diagnosed, my sister, Julie, found a book called, The Challenge of Childhood Diabetes, by Laura Plunkett. Being the angel she is, she read it cover to cover to try to understand what the challenge ahead of us entailed. After she finished, she gave it to me. Cover to cover I read it and completely related to each chapter. It was eye opening, informative, and oh so emotional. When her son started the pump, Laura tried the insertion site on herself. I did too, but I hadn't remembered that she did until after our not so close "close one" this morning.

In the book, Laura described laying in her bed with her diabetic son. She was reading and I think her son had fallen asleep - when all of a sudden the bed was shaking. Earthquake? what was happening? She quickly realized that her son was having a seizure due to extremely low blood sugar. If I remember correctly (and I'll have to re-read the chapter to refresh my memory) she had to administer the Glucagon.

FYI: the glucagon is kind of like the equivalent of an epi pen for anaphylactic shock due to a severe allergic reaction. But for diabetics, the glucagon is for if Jimmy were to have a hypoglycemic emergency - where his blood sugar would drop so low and he'd become unconscious and unresponsive, and maybe even have a seizure - that's when I'd prepare the glucagon syringe, and give him the injection directly into the muscle of his thigh (all of his insulin pump sites and shots have been subcutaneous, meaning just under the skin.) To see a video on how to administer the glucagon, watch this: http://www.youtube.com/watch?v=rgXqL2zYlIE&feature=related It explains what we'd have to do in an emergency.

So, back to our "close one." Jimmy had a bit of a low blood sugar reading at 4 a.m., for which Jim woke him up to have him dring some orange juice. All was ok. We all went back to sleep. Time passed, and at exactly 6:58 a.m. I awoke to the sound of a shaking, banging, rattling noise coming from Jimmy's room. Sheer panic ran through me. I knew in my soul that he was having a hypoglycemic emergency. And mentally prepared in my mind how I was going to administer the glucagon. I was ready.

But first, let me set up the scene: Jimmy has bunk beds, but instead of a ladder, it has actual stairs to the top bunk. Here's the pictureLuckily, I remembered that he slept in the bottom bunk last night (he alternates). I thought, thank God, if he had fallen out of bed, he couldn't have fallen far, or down the steps. It's amazing what runs through your brain in the 30 seconds leading up to arriving to your supposed emergency. So I shot out of bed and bolted into his room. Can you see how bottom bunk has drawers that pull out from under it? He had pulled out one of the drawers completly and was, for some reason, head first under the bottom bunk, where the drawer should have been. WHY???? No hypoglecemic emergency at all!!!! He was looking for "bluey!!!" Huge sigh of relief could be heard through out my house!!!

Let me explain what "bluey" is... Jenna had a pink baby blanket (which she still has a piece of saved in a special place.) When she was a baby, there was a song about "Bluey the blue, blue blanket" which of course we changed to "Pinky the pink, pink blanket" for her. To this day, she'll pull out her piece of pinky and remember the good old days!! lol! Well, when Jimmy came along, his blue blanket became known as "Bluey". Bluey is a boy, and its favorite color is green. It's just about his best buddy in the world and they even get into trouble sometimes!! It cures cuts, scrapes, hurt feelings, and most importantly, helps him sleep. He was just about done with bluey at 5, but when he was diagnosed with diabetes, bluey was resurrected and given the highest status again. It never leaves the house, but he's like Linus from Charlie Brown with it... never far from his side at home!!!

So, at 6:58 this morning, he must have reached for bluey and couldn't find him. In my disbelief, I said, "Jimmy, what on earth are you doing?????" He said in his cutest little boy voice, "I can't find Bluey, I think it must have fallen down here." (in between the bed and the wall, hence him removing the drawer, and diving under the bed to look for it. Which explains the racket I heard that woke me up!!!!!)

So, what I thought was a hypoglecemic emergency was not even CLOSE to a "close one!!!!!" Thank heavens.

I'm going to watch the glucagon video now so I'm certain to be ready if there ever is a true "close one!!!"
Peace,
June