Thursday, March 30, 2006
I spoke with the endo. last night after I posted. We went over all his sugars and did a little adjusting to his basals. He's been running lower at supper most nights. So, we decreased his basal a bit from 3-6 PM. She pointed out to me that his sugars aren't really all that bad. She was right. I need to learn to focus on the big picture and not just a few random sugars. This morning I went through his log book and wrote down his sugars according to what they are at specific times of the day. That way I can get a better picture. I am going to share and see what you think. This is over the past 7 days, the last number in the column is yesterday and then the next is Tuesday and so forth.
305 (rebound sugar)
312 (rebound again)
Ok, what's your opinion? Keep in mind that because of his age his range is 140-220 during the day and then 80-140 pre-breakfast and <190 for snack (or two hours after his meal bolus).
The endo. and I talked for a while last night. She was very encouraging. She is just very calming for me. After we'd discussed all of the sugars and tweaked some of his basals, she said, "Now do feel more comfortable to test less often?" I guess it was her subtle way to say I was testing too much. Can you test too much? How much is too much? How often did you test yourself/your child when you/they first started on the pump? I told her I wasn't comfortable yet to decrease how much I'm testing. I average testing about 13 times a day. Is this really too much while trying to get basals right? Even though the endo. is very nice and calming, when I got off the phone with her last night, I told Michael I feel like a freak. Like I'm overly cautious. I want your honest opinion. Am I testing too much? I told Michael last night, I need to determine if I'm testing for Riley's well-being or for mine. I'm asking your opinion because you've been there. She's looking at in from a clinical view. You are looking at it from a life's view. There is a difference in living with the disease and studying about it in school.
When I told the endo. that I wasn't ready to start testing less yet, she just said "Well, you'll get there. It will get where you're going longer and longer between tests." Then she told me he was doing fine and she was pleased with his sugars. I know it's important to test before each meal, at snacks, bedtime, and in the middle of the night. That's seven times. I guess 13 does seem like I'm overdoing it. I asked earlier how much you tested when you first went on the pump. How about now that you've been on the pump a while? I'm just curious how everyone else does it.
Wednesday, March 29, 2006
But, the thing is. That just scares me. I mean, we had just checked his sugar an hour earlier. And in that hour, he went low enough to cause his sugar to rebound. Plus, he was playing a game with Michael during this time. ( A sit down game,not a run around game) He never showed any signs of being low. I thought that since he had high sugars for a while, he might start to feel the lows, but no such luck. What really gets me is there is nothing I can do about it. I can't check his sugar every 30 minutes. His little brain is developing. It needs sugar for that. It just terrifies me. I have no idea how low his sugar actually went.
His sugars have been good today. He was 104 at supper, so I'm sure I'll check his sugar a little too much the rest of the night, to try to catch the low, before it gets too low, if it goes low. Who knows? That's the problem, no one knows. This disease is so uncertain. Most diseases, you take the same dose same time every day. With this disease, your medicine dosage changes from one hour to the next and you get to try and guess what dose you might need. Does he need less? Does he need more? Does he need a little less and then a little more? Maybe a little more and then a little less, but not too much less. You get the picture? OK.....deep breathe. At least there is medicine for his disease. At least he has access to healthcare and insulin. At least I still have a son to worry about.
Tuesday, March 28, 2006
I decreased his basals around 7:30 last night. He hadn't had any lows during the night in a good while. I had finally gotten to where I was comfortable just getting up once during the night and checking his sugar. Well, last night broke me of that for a while. Last night before bed his sugar was 220. He still got a 10g snack with no coverage. That would lead one to believe that his sugar would go up a little more. Right? I got up at 3 AM. His sugar was 56. I gave him his drinkable yogurt. 20 minutes later, we're up.... no, make that down, to 51. What in the world? So, another yogurt and and another 20 minutes, we're up to 83. Only 83 after 30 grams of carbs. Of course, a little while later the carbs (and probably a rebound) kicked in and he woke with a sugar of 304. An hour after breakfast, he's 340.(his highest sugar in a while). One hour later, he's 178. There is just no rhyme or reason to it. It's like I know there is no rhyme or reason to D, but somehow it still surprises me when diabetes pulls crap like this.
The Dr. called tonight. She was in a conference all day and hadn't been to her office to get the fax of his sugars. But, we talked about the lows and she told me to decrease the basals to 0.025 all night tonight and see how that works. She also gently reminded me that if his sugar was not at a very comfortable level at midnight, I can cut the basal in half for a few hours. Also, she said if he has 50s again in the night, to suspend his pump for about 2 hours. Why can't I think of these things myself? I've read books about pumping just so I'd know what to do, and yet I don't do what I know I should do. She said she'll look at all of his sugars when she gets into her office in the morning and then we'll probably do some more adjusting.
He hasn't had a low today yet. His sugars have been good except for that 340 this morning. I just hope he does well all night tonight. I know I won't sleep again. Those lows just scare the begesous out of me. They scare me much more than the highs do. The highs just make me mad. The lows terrify me.
On another note, look what I bought myself. Why is that so great, you may ask. Well, I never buy myself anything. Never. Not unless it is a real need. For example, my 3 year old tennis shoes are starting to get a hole in them. So, I will have to buy some more. I have guilt about buying things that I don't really need. But, I went into a local store yesterday to buy an orangeade. I was looking around and found this.
It 's a Willow Tree Angel. I have a collection of them that have been given to me throughout the years, but I had never seen this one before. (turns out, it's new) The Angel of Hope.
"Hope was created to fill our hearts with the optimistic joy of a child. It also represents DEMDACO support of an international charity called Care for Children, which works to enrich the lives of Chinese orphans by placing them in loving, supportive Chinese families in China. For every "Hope" figurine purchased in 2006, DEMDACO will donate $1.00 to Care for Children."
It made me think of Riley. So, I bought it (on sale too). I put it on my desk at work and every time I look at it, it reminds me to keep my chin up and to keep my hope for a cure alive. Ain't it cute?
Sunday, March 26, 2006
Riley is happy. He got to eat pizza last night. Call me a bad mother, but pizza had been eliminated from our diet for the last 6 months. I had read what everyone else had written about eating pizza and I was just avoiding it. Last night after Holden's game, we went out to eat pizza. Riley was so excited. And, I must say, it really didn't do a number on his sugars like I thought it would. He may have been slightly higher than usually, but not really. Plus, it's hard to say if it was the pizza or just life. We all know that sugars vary greatly from day to day anyway. We didn't do an extended bolus. I decided I wanted to see what it did to his sugar so I would know how to extend his bolus in the future. Turns out, for now, I don't think he needs an extended bolus.
I got a call on Friday from my supervisor. I have been approved to start working 4 days a week. I will start the week after Easter. I'm glad that it was approved because we need the money, but I'm still sad that I'll be home less.
Yesterday was a long day. As a home health nurse, I am on-call sometimes. This weekend was one of those times. When my supervisor called on Friday to tell me the news about my job, she also let me know of a patient just getting out of the hospital that I would have to see and admit on Saturday. Holden's first game on Saturday was at 9:30 AM. He had to be there at 8:30 AM. So, we take Riley out of bed and put him right in the car seat with his pajamas on. He ate breakfast in the car. Then, we watched Holden's game. His game was 45 minutes away from our house. 1 hour away from the patient I had to see. After the game, I went to see my patient. As soon as I was done with the patient, I drove another hour so I could see Holden's second game. I'm not a fan of driving. But, I did a lot of it yesterday. We stopped at the pizza place on the way home. A soon as the pizza arrived, my beeper went off. I had a another patient that needed me. I ate quickly and then went to see the patient. Just made it such a long day. But, Riley's sugars cooperated. While I was seeing the patient, my husband called so I could count carbs over the phone for him. Just no getting away from this disease. Even while I'm working.
Holden's team lost their game on Friday. He won one and lost one yesterday. I think he's having fun. It is just a whole other level of play for him. It's much more fast paced than what he's used to. But, I'm impressed with how he's hanging in with those guys. He actually started in the last two games. I think he's learning a lot. And, he's meeting a lot of new people. He didn't know a single person on his team when he started. I'm not sure that's something I would have done when I was his age.
Just an update to let you know how things are going. BTW, I said I wasn't watching anymore college hoops, but right now George Mason and UCONN are in overtime. I so want George Mason to win. They are ranked 11 and UCONN is #1. I have probably just jinxed them though. It seems as if whoever I pull for loses.
Friday, March 24, 2006
I am in mourning a bit this morning. First, I watched as Duke lost to LSU. It was almost painful to watch JJ Redick walk off the court for the last time in his college career. He was trying so hard to hold back the tears. Duke really didn't play well. LSU's size was just too much for them. But, there is always next year, but really this was supposed to be their year and they didn't even make it out of the Sweet Sixteen.
When I went to bed last night, Gonzaga was winning. If I could have watched the game, I would have stayed up. But, since I live on the East Coast and Texas and West Virginia were playing at the same time, that's the game that was on. I tried to get on the computer and watch the game, but it was blacked out in my area. I was very hopeful when I went to bed that maybe the bulldogs would win. The first thing Michael said to me this morning was, "I've got bad news. Gonzaga lost." So, I missed Adam Morrison's last game as a college player (probably). He's a junior, but is expected to go pro next year. I have read a few articles about it this morning, and Morrison seems to have taken the loss pretty hard. But, he said some nice things after the game. You can read about the loss here.
So, college basketball is over for me. I don't care who wins now. I just hope Holden's team wins their game tonight.
Now I can move on to baseball, I guess. That "there's always next year" mentality that I mentioned in the first paragraph comes from being a devoted Cubs fan. We always have to hope for next year, because, well, the Cubs are known as "the lovable losers". The Red Sox and the White Sox had their years. So, maybe this really is the Cubs year. We'll just have to wait and see.
Thursday, March 23, 2006
Also, let everyone on your email list know about this bill and ask them to take action also.
In other news. Riley's sugar this morning was 95. Yeahh!!!! It's been a while since I've seen a sugar like that.
Holden's first AAU basketball game is Friday. I'm excited. I do love the game of basketball and I especially enjoy watching Holden play it.
Duke and Gonzaga both play tonight (but not each other). So, you know where to find me tonight. In front of the TV. But, I'm going to miss the beginning of the Duke game because Holden has practice. I think Duke will win, but I'm not so sure about Gonzaga. I hope they both win. I would love to see them play each other in the final four.
Today is Holden's "re-birthday". This is the day that he became a Christian. He got a little card and a present before school this morning.
Just writing down the little tidbits as they pop in my mind. It's hard to remember that I have other things going on in my life besides D.
I'm waiting to see if my work will approve me to start working 4 days a week instead of the 3 that I work now. If they don't, I will have to find another job, which I don't want to do. I like my job, and I love the flexibility that it gives me. We need the extra money right now. I would really love to quit my job and stay home with Riley 24/7, but instead I have to work more and see him less. I'm just glad that I got the time that I did with him. When Holden was Riley's age I was working and going to school. I was blessed to be able to stay home with Riley some. I also was able to take a 3 month maternity leave with Riley. I was back in school 2 weeks after Holden was born.
Can't think of much else that's going on right now. Hope everyone has a great day.
Wednesday, March 22, 2006
Today has been so much better. His sugars haven't all been in range, but they were much closer to his range. He even had a few sugars that were in range, which hasn't happened in a while. I can just tell that he even feels better.
Anyway, just wanted to say thanks to all of you. I just hope I can help someone else someday like you guys have helped me.
Tuesday, March 21, 2006
It has been a very rough 18 days. I really don't like to post too many negatives. I at least like to touch on a few positives, but I'm not sure this post will have any positives in it.
I feel like I've reached my breaking point. I don't get stressed easily. I never have. I'm the type of person who feels like you take things as they come, you deal with them, and then you move on. I guess my problem now is there is no moving on. I can always see the end point, where things will get better. But, there is no end point with this disease. There is no point in the future where I can say for certain that things will be OK.
Everytime I feel like I can relax, just a little, diabetes throws me another curve ball.
Riley's sugars have been horrible, just horrible. I know this is to be expected when you first start the pump, but like I said, I can't see an endpoint to all of this. I know that when I do get them straight, everything will just change again.
My downfall all started, I think ,on Friday. I faxed Riley's sugars to the endo. I called and left a message to let her know that I had faxed them. I never heard from her. I didn't really push the issue over the weekend. We were doing about the same as always. So, first thing yesterday morning I faxed his sugars again along with a few questions. I also called the office and left a message to let her know I'd faxed the sugars and that I felt a little stuck at what to do next with his basals and carb. coverage. See, I've been bumping his basals up slightly every 3 days. When Dr. M talked to Michael last week she commented on what a good job I was doing adjusting the pump. I just felt that something else was wrong. His total daily dose of insulin has increased from 3 units a day to anywhere from 6.5 to 7 units a day. Most people need less insulin on the pump, not more. I know that it is feasible that he stopped honeymooning about the time that the pump started. I just felt like I kept increasing his basals and his carb coverage and his sugars were staying just about exactly the same. For example, his sugars 2 hours after meals are pretty much the same now at 1:35 carbs as it was when it was 1:50 carbs. The change should have lowered his sugars a little, right?
I must pause at this point and just let you know, I'm sick, sick, sick of hearing about how Adam Morrison has "flu-like symptoms" and he may not be able to play Thursday. You see, I live in a house full of boys. My TV is on ESPN most of the time. ESPN has mentioned at least 10, count them 10, times that it will take Morrison so much longer to recover because of his diabetes. I just don't want to hear it right now. He's an inspiration to many kids with diabetes. He's proof that you can do whatever anybody else can. Then, he gets sick and all they can talk about is how if he didn't have D, he would get better quicker. This is probably true, but I don't want to be faced with that reality now. I much prefer to put him at Super Hero status and pretend that D doesn't affect his life at all, but the stupid TV announcers won't let me!!
Ok, so where was I? Oh, yeah, I had faxed his sugars. Well, by the afternoon, I hadn't heard from Dr. M. So, I called her cell phone. Her message said that she would return calls within 30 minutes. I left a message pretty much like the one that I left earlier at the office. I also left several numbers where I could be reached.
Not long after, my mom called and said the Riley's pump was alarming. She said Riley came to her and said "My pump played music and then it tickled me" (his pump vibrates after it alarms) The pump said "Caution, no prime" (or something like that). I was in the middle of seeing a patient. I told the patient I had an emergency and would be back later. I went to my mom's and called Animas. The person I spoke with was very nice. About 2 minutes into our conversation, she was sending out a brand new pump. She couldn't figure out why the pump had pretty much reset itself. She said it may never happen again, but just to be sure they were going to send out a brand new one. I get the pump straight and head back to work and finish the visit with my patient.
Came home, had supper, still no call from Dr. M. So, Michael called and left another message on her cell phone. The same message was up there that she would return the call within 30 minutes. Still no call when we went to bed last night. I was starting to get concerned that something bad had happened to the Dr. Whenever I've called her cell phone before, she's called back usually within an hour. I know basal adjustment is not an emergency, but I did want to talk with her and see what direction to head in next. I just felt that the longer it took to talk to her, the longer his sugars would stay up.
7:30 AM, Dr. M called. No explanation of what took so long, she just made changes to his basals, carb. coverage, and ISF. Told me to wait 3-4 days and then we could tweak it some more. Now, don't get me wrong, I still love the endo. She is very knowledgeable, and she understands my fears about changing anything and has a way to calm me down and get me to feel better about what's going on with Riley. I guess I felt let down that when I needed her, she wasn't there.
Next, it's off to work. There was a big ordeal with my mom about not understanding the new carb. coverage. The pump will only let you change coverage every 4 hours. His breakfast coverage is higher than his mid-morning snack, so I had to show my mom how to go in and manually change his carb coverage for his morning snack. Anyway, Mom ended up calling me 5-6 times throughout the day. This is on top of the 5-6 times she had called me the day before. It's just trying to deal with work and home at the same time is a little difficult.
Riley's new pump arrived at 10 this morning. I was hoping to hold off on switching it until I got home. It was set change day anyway, so I figured I just do it all at the same time. At about 3:00, my mom called. The first words out of her mouth was "I think we have a problem." Great!! That was just what I wanted hear. She had checked Riley's sugar with our Freestyle Flash. (This, by the way, is a brand spanking new one. I just got it last week. I called the company and complained about the wide fluctuations and they sent me a new one.) Well, the Flash registered at 426. So, she used my dad's machine, 334. She used the Flash again and this time it was 320. That seemed more like it, but she checked his ketones and they were trace. Now, we've established that his sugar is high enough that he's spilling some ketones. My mom is freaking that the pump has just stopped working even though it hasn't alarmed again. Keep in mind, this is at 3:00 PM. I was on my way back in to the office. I had not had time to even think about eating lunch. It had been a very busy day at work and this was just not what I needed right then. I went to the office and told my supervisor that I needed to leave for the day.
I went to Mom's and spent a while setting up the new pump and then I changed his
site. We are back to using the Insets because Riley keeps complaining that the metal set hurts when he sits down.
That leads us to now. I was hoping Michael could help cook tonight because, well, my brain just does not want to work. He just called a few minutes ago to let me know he's just leaving work (45 minutes away). He's usually home by now.
Now, I must go and cook. My family must be fed. The clothes must be washed.
I just hope this new pump helps. I'm going to be mad (and a little relieved) if I find out that the pump has been the cause of all of these highs. I got an email or maybe a comment on another post where another parent said that they kept having high after high and finally convinced the pump company to send them a new pump. After, they started the new pump, the sugars evened out. That leads me to worry that now his basals will be too high and he'll drop too low.
Ok, really got to go. Must cook, must clean. Sorry to ramble so much. Thanks for listening.
Monday, March 20, 2006
---awakening each day with a hope for a cure and then living the rest of the day as if there will never be one.
---being awakened suddenly at 2 AM with a feeling that something is wrong and when you check, your child's sugar is low. After you get it back up, you lie awake the rest of the night wondering what horrible things could have happened had you not woken up when you did.
---trying to have a conversation with someone, while eating and keeping an eye on every bite your child eats so you can bolus accordingly.
---feeling guilty for just wanting some time to yourself to not think about diabetes.
---never, ever sleeping through the night.
---feeling like you always have to be strong, but never feeling like you're strong enough.
---trying to teach your child how important it is to take care of himself while at the same time trying to teach him not to let diabetes consume his life.
---having to kiss your child and tell him how sorry you are for things that are beyond your control.
---crying tears of sorrow for what your child has to deal with on a daily basis and moments later tears of joy because he's alive and he's yours.
Saturday, March 18, 2006
#1) My middle name is Elizabeth. For those of you who have emailed me, you might have thought that my middle (or last) name is Lane. But, no, that is what my husband has called me since the day we met, Penny Lane. He even has a tattoo on his left arm. It is barbed wire with a heart in the middle with the initials, PL in the heart. I'm not sure why he calls me Penny Lane, but we are both fans of The Beatles.
#2) Speaking of tattoos. I have one on the inside of my left ankle. It is a sunflower. I would take a picture of it for you, but the fur on my "winter legs" would probably scare you. Yeah, it's been a while since I've shaved.
#3) Two years ago my husband surprised me with a trip on our anniversary. I had arranged for my parents to keep the kids for the weekend, but we were just going to stay home. Michael called me on Friday afternoon and told me to pack, we were leaving for the weekend. I didn't know where we were going. We first went to Charleston, SC and then on to Savannah, Georgia. Two places I have always wanted to go. I particularly enjoyed Savannah. The houses are beautiful. We searched everywhere for the bench that Tom Hanks is sitting on in Forest Gump, but we never found it. I did take a picture of the house from "Midnight In the Garden of Good and Evil". It was very sweet and I'll never forget it.
#4) I have 2 cats and 2 dogs. The dogs are Grace and Elizabeth (we call her Lizzy). They are both almost 5 years old. One cat is named Skye and she is almost 8. My baby, though, is my 11 year old cat, Sadie. I absolutely love this cat. I tell people, she thinks this is her house, and she just lets us live here.
#5) There were only 15 people in my graduating class in high school. I went to a small private school. We were all very close. A lot of us had been in school together since Kindergarten. There were 4 of us that were pretty much always together. (Kathy, Heidi, Letitia, and me) Our PE teacher called us the "four dummies". You hardly ever saw one of us without seeing the other three. Our whole class was so close that we swore that we were going to get together every year, but this year will be year number 14, and we haven't gotten together yet. I would love to see everyone again, but I just can't get motivated to plan a reunion. ( Mindy, if you're reading this, Hi!)
OK, I hope I didn't bore you. I just didn't feel like talking about D today. I hope everyone has a nice day!
Friday, March 17, 2006
We tried the insets and liked them OK, but everytime his sugar shot up, I'd get paranoid that something was wrong with his set. They also sent some Contacts (metal sets). We are using those now and it has helped my peace of mind a lot. When his sugars are high, I don't immediately think his set is kinked, because, well, it can't be. I told the CDE that the metal sets are the best right now for my peace of mind. I'm sure we'll switch back to the insets later, but for now we're sticking with the Contacts.
I am currently watching UNC play basketball. My favorite team, Duke, won yesterday and will be moving on the the next round. For those who don't know, if you live in NC, you're either a Duke fan or a UNC fan, not both. I pull for Duke and whoever plays UNC. So, for tonight, go Murray State (whoever you are). Gonzaga also won last night, but barely. BTW, I won my shirt on ebay and am wearing it right now. I've gotten some strange looks because of it, but I don't care. GO ADAM MORRISON!!!
Sorry I'm not more informative about the pump, but to be honest, I'm just tired and really don't feel like reliving the last week on the pump. I promise eventually I'll get back on track.
Just one more pumping tidbit. Today Riley was talking about a boy in Holden's class who has D. He doesn't wear a pump. He's 14 and is not interested in having one. Riley was asking about A's pump. I told him he didn't have one, that he just took shots. Riley just had a look of disbelief on his face. He just couldn't seem to believe that someone would take shots when they could be on the pump. He said, "Well, I love my pump. I don't ever want to go back to shots." It's things like this that give me the strength to keep going. Knowing this is what's best for him and this is really what he wants.
Saturday, March 11, 2006
Today is my wedding anniversary. It's been six years now.
I remember it clearly. We just had a small family wedding. I didn't feel the need for a huge wedding. It was nice and just what I had imagined it would be. The only thing I didn't do that I wish I had was play our song "At Last" (Etta James) as we were lighting the unity candle. I was stressed at the time because I was doing all the planning myself and just didn't take the time to find the CD. But, other than that, the day was all I could have hoped for.
I was living on my own at the time, but I spent the night before my wedding at my parent's house one last time as a single girl. When I got up in the morning, my mom had prepared a nice breakfast. After breakfast, it was off to the church. The wedding was at 11:00 AM. The only people invited were close family and Michael and I invited one friend a piece. I think there ended up being about 28 people at our wedding. They were our parents, my grandmothers, my aunts and uncles, my cousins, Michael's brothers, Michael's brother Frank's girlfriend- of -the- moment (I don't think I ever saw her again after the wedding), my friend, Flora, and Michael's friend, Blaine (oh, yeah, and Blaine's mom-she was his date). It was truly a family affair. I didn't hire photographers or anything like that. My cousin's wife, Jan, took the pictures. Frank video taped everything. Timmy (another of Michael's brothers) ran the sound system.
I never got nervous about getting married. I knew I was doing the right thing. The only time I got nervous was when it was time for Michael to walk out, it took longer than I thought. I thought maybe he'd changed his mind. Turns out, he was waiting on the pastor and that's what took him a while to walk out.
My dad walked me down the isle. He even wore a tux, which is very out of character for my dad. When he gave me away, he kissed me on my cheek and when the pastor asked "Who gives this woman?", I heard my dad's voice quiver as he said "Her mother and I."
Then, my pastor's wife sang, "From This Moment" by Shania Twain. During the song, Michael turned to me and told me I was beautiful. It was all I could do to not cry. I had to bite my lip and I couldn't look at him for a while.
We didn't have a bridesmaid or a groomsman. Holden was Michael's best man. When it was all over, we walked down the aisle and Holden followed behind us. When we got out, I turned around and Holden was crying. That made me cry. He was crying because he was so happy that we were married.
After the ceremony, we had a catered lunch for everyone. Then, it was off to the honeymoon in Williamsburg, VA.
I have never regretted marrying Michael. He is one of the best things that has ever happened to me. (Holden and Riley being the other great things that have happened.)
We've had our ups and downs over the years, but hasn't everyone? We've defiantly had more good times than bad. But, I've learned that whatever adversity comes our way, we come out stronger in the end. I look forward to many, many more years with him and I can't wait to see what lies around the bend.
Friday, March 10, 2006
this. It depends on if I feel the need to write or not. Sometimes it helps to get everything out. This week of posting was meant to help other parents that might be considering a pump. To let them know what it's like, but I'm afraid Riley's a poor example of the first week on the pump. We've had so many set problems and I know that's not normal. It's normal to have one occasionally, but we've been changing sets every day, sometimes twice a day, like yesterday.
Yesterday started out with high numbers and a clogged set. Things went pretty well after that, except a low after supper. I think his sensitivity factor is too low. I wanted to set it at 300, but the endo. wanted it at 250. I know it sounds crazy, but he's had 1/2 unit of insulin drop his sugar that much before. ( For my family and others that may not know, the sensitivity factor is how much 1 unit of insulin drops his sugars. So , now the pump says one unit of insulin drops his sugar 250 points. So, when his sugar is up it takes that into account when it suggests how much insulin to give.) I'll tell you why I think his ISF is too low. Last night at supper his sugar was 307. The pump suggested .6 units for correction and .7 for his 35g carbs. So, a total of 1.1. That's what I gave him, and 1 1/2 hours later his sugar was 66. This is not an anomaly. It's happened several times. He only gets corrections with meals. I think his ISF is off and not his carb ratio, because if he eats and doesn't need a correction his sugars don't drop like that.
Dr. M called last night to see how things went yesterday. I told her we had to change the set again. She apologized and said she was sorry we'd had such a bad first week and that hopefully it will get better after we get the new sets. She has ordered the 6mm Insets. So, I guess that's what we will be trying next. We got a sample inset (9mm) with his pump. I got that out last night and played with it to get a feel for it. I wasn't trained how to use it, but I think I've figured out how to use it now. It doesn't seem too complicated. Before I use one, I'm going to call the educator and have her talk me through it, so I do it right. I'm thinking you prime the tube just like the other ones, and you load the spring, remove the adhesive backing, place it on his skin, and release the spring. I also think you don't pinch up the skin like you do with the comfort. I don't have the pamphlet that came with it, so I don't know how much it takes to fill the canula, but I'm sure they'll send one with the new supplies.
So, that's where we stand now. I'm not sure when the sets might show up. I think they were ordered on Wednesday night, but it may have been yesterday when they were ordered. So far, his other set is doing OK and if it continues to do OK, I will leave it in until Sunday when it is due to be changed. But, I'd like to have the new sets here so if it does mess up, I can use them.
His sugars did well last night. 177 at bedtime, then, 124, 114 (I gave him a peanut butter cracker that he didn't need), and then 215. He was 153 pre-breakfast this morning. I still haven't gotten into a pumping mindset yet. It's still scary for me to see a sugar of 114 at 4 in the morning. That used to be way too low for him, but I have to realize his basal is lower now at night than it used to be. I'm getting better. Last time I gave him 2 crackers. Maybe tonight, I'll be brave and won't give him anything. But, of course, that means I'll check his sugar more often. I did try not giving him anything one night. His sugars were 150, 127,120, and then 75. I guess that 75 wasn't too terrible for a pre-breakfast sugar. I want it 80-140, but 75 is close enough.
Keep your fingers crossed that this set will last through today. I will consider it a huge victory if it does.
Thursday, March 09, 2006
Let me just share his overnight sugars. 281, 325, 293, 292, and his pre-breakfast sugar: 302. I looked at the set, no blood this time. But, it didn't look like it was far enough in. Instead of just yanking it out, I gave him breakfast and his bolus and waited an hour. After an hour, he was 374. Then, I decided for my sanity that I had to change the set, yet again. When I pulled it out, I found that it was not completley in. I think I didn't put it in deep enough last night. I was trying not to put it in too deep and kink it again. I just can't win. Riley tolerated it quite well. I gave him a small correction and an hour later he was 172. Best number I've seen in days.
About 10 minutes after I'd finished changing his site, I got a call from L at Animas. She is Riley's educator. I had never actually talked to her, but she had left a message on my answering machine before. She said she received an email that I was having trouble with Riley's sets and wanted to follow up on it. We talked for about 15 minutes. I told her the endo. was supposed to call and order some different sets, but I didn't know what she had ordered. She said she'd check and see. She also set up an appointment to meet with me to go over the sets and insertion sites. She's supposed to call back later with a time and place, but we are supposed to meet on Wednesday.
She kind of sounded to be leaning towards an inset, but a shorter one than the sample they sent. She said most kids say they don't hurt as much as the comfort set. She also mentioned possibly trying a metal needle to cut down on kinking. She is on a pump herself and has tried the different sets. She says that the metal needle was actually quite comfortable. I've corresponded with a mother in the past whose 3 year old uses metal needles and she loves them.
I must say, so far I am very impressed with Animas and their customer service. Every time I've called, whoever I've talked to was very professional and helpful. It seems that a lot of them are on a pump themselves, so they actually get what is really involved with dealing with a pump.
I hope this set last at least until the new sets arrive. We'll keep trying. I know that once we get this whole set thing straightened out things will get a little better. We can't really move forward with adjusting basals if his sets keep messing up.
Wednesday, March 08, 2006
Yesterday's sugars were as follows:
416 (yes, you read that right, and yes, his set was working)
during the middle of the night:
His sugars have never run high at night. I don't know what happened.
Today his sugars have been:
When he clocked in at 354, I checked his site. Sure enough, there was blood clogging the canula. This was right before supper. He's screaming that he's hungry, I'm stressing about getting the site back in. I called Animas. They said he probably needed to try another set and that the Dr. needed to let me know which ones to try. So, then I called the Dr. She said she'd call Animas and order something else and have them sent to me ASAP. Riley did OK with the set change. He just grunted a little when I put it in. Then, he ate. The pump suggested carb coverage of 0.9 and a correction of 0.4, or a total of 1.3. I wasn't comfortable giving him that much at 7 o'clock at night, so I havled his correction dose and gave him a total of 1.1. Wasn't really comfortable with that number, but I wanted his sugar to come down. An hour later, it was 272. Then an hour after that he came to me and told me his head hurt. This usually means his sugar is low. So, I check it. It's 77. But, he looks lower than 77. I get another meter. (We have 4) and check. It says 55. I have a feeling that's more like it. He gets his drinkable yogurt and right now it is 130/101 (depending on which meter you want to believe) . He'll get his bedtime snack soon. The thing is, I know what's coming. He's going to rebound into the 300s. Stupid diabetes!!!!!
Now, a meter question. We got a One Touch Ultra Smart with his pump. We were using it and I liked it just fine, but I had gotten so used to the Freestyle Flash. I just like it's size so much more and I absolutely love that the strip lights up. It makes the nighttime checks so much easier. So, I just bought 100 strips for the Freestyle, which we all know ain't cheap. ($94 and some change) I will go through them in less than 2 weeks. Well, last night when I went to check Riley's sugar at 3 PM, he was halfway off the bed. I scooted him back over and when I did, his lancet fell behind the bed. It took me forever to find it. When I finally found it in my sleepy fog, I looked and there on the bed was his Freestyle meter and two, count them, two test strips. Now, if you've read my earlier post, you know test strips jump out of the trash around here and scatter themselves about the house. I'm thinking one is old and one is new. But, which one? I'm guessing the used one will show an error message when I put it in. No such luck, they both work. So, I check with the first, 255. Like I said, his sugars don't usually run high at night. So, I think this must be the defective strip. I try the other one, 123. Now, that's more like it, but I wanted to be sure. Out comes the One Touch Ultra Smart. It registers at 242. More like the first reading. The same strips work on the One Touch Ultra, so I get that one out, change the code, and try again. 242 also. Alright, maybe the Flash works OK. I go back to bed, but not to sleep. I lay there for a full hour, wide awake, thinking about blood sugar machines. I get up to test again at 4:00. I just used the Flash this time. When Michael got up at 5:00, he used both machines, and they both came back the exact same number. But, I'm still paranoid that the Flash isn't working appropriately. The meter I used tonight when he had his low, was an Accucheck Aviva. I've never used it before tonight. It came in my JDRF Bag of Hope. (It did come with a nice lancet that I've been using ever since it came, the Multiclix. ) What should I do? Trust the Flash? Or switch back to the One Touch? I know no machine is perfect, but I want the one that is going to be the most accurate. When you are 3 (or I guess any age) there is a big difference between a 55 and a 77.
Have I ever mentioned that I hate diabetes? If I haven't, let me say it now. I HATE DIABETES!!!!!!
Holden and Michael at a Cubs game, July, 2003 Holden, me, and Riley before a baseball game. ? 2003
This one is up here twice by mistake. Holden and Riley, Christmas, 2002
Holden and Riley before an Allstar game, 2003
This is Riley in the front yard. Probably in 2003.
Riley again, (in his Duke chair) 2003
Riley at the beach. Summer, 2005. Showing off his muscles. (and his ribs)
Holden, around 2001 or 2002 with our dog, Lizzy
He still plays video games.
He still goes to the park and plays.
He still eats the occasional sweet. He didn't eat sweets much even before he got D.
He still fights with his brother.
He still tortures the cats sometimes.
He still watches Spongebob every morning.
He still runs around the house with a light saber slaying the siths.
In the grand scheme of his life D doesn't really interfere with much. He has to stop playing his games long enough for me to check his sugars. Maybe about a minute at the most and then he's right back to playing. I just think that he doesn't see D as a nuisance, just a part of life. I've realized I have to see it that way too. I don't want my negative attitude towards D to affect the way he sees D. I realize that he may change his views on his own as he ages. But, I wonder if I stop talking about D all the time, maybe he'll continue on with the attitude that you just pause your normal life for a minute or two to deal with your D and then you're off again. I so want him to always feel that way. I realize that some days are going to be worse than others for him. When he starts doing more on his own, it will take more of his time. I just do not want his D to define who he is or what he does.
So, what would he be doing now if he didn't have D? He'd probably be playing a video game, just like he is right now. Then, he'd go torture the cat a while, as I'm sure he'll do later on in the day. Then, he'd catch an episode of Spongebob, take a nap, and then pretend to be a jedi. All of which he will probably do today anyway.
Tuesday, March 07, 2006
A comment to my post a couple of days ago made me go back and read some of my blog archives. I received a comment from Chris whose 3 1/2 year old was recently diagnosed with D. It just brought back a flood of emotions for me. I don't even know Chris, but the pain that I have in my heart for him and his family is tangible. I can empathize with what he's going through right now.
Yesterday marked 5 months of living with D in our lives. We've really come a long way. I went back and read some of the earlier posts. Several of them made me cry. They brought me right back to that moment in time. I have certainly run the gamut of emotions over the past 5 months. And I've made it through all of them with my hope still intact.
There was one post where I listed Riley's sugars and how bad they were. Now, looking at those sugars I think "What was so bad about them?" We've had much worse since then.
The pump is going much better now. Since his basal adjustment yesterday, his highest sugar has been 150. Woohoo!!! It may not last long, but I'm going to enjoy it while I can. Today is set change day. I'm not really looking forward to it. It will be my first time being home alone while doing it. No one here for emotional support or to calm Riley while I'm focusing on what I'm doing. Michael won't be home until late tonight. I think I might wait until Holden gets home from school, so he can distract Riley while I do it. Or maybe, I'll use the TV for that. I don't know why I'm stressing so much. When I use the Emla, Riley doesn't really seem to notice the insertion. But, the couple of times I wasn't able to use the Emla, it was painful to him. I'm afraid he's going to remember that and give me a hard time about putting it in. I'll just wait and see.
After I got done washing dishes yesterday, I looked in the drain and found none other than a test strip. Holden had been drying dishes and saw it and decided to start a test strip collection. He found a tin box and has now started collecting used test strips. (Only from Riley of course.) How weird is that? I'm ashamed to say he scoured the house, under the beds, on the nightstand, under the couch and couch cushions and found over 40 strips. I'm not a slob. Really. It's just that they get discarded in the weirdest places. They have problems actually finding their way to a trash can around my house.
Gonzaga won the WCC tournament last night. Yeah!!! Even as sleep deprived as I am, I stayed up until 11:20 last night to watch the game. It was very close the whole game, but the Zags pulled it out in the end. Riley was watching the game with me for a little bit last night. ( I had to watch it in Holden's room, because Holden and Michael were glued to the TV in the living room. 24 was on at the same time.) I showed Adam Morrison to Riley and said "He has diabetes like you." He just turned to me and asked "Well, where's his pump?" I explained that he doesn't wear a pump while he plays so it won't get broken. He said, "So, that's what I'll have to do when I play." Never crossed his mind that he couldn't play, just that he'd have to do something with his pump while he played. I asked him if he was going to play basketball in college. "Yes." Then I asked who he was going to play for. "Duke", he said with no hesitation whatsoever. I guess I've raised him right after all. :-)
Speaking of Adam Morrison, I just bid on this shirt on ebay.
Monday, March 06, 2006
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!!
Sunday, March 05, 2006
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.
Saturday, March 04, 2006
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.
Friday, March 03, 2006
PS : Riley gets so excited everytime I bolus him. He just grins and asks, "No shot?"
Thursday, March 02, 2006
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.