3 Full Days on the Pump

OK, we've made it through the first few days. I've wanted to pull my hair out a few times, but it's not been all bad.

First, the good news. I haven't had to change the set again. It's been working OK. His basals haven't, but that's another story. His sugars after I posted yesterday ranged from 174-244. When it got to 244, I inspected the site and saw some pink in the canula. I called Animas. They took my name and number and a very nice tech person called me back in a couple of minutes. I explained the problems I had been having with the sets and that now when I look at it I see pink (? blood) in the canula. The lady I spoke with said she had a PWD living in her household and sometimes you might see some pink in the canula and everything would be fine. She told me to just keep a check on his sugars and call the endo. as needed. She also said they make a comfort short that I may want to try since Riley is so young and doesn't have very much fat on his body. She was very understanding. And her encouraging words kept me from ripping out yet another set. His sugars during the night were: 186, 130, 110, 204. He was 183 when he woke up. The reason he went up from 110 to 204 is that he got 2 peanut butter crackers. I'm just so afraid of nighttime lows. I spoke with Dr. M this morning and she said that she thought that his sugar would have been fine without the snack and that if I feel the need to feed him tonight, to just give him one cracker instead of two and see how it goes. He did spike up at 10 AM today (to 337) but came back down on it's own.

I faxed all of the sugars to Dr. M and she called me back. She made some changes to his basal. Now from 8-9 AM, he gets .075 and from 9-10 AM, .05. Then alternate between .05 and .075 every hour until 5 PM and then go to .05. She's keeping the nighttime basal the same for now.

My nervousness is dissipating a little now. I've calmed down a bit and decided he's not going to go into DKA at any moment. I've realized that I just need to chill and stop checking his sugars so much.

So, that's how it's going for now. It's a little better than it was.




As a side note, Gonzaga is playing the West Coast championship game tonight at 9 PM on ESPN. The game last night was very good. Gonzaga beat USD in overtime. Even if you're not a basketball fan, just flip to the game for a second and watch Adam Morrison in action. It gives me hope to watch him play. Riley really can do whatever he wants!!

What did I get us into?

I knew that adjusting to the pump would be hard, but I had no idea how hard.

So, we now have set number 3 in since he started on Friday. He spiked up to 378 last night. I changed his set. Since he was high and was woken from his sleep, he screamed like a banshee. ( The first thing Holden asked this morning when he got up was "Why did Riley scream last night like someone was trying to kill him?") By the way, this set also had blood in it that was clogging it. So, I couldn't just not give him a correction. His sugar was so high and I didn't know how long he'd gone without insulin. So, I think I'm being conservative by giving him .3 units. (The pump recommended .85) I took into account that it was 11:30 at night when he got it. Long story short, I kept checking his sugar to make sure it was coming down. When he got down to 73, I gave him his trusty drinkable yogurt. 15 minutes later, it was fifty-freakin'-eight!!! Now, how did it drop so much after he got his 15 g carbs.? Keeping in mind that he would probably rebound I fed him one cheese cracker and rechecked 15 minutes later. Now he was 118. I could live with that, he was coming up. But, alas, then came the rebound, 286. He woke up at 214. He stayed in range until just before lunch when he clocked in at 49. Once again, Danimals to the rescue. Got him up to 124 after 15 minutes this time. Then, he had lunch. Next sugar, 290. Are we rebounding again? Or is his set screwed up again? I check after his nap and he's 326. I gave him a conservative amount of insulin again. (Screw the no corrections in between meals. This is my baby we're talking about!) The last sugar I checked was 294. Down a bit, but not great. I think his set is OK, he just rebounded again. I'm going to deplete all of his glucagon reserves if I keep this up.

Riley is currently outside playing ball with Holden. Holden is such a sweetheart. He has always been what I call "tender-hearted". He can't stand to see other people hurt or in trouble. He's the one that always befriends the kid that everyone else picks on. I'd like to take all the credit for it, but I can't. I did raise him to be nice to everyone, but I think most of it is just his wonderful, big, heart. Anyway, when he heard Riley's last sugar, he said, "Won't it help his sugar if he goes out and plays?" Since, no ketones are present I say yes. So, Holden bundled him up and took him outside to play. Riley was just grinning from ear to ear when they walked out the door. I'm going to go check his sugar now and see what's going on. It's almost supper time anyway.

Am I ever going to get to where I trust the pump? I feel like I'm putting it in right. It last all day, but then at night something happens. What am I doing wrong?

Just as I was getting ready to end this and go out and check Riley's sugar, Holden walked in and said, "Do you want me to check his sugar?" So, he did. It is now 233. It would go up if his basal wasn't working, right? Now they are out playing ball again. What did I get us into? It will get better, right? Please tell me it will.

The first 29 hours

So, we've been on the pump for real for more than 24 hours now. It's already had his ups and downs. I was changing his set at 2:30 this morning. More about that in a minute.

First, I want to tell you how it is set up. He's getting a basal of 0.025 from 12 AM until 8 AM. Then, he switches to 0.075 from 8 AM to 12 PM. Then, he's 0.05 from 12 PM until midnight. That's a total basal of 1.2. Before the pump his Lantus was 1.5 units and his NovoLog was 1.5 units (not counting corrections). But, he'd been running a little high most days. His target is 160 +/- 10. His sensitivity factor is 250. And his carb. ratio is 1:50.

I don't think I had let anyone know that we also had an endo. appointment yesterday. We went first and got his pump started on insulin and then 2 hours later we were in the endo's office. First things first. His A1C is 7.6 (yeahhhh!!!!!). I know to some adults that may sound high, but a normal A1C for Riley's age is 7.5 - 8.0. It was 7.8 in December. But, even with that good A1C his numbers have been "choppy", just so up and down.

I've read three books about pumping. All of them were recommended by Sandra in this post . All of them were very helpful and I learned a lot. I highly recommend them to anyone that is thinking about trying the pump or is in the process of a getting a pump. A couple of the books had very short chapters about toddlers on the pump. But, other than that they are pretty much geared towards adults. So, I wasn't really sure how the Dr. was going to do things. I had an idea. It wasn't anything like I thought.

I had faxed a week's worth of sugars from the pump start so she could look at them and figure out his basals from there. When we left the pump start, we were on a 0.05 basal 24/7. That was just a starting point to get us to the appointment. Then, she included us in the basal adjustments. I am very impressed with her knowledge. She knows how freaked out I get from the lows, so she actually started his basals a little lower than what she wanted just because I told her I'd rather he run a little high and up his basal than run low and have to decrease his basal.

So, here's the plan. For now, no insulin between meals. Even if his sugars are a little high, she wants us to wait until the next meal. This is what we were doing with injections anyway. She said if we start correction every time he's a little low, she will not know how his basals are doing for him. I guess she's trying to avoid the whole fasting thing since he's 3 and he's actually lost a pound since his last visit. She really wants him to eat. She wants him to have a 15g snack every day at 3 PM and a 15g snack (with fat and protein) at bedtime. She says the key for now is consistency. This all sounded great to me, until we actually started doing it.

His first sugar after being connected with insulin was 321. Keep in mind, he hadn't had his morning Lantus dose, so this wasn't too surprising. He got a correction of .55 (we hadn't had the endo. appointment yet, so we didn't know about the whole no insulin between meals thing.) His lunchtime sugar was 210. At 3 PM: 144. He got his 15 g snack. One and a half hours later it was 228. I expected it to rise, but was surprised that it didn't rise more than that. His pre-supper sugar was 179. So, I'm doing a little happy dance. But, I danced too soon. His pre-bedtime snack sugar was 272. Ok, so I try not to panic. He had some pasta at supper and I'm thinking maybe that it's still working on his sugars. Michael and I had a little round about giving him a bedtime snack. I was against it, but his argument was that the Dr. wants consistency. I'm hoping that a bedtime sugar of 272 is not going to be part of this consistency, so I forego the bedtime snack. My thinking was that if the set was bad it would make it harder to know. If we gave him a snack, of course his sugar would rise and I wouldn't know if it was just the snack or if he wasn't getting his basal. Now, we're not supposed to correct and she was very adamant about not correcting after supper since his sugars drop so much at night. I check it every hour thereafter. It continues to hover between 272-288. Then, at 2:30 he's 309. Ok, I'm done. The set is coming out. I removed his old set and it was clogged with blood. Now, at least I know what the problem was. I think I even know what caused the problem. He was running around last night. Michael was chasing him and he bumped into the entertainment center and said "Ow!" He was holding his little butt. I looked at the site. It wasn't pulled out and Riley quickly went back to running around. I think he may have bumped the site and caused it to kink.

Luckily, Riley slept through the site change. The only thing he did was when I put the needle in was pick his head up for a second and said "Can't we just go to sleep?" Then, his head was back on the pillow and he was back in la-la land.

So, now we have a sugar of 309 and I'm thinking he hasn't had in basal in about 6-7 hours. What to do. I put his sugar in the pump. It suggests a correction of .35 units. I go against medical advice and give half. He got a dose of .15. One hour later, he's 140. I'm not really sure if I should feed him. When he was on injections I would, but now his basal is lower at night, so I'm not sure. An hour and a half later I find out that I should have fed him. He's now down to 50. He gets his trusty drinkable yogurt which usually dose the trick all by itself. But, I panic and throw a few cheese crackers in the mix. He goes up to 105. He wakes up with a sugar of 287. Now, is it that I overloaded him with carbs are is his set not working properly again? He eats breakfast and gets his bolus. An hour later he's come down a little, to 239. I'm thinking his set must be working because after eating if he didn't get his bolus, it would go up, not down. 2 hours later it was 195. Now, I'm feeling better. But, not for long. At lunch his sugar is 63. We get him up to 97 before he eats lunch. He gets his bolus. At his 3 PM snack, he's now 277. AGHHHHHHHHH!!!!!!! I was lying down for a much needed nap at the time. Michael gave him the 15 gram snack that was ordered. I just checked his pre-supper sugar and he's now 258. He's eating now. Then, he'll get his bolus and we'll go from there.

Here's what I think is happening. I think his numbers where good yesterday because he still had a little bit of Lantus thrown in the mix. One book I read said it takes 36 hours for the Lantus to go away completely. That means he was getting a little bit extra basal until about 9 PM. This also helps explain why it took so long for his sugar to really go up after his set kinked. ( If it did kink when he bumped it.) This leads me to believe that his basals are too low. But, the endo. really stressed not to jump at changing them so quickly. That's why she wants consistency. So, she can really see what's going on. I believe his low today may have been caused by increased activity. Holden had basketball practice this morning. (He's on an AAU team.) Riley ran up and down the bleachers for most of the practice. And me, being a new mom of a pumper didn't think to suspend or decrease his basal while all of this was going on.

I have the Dr's cell and home number. She didn't really want to make any changes until Monday, but told me to call this weekend if I was very unhappy with his sugars. I'm going to hold off for now. If we continue with the way things are I'm calling her in the morning.

He just got through with supper and got a 1.05 unit bolus. This is a lot for him. I'm going to check in an hour and see how it's going.

That's how pumping has gone so far. I know it will get better once we get his basals straight. I still know we made the right decision to put him on the pump. Even though we're not correcting highs now, we will eventually. I'm still happy to be able to give such small amounts of insulin. I'll keep everyone posted.

Everything is going well

Just a quick post to let everyone know that everything is going well with the pump so far. I am just amazed at how well his sugars have already evened out. I am anxious to see how his sugars do during the night. I'll write more tomorrow.

PS : Riley gets so excited everytime I bolus him. He just grins and asks, "No shot?"

T minus 1 and counting

Tomorrow is the big day and I'm soooooo excited. I can't wait to give those small correction doses. Right now, he usually doesn't get corrections until his sugar is >280 because 1/2 unit insulin drops his sugar so much. I hate having his sugar that high and doing nothing about it. I get him to drink water, but that's about all I can do. For example, his sugar at bedtime last night was 255. He got a small 3 g snack. I didn't give him any insulin because of the drop that it causes. At 3 AM, his sugar was now 275. Not sure why his sugar went up. I'm sure that the snack didn't do it. It was only 3 g. My husband put the sugar in the pump. It said to give him .35 units of insulin. I wish!! ( I told Michael I would probably half that dose in the middle of the night and give .15) I just had to lie there awake and pray that his sugar would go down and not up. At 6 AM he was 190 and at 8 AM, 130. His sugar drops about 25 points per hour between 2-8 AM. I've used this formula before to determine whether I need to feed him or not in the middle of the night. Hopefully, soon I can throw that formula out the window.




I am actually counting down the injections now. Baring any corrections, he will only get 3 more shots. This morning when I gave him his Lantus and Novolog I told him this would be the last time in a long time he would have to take 2 shots at the same time. (He won't get his Lantus in the morning since he's going to start his pump.) He just grinned from ear to ear. And so did I. My reason for wanting to start him on the pump had nothing to do with decreasing the amount of needle sticks, but now that he won't be taking injections anymore, I almost want to cry I'm so happy. He's really been complaining about the Lantus hurting lately. Well, he just took his last shot of Lantus. Yeah!!!!!

The saline trial has been going well. His site did come out on it's own once. It was due to be changed on Sunday, but I was going to change it after church. No such luck, it pulled out Sunday morning. I'm not really sure what caused it. He had just come out of the bathroom so maybe it got pulled then. I put the set in at the training, so I told Michael he needed to do it next. He did. He did pretty good except it was a little crooked. We got the set in and somehow still made it to church on time. It had to be changed again yesterday. I got my mom to do it then. I'm not sure how it pulled out so easily on Sunday, because I had a time getting it off yesterday. I had to use the Unisolve to get it off. Mom did pretty well too. She didn't even get it crooked. I will be the one putting the sets in. But, I wanted both of them to do it, in case I'm not around one day and it gets pulled out.

I am going to try to post every day the first week he's on the pump. But, I'm not making any promises. I have taken next week off work, so I can be home with him. I've heard the first week or so can be rough while you're trying to tweak his doses. I'm ready for it though. I'm still a little nervous, but mostly I'm excited.

Joy

Artist: Newsboys Song: Joy Album: Newsboys Shine The Hits [" Newsboys Shine The Hits " CD]

You give me joy that's unspeakable And I like it, And I like it Your love for me is irresistible I can't fight it, I can't fight it

If life is water, I was dry as Tuscon dirt If it's a gamble, I'd already lost my shirt If it's a journey, I was dazed without a clue I flipped a "U" back to the first love I ever knew

CHORUSYou give me joy that's unspeakable And I like it, And I like it Your love for me is irresistible I can't fight it, I can't fight it You carried the cross and took my shame I believe it, I believe it You shine Your light and amazing grace I receive it, I receive it

If life's a battle, the invasion is complete If it's a rhythm, I have found the perfect beat If it's a renaissance, I've got a new birthday The world don't give it And the world can't take it away

CHORUS

I'm bowed and broken, everything new All that I need, You're like water to seed And how Your love, rights everything wrong And in my weakness You're ever stronger, You're pulling me backWhere I belong

CHORUS

The above is my song of the day. I have been very joyful today. Even though things haven't quite been going my way lately. (Michael's car finally decided to retire and now we have to buy one with no money. Will they let you do that?) Even with everything going on I've really had a God-given joy today.

"Be joyful in hope, patient in affliction, faithful in prayer." Romans 12:12

How it's going

First, let me say thank you for all your advice to my last post. I really do appreciate it. I am much better now though. I was just having a terrible day that particular day. I was much better the next morning. Blogging is actually my therapy I think. I also think it's OK to feel bad some days. Every day cannot be a winner. No one should expect to be happy all the time. I'll settle for most of the time. I am happy most of the time. I am blessed with a wonderful husband and the best boys in the world. I have a roof over my head and food on the table. My son does have a chronic disease, but it could be a worse disease. There are so many things worse than diabetes. Diabetes is tough and a lot of work, but Riley can live a long and happy life with it. There are parents out there who can't say that about their children and their particular disease. I had a pity party for myself Tuesday. Then, I picked myself up and moved on. Party's over.

First, before I get on with how the pump training went, I want to update on Holden's ballgame. He played in the championship game Saturday. They lost, so they came in 2nd. Not bad, but a win would have been nice. They gave out trophies after the game. Holden got two, one for all-conference and one for all-tournament. I'm very proud of him. I think I'm now going through basketball game withdrawal. Holden has played baseball every other year, but this year he has decided not to play. He's pretty good at baseball too. He's been playing since he was 6. He has decided that it's not fun anymore. I think he plans to play rec. baseball in the summer, but not at school this year. I'm going to try to find a rec. basketball league to get him into. I don't want him just sitting around on his butt until summer gets here.

OK, now for how the pumping is going. So far, so good. We spent about 2 hours learning the basic features of the pump and programming it. Michael, my mom, Holden and I all went. They had an extra pump there, so Mom and Holden took turns programming that one. Then, when it came time for the insertion, I did it. He has the set in his buttock. The endo. recommended he sit in someone's lap for the insertion, but Riley preferred to stand. So, he stood, I inserted it and he didn't even flinch. Didn't even act like I'd done anything at all. He's such a big, strong, brave boy. He just seems to have the attitude that "you gotta' do what you gotta' do" and I hope he stays that way.

One thing I really liked was that the endo. had ordered for his basal to be 0.1 from 8 AM to 7 PM. Then, from 7PM to 8 AM, he would get 0.05. That's a basal of 1.5. If you add what he normally gets for meal boluses then it would be a total daily dose of 3. He only gets 2.5 now. I told the CDE that I felt like that was too much and I would rather have him run high and have to increase than to run low and have to decrease. She said that the endo. was very flexible about what we thought the child's needs were. So, he has a basal of 0.05 from 8 AM to 7 PM and 0.025 from 7 PM to 8 AM.
That's a TDD of 2.375. I'm much more comfortable with that. She also took our input on how to set his sensitivity factor. It's very nice to have an endo. and CDE that realizes that we live with this everyday and actually know what he may or may not need more than they do. They know more about diabetes than I do, but realize I know more about my child than they do. I really like that.

So, after the insertion, we put the pump in his pocket and off we went. He was wearing jeans and the pump fit quite nicely. I was worried that he might pull the site out when he went to the restroom. But, we've learned that the tubing is plenty long for him to pull his pants down as usual and still keep the pump right in his pocket. He has the pump in the clip that came with it. We clipped it to his pajama bottoms last night and he slept just fine and the pump stayed put. My mom is currently working on a pump pack for him to wear around his waist. We're going to see how that works for him. They are kind of expensive to buy and my mom can sew, so we bought the stuff yesterday and we'll see how it turns out. I'm glad my mom can sew. I cannot sew at all. When Holden had to have a gingerbread costume for his kindergarten play, my mom did it. If I had to do it the poor kid would have been laughed off the stage. His site looks fine from what I can tell. He's done great with wearing the pump and still getting injections too. I had worried about it, but I talked about it with him so much that he just seems to accept it. I can't wait to be able to just push a button on the pump and give him insulin instead of drawing it up (hoping it is actually a half unit) and sticking him with the needle. He's done really great with it. Last night my husband came into the living room smiling. When I asked why, he said Riley had just looked at him and said "I'm so glad I've got the pump." That was music to my ears. I'm so glad he has it too. I know it's not a cure. It's not even close. I still have to guess about what to do with his insulin sometimes. But, for a kid his age, the dosing is so much more accurate than what he can get with syringes. I won't have to fight with him anymore to get him to eat when he's not hungry. (Had that battle at breakfast again this morning.) He can eat until he's full and then he can get a small enough amount to cover it. I've read enough blogs of people with pumps and parents of kids with pumps to know that it is not even close to perfect. There will be highs and there will be lows. But, now when it's high I don't have to give him insulin that I know is going to drop him too low. I can give him what he actually needs. I guess the hard part is still figuring out how much he does need. But, for now, I'm excited and I'm thankful that this technology is available for my son.

One of Those Days

I'm having one of those days again. One of those days when diabetes is all I can think about and I'm just overwhelmed. I feel like I'm drowning in test strips and insulin.

We checked Riley's sugar a record 17 times yesterday. He just kept going so low. So, I kind of overloaded him at bedtime. I am just terrified of him going too low at night, so I tend to overdo it sometimes. His sugar at bedtime was 91, not even close to an acceptable range. (usually acceptable is between 150-160) So, he got ice cream. He gets that at bed quite often because it tends to last through the night. 25 minutes later, he's a still too low 97. So, he gets a drinkable yogurt. When I finally tuck him in, he's a somewhat comfortable 136. An hour and 20 minutes later, he's a not so comfortable 358. He ran high all night and woke up with a sugar of 203. Now, he didn't get any insulin for the 358, but I'll get to that in a minute. I decreased his Lantus back to 1 unit, because all of the lows yesterday really scared me. His post breakfast sugar was 344. Later, he was 367. He had not had any insulin in over 4 hours, so he got a tiny 1/2 unit dose of NovoLog. This tiny little dose dropped his sugar down to fifty-freaking-eight. Yes, you read that right. His sugar dropped almost 300 points in an hour and a half. This has happened quite often. A 1/2 unit of Novo Log usually drops his sugar anywhere from 260-300 points. So, you see my conundrum. What do you do? Just let him run high? I can't give any less than 1/2 unit. I'm afraid if I don't give him anything, he'll shoot up in the 400s. I literally get pictures in my head of dying kidneys when his sugar gets too high. I can't help myself. Yet, because his smart little brain is still developing the lows terrify me too. There is just no winning with this disease. Absolutely no way to win. Diabetes will "one up" you all the time. It will always remind you who is boss. It usually spits in your face too, just for good measure.

I'm sick of this disease. I'm sick of insulin and carbs, and ,my goodness, the test strips are multiplying. I find them EVERYWHERE . They are in the carpet. They are in the car. They are in the yard. I've literally woken up in the morning with a test strip tucked safely in my hair. My husband found one in front of the drink machine at his school the other day. There is only one person who works there who has D, and they use a different machine, so it was determined that the test strip followed him to work.

I broke down at work today. I hate that . I hate to cry in front of anyone, including my husband, but when my mom called me at work today to tell me that Riley's sugar was 367, I just lost it. Of course my co-workers were looking at me like I had lost my mind. I don't blame them. They don't understand. They don't really get how hard all of this is. They couldn't know unless they lived it and I don't wish that on anyone. As I was crying, "I can't do this anymore!' just kept going around and around in my brain. But, then I snapped out of it. I have to do this. I have to be there for Riley. I can't give up. I can't slack off.

I know my break down had to do with a lot of factors. For one thing, I am very sleep deprived. You other parents out there know what I'm talking about. Things had gotten better, but now that Riley's numbers have gone haywire in the middle of the night again, sleep is a thing of the past. If I do get to sleep, it's not long before the alarm clock goes off and I'm up and lancing a tiny finger again. Michael does help with this, but I always wake up too and wait to hear those 2 little beeps and then ask, "What is it?" Also, the whole pump thing is stressing me out a bit. Don't get me wrong, I can't wait to start. But, I'm also nervous about how things are going to be.

I'm sorry to dump all this negativity out, but I guess it's better than keeping it in. Thank you all of my invisible internet friends for listening. (reading, whatever) Even though I can't see you, it's comforting to know that you're there and that you get it. I know that you've been there and you've made it through and ,somehow, I will too.

A pumping we will go

I wore the pump for a whole day. I almost felt a little naked when I took it off. All in all, not as bad as I thought it was going to be. Most of the time, I forgot that I even had it on at all.

Riley's sugars have been low, low, low all day. The endo. suggested that I increase his Lantus from 1 unit to 1 1/2 units. I didn't really think it was necessary, but I did as instructed. We increased it on Saturday. He did OK on it until today. In my experience with Lantus it usually takes about 2 days before the new dose takes effect. Does anyone have the same thing happen to them? And why is that? Anyway, he'll go low, then we'll get him up to an acceptable range and then a few hour later, we're feeding him again. Riley gets Danimals drinkable yogurt for his lows. (15g per serving) This always works well for him. They come in a four pack and some times I have to throw some of them away because they expire before we use them all. Well, he got to drink 3 of them today already. For the first time in a long time, he didn't take any insulin at supper. We'll see how it goes. I cannot wait for the pump.

And speaking of the pump. I spoke with Dr. M. Friday. She told my what basal rates she was going to order. She also said that "office girl" was supposed to fax the orders on Thursday to the place that will be doing our pump start. So, I called there Friday and left a message. No return call. I called back today and the person who will actually be doing the pump start answered the phone. She checked and "OG" had not faxed the paperwork, but she said she would call and get the orders. She also scheduled his pump start. We will be pumping saline starting on Thursday and we'll start with the actual insulin on March 3rd (the following Friday) I am so excited I can hardly stand it. Right now I'm just excited, but I'm sure as it gets closer, I'll get more and more nervous. I am going to go watch the DVD now that came with the pump and play around with the buttons. Woo hoo!!!!!!!

(One more thing. The endo. suggested Emla to numb the site before inserting his set. When I asked the CDE about it today she said you can get an over the counter cream called L-amax. Has anyone out there used it and is it as good as Emla for which you need a prescription?)

I'm hooked

First, a little bit of bragging on Holden. His basketball team at school, (he plays JV) came in first in their conference. Now they are playing their tournament. He played last night. They beat the 4th place team by 22 points. So, we go back Saturday to play in the championship game. I can tell most of you don't care much about basketball, since I got zero comments about the Redick/Morrison post. But, I love basketball. I played it in high school. Also, Holden is very good (he is the 2nd highest scorer in high school, including the varsity team) and I'm very proud of him. Also, while I'm bragging, he's in the Beta Club and has a 3.8 GPA. Not too shabby either.

When we got back from the game last night, I was just looking at the infusion sets. They sent me a bunch of comfort (angled) sets. That's what the CDE recommended because Riley is so thin. They did send one 90 degree set with an inserter too, if we want to try it. So, I was looking and wondering what it felt like. So, I opened the package, swabbed with some IV prep, and stuck the needle into my abdomen. Riley watched, but seemed disinterested. It stung more than I thought it would, but after a few seconds it stopped. The endo. wants to use Emla with Riley for the first week or so. Probably not a bad idea. Anyway, I put the set in and thought, "Now what? Do I just pull it out?" So, then I inserted an empty cartridge into the pump and hooked myself to it. I had taken the battery out of the pump. So, it's just an empty batteryless (probably not a word) pump. But, I wanted to see what it was like to wear it. I should have asked Animas to send some saline, but I didn't. Anyway, I'm still hooked to it. I wore it to bed last night. This may be too much info. for some of you, but I don't sleep in pajama bottoms, just a T-shirt. So, I clipped the pump to my underwear. I slept just fine. It may have woken me up a couple of times, but all in all not a bad experience. It stayed put all night (and I toss and turn quite a bit.) I plan to wear it the rest of the day and then take it off. To be honest, I'm already a bit tired of it. Most times I don't even notice it's there, but when I do, I just want to take it off. Riley doesn't like me wearing it, because it means he can't wear it. I guess that's a good thing. He showed it to anyone that would pay him any attention yesterday. I guess he's not shy about his diabetes and I'm so proud of him for it. I've learned that other people tend to take a cue from you about how to act. If you act like it's no big deal they tend not to either. I hope Riley is always this way and just sees it as part of who he is.

Well, I'm going to go call the endo. in a bit and see if she got my fax and see if she's called to arrange my training yet. She doesn't like the company doing it. She has her own group that she likes to do the training. When we went to our intro. to pumping class they said it would only take about a week once the pump came to set up the training. But, the Dr. has to send the paperwork, and we know how speedy she is with that. I'm going to stay on them this time. I'm ready to get this started.

It has arrived

The pump arrived at 9:50 this morning. All my reservations flew out the window as soon as the UPS truck pulled up in the yard. I started jumping up and down. I tore into the box as soon as I got it. There are several boxes of infusions sets, insulin cartridges, IV prep, and a box of IV 3000. I dug through all of those to find that very expensive piece of equipment. And, there it was in it's own box. It's blue and shiny.

Riley is thrilled. I put the battery in and let him play around with it. He kept saying things like "cool" and "neat". So, it's going over OK so far. He's had it with him ever since it arrived. Right now it is tucked into the pocket on his jeans. We are getting ready to leave for Holden's ballgame in a bit and Riley wants to take the pump with him.

After we got it, I called to arrange our training. The endo. asked for 4 days worth of sugars, so I had to go to work to fax them to her. While there, I went to the pharmacy and picked up some One Touch Ultra Smart strips (The meter came with the pump) So, far I like this meter. It is "smart" indeed. While in town, Riley asked if we could go to the park. It is a beautiful 72 degrees here today, so I said yes. We went to the park. He slid and swung and see sawed, all with the pump in his pocket. It didn't fall out. It didn't stop him from doing anything. It was if he didn't have it at all. I know it will be different when he's actually hooked to it. But it kind of helped to ease some of my fears.

While I was swinging him, he kept telling me to push him higher. I did. He said " I can see everything from up here. I feel like I'm on top of the world!" And all I could think is: " That's how I always want you to feel, baby. I hope that's how you always feel."

No pump for you!

We did not get the pump today. Actually, the UPS person brought it to visit, but since no one was home the pump didn't want to stay.

UPS was supposed to deliver it between 12-4. My mom arrived at 11:50 ( I had to work) There was a nice little note on the door that they tried to deliver it at 9:30. Not even close to 12-4. But, they promise to return tomorrow. (between 10:30 and 2:00) Since I am not working tomorrow I should be here to greet it with open arms.

Riley is very excited. He understands that we have to learn to use it first, but he keeps asking questions about it, like "Do I take it off when I sleep?" and "Can I have root beer like Holden when I get the pump?" (This last question prompted me to buy diet root beer, which satisfied him.)

I wish I could share his enthusiasm. I know that this is going to be good for him, but everytime I picture him in my head with this thing attached to his body, I just want to cry.

Well, I'm going to set up vigil at the front door now. UPS is supposed to be here between 10:30 and 2 P.M., which evidentially in "UPS world" means roughly 5 AM.

Happy Valentine's Day

Michael,
Happy Valentine's Day!!! I wasn't able to get you anything, ( that would require having money)but I wanted you (and everyone else) to know how much I love you. I love you now more than ever. You are my best friend and the only person I can share my true feelings with. I don't know what I would do without you. You are a great husband and an excellent father. I know that whatever may come our way we'll get through it together.

Thank you for loving me. Thank you for loving the children. Thank you for washing the dishes. Thank you for rubbing my feet. Thank you for getting up in the middle of the night to get me water. Thank you for adopting Holden as your own and loving him like your own. Thank you for tolerating my bad (horrible) moods. Thank you for letting me cry on your shoulder when the diabetes just becomes too much for me to handle. Thank you for greeting me at the door with "Hey beautiful!" (and really meaning it) Thank you for the past 9 years.

I love you!!! I hope you're day is great. I'm am truly blessed that you are my husband.

I love you!
Penny Lane

I"M SO EXCITED!!!!!

Just a quick post to let everyone know that Animas just called and Riley's pump will be arriving on Wednesday!!!!! I'm so excited I just keep jumping up and down. It ended up not costing as much as I thought either. Yipeeee!!!!! Whoopee!!!!!!! Yaaaahhh!!!!!!!!

WHO'S THE BEST????







It is no secret that I am a huge Duke basketball fan. I have been a fan ever since I was in high school and Grant Hill was a Freshman. Grant Hill is my all-time favorite Duke player. But, have you seen J.J. Redick ? He's just phenomenal. Yet, he and Gonzaga's Adam Morrison are tied (last I checked) at averaging 28.4 point per game. I'm a little torn here. I'm a Duke fan and while I feel I should "stay true to my blue", Morrison has Type I diabetes. So, I think he' s probably had to work a little harder to get where he is. If I didn't have a child with D, this probably wouldn't even be an issue for me. I'd say give the MVP to Redick. Holden and I were discussing it this morning. He thinks Redick should win (Redick is his favorite player). My head says Redick should win because I believe he is a better all around player than Morrison. But, my heart says give it to Morrison, because well, he and my son have something in common. Should his diabetes even be considered when determining the best player and is this fair to Redick? I think it isn't fair to either one of them. Maybe I'll pull for Redick, but not be upset if Morrison gets it. Maybe they could both get it? I guess that wouldn't be fair either.

How do I look?

When I read a book, I visualize the characters in my head. Sometimes I see them as the author describes them or sometimes I see them completely different. Does anyone else do that? It occurred to me today that I do that with ya'll too. Some of you I don't have an image in my head, and others I do. Some of you have pictures on your blogs (Kerri, Sandra, Allison, Keith, Carole,Scott) and that's how I see you. I don't do like I do with books and make up my own version of you, but for you others, I come up with an image all my own. For example, because of Nicole's picture on her blog, I picture her very modern with pulled back (blonde) hair and glasses and very crystal clear blue eyes. I also picture her to be thin and in a business suit. I picture Vivian with dark brown shoulder length hair. I imagine her to look a lot like one of my ex-coworkers, Nancy. Now, Dee, of Herman's Head, I picture him as bald with glasses. I'm guessing that's him looking out of the window on his blog. Julia, I picture her as medium build with shoulder length dark kind of wavy hair. Shannon, for some reason, I picture to look like Allison's identical twin. I think it's because when I first started blogging, I used to get Allison and Shannon confused. Don't ask me why. Allison is a PWD and Shannon is a mother of a PWD. Ellen, I picture you as an older lady. Not old really, just older than the rest. I guess because you're son is older. I also picture you with short blonde hair. ( BTW, I picture all of you as attractive people. I don't picture any of you as being hideously ugly or anything.) Ryan Bruner, I picture to look like a guy I used to date, thin with dirty blonde hair and blue eyes. With some of you I've seen pictures of your kids and I may gather what you look like by those for others, I have no rhyme or reason for why I picture you the way I do.

So, how did I do? Did I even come close with any of you? Does anyone else do this and if so, what do I look like to you? ( No fair for my family to answer.)

Tagged!!!!!

I have been tagged by Shannon at Mom Wants a Diabetes Cure . So, here it goes.

Four jobs I've had in my life

1) chopping weeds in peanut and tobacco fields (yes, I'm from the south)
2) washing school buses
3) cashier at a grocery store (Winn Dixie)
4) medical surgical nurse at a hospital

Four movies I can watch over and over
1) The Wizard of Oz
2) Say Anything
3) Dirty Dancing
4) When Harry Met Sally

Four places I have lived
Well, call me boring, but I've always lived in North Carolina. I've lived in different areas but all of them are not more than 20 miles apart.

Four TV shows I love to watch
1) CSI ( The Las Vegas one only. I can't seem to get into the other ones.)
2) Gilmore Girls
3) Survivor ( Even though I missed the first episode last week. How was it?)
4) How I Met Your Mother

Four places I have been on vacation
1) Orlando, Fla. ( to Disney World and Silver Springs)
2) New Orleans, LA (Mardi Gras)
3) Williamsburg, VA ( honeymoon)
4) numerous trips to the mountains of NC and Virginia (my all time favorite vacation spot)

Four of my favorite foods
1) steak (preferably Ribeye)
2) mashed potatoes
3) Lasagna
4) BBQ'd pork chops

Four websites I visit daily
I don't visit any websites on a daily basis. I check my blog list about 3-4 times a week. Other than that, I really don't get on the computer except to check my email or to research something that interests me.

Four places I would rather be right now
1) somewhere warm ( with my family)
2) with my family (somewhere warm)
3) somewhere warm (with my family)
4) with my family (somewhere warm)

OK, now I tag Christy .



I have to add something to the TV shows. I absolutly love That 70s Show. It is by far one of the funniest shows on TV.

The quest for the pump

Well, the endo. has done her part. Now, we're waiting on insurance. M. called from Animas yesterday and informed me that the insurance was requesting 3 months worth of blood sugars. I record all of his sugars on a homemade chart. There are only 2 days worth of sugars on each page. I thought that was too many pages to fax. It would be about 45 pages. So, Michael and I spent about 3 hours last night taking turns typing about 900 blood sugars into the computer. We plugged along for a while but then the Duke/UNC game came on and we only put in sugars during the commercials. (Yeah Duke!!!!) But, it's done now. I spoke with M, and he sent the sugars to the insurance company today. He said hopefully we'll hear something by the end of the week. That's only 2 days away.

So, tell me why I am scared to death. I keep wondering if I'm doing the right thing. I think it's because I've finally gotten comfortable with the way we're doing things now. I know the pump is going to be a daunting task. I'm just so happy not to be stessed all the time that I'm scared the pump is going to start that all over again. Yet, I know that the pump will help in so many ways. Riley gets 1/2 unit Novolog for every 25 g of carbs. Well, sometimes he doesn't want to eat enough to get 25g carbs. But, if he eats 15-20 g of carbs and doesn't get insulin, then his sugar goes too high if he does get insulin, his sugars go too low. If he's very hungry and ends up eating 40 g, then he still only gets 1/2 unit (since he only gets 1 unit per 50 g carbs) then his sugar goes up high too. Then, there is still the nighttime lows. We almost have those under control now. Riley gets ice cream as a bedtime snack which he likes very much. Without the ice cream, he goes way too low at night. I know with the pump we can decrease his basal at night and hopefully combat those lows. Although Riley would just rather eat ice cream. I've actually gotten pretty good at figuring out how much ice cream he should eat based on what his sugars are. His endo. says I'm "dosing" him with ice cream. Also, I'd be lying if I didn't say the extra costs associated with the pump aren't stressing me out a little too. I work part-time now, 3 days a week. I'm seriously considering increasing to 4 days per week, but I HATE it. I want to be home with Riley more, not less.

Holden did get his learner's permit on Monday. He's done pretty good driving. I've had a few scary moments, but it hasn't been too bad. I feel like my baby is growing up way too fast. I just can' t believe he's 15.

I'll close with some humor from my day. A few weeks ago my mom made Riley a sugar free banana pudding. He absolutely loved it. He only ate a little. When he went back to my mom's the next day my dad had eaten the rest of it. This morning, he was sitting in the back seat on the way to my mom's. He was just sitting there. We weren't really talking. Then, out of the blue he said, "Mom, the next time you make a banana pudding, be quiet about it, so Grandaddy won't eat it all." He started my day off with a smile.

Update on our life

I've been so wrapped up in the Ariel Botzet lately that I haven't written about what's going on. Well, my friends, I think the grieving has ended. I'm not happy that Riley has diabetes, but I'm not sad about it anymore. Actually, I don't think about it much anymore. I guess I do, but maybe I've just gotten used to thinking about it. Does that make sense? For example, when I'm working my mom keeps Riley. Even though she's been fully trained on how to care for him, how to treat highs/lows, and how to count carbs, I still call at lunch to see what his sugar is and how many carbs he's eating. It's not that I don't trust my mom. It's just that I want to know, like knowing will change anything. Well, I'm sitting at my desk Monday and the phone rings about 3:30 PM. It's my mom.

Mom: "Are you OK?"
Me: "Yes. Why?"
Mom: " I was just checking to make sure you're OK. I thought maybe you got sick or something happened to you."
Me: "Why?"
Mom: "Well, you never called and asked what Riley's sugar was at lunch."
Me: "Was it OK?"
Mom: "It was 95. He ate 34g of carbs and now he's taking a nap."
Me: "Wow." (big grin on my face) "I guess I've finally stopped worrying all the time."

It was such a great feeling. So freeing. It's not that I don't care. We're still checking sugars 6-8 times a day and he still gets 4 shots a day. Some times he's high and sometimes he's low but, many times lately he's been just right. I've finally learned to just roll with the punches. I was talking to my husband today and I was telling him that I've finally learned that no matter what his sugar is, we can fix it. If his sugars start creeping up. We can fix it. If he's low. We can fix it. We've learned how to adjust doses on our own. And, we can usually look at Riley and tell when he's low. His eyes just don't look right. We've been through enough highs and lows to realize that we can deal with them.

My life really doesn't revolve around diabetes anymore. Really. I'm not just fooling myself. Checking sugars, counting carbs, and giving insulin have just become a part of an everyday routine. I still hate diabetes and I still pray for and try to raise money for a cure, but we're in a groove. We are dealing with this, and by goodness we will get through this and Riley will grow up to be whatever he wants to be. I once read a mom write that diabetes was just part of her kid, just like blue eyes and a goofy laugh. I always envied that. I couldn't look at it that way. Diabetes was a horrible monster that made me cry every day. Riley's beautiful brown eyes and infectious laugh didn't make me do that. They belonged. Diabetes did not. Well, I'm there now. Diabetes is just a part of who Riley is. It's not all that he is. He's a wonderful 3 year old who absolutely loves to watch his brother play X-box and then spend hours pretending to be the people in the games. He's a 3 year old who woke up the other morning singing "It's a happy day, oh a happy day" And the same 3 year old that walked in the living room the other day and gave me a big hug and said "You're so pretty mama." Yes, I've decided we're going to be OK. I know that some days will be better than others and I've yet to deal with his first sick day, but I know we'll get through whatever may come our way.

Holden's birthday is tomorrow. He will be 15. We will be going on Monday to get his learner's permit. I'm nervous to ride with him. Is this wrong of me? I'll let you all know how it goes after I take my first ride.

Also, I want to raise money to donate to The Lee Iacocca Foundation . Are there any suggestions of what I can do? Any one out there done their own fundraisers? The county I live in is a big Relay for Life supporter. We are always #1 per capita for money raised to find a cure for cancer. That fund raiser is in May and I don't really want to take away from that. Any suggestions?

And, last but not least, an update on Riley's pump. I called Animas Tuesday. They still didn't have the paperwork from the Dr. M. (the rep) said that he had left several messages and didn't know what the hold up is. So, I call and leave a message for "office girl" (OG). I also have the endo's cell number, so I called and left a message on that too. 10 minutes later I got a call from the doc. She usually ask that you give her 2 weeks to get the paperwork done, but seeing that it had been 3 weeks she would do it that day and get it to Animas. She said she called OG and she had received the paperwork. I haven't heard anything since. I'm going to call M on Monday and see if he's actually gotten the paperwork from the Dr. I wonder how long it will take the insurance to give approval.

I hope all of you have a wonderful weekend.

Not to beat a dead horse

Some of you may be tired of hearing about Ariel Botzet and may just want to move on. (see previous 2 posts), but I can't seem to let it go. I found this today and just thought I would share. Some have said why didn't someone try in intervene? If she really was such a bad mother wouldn't someone have noticed? Well, someone did. They reported it, and nothing was done.

I have personal experience with this. I am a home health nurse. Most of the population I have dealt with are the elderly. Occasionally, we may have a pediatric patient. I have made several Adult Protective Services (APS) referrals throughout the years. In fact, I just made one yesterday. I absolutely hate to make one. The social workers that I deal with kind of put you on the defensive and don't seem to think you know what you are talking about. They also seem to not really care. For example, the referral I made yesterday dealt with a mentally retarded patient that I have with Type II diabetes. His house burnt down 2 weeks ago. No one let me know. ( I see him every 2 weeks). So, when I do find out that it has burned down, I go see him. Well, of course his insulin and medicines burned up also. I fix his medicines and syringes for him. So, he went almost 2 weeks without any of his medicines. When I saw him, his sugar was 432. I tried my best to get his caregiver to understand the levity of the situation and she didn't really care either. He had insulin, which I prepped, but did not have his sugar pills. After 2 days of trying to find someone to care enough to get his meds. , I finally made an APS referral. I called at about 3:45 PM yesterday. The lady said "Can't this wait until tomorrow?" " No", I say. Plus, I'm not working tomorrow and it certainly can't wait until Monday. She sighs deeply and says " I was just getting ready to leave for the day" So, I quickly tell her my concerns. She took down some info. and said she'd see if it was worth persuing. This is how it always goes. There have been times when I've done APS referrals and no one actually stepped foot in the house. Once, I called twice about the same patient and still there was no visit made to the house. Two months ago, a APS referral was made about a patient of mine who had bed sores. She apparently had them for a while, but no one had made me aware. The patient was not bedbound. The sores were on her backside, so not visible without making her undress. At every visit I would ask her caregiver if she had any skin breakdown as I do with all my visits. Well, the answer was always "no". Then, a different aide went into the house one weekend and saw the sores and promptly reported them to me. I went out and educated the aide and the daughter. The daughter still did not make a doctor's appointment. ( I had let the Dr. know about the sores) An APS referral was made. The SW went out to the house and looked at the sores. She said the sores "didn't look that bad" to her. This coming from someone with no medical training whatsoever. So, nothing was done. Long story short, 2 weeks later, the patient died from sepsis (infection that started in her wounds and spread to her blood and throughout her body). Hmm, sores weren't that bad indeed.

I have made one Child Protective Services (CPS) referral and really didn't get a whole lot accomplished with that either. This was a baby with numerous medical problems who had a mentally slow, 17 year old mother. They lived in a house with no heat, no running water, and no electricity. This house was absolutely filthy.This, in and of itself is not cause for a CPS referral , by the way. As long as the child has a roof over their heads and is behind adequately cared for it doesn't matter what the physical environment is. The mother was just not mentally capable for caring for this child or giving the medicine. The baby was always filthy. Please tell me how a 2 month old gets so dirty. So, I called several times about this patient and nothing was done until a snake was found in the baby's bassinet. Then, they just made them move to a different house. They didn't seem to care that the mother was not capable of caring for the child no matter what the environment. The mom moved from the 2nd house and no one would give me a forwarding address, so I have no idea what happened to that child.

This is just my personal experience with "the system". I know that it is not always this way, and there are many wonderful social workers out there who go above and beyond the call of duty. I just haven't met one yet. Evidently, Ariel Botzet didn't either. If she had, she might still be alive today.