Wednesday, May 31, 2006

Mixed emotions

Tonight at church Riley asked me if I had any gum. When I told him no, he asked my mom the same. Another woman at church heard what he said and started digging into her purse for some gum to give to him. She called him over and before he took the gum he looked at her and asked, "Is it sugar free?" She assured him it was and he put it into his mouth.

Tears welled up in my eyes. Because I was so proud that he thought to ask...and because he had to ask in the first place.

Monday, May 29, 2006

Adventures in Swimming

We are members of a local beach club. Yesterday was our first time going there this year. I was a little nervous in the beginning. This was Riley's first time going swimming since his diagnosis.

On the way there, Michael and I were discussing what we should do. Should we leave the pump on? Should we take it off and disconnect and keep a check on his sugar and reconnect to bolus him occasionally? I didn't really like the second idea. Michael said he liked the idea of disconnecting him so the pump wouldn't bother him. Riley piped up. "I don't want to take my pump off. I want to keep it on." Well, that settled it then.

So, that's what we did. He kept it on. Thank God for waterproof pumps. And, he did fine. Upon arrival at the beach he was 156. He got a snack (because it was time for one) and off he went into the water.

A little while after getting into the water, I pulled out his pump and looked at it. Still working...nice. At supper time, he was 202 (his highest sugar of the day, I might add). He didn't go back in the water after that, but was still running around quite a bit. A little while later when Holden went to get ice cream Riley got some too. At the time, he was 165. Two hours later he was 123. Have I mentioned how much I love the pump?

I told Michael at one point yesterday that we did all that debating about leaving the pump on or taking it off. But, if Riley was still on Lantus, we'd be trying to decide when to feed him to keep his sugars from dropping. I don't know about you, but we've never had good luck with that. We always shoot his sugars up too high. I am so thankful that we have the pump and can stop his basal all together or just decrease it a bit.

He ran a little low during the night, but that was quickly remedied with a few fruit snacks. Some people drop low during exercise and some after. Riley tends to start dropping a few hours after any extra activity. We've now learned that if Riley has a particularly active day, we need to drop his nighttime basal a bit. The next time he goes swimming that is what we'll do and see how it works. It's just trial and error like everything else with diabetes.

So, that's how our first swim of the year went. We had a really great time and I look forward to going back soon.

And, Happy Memorial Day to you all! Let's not forget the men and women who gave the ultimate sacrifice so that we and others could be free.

Thursday, May 25, 2006

Another reason to hope

Thanks to Kassie over at noncompliant, I want to share this article with you.

You know, I've never given up hope for a cure. I begin every day with a prayer before I even get out of bed. I find it's a nice way to start the day. That prayer ALWAYS includes a petition for a cure for diabetes. I also believe that a cure for diabetes (Type I) will be a stepping stone to find a cure for other auto-immune diseases, such as MS.

Even though my day begins with a prayer for a cure, I don't really think about it much more the rest of the day. I go about counting carbs and bolusing insulin as if Riley will always have to do that too.

But, I realized Monday that my hope isn't just for a cure, but for a normal life for Riley. I know it's possible. I read plenty of blogs on the subject. But, on Monday, it just seemed more real for me.

Holden's school held their annual athletic banquet Monday night. One of the teachers at the school has Type I D and wears an insulin pump. She was taking up tickets at the door. She knew Riley was getting a pump and quickly pulled out hers to show to Riley and he showed her his pump. But, that's not what got me.

She is also a cheerleading coach and had to get up in front of everyone to give out trophies. As she was standing there talking, it dawned on me how normal her life is. She has a good job. She has a husband and two daughters. She was Holden's 5th grade teacher. At the time, I didn't know she had D. She didn't get the pump until after she had Holden in her class. I noticed it one day on her waist. Being a nurse, I knew what it was. That was before Riley ever got D.

Then, there is a boy in Holden's class with D. He plays basketball and soccer. He got MVP for soccer. I just looked at him and realized that Riley will have a normal life. It will be his kind of normal. But, isn't that how everyone's life is? My life is my kind of normal.

I've always known that Riley can have a normal life. As I said before, I've read plenty of blogs about it. But, they are my cyberspace friends. I know they exist, but they just don't seem as real.

We had a meal before the presentation of awards. And as I was dosing Riley, I was thinking that there were two other people there doing the same thing. And to them, it was no big deal. It was just part of life. And that was very comforting to me. It just got me thinking that while Riley may always have diabetes, everyone will not always see him as a diabetic. One day he will be a father. He'll have a profession. Diabetes will hopefully be far down on the list of things associated with him.

And, that's not the only thing that happened at the athletic banquet. May I present to you the Most Valuable Player in JV basketball.....

Wednesday, May 17, 2006

A Happy Birthday Indeed

First, I want to start this post by thanking everyone for their comments. I also wanted to clear up something. This blog is my outlet. I take out my frustrations here. I share my heartaches here. Sometimes I share my joys here. I don't want anyone to think I'm doom and gloom all the time. Riley has never seen me cry over his diabetes. Ever. He doesn't hear me talk about the negative things. That's why I love this blog so much. It's really surprising how therapeutic it is to write out your feelings.

I could see how someone might read my blog and think, "Oh, that poor mother. She seems so sad all the time." Well, that's not me at all. I know I'm blessed. But, when I have those few bad days it helps so much to talk about it here. Instead of Riley hearing it, you get to hear it. Thanks for listening.

Now, on to the birthday. It was a beautiful day here Saturday. The weather was perfect. We had an outside birthday party. It was just close family (and Holden's girlfriend and her brother). We had grilled hamburgers, potato salad, and baked beans.

We also had a Spongebob cake...

...which Riley enjoyed very much (along with his ice cream)

His sugars were excellent all day. The pump was a big part of that. Because he was more active than usual his basal was decreased by about 50% all day. I was thinking about before when he was on Lantus and how differently the day probably would have gone. Not that his sugars would have been horrible, but just that he'd probably have to stop and eat snacks throughout the day, to combat the lows. But, he didn't need the snacks. Just a little adjustment to the basal and he was on his way.

He got some great presents. He especially liked a tee ball set he got, and the rubber chicken he got from Uncle Frank.

Here he is on his new swingset.

He also got another present he's been enjoying quite a bit.

Meet Nemo....

Riley has had the best time feeding him and talking to him. When we get home in the afternoons, he goes in his room and asks Nemo how his day was. Riley tells me that Nemo says he plays on the computer when we're not home. "But, he makes sure he doesn't get any water on it."

It really was an almost perfect day. And, the icing on the cake, so to speak, was Holden's home run that he hit at his ballgame that night.

It was one of those hits that as soon as it left the bat, you knew it was going over. The ump estimated that had it not hit the lightpole it would have gone all of 400 ft. I'm glad it hit the pole. The area behind the field is woods, so had it not hit the pole and bounced back in we wouldn't have gotten to keep the ball.

Saturday was more indicative of how our everyday life is. There are days here and there that get me down. But, most of our days our like this one, a home run hit out of the park.

Tuesday, May 16, 2006

Some more "firsts"

What is it about "firsts" that make me crazy. I don't consciously think about it, but when the day comes, I'm a blubbering idiot. We had two "firsts with diabetes" in a row. Riley's birthday, his first with D, was on Saturday. Then, mother's day was the very next day.

I did pretty good on his birthday. There was so much other stuff going on that I didn't have time to think about it all, I guess. Plus, he was having so much fun.

But, mother's day, that's another story. It probably didn't help that due to Riley's increased activity on Saturday, he ran low most of the night. Not too low, but low enough to get me up to check his sugar more often. Then, at 6 AM, he was 71. Too low. This was after his pump had been suspended for 3 hours already. He gets a snack and wakes up at 249. A great start to mother's day.

I was just so sad all morning. I had so much to be thankful for, I knew, but still this first mother's day with D was upsetting me for some reason.

Then, it was off to church. It was nice. We have people place carnations in the sanctuary in memory or honor of their mothers. I got two. One from Riley and one from Holden.

Of course the sermon was about mothers. As the preacher is going on about how wonderful mothers are, I'm biting my lip trying not to cry. He goes on to say that real mothers are very protective of their children. They'll do anything to keep any harm from coming to them. OK, I'm about to lose it in the middle of church.

Riley had gone to "children's church". After the sermon ended, he came running in with this big grin on his face and a homemade mother's day card, just for me. When he handed me the card and said, "Happy mother's day. I love you." ,

I just started kissing him and crying. My mom was standing there and I felt bad for crying like that in front of her. I quickly got up and walked to the car. I didn't want anyone to see me like that.

Here's the thing. I'm a mom before anything else. That's not really how it's supposed to be. But, I'm being honest. I put being a good mother number one on my list of priorities. Because of that, I think I felt like somewhat of a failure on this, his first mother's day with diabetes. I felt like I had fallen down on the job. I disease has taken over my child's body. And I can't do anything about it. I can't make it go away. All the tears, all the prayers, all the sleepless nights, and he still has diabetes. And he always will. He always will. What horrible words to write. Yes, I still hope for a cure, but baring that, my child, my precious baby, will always count every bite of food he eats, will stick himself with a needle several times a day to check his sugar, will be attached to a machine 24/7. My baby is dependent on medicine to live. Without it he will die. Die. Without his insulin, he would die. I just keep typing it to try to get it to sink in.

I know him having diabetes is not my fault. I know "it's just one of those things". Cognitively I know that, but it doesn't help my heart. My heart still aches for him on a daily basis. My heart still breaks a little every time he says "Mom, I'm so glad I won't have diabetes in heaven. Do you think God will hold my pump for me?" You see, even though he knows he won't have diabetes in heaven, he still can't imagine not having his pump. It's a part of him now.

I'm his mom. I'm supposed to make him better. I'm supposed to protect him from the bad stuff. That's my job. Nothing bad is supposed to happen on my watch. But, in October, it did. And, I can't fix it. I can't make it go away. And, it just kills me.

Saturday, May 13, 2006

Happy Birthday Riley

This is me on the day I went into labor. Scary, I know. I'm brave for posting it. I went into labor on Mother's Day in 2002.

I was in labor off and on for most of the day. Finally, at about midnight we left for the hospital, which was an hour away. The contractions were getting closer together and harder the closer we got to the hospital. Michael was driving and Holden, who was 11 at the time, was in the back seat. I had put a towel in my seat just in case my water broke. Just as we were turning onto the road that the hospital was on I became sick and threw up on the towel. All I could hear was Michael saying "Don't look Holden! Don't look!" I was wearing a maternity dress. I had gotten throw up on it also. I walked into the lobby and the lady said "Oh, your water must have broke." I had to tell her that was not the case and that I had gotten sick. My, the things we women endure to bring our children into the world.

We were sent to a little room where I was put on a monitor to see if I was really having contractions. Turns out, I was. Also turns out I was 6 cm dilated already. "Yeah!" I thought. Maybe this won't take long. Not so. We arrived at the hospital at about 1 AM. Riley didn't arrive until much later, 12:18 PM.

I was handling the contractions pretty well. They were hurting and getting worse, but I could tolerate them OK. Then, the Dr. decided that I wasn't progressing fast enough. This was at about 9 or 10 AM. I seemed to be stuck at 7 cm. He started Pitocin. For those of you lucky enough not to have experienced this wonderful drug, let me tell you about it. It is designed to increase the intensity of your contractions. And, it did a darn good job too. At the time, I told Michael I was sure it was designed by Satan. At one point, I looked at Michael and said that it felt like my uterus was going to rupture.

I have never had pain like that in my life. I hope I never do again. They gave me some drugs, but nothing touched the pain. Then, the nurse asked if I wanted an epidural. I responded with a very enthusiastic, "YES!!!" (probably a little too enthusiastic). She went out and came back in a little later. The Dr. wouldn't order one.

When I was pregnant with Holden, I developed a blood clot. I was on blood thinner, shots in my stomach 4 times a day, for 6 months of my pregnancy. When I got pregnant with Riley, just to be on the safe side, I was put on blood thinner again. This time it was just once a day though. But, because of that, I was at an increased risk of bleeding into my spine from the epidural, which could cause permanent paralysis. I had already researched all of this myself. I had stopped the blood thinner on my own 4 days before. I knew the blood thinner was out of my system. The nurse couldn't do anything but what the Dr. said. I asked to talk to the Dr.

While I'm waiting for the Dr. and rolling about in the bed in immense pain, another nurse came in. I could tell she was kind of green. She came in with a big smile on her face and a great big blue exercise ball. She tried to get me to get out of bed and sit on this ball. I just looked at her like she had lost her mind. She kept explaining how it would help move the baby down into the pelvis and blah, blah, blah. But, I was having horrible back labor and had just found a somewhat comfortable position. I wasn't moving even if someone paid me a million dollars to do so. I just completely ignored her and focused on a spot on the wall. Finally, Michael gently said, almost apologetically, "I don't think she's going to get on that ball."

The ball was taken out and in walked the Dr. He came over to the side of the bed. I grabbed the lapel of his lab coat and pulled him closer to me. I said, "Look, I'm a nurse. I've done the research on Lovenox. I know the risks, and I want an epidural. I haven't taken my meds for 4 days. It only takes 3 days for it to clear out of your system." He said he'd have the anesthesiologist come in and talk to me about it.

A few minutes later in walked a short man with curly blonde hair. He didn't talk about the epidural at all, except to tell me I would have to sit on the side of the bed so he could start it. My prayers had been answered and this was my angel!!

I sat up and rounded my back like he said. I was pushing against Michael. He said he's never been so scared in all his life as when they stuck that needle in my back. I said I'd never been so relieved in all my life. I had a contraction just as he stuck the needle in, but had to stay very still. That was the last contraction I felt.

Now, I could rest. This was actually starting to get fun. I was going to have a baby soon!! We didn't know if it was a boy or a girl. I lay on my side for about an hour. I would turn from time to time. It took Michael and a nurse to turn me because I couldn't move the lower half of my body at all. The nurse was in there at all times monitoring my contractions. I was resting with my eyes closed. At one point she whispered to Michael,"It's a good thing she has that epidural because that last contraction went off the chart." "I heard that", I said, and then smiled. I didn't feel a thing.

An hour later I was fully dilated and ready to push. The Dr. came in and after 2 pushes, I see a little head sticking out and I started to cry. Then, one more push and I hear "It's a boy!" Michael cut the cord. And, I layed eyes on my beautiful, perfect, little boy. They took him and put him in the bassinet. I asked, "Is he OK?" The Dr. assured me he was fine. I looked at Michael. He was crying. He stuck his head out the door. My parents and Holden were standing out there. I heard him say, "It's a Riley!"

The Dr. stepped out for a minute and came back in. He said, "You have a big boy out there crying just as hard as your little one is in here." Holden was out in the hall crying too. He'd been asking for a brother or a sister for a long time, and now he finally had one.

And that's how my sweet baby, Riley, came into the world.

This is my mom, dad, and Holden meeting Riley for the first time.

This is father and son. I was in the picture too, but cropped myself out. After 15 hours of labor, I wasn't exactly "camera ready".

From the minute I found out I was pregnant, I loved you. From the minute I heard you take your first breath, you had my heart....and you always will.


Friday, May 12, 2006

Interview Me(me)

I have been interviewed by Vivian at DanielDoo. I will tell you how to play at the end of my interview if you're interested.

#1: If you could choose a career, besides nurse, what would it be?

I've played around with the idea of being a diabetes educator, but then I'd still be a nurse wouldn't I? I would never do that though. I just think the best educators are the ones who have been there themselves. You can't learn everything from books. You learn the most from experience. But, that would be too much diabetes for me, I think.

I think if I could be anything, it would be a pharmacist. I've often wished that I went to pharmacy school rather than nursing school. It would have only been one more year than what I went anyway.

#2: Who has had the biggest impact on your life?

No question about it, my mom. I guess that might be the case for most people though.

My mom is a fine upstanding Christian woman. She has led by example in so many aspects of her life. She was/is a very sacrificing mom. She made sure my needs were met even if her's weren't. She's always told me I could do anything I wanted, and I always believed her.

#3: Tell us about one of the most fun moments of your life.

Now, that's a hard question. I really have had a great life. I guess I'll say a somewhat recent fun moment. We went on vacation to the mountains of NC last July. We had the best time. I knew that we needed to enjoy it because Holden was 14 and soon wouldn't tolerate family vacations. We all slid down Sliding Rock into the ice cold water. Even my brave Riley did this. We hiked to a beautiful waterfall and spent a few hours just watching the water and talking.

I have tears in my eyes right now thinking about it. The memories are all that much sweeter because Riley didn't have diabetes then. We didn't have the worries we have now. I think about how much different that trip would have been had he had D. Not quite as carefree. I'm glad we did it.

#4: What is your guilty pleasure, just for you?

Sorry to be boring, but I don't really have one. I don't really have anything that I do just for me. I'm in "mom mode" too much, I think. The one thing that I do that doesn't really involve the kids or my husband is play Super Collapse II on the computer. If you haven't tried it, you should. But, beware, it's addictive.

So, I guess playing a mindless game instead of cleaning the house sometimes is my guilty pleasure. Yes, I really am that boring.

#5: Name a positive thing about diabetes.

A few months ago this question would have been impossible for me to answer. I would have just said, "There isn't one." and be done with it.

I can say that diabetes has had a positive influence on how I see things now. As much as I talk on my blog about breakdowns and the bad stuff, I really have learned to enjoy life now more than I did before. I think Riley getting diabetes made me focus in on what's important. Before, I think I was just trudging through life. I wasn't really taking time to enjoy it.

I laugh more now than I used to. I've learned to loosen up a little more. I really did used to be a fun person, but somewhere along the way, I lost that part of myself. I'm now getting it back.

A few weeks ago my mom and I were talking about Holden going to Las Vegas with his basketball team. I told her that I wanted to go, but it would be so expensive. Plus, I want Michael and Riley to go too. But, of course, that's added expense. But, if Holden goes, I'm going to find a way to go. I told my mom that since Riley was diagnosed I've realized that we only get one life. We need to enjoy it while we can because we never know what tomorrow might bring. Before Riley was diagnosed if this trip had come up, first of all, I probably wouldn't let Holden go. Secondly, I wouldn't have considered flying the family all the way across the country. But, now, I realize opportunities sometimes only knock once and you better run to the door and answer it, before it moves on to someone else.

Here are the directions for anyone else who would like to play. Leave me a comment saying interview me. The first five commenters will be the participants. I will respond by asking you five questions. You will update your blog/site with the answers to the questions. You will include this explanation and an offer to interview someone else in the same post. When others comment asking to be interviewed, you will ask them five questions.

I'm putting this in myself. I know I have some that read my blog that don't have a blog of their own. If you would like to play just leave a comment saying "interview me" and I'll give you the questions. Instead of posting it in your blog, you can post your answers in the comments of my blog, if you'd like.

Thursday, May 11, 2006


Thank you to all who contacted your Senators regarding S.1955. It looks like it worked!

Please go to Sandra's blog for more info.

And to copy Sandra's sentiments, THANK GOD!!!

Monday, May 08, 2006

Another breakdown

I had another breakdown today. You know what I'm talking about. One of those "I just can't do this anymore" breakdowns.

I'd had a particularly tough day. First, my wrist has been hurting for over a week now. I bought a brace. I've been using heat and Ibuprofen, but the pain keeps getting worse instead of better. (I'm typing this with one hand, so it will probably be short. ) So, I finally break down this morning and get an appointment with the Dr. I HATE going to the Dr. Other than my yearly physical, I avoid Drs at all costs. One reason is because I'm a nurse and I don't like dealing with Drs anymore than I already do. Another reason is because you tend to have to go to them 3-4 times before they actually tell you what's wrong with you.

My appointment was at 11:45. My Dr. is 45 minutes away. I had a new patient to admit this morning, which is pretty time consuming. There is a lot of paperwork involved. She also had a somewhat involved dressing change to do, which didn't help my wrist at all.

I got done at her house just in time to leave for my appointment. The Dr. (actually PA) told me that the symptoms I'm having are a little weird. I didn't actually injure my wrist. It just started hurting. He took x-rays and nothing appeared to be broken. So, you guessed it, "well, Mrs. R. I don't really know what it is. Where you are hurting there aren't really any major tendons or ligaments. Maybe it's cartilage , blah, blah, blah...." In other words, "I have no better idea than you what is wrong with your wrist". He gave my steroids (which I won't take because I've taken them before and they drive me up the wall) and a prescription for something that has the analgesic effects of an aspirin. I'll just stick with my Ibuprofen, thanks.

I had left my cell phone in the car. When I got back to the car I called my mom. She'd just checked Riley's sugar and it was 67. She gave him some fruit snacks and he had eaten and his sugar was now 190. He's been low at lunch the last few days, so I made a mental note to do some adjustments when I get home.

I left the Dr's office and went to another patients house. This particular patient is what we in the medical profession call a train wreck. He's in his 70s, lives alone, has no children or family to help, and was just sent home with a trach. He is really just an accident waiting to happen. To make a long story short, the visit was filled with one problem after another. I had to make several phone calls to Drs, oxygen companies, and respiratory therapists. All the time, my wrist is throbbing. The PA was anything but gentle when he examined it. Oh, I failed to mention that just before I arrived at the patient's house my mom called to inform me that Riley's sugar was now 334. Great, just what I needed to hear.

I finished up with my patient and got in the car to go home. I felt so sorry for him. He's all alone and he's sick and I'm almost all he has and I only see him 3 days a week. That coupled with my pain and Riley's sugars was enough to push me over the edge. I had a 15 minutes ride home and I cried the whole way. I didn't just cry, I sobbed.

Most of it was a "diabetes breakdown". I need to have one every once in a while, it seems. I just feel like I'm not doing enough to keep his sugars under control. After a good cry I realize that I'm doing all I can, and I go on.

When I walked in the house Michael could tell I'd been crying and I just lost it again. I cried for another 15 minutes or so. But, now, I feel much better. Even though after I stopped crying I asked Michael to check Riley's sugar to see if it had come down and it had come 57.

Right now he is happily playing video games with his dad and his big brother. My wrist has eased off a bit after 4 ibuprofen. I've had my good cry and I'm ready to go another couple of months before it probably happens again.

Saturday, May 06, 2006

Set problems

It amazes me and terrifies me that Riley's sugars are dependent on a thin 6mm tube. The pump has to be working too. But, if the pump stops working, you know it pretty much immediately. If the set is not working. It's not quite as easy.

The set stopped working Tuesday. I usually work on Tuesdays, but on this particular day, I was home. My mom was working at the polls. His sugar for the day started out at 90. Nice! At lunch, it was 200. Not too out of the ordinary for him. At snack time at 3:30 PM it was 415. WHAT?!? That was the second reading. The first time I checked it, it registered too high to read. That made my heart jump into my throat. I actually checked it twice after that. Both readings were in the 400s. I tried not to just jump to the fact that it was his set. But, his sugars have never really been that high unless he was having a set problem. I gave him a correction. 45 minutes later, we're 406. OK, maybe I'll wait and give the insulin a little more time to work. 30 minutes later: 381. 45 minutes after that: 381. The insulin should defiantly have worked by now. I pulled the set out. The tip of the cannula was curved ever so slightly. Maybe he was getting a little insulin, but not nearly enough.

I did the set change without numbing it first. I didn't have time to wait. But, Riley did great. He said it didn't hurt. After the set change, he was 427. I gave him a correction of 1.05 and an hour later he was 168. Then, 75. 15g of carbs later: 113.

We went out to eat at an Italian restaurant last night. Riley had spaghetti. Spaghetti has never effected his sugar much more than any other food. At supper, his sugar was 103. 2 1/2 hours after supper: 123. He had a snack and when he went to bed he was 202. 2 AM he was 336. Maybe it took the spaghetti a while to kick in? I had the alarm set to get up again at 4 AM, but at 3:50, I hear. "Mom, I wet the bed." I knew what that meant. He was still high.

We were sleeping in the living room. Every so often on Friday nights, we pull the mattresses into the living room and watch a movie. After the movie, we sleep in the living room. Last night, the main feature was "Finding Nemo". It's a movie Riley has, but we hadn't seen it in a while. If you haven't seen this movie, go out and rent it. It's a really good movie. I'm not usually a fan of animated movies, but I love this one. It's a pixar movie, which somehow, usually makes it better.

I checked his sugar. It was now 298. Michael stripped down his bed and I got him washed off and got his PJs changed. Then, I made an executive decision. I wasn't comfortable with leaving the set in. It may have been the spaghetti, but I didn't want to take that chance.

When Riley found out I was going to change the set, he started crying. "Mom, please, no. I just want to go to sleep." He was so pitiful. He was just sobbing. Once again, we changed the set without the numbing cream. When I pulled the set out I didn't see where there was anything wrong with it. Still, I'd rather be safe than sorry. Riley cried big crocodile tears this time. I was biting my lip the whole time, trying not to blink so the tears wouldn't spill out of my eyes.

He had been sleeping on his mattress, but after the set change I held him for a while and just kept whispering "I'm so sorry." Then, I let him sleep in between Michael and me.

He didn't get a correction because he does tend to drop the most after 4 AM. When he woke up this morning, he was 169. Not too terrible.

I just wish there was some way to see the cannula without actually pulling the set out. But, since you can't do that, I will keep using my best judgment. Just another thing to add to the guessing game that is diabetes.

Tuesday, May 02, 2006

Basketball and an endo appointment

I know I've neglected this blog lately. Things have been so busy, it doesn't feel like I have time to breathe, let alone blog. Things have been busy in a good way though.

We went off for the weekend again for more basketball. It was the state AAU tournaments. It was double elimination. They won their first game and then lost the next two games. So, they didn't place high enough to go to the nationals, which will be in Florida.

Friday we stopped on the way to the games for an endo. appointment. Riley had been pumping exactly 8 weeks. He had gained a pound which I was very happy with. She also checked his A1C, which had gone up, of course. It's to be expected when you first start the pump because you usually have some high numbers in the beginning while trying to find your right basals. 8 weeks ago his A1C was 7.6, it is now 8.1. Although I hate that it went up, I'm trying to keep it in perspective. 8.1 is still a good A1C for his age. I've seen the range for his age as 75.-8.5, but I'd really like to keep it under 8. We will be going back the end of June and I'm hoping it will be better then. We're not having the highs like we were one time. Now they happen only occasionally, not every day like in the beginning of pumping.

Dr. M came in and the first thing she did was ask Riley how he liked the pump. She asked him if he was eating everything he wanted to and if he had any questions for her. She looked at his sites we've been using for his sets and said they looked great. Then, she went on the ask us some questions. Some of the questions she asked where: "Have you stopped doing things that you would be doing if Riley didn't have diabetes?" (No) "Are you letting him eat like he wants to?" (Yes). The one question that stuck in my mind and I have thought of quite a bit since the appointment was "Is diabetes still in the top 3 of you lists of problems?" I had to be honest and say yes. She assured me that one day she would ask that question and I would say no. I have to admit I have a hard time believing her. She then went on to add that given that Riley was so young, it may take a little longer before it wasn't so high on the list, but one day it wouldn't be. Still, I'm not convinced.

She then looked at his sugars. She looked at how I'd been adjusting basals and said, "You have a good eye for this. It looks like all you need is for me to bless you and send you on your way." That made me feel good. I felt like I had a good idea of what to do, but then I was thinking maybe there was something I could do differently. The main two problems we've been having are his 2 hour post parandal (after eating) breakfast sugar. It's been too high. One might think a carb coverage adjustment is in order, but his breakfast coverage is already 1 per 30g. This is the highest of all his carb coverage. Upping it to 1 per 25g just seemed like too much to me. His morning basal is also the highest of all day at .150. The second problem ties in with and probably causes the first one. Riley's 2 and 3 AM sugars are usually a little too high, usually in the lower 200s. But, by 5-6 AM, his sugars are low enough that we have to suspend his pump sometimes. His basals from 12 AM to 3 AM are .10. They drop all the way down to 0.05 from 3 AM-8AM but still he drops too low. Dr. M's thinking was just like mine. She said that 1 per 25g is too much carb coverage and the problem with his morning sugars going up probably stem from his basal being so low earlier in the morning. She said what we need to do is get his 5-8 AM sugars up so we can increase the basals going into breakfast. But, how do you do that? I told her the thing that bothers me most right now is having to basically run his sugar up at bedtime so his sugar won't go too low later in the morning. If I don't run his sugars up to the 200s, he will defiantly go too low later and need his pump suspended, which again, affects his post-breakfast sugar. Her thinking is that he is just so active. He really is never still. She thinks his activity affects his sugars in the early morning hours. Her recommendation was to try increasing the amount of fat he gets at his bedtime snack. She's hoping that will help keep those sugars up a little longer thus allowing us to increase his basals a little. Now, Riley's nighttime snack is cheese puffs. It makes me cringe to even write it. But, he loves it and it has 8g of fat per serving but no trans fats. At first, I thought it may be working. His sugars were 134 and 121 pre-breakfast. But, this morning, he was 90. That's a great sugar, but too low to increase the basals. His after breakfast sugars have been running in the 250s range. His 8-12 basals have also been increased to .175, but I haven't seen where it's made much of a difference.

The rest of his sugars are doing pretty good. We hadn't had any major lows lately. That was until Sunday morning.

We were near a place with a huge mall. We decided to spend some time there before heading home. Riley's pre-breakfast sugar was 134. We then went to the mall. We had only been there about an hour. He hadn't been walking much. We were carrying him most of the time. I decided to stop in the middle of the mall and check his sugar. He acted OK. He said he felt OK. I just wanted to check to be sure he was OK. He was 54. Not OK. He got to eat Spongebob fruit snacks, much to his delight, and they did the trick. They brought his sugar up nicely and he didn't rebound like he usually does. We then carried him down to the food court and he had an early lunch.

It's things like that which make me hate this disease. What if I hadn't decided to stop and check his sugar? How low would he have gone? It scares me and infuriates me all at the same time.

I've been doing pretty well lately. I haven't cried in a while. But, I've gotten good at pushing bad thoughts to the back of my mind. Every once in a while, I'll think about when Riley is going to have to be responsible for the stupid disease. I mean, right now, I do all the work. I like it that way. He doesn't have to worry about it or think about it. It won't always be that way. One day all of my worries will be his worries and that saddens me. But, as soon as I have those thoughts, I push them to the back of my mind. There is no use worrying about it now. But, I think that's starting to catch up with me. (I'm crying right now while I'm writing this.) It's not like I've been in denial. I've just been in survival mode, I think. Just pushing through. Just doing what has to be done. But, eventually, the breakdown comes. It always does.