Day 2 so far

Dad is currently 42 hours post surgery, we have already been warned that this is the hardest day. Lots of pushing him to breathe. To eat. To cough. Dad did GREAT overnight, except he was quite vulgar and angry with his male nurse. The first thing he said to me this morning was "That nurse is so mean to me, please stay with me, dont leave." I asked Dad why the nurse was so mean, and he said because "I was mean to him." I told him that this is a new day, with a new nurse. I told him they understand the anger and frustration. Move forward, only think of himself and don't worry about anyone else.

Dads talking alot today. Everything he says is heartbreaking. He is pleading in pain, and telling me how bad he feels. Then he apologized for "releasing his sorrows on me." All I could do was tell him thats why I'm here. He says he doesnt remember yesterday. Thats good. I hope he never remembers today either. He has already been up to walk today and walked alot! He is coughing strongly. Breathing well. All vitals are remarkable. Every time I tell him how good things are going his eyes light up and he says "Wow"

My mom, sisters and I finally slept decently the first time last night. We feel refreshed and more able to stay strong. Praying Dad does too.

OH....let me mention...... The Diabetes police hit me at the wrong moment this morning. They really shouldnt say anything when I'm in this emotional state....The girls are here at the hospital with me today..... They just hang out in the waiting area with us so I can still be here. I took the girls to the cafeteria first thing this morning. They got bacon, eggs, milk, apples and a donut. Paying in line, the cashier saw my JDRF shirt and asked if I work for them. I said "No, my daughter, Dad and I all have Type 1".....I COULDNT BELIEVE THE NERVE OF THE RN BEHIND ME!!!!!!!!!!!!!!!!!!!!!!!!!!
DO YOU KNOW WHAT SHE SAID!!!!!!!!???????She said "WHO ARE THE DONUTS FOR THEN?"

I spun around and gave the most evil look. I think I even grew horns for a moment. I couldnt help it. It was a reaction gone bad. I'm so ashamed of myself for the way I responded, but I'm stressed out here people!! I said "FUCK YOU LADY, you have no right to speak one word about the food ANYONE eats." How terrible is that? I guess I really am an emotional basket case! I felt like such a loser! I rambled on as everyone stared at me. I felt like the scum of the earth at the moment. I went on saying we dont eat donuts everyday, I showed her my pump, asked her if she knew anything about Type 1 Diabetes, told her all kinds of stuff. I dont really remember half of what I said, but I know it wasn't nice. I was the freaky person losing it in the cafeteria today. Man, how embarrassing. Stress does funny things to you!

Never prepared

I guess you can never prepare yourself enough for seeing someone after such a major surgery. Today is the hardest day. Once the anesthesia wears off, its back to consciousness and the pain (misery really)begins. I was mentally prepared, but my heart just wasn't.

Last night seeing Dad for the first time was nothing compared to this morning. There's even more tubes. He's moaning. He's pleading for morphine. I dont know how they do it, or even expect it, but it was time to get Dad up to walk a few steps. He's totally out of it, he doesn't even seem like he's there, but he HAS to take some steps. He kept mumbling "this is torture" through his skraggled breaths. In and out of the morphine craziness. This man's strength is incredible. I keep telling him that. His nurse is amazed with how well his vitals have been staying consistent. He sat up "better than most" at the edge of his bed, but refused to stand and take steps. Then his silliness kicked back in, even with all his suffering! He told the nurses "There I took 10 steps" and said "done." :) Thats the best news ever.

I can't stop praying for Dad to remain complication free. Praying for his comfort and strength to push forward. I feel so terribly, entirely, horribly, bad for what he is going through. One minute at a time right now.

The nurse just came out to the waiting area and said Dads ABG is off, his PH is dropping. Hemodialysis is also about to start. He is being placed on an apnea machine. This rollercoaster of ups and downs is so scary. So draining.

15 hours

After 15 hours at the hospital today, I'm home. I didnt want to leave, I still want to go back. I'm addicted to blogging at the moment, because I feel so relieved afterwards. I have to get a few more things out before I can go to bed for the night...

Immediately after the surgeon came out to talk with us, my Mom burst into a weeping cry. She had her moment. I hugged her tight and she smiled the brightest sigh of relief you could ever imagine. I was so happy she finally had her release of pent up emotions.

It was two long hours before we could see my Dad after surgery. My mom and sister went in first, I was trying to gain my composure. I just couldnt do it. I knew exactly what to expect and I just couldn't face it just yet. I needed to breathe. I didnt want to see the tubes, and I was a mess inside knowing Dads neck would once again have a Dialysis catheter protruding. My Mom returned saying that Dad was was shaking his head "no" in an uncontrolled motion. Back and forth, back and forth. I wanted to vomit as I pictured that in my mind. Somehow, I found the courage to go hold my Dads hand.

I thought this would be my moment. I thought I would melt down. But, I didnt. My heart felt like it was non existent. I'm still wondering whats wrong with me. Why can't I just let out all this sadness and fear I have inside? I paused for a moment at the door when I saw Dad shaking his head back and forth. What a terrible thing. Is he telling us something? Then his nurse smiled when our eyes met. I think I love my Dads nurse. She scooped me up and answered my every question. Dads vitals have been VERY GOOD she says. His blood sugar is stable at 120. He had some atypical bleeding that is now controlled. She assured me he is doing amazingly well. I really do love her. She was so informative. She made sure I knew the Kidney doctor was again consulted about his Dialysis. Dad stopped shaking his head as I rubbed his shoulder and talked to him. He was completely out of it. He wasn't there. And I didnt cry. Because I know his nurse is awesome.

From worry of making it through surgery...to this. The most critical days lie ahead. I'm scared to death of complications. Complications is what I have feared most. I feel lifted up in prayer, and I will sleep better tonight because of it. I've lost some faith along the way in the past few years, but tonight, I know. I know the power of prayer is with us.......

Quintuple

For those not on facebook, the surgeon just came out and updated the surgery went well. A quintuple bypass. Heart function is doing well. Words could never express the gratitude for everyone's prayers and concerns. THANK YOU ALL SO MUCH! Please continue to pray that Dad stays free of complications and recovery goes well. We aren't in the clear yet. A long road ahead. I LOVE you guys! Thank you so much Wendy for being there and listening to my crazy text messages in all my distress!

Waiting

55 minutes down. So many hours to go. I knew my time would come. An hour before Dads surgery time I started to pace. I knew they were coming for him soon. I felt hot. Maybe low. Nope. I was 167. Too much coffee? Nope. Just reality setting in, a moment of weakness. Then came the nurses from the O.R to take my Dad up. And then, it hit me.

That lump in your throat. The burning of your eyes. I wanted to lock myself inside the bathroom and weep. Dad was still joking with his nurses. He does that when he doesn't know what else to do. As we followed him down the hall to the O.R he made me laugh. He always does that. He asked the nurses "Is this the time I'm supposed to freak out?" All I could do was laugh. Thank you Dad, for always easing my fears. My pain. My frustrations. Thank you for filling my life with laughter. It was then that peace was with me again. The tears ceased, and all my pent up anxiety was lifted as if magically. All from one of Dad's little jokes.

I think the clock has stopped. Surgery just started an hour ago. I keep wondering whats happening in that O.R, I need to turn the wonder off. I think I have been praying for the last 48 hours straight in between conversations. How do we make it through these hours of waiting? I've never been so scared in my life.

Dad will need to go back to Hemodialysis (instead of peritoneal) during his first few days of recovery. At first he resisted. He refused. He wanted us to continue Dialysis the way he has been doing it the past 7 years. He didnt want the surgical placement of the dialysis site in his neck again. He suffered tremendously while on Hemodialysis that first year. He was so weak he couldnt stand well, and he dropped about 15lbs from his already tiny 160lb frame. He changed his mind with a little more understanding that this would only be temporary. Thank goodness.

I can't say this enough.....I just dont get the lack of Type 1 knowledge on the nursing floor. Todays insulin mishap had me steaming. Dad took his NPH yesterday at noon. Surgery was moved back to 2pm, so they didnt plan on giving him his NPH shot before surgery because he was 160ish. Ummmmmm......????????? Two hours without any insulin is his body? He can't go from noon to 2 without insulin! By 11am The NPH had already started to wear off, his BS hit the 250's. Then they took a wild guess and wanted to give 10 units of Novolog for the high. I dont know what the right answer was. But no insulin for two hours?

Back to feeling numb now. I know that will end the instant I see my Dad post op.....

8am

Tomorrow morning at 8am my Dad is scheduled for surgery. My mom is a mess. My sisters are a mess, and I'm still emotionless. For a few moments today I began to feel the shocking pains in my heart as I sat alone in the dark hospital room watching my Dad drift off to sleep after a brutal low blood sugar. Only for a moment. Then the emotions ended as quickly as they started. WEIRD.

Dad was overdosed on his NPH insulin this morning, on top of already trending low for days. Then they bolused him 6 units of Novolog after breakfast for a 214 blood sugar. (that would have come down on its own) At barely 160lbs, 6 units of Novolog was WAY too much for my Dad. We couldnt get him out of the 50's all day. Being on Dialysis Dad isn't supposed to drink much fluids so juice cant be used for lows. So, we used all the glucose tabs I had stashed in my purse. Have you ever eaten glucose tabs until you want to barf? As if his condition isnt bad enough without lows beating him down. I could totally understand how he was feeling right then. It was painful to watch. Did I mention they only check his sugar once a day? Him and I have been chasing these lows ourselves. Talk about feeling alone. I just dont get why the nurses dont follow blood sugars! All I keep thinking is, lows and surgery don't mix. Neither does an insulin drip during surgery when you have been low for days. Thank goodness for D5 I guess. I just hope they keep his blood sugar safe. I know thats the least of our worries, but its just an added stressor considering I'm a pancreas for two 24/7/365.

They had us watch education video's tonight about the surgery. What to expect, how the procedure goes, recovery....all that. It wasn't such a good idea for my Mom. By the time I left tonight Dad was a nervous mess (worried about his BS mostly) and Mom was even worse. And here I am, emotionless. Thats a scary feeling.

This is a major surgery for anyone. My Dad is considered high risk above all that. Thats the scariest part. Its not like he is just a CHF/CAD patient going in for this. He is a Diabetic with long standing complications and a Dialysis patient. His circulation is poor. He doesnt heal well. I could on and on. Despite all that, I'm very optimistic. His surgeon is one of the top in the United States they say. I have full confidence in him. I got to speak with him again tonight about the veins they will take from his legs to graph the heart vessels. The doppler earlier today looked good, and they plan to remove at least 6 veins for the surgery. Hearing that was a bit shocking. I just can't imagine. I just can't grasp the fact that they do these things every day. Healthcare today is miraculous. I know my Dad is in good hands. Telling my heart that is a different story.

Tomorrow will probably be the longest, most emotional day of my life. I might even have Josh take over blood sugars checks tonight so I can sleep a straight 8 hours. I'm off to bed. Thanks to everyone who's comments keep me focused and confident that my Dad will be okay. Keep the prayers coming. We need them more now than ever.

Not sure what to say

I'm not sure what to say right now. Just the basics I guess.

Tuesday my Dad started feeling terrible. "Heart burn" with problems swallowing. Shortness of breath. Weakness. Fatigue. Low blood sugars. He changed his mind. He decided he should have had the open heart surgery. I knew he would after resting at home awhile. A few days past, he still felt terrible. He didn't want to "ruin" Christmas by going back into the hospital. So he suffered through. Tonight we took him to the ER after calling his Cardiologist and giving him the scoop. Dad was admitted right away for CAD and low potassium. Surgery is likely on Tuesday.

I have no emotions, but my Dad sure does. He seems very scared for the first time ever in his life. He hugs a little tighter. He tries a little harder to smile. But I can see deeper. I know the fear inside of him. I can only imagine, yet I feel it just the same. I don't know what to think about this major surgery. I'm hopeful. So entirely hopeful, with every ounce of my being. I'm emotionally exhausted. I'm angry and tired of watching my Dad live this crazy life because of Diabetes. I have alot of blame right now, I can't even feel it, but I know it's there. I dont even know if that makes sense. I blame Diabetes for inflicting all this on my Dad for so many years. Without Diabetes, my Dad would be the healthy and active 64 year old man that he should be. But he isnt. And that makes me angry. Every little finger poke to Maddison's tiny fingers means so much more lately. Its not just a finger poke. It's Diabetes. And I hate Diabetes so much right now.

Please pray for my Dad. Please pray that he is strong enough to make it through surgery and give yet another fighting chance. Please pray that he recovers without complications. And don't forget to pray for a cure.

Christmas 2009

Christmas is normally spent here at our home. Both sides of our family gather early in the morning, and we enjoy each others company the entire day. That was the plan again this year, but my Dad hadn't been feeling well the past two days. After the girls, the goldens, Josh and I celebrated our own family time in the wee hours of Christmas morning, my mom called. So, I rushed off to Moms house (luckily just a few miles away) to try and convince my Dad to consider ER. No luck. I wasn't surprised. He was actually feeling a bit better (when laying down) by this time, so I got approval to move Christmas to their house so he would be more comfortable. A quick run back home to gather food and gifts, then Christmas was back on track :)

And it was a FABULOUS family, fun, food filled day. The only thing missing was my sister, Melanie. She was very sick and couldn't make it to Christmas! It just wasn't the same without her! She spent every day after work at the hospital with Dad the week before, and every night at Mom and Dads house helping my mom prepare for Christmas. I think shear exhaustion played a part of her illness :( Tomorrow we look forward to making up for it with another Christmas at Moms.

Maddison was delighted that she actually got the American Girl Doll she dreamed of. Hannah was impressed with her new Coolpix camera. Josh was surprised to see I bought US a trip to Vegas. Our FIRST EVER time away without our kids. TOTALLY OVERDUE, and I can't wait. I'm not even nervous leaving Diabetes behind! Maddison's anyway LOL)

Flying by

Oh how the days fly by this last week before Christmas! Maddison's blood sugars have been AWESOME despite all the Christmas celebrations and sweets. Her meter average is 160 and we've only been poking those tiny fingers 4-8 times a day! That REALLY gives me so much relief from Christmas craziness! Thats truely all I could wish for, Diabetes behaving. Maddison is still taking a break from the CGM since everything has been "stable." ((KNOCK ON WOOD))Our support group Xmas party was on Saturday (I forgot my camera!) and it was a great time as always! Hannah is busy having sleep overs at our house nearly every night with her friends thanks to Xmas break. Oh how I love these 13yr old girls! They giggle so much. They are so full of energy and have dreams of so much. They are SO funny to listen too.

I had dinner with my Dad last night while Hannah had Volleyball practice. He looks GREAT. He seems much happier than usual, and he's even more ornery than his normal self! He told me that he thinks the Cardiologist "exaggerated" on the extent of his blockages. Thats just like him. Some things never change! He also said he thinks they push surgery on everyone for the money. All I could do was smile, but cry in my heart. Thats my Dad. He is looking so good and feeling so well that it gives me an enormous amount of hope. Or, maybe its denial.

I'm stuck working this week while Josh has time off. I hate not being home when my kids are home! I was SO proud of them yesterday though, they actually completed everything on their chore list, and I came home to a decently clean house :) I'm hoping everyone is staying sane these last few days before Christmas! Best wishes to make it through!

Like nothing's going on

Today was officially Day 1 of Xmas break for the girls. We got to sleep in. That alone made my day! After Maddie's doctor appointment we went to visit my Dad for lunch. He looks good. Back to life, as if nothing is going on. Deep inside I know there is a ticking time bomb. How do you pretend its best to not even acknowledge that? I'm so confused inside that I can't even feel. I just don't know how to move on past the worry and fear that these are the last days my dad is alive. Tonight? Tomorrow? A few years? How long until the time bomb takes my Dad from us?

Xmas break Day 1 has also brought lows for Maddison. I just dont understand why insulin needs are so much less when she's home than when she's at school. Is school really THAT stressful for her? Seriously. Leave the girl home from school and its like her pancreas works again. I just dont get it. Good thing I have a school pattern and a home pattern set in her pump. Now if I can just get the home pattern adjusted right over the next few days I will be much more relaxed and ready to get Christmas over with! Terrible, I know!

Dad is home

My Dad just came home from the hospital. I still have mixed emotions, but my Mom says there isn't any changing his mind about the surgery. We will all be heart broken either I guess. Thank you all for your continued support and well wishes! I guess its time to move forward and not think about what lies ahead.

This is why I cant sleep ( a novel)

No way did I think my Dad should have the CAGB surgery they plan. (Coronary Artery Bypass Graph) Too many risks for a man of his condition and history. Our main concern is DVT and post operative infection. Could you imagine if my Dad suffered through this major surgery only to pass shortly after because of a complication? The suffering he would go through in his last days post operative would eat us all alive. I dont want him to suffer anymore. I think the last 30 years has been enough. Slowly. One thing at a time has taken so much.

When my Dad was dx'd with Diabetes back in the 1980's the doctors assumed he was type 2 because of his age. He was placed on oral medication, and for nearly a year he suffered. Can you imagine? I honestly don't know how he didnt die. A few months later, he injured his finger at work (a "simple" bruise) It wasn't even an open wound.....but it became infected an gangrenous. After amputation surgery, they realized he was Type 1 and needed to start insulin.

The NPH days. Exchanges. No education. No internet. Just a "dietitian" and a primary doctor in a small town in rural Missouri. I remember my Dad being sick ALOT when I was little. I remember his lows and how shaky, pale and exhausted he would get. I remember him vomiting alot with frequent stomache pain. Dad always did what he needed to do to manage his Diabetes. He always ate right following the "exchange" rules. He always took his insulin. He worked in a factory and was always moving. Always going. Weekends were spent zooming around. Yard work, working on cars. Building anything and everything. Fixing anything in sight that needed repair. Many hospitalizations later and years past..... I can't recall which came first, the repeated surgical attempts to save his eyesight or the TIA. Whichever it was, once it all started to happen, it was like a snowball rolling downhill.

After the blindness took over, Dad had to leave work. Taking work from this active man is like taking the sun from the sky. I think sadness from disability played a big part in the downward spiral as well. Next came kidney failure. Dialysis many hours a day in the clinic was pure torture. It just couldnt continue that way. So my Dad did what he always does, and took the bull by the horns. He took classes to do his own Dialysis exchanges at home. To this day, 7 years later, my Dad is still doing his own Dialysis every 4-5 hours around the clock. And we think we are tired.

Dad has a catheter that is implanted into his abdomen for his Dialysis. That catheter has caused an infection nearly each year over the last 7 years. Each infection made him very, very sick. Diabetes isn't kind to infections. We are no stranger to hospitals in our family. Then, last year came Charcots foot and risk of amputation. Dads foot healed amazingly well. Now it is again broken per the xrays yesterday. Enough is enough. I could never express enough how hard this disabled life has been for my dad. If there is a complication, he has had it. Can you imagine how a Dialysis patient feels? Dialysis is life support, it is not a cure. Looking at my dads labwork each month I can only imagine how he feels every day. (and I wont mention how lonely he is with his kids all moved away and a wife that works 50+ hours a week) His labs are a mess. Dialysis does horrible, terrible things to your whole body.

I'm not saying we have given up. It seems we are stuck in a position where surgery is just as scary as no surgery. Which one will win? Today, I was all for surgery. I think if my Dad has a will, then he can fight this. Unfortunately, today he doesn't have a will. He wants to place his fate "in god's hands" and refuse surgery. I can't say I blame him, but today I felt differently than I had all week. I want him to have the surgery. He COULD be fine and recover beautifully. He could. He really could. Ultimately, it isnt up to me and I'm scared to death of whichever decision he makes. My mom, my sisters and I have sat all week beside Dad. Each of us emotionless. Feeling helpless and hopeless for which ever decision Dad chooses. This is a terrible place to be. I can only imagine how he feels. I hope he isnt basing his decision on my mom. I hope his decision is for him. I'm so torn. So heart broken. I dont even think my heart is beating at this point. I feel so empty and confused. I know this is the calm before the storm. If he refuses surgery I think I will have a total meltdown. If he proceeds with surgery, well, I will feel the same way filled with worry and what if's.

It is 1am and I should be sleeping. I just can't. I can't turn it off. All the what if's. Surgery or no surgery? I don't want my Dad to be persuaded either way. If only there were other options. If only my Dad never had this fucked up disease! I know he could have been so healthy in life! Diabetes didn't give him a chance.

I argued with the doctor today. I didn't mean to, but it all came out. All the frustration. All the hatred of how the hospital takes over my Dads insulin after he has been doing this for 30 years. Monday they stopped giving him his NPH. They were only giving Regular on a sliding scale for highs. (because he had one low) Of course then he was too high (250's) so they decided to start Lantus. My dad has never used Lantus. They have no idea what dose to start with. So now they are giving Lantus and regular for highs. And, now he isnt budging. After lunch he hit 320's so they gave him more regular. REGULAR!!?? This is 2009 people! Ever heard of Novolog!!?? At dinner he was 450. So they gave him more regular and dinner. DINNER. At 450 with just regular. WHAT IS COVERING FOR THE FRICKIN FOOD!!?? If they dosed regular based on a 450 blood sugar, then he ate, so that amount given was only for the 450 high and not for the food. So what the hell covers the food!!!??? I was freaking out. Never having used NPH or regular with Maddison HAD to understand what the hell they are doing. I talked to Mrs Wendy. :)

Wendy assured me they know what they are doing, though I still dont get it. But, if Wendy says so, I trust her 100%. My Dad is pissed off because they screw him up every time he goes into the hospital. Now he can't go home until they have his blood sugar "controlled." (infection is passing by the way) Can you imagine going into the hospital and handing Diabetes over? Well, they didnt give him a choice, and....he was too sick. Obviously he needed that insulin drip in the beginning, but now he should be able to take back his Diabetes care. They wont let him. They say, because his A1c was uncontrolled (8%) and they want him under 6%. All I could do was laugh, and thats what sparked my furry. Give the man back his Diabetes care. He is the expert. I was ready to fight. Only it didnt do any good. :(

So. I cant sleep. Maddison is hoovering around 118 on her CGM. This sensor hasn't been very accurate yet. I still have to re-check before I go to bed. Tomorrow is the last day of school until January 4th. I'm SO excited. All I want is a break from school stress. (thats another novel for another day) And a CURE would be pretty nice too.

Waiting

Today my Dad developed a low grade fever. They are trying to determine the cause. He is coughing up alot of yuck which shows some bacteria. Most likely he has Pneumonia, but no one has diagnosed that officially yet. Or at least they haven't told us. My Dads daytime nurse is great, but she isnt very informative. We missed the hospitalist this morning, so there hasn't been anyone to really answer our questions. I've asked his nurse until I'm blue in the face, but she just responds with "You'll have to ask the doctor about that." Its very frustrating.

The nurse also threw in mention of Congestive Heart Failure, which we hadn't heard anyone say anything about until today. His severe nausea has nearly diminished, which is huge for his comfort level. Thats one thing I am very grateful for. My Dad is a very silly man....he doesnt tell you about new symptoms or ailments until after something has become obvious physically. He never mentioned to my mom that he fell on Sunday morning in the midst of his 1300 blood sugar. (before going to the ER) The result is a badly bruised ankle, his "good" foot. Xrays didnt show a break thank goodness. Being his history of Charcots foot, that was great news. The nurse overheard Dad say his throat hurt, so she jumped the gun assuming he has the flu. The flu swab was negative. I'm even more grateful for that. His throat soreness is likely a result of the repeated vomiting, and past history of Esophagitis and ulcers. My poor Dad just has ick everywhere.

Right now we wait. We wait to hear whats causing the infection and we wait for the infection to pass before surgery can even be considered for his heart. They have done so many screwy things with my Dads insulin. First they stopped the 70/30 he takes every morning and just used a sliding scale for corrections. He didnt budge from the 250's. Tonight they are adding Lantus in hopes of getting him out of the 300's since infection set in. Its all experimental. Dad hasn't taken insulin besides 70/30 all his life, so they have no idea what doses to start with. That really sucks.

Thanks to everyone for your continued prayers and thoughts of our family! I'm still pretty emotionally void today, I just dont know what to think. I will keep you all posted.

DNR

My Dad has a DNR order. (Do not Resuscitate) I never gave that order much thought. Today I have, many times. Here is the update on my Dad.....

Sunday he went into the ER for vomiting and a meter that read HI. His blood sugar was over 1,300. No reason. I went to visit my Dad for a few minutes before work this morning. I had to see him with my own eyes before going on with my day. A bit too comfy on morphine (he has hip and back problems) so he pretty much stared right through me. His blood sugar was down to 900. Two hours later my mom called me at work. Labs results showed he had a heart attack, which was the answer to the high blood sugar they say. He was going in to the Cath lab, so I left work to be with my mom. Results aren't good. 9 or more cardiac vessels blocked at 70% and one artery 80-90% blocked. Regardless, they say his heart is nice and strong. This isn't good for anyone. Especially not for my Dad. He isn't healthy. He is a Dialysis patient. A smoker. He has COPD, a history of of TIA, blindness, amputation, severe neuropathy, Charcot's foot. This is very, very bad.

Then came the D5. After my Dads cath procedure, his blood sugar plummeted. From 900 to under 60 in just a couple hours. Just like that. Insulin drip still going. How is that even possible? Even 6 hours after sedation for his procedure he still wasn't fully awake. Blame that on the cocktail of drugs. He has no idea what has even brought him to the hospital.

The surgeon came and spoke with us briefly. We want him to consult again tomorrow when Dad is more understanding of what open heart surgery could mean. I don't think my Dad can recover from a surgery such as that. His risk of infection, or secondary infection is just too high. Worse, they want to take the veins from his leg for the surgery. How can you take the veins from a man with SEVERE neuropathy? His risk of infection from that alone is huge, and thats just his leg. Then there is his crazy high risk of DVT. Pneumonia. Coding on the operating table. DNR. I'm pretty emotionless today. I only cried when it was time to leave. I didn't want to go. I still want to go back. A part of me still thinks my Dad will refuse the surgery. He's been through so much. He knows. He knows that the risk is huge for someone in his condition. Please pray that my Dad remains comfortable. I think right now we need to pray for a miracle. Miracles do happen.

Please pray

Please pray for my Dad. He is in the hospital in DKA. They aren't sure if its an infection of his Dialysis catheter or not yet. 30 years of Diabetes hasn't been good to my dad. Please pray.

Oh brother!

Diabetes and McDonalds

Oh Man. I just came across this headline in the news. If this doesn't screw our kids with others uneducated outlook on Type 1 I dont know what does. Meal choices for people with Diabetes? We get our own menu now! You better not order from the regular menu or the Mcdonalds food police will come get you! How about meal choices that are healthier choices for EVERYONE? The intention is good, but it still annoys me.

------------Flat Lines-------------------------

Did you see that? ----------------------This is what Maddison's CGM looked like for 6 whole hours last night----------------------------.From Midnight to 6am, Maddison's blood sugar stayed between 120 and 143. Have you any idea how LONG I've been chasing numbers at night? I'm sure you do. The last few days Maddison's nighttime numbers have been really good, something I have worked on again for MONTHS. Seeing this progress and knowing my sweet Maddison is her healthiest at night is priceless. Lets hope this continues at least another couple nights. I think the days of not having to constantly adjust insulin doses are gone. I'm always changing something. Always. Looks like this is just our new "normal." Thats really hard to swallow some days, but even just one night of -----------------------really makes a difference in my outlook.

I still trick myself into believing that it is possible to go through times where I dont have to make adjustments to avoid Maddison's highs and lows. You know, the times when things are actually predictable and you dont have to change anything? I think the last time we had a "calm" streak with Maddison's blood sugars was.........last year. Yep. Its been a long time. I think our new normal is one week of decency followed by chaos. Adjusting. Almost there. Good. Great for three days. Nope. Highs. Adjusting. Adjusting. Adjusting. I think I'm gonna scream. Oh, progress. Progress. FINALLY. Nope. That was just one good day. Lows, what the hell are these lows!!??

Oh well. This is Diabetes. Who would have known? Those first easy couple of years really tricked me. I thought I could do THIS. But THIS wasnt what IT was really going to be like. Now I see. It is what it is. I think us D moms are some of the most resilient people on earth. Man, we are amazing!

Love it!

Thank you Meri for this very thoughtful award! For receiving this award, I’m supposed to write about 5 things that I love......

1) Cyber Diabetes- without the internet world of Diabetes education, facts, forums, blogs, advice, PARENTS.....I would feel oh so alone. Our children wouldn't be nearly as healthy as they are because education is truely LIMITED if you go by what the hospital, Endo's or CDE's teach alone. I cannot stress enough how the online Diabetes community has given me UNDERSTANDING, HOPE, PEACE, HAPPINESS, ACCEPTANCE, and FRIENDSHIPS that I would never have found otherwise. From the adults at Diabetesforums.com to the parents at CWD I LOVE LOVE LOVE YOU ALL for giving me so much knowledge and support back in the early days when everything was so overwhelming and confusing. LOVE IT!

2) My girls, thats too obvious...hmmmm....Coffee? Yes, I LOVE coffee. That one (big)yummy cup of coffee each morning is what makes the past nights lack of sleep bearable.

3) The "Hood" My neighborhood. Kinda a love hate sometimes because its always so busy! We all moved in 10yrs ago when the neighborhood was built and we were all pregnant at the same time with our 2nd child! AND our oldests are all born the same year! Gotta love it! Friendships, fun and watching our kids grow up together, nothing beats that.

4) Aunt Christie. Always going the extra mile. Always there. Always putting everyone else first. She helps us more than she could ever know. In huge ways and small ways. A dedicated hard worker, almost done with her Ph.d! I think she's the most caring and understanding person I know. If I could have chosen a sister to grow up with, it would have been her.

5) My husband? I'm supposed to mention him right? LOL He drives me bonkers. He drives me MAD. I'm so NOT blinded by love anymore. Those days are far gone, but I think I will keep him. He loves his kids like no other. No matter how many times I complain about this or that, when it comes down to it, we are in this crazy life together. Always.

Now, 5 friends who I would like to pass this very prestigious award on to…Hmmmm....I can't award the same people.....bet you didnt know I consider you a friend!! Cyber friendship through Diabetes is one of the greatest friendships!

Carey Potash at DLIFE (We aren't actually "friends" but his blogs makes me LOL no matter how crazy life gets!)I SO wish I had his sense of humor!

BETH who doesn't blog nearly enough! Geez lady! What do you do all day? :)

KRIS who I don't know all that well, but I do know you are an amazing mom and we think alot alike!

HEIDI A GREAT BLOG!!

Tracy I think she's got 2 of the cutest kids EVER!

Weird timing and 3rd grade math

I FINALLY gave in and went to see my doctor today. This was day 5 of my continuing fever, when I realized my lower back really hurts! All these days I thought my fever and body aches was from the flu Maddison and I have been fighting. NOPE. Well, maybe at first. Today it became clear, very quickly, that I have a kidney infection looming. What weird timing! I tell ya, for me its all or nothin'!!

I was quite bothered with my Dr visit today. I didnt get to see my regular doctor, a PA actually. I saw another doctor in the group who wasn't very thorough. I'm sorry... I guess I expect doctors to be on top of past medical history and current medical conditions. Is it too much to ask that they review your chart? This doctor was concerned with my high level of ketones. Not once did he ask what my blood sugar was. Isn't that kinda important? What if I was in DKA? What if I was a person with Diabetes that wasn't on top of all this? He asked if I had eaten lately, I said no I hadn't eaten at all today, and he said I needed to eat something to get rid of the ketones....this was true for me today. I hadn't eaten, so besides being sick I also had elevated ketones becuase I hadn't eaten all day. My blood sugar has been 60-127 the past week since I've been ill. WEIRD. I dont go high when I'm sick. But WHAT IF my blood sugar was as high as my ketones!!?? He never once asked me about my blood sugar! I just don't feel like doctors are in tune enough with their Diabetic patients, no wonder there are so many people with Diabetes that go downhill.

What if I had ketones and terribly high blood sugar? He wouldnt know..BECAUSE HE NEVER ASKED ABOUT MY BLOOD SUGARS!! Sheesh. I just couldnt believe that.

Ms Maddison spiked a fever again tonight....WEIRD. How can you have a fever and be on Anti-biotics? -Sigh- Guess something still isnt right somewhere. Poor girl. She's been sick over a week now. MATH....catching up on math.......3rd grade is learning multiplication right now. Just starting to learn. So where the heck did these problems come from....

m + 6 + 21 = 70

3 x 2 x a = 42

36 = t-9

16= 4xq

ARE YOU KIDDING ME!!!!????? THIS is 3rd grade math? I'm so frustrated and irritated with our school!! The expectations are ridiculous. can't we master something before moving on to the next lesson? The kids JUST started learning multiplication after Thanksgiving and now they are pushing THIS on them? In 3rd grade!!?? Needless to say, Maddison is struggling. Again. And I have to fight for her to keep an IEP? Our meeting is scheduled next week. SOMEONE has GOT to step in and help Maddison succeed. As a parent I do my part, so what happens when that isn't enough? We are caught up on missed work, but as quickly as schools move ahead these days there just isn't enough time to master anything. Its all up to me to make an educational plan that will keep Maddison from falling behind? What is the schools responsibility in all of this? An advocate charges $250 for a consultation. Each hour that they work up a plan or attend meetings with you costs $175 per hour. What happened to "no child left behind"???

Just a cold?

If this ick we are going through is just a bad cold, I'd hate to see what the flu would bring! I started the morning with high ketones and a fever, and low blood sugar. WEIRD. I'm always low when I'm sick while Maddison runs high. Maddison had small ketones and a terrible cough. No fever for her thank goodness! This is day 6 of Maddison feeling terrible, but it does come and go through out the day giving her some relief. In between coughs and a headache that lingers, Maddison plays with her birds, then climbs back in bed beside me. Maddison and I go through alot together, thats for sure.

This is the 2nd time today I've pulled myself out of bed. My fever is gone for now, and so is my voice from all the coughing! It was time to conquer some of Maddison's absent work....HOLY MOLY, just looking at that pile made my nausea return. We made it through about 2 papers and that was all we could both handle. We watched the movie "UP" and the movie "Santa Buddies" until we both fell asleep. -Sigh- We are tired of being sick and tired! Tomorrow I'm hoping to send Maddison back to school.....I'm dreading that already. Maddison's highs I had figured out before illness are back of course. As if being sick isnt enough to wear you out! Add high blood sugars and its down right miserable. If my fever stays away I'll be back at work too......I just want to get on with week and back to functioning! This is some terrible ick!

Sick with a terrible ICK!

Maddison missed the actual American Girl fashion show :( She was so heartbroken. She tried to tough it out, (her idea) but within an hour of arriving at the hotel Sunday morning she was back to tears. Gagging. Coughing. Feeling terrible, looking terrible too! Home to bed we went. Maddison did get to do the 2 fun News Promo's earlier in the week, we can't forget that how lucky we were to do that!

I was quickly going downhill myself, ignoring how yucky I felt to push through the final show. Just wasn't gonna happen. Sunday was a day full of ick, staying in bed and trying to nap while our heads and muscles ached, throats felt on fire and coughs took over. ICK! Today is even worse. The rain is falling, its dreary and cold outside. Maddison goes from feeling ok, to being in bed bundled up with chills. Same here. Hannah woke up feeling the same too. So make that 3 of us in bed all day. I haven't been this sick in a l-o-n-g time. I might get a sniffle, a tickly throat or headache, but it never keeps me in bed. Speaking of, its time to go back to bed. No more pictures to post from the fashion show :( What a bummer!

News Channel 3, OH NO and Parakeets

This morning Maddison joined the other JDRF "American Girls" bright and early for their 2nd live news mini fashion show promo......

It was pretty funny, all the girls acted like modeling pro's by now. Live camera didnt even faze them! They all looked SO cute! Tomorrow is the BIG DAY, the ACTUAL fashion show day! Maddison woke up feeling YUCKY this morning, her tickly throat was back to PAINFUL. She hit 300's by 2am, a sure sign of impending illness of course! She was GRUMPY waking up, but being she was so excited to go to the news station and rehearsal afterwards, she didnt complain about anything, though I could tell she felt terrible. That's Maddison for ya. She is very pain tolerant and never complains. (unlike her sister!) That is, UNTIL something sets her off.....

REHEARSAL. By the afternoon Maddison was pale and had dark circles under her eyes. UH OH. I could hear her voice changing from her cold that has been brewing. And, then it struck. The trigger.....at rehearsal the girls got to choose a doll name from a cup, and they would wear that outfit with the matching doll for the fashion show tomorrow. But not Maddison. She was the same outfit and doll that she was for both news appearances. (because the size fits) She was disappointed.....because she was placed with the 6yr old girls. The girls clothing size determined their outfits AND group. So, even though Maddison is 9, she still wears a size 6 and was placed with the young 6yr old girls. YIKES. Disappointment was the trigger. Quiet tears came. Then the barking cough. Then the complaints of her throat being on fire. We ended up leaving rehearsal 2 hours early and headed to the Urgent care.

The doctor gave me the choice....swab to see if Maddison is strep positive or just assume from seeing her fiery red throat. (no white spots) I'll take the assumption being her strep history. RX Amoxicillan. No wonder I've been feeling like crap the last few days! Of course now Maddison feels fine after some rest and better blood sugars. So tomorrow? Hmmmmmmmmmm......miss the ACTUAL fashion show? Hmmmmmmmmmm.......I think I'm being the bad mom and bringing extra hand sanitizer. Maddison assures me she feels GREAT and will tomorrow. -Sigh- This is a tough one! OH NO!!

Maddison said goodbye to "Keeko" her lizard a couple weeks ago. I guess we just aren't lizard people. Let me warn you, a Bearded Dragons cage smells 1000 times worse than a litter box. Trust me. It just wasn't working. So, Maddison sold her lizard and used the money to buy.....PARAKEETS of course! 3 new parakeets for the aviary! The next day, Maddison went to volunteer at the bird rescue and came home with 2 more!! But these 2 are tame baby parakeets and Maddison is having a ton of fun with them!! So far, they are living inside with us while Maddison works on teaching them "tricks." Something tells me they may never make it outside to the aviary of "wild" birds. :)

Starting Over-again

Three years ago on December 4th, 2006 Josh and I held Maddison down as she screamed in panic and tears filled her eyes. Nurses inserted an IV into her tiny hand, technicians drew blood, and her fingers were poked. After all the initial ER work up was done and we had a moment of "peace" to take it all in, Maddison sat silently in the cold hospital bed suddenly looking very ill to me. She was. "Diabetes" she said, "just like you Mom." "Just like me" I said. 9 months into my own diagnosis Maddison was admitted to Phoenix Children's Hospital with the same damn disease. Three years ago, seems like an eternity.

In many ways I feel I was "chosen" to live this life right along side of Maddison. Its strange, I accepted my own diagnosis from day 1. It wasn't such a big deal. And then came Maddison's diagnosis, and I realized the seriousness of it all. I had no idea how difficult life was about to become. My Diabetes is pretty simple. Always has been. Its alot of work, yes, but easy to figure out in comparison to Maddison's ever changing needs. If there is one thing I've learned in three years with Diabetes, it is that we constantly start over.

For the past 4 weeks I have been making almost daily changes to Maddison's insulin dosing to get her out of this high streak. Finally, we saw progress for a few days. Last night? 55 before dinner. 68 after dinner. 25c before bed to get to a safe number. Today? We are starting over. Saying goodbye to all the micromanaged changes over the last 4 weeks to defeat the highs. Saying goodbye to double basals and decreased ratios. Today is an all new day. We are starting over-again.

Maddison woke up with a scratchy throat today, a yucky cold brewing. I decided to keep her home since today was early release from school. An hour after breakfast....62. Then 55. 67. 72. 89. 45c total. 4 weeks of highs, three good days and now THIS!!?? Reduced basal rate. Is she low because she's getting sick or maybe she's low because she isn't at school? What do I do now for lunchtime? Try again. Cautiously, I changed her ratio back to what it used to be BEFORE this high streak. An hour after lunch the CGM says 112 with a down arrow. 20c. TWO down arrows. 15 more carbs. Reduced basal rate. Dinner? I reduced insulin by half. Switched back to the "old" basal pattern, you know, the one you use when your D kid isnt growing? Yep. Starting over-again.

Why is it that Diabetes is constantly causing us to go back to the same old places? The emotions of Diabetes is like one big circle. You pass the difficult times, we always do. But all the OLD and BURIED emotions come back at some point. We go from feeling blessed that "its only Diabetes" to feeling helpless and hopeless. We go from being motivated and determined to feeling defeated and clueless. Optimistic to skeptical. Fearless to fear. Heartbroken to peaceful. Sometimes in a matter of days. Hours, or even minutes.

This year has been very tough for Maddison in so many ways. Just like 3 years ago, I wish I could take it all away. 3 years ago Maddison lost life as she knew it. Life as I knew it. Life as our family knew it. I know each one of us in this house has become stronger and more compassionate because of Diabetes. Some days we just dont feel it. I had so many things to say tonight, but now its all one big jumble of emotion! Now I just want to go crawl in bed with Maddison and hug her tight while she sleeping! If only our children knew why we are such crazy D moms! I wish the world had a true glance into the lives of our children, so they could see the miraculous life they live. Every day. Staying alive because of insulin. Life threatening highs. Life threatening lows. Why dont people even realize!!?? Every day, starting over and moving forward. Leaving yesterday behind and working on TODAY. Starting over-again and again and again.

News Promo video

Click here.......New Promo JDRF American Girls

News promo

This afternoon Maddison took part in a local News station promo (mini fashion show)for this weekends upcoming "American Girl" holiday show....LIVE!! How fun! Maddison says she wasn't nervous a bit, I think it helped that her friend Charlize was a chosen American girl too :) Here's a picture of the JDRF American Girls!



Dad forgot to bring the camera!! AHHHHHHH!!!! These pictures were taken by cell phone. Thats ok, next up is a Saturday morning promo on a different news channel, followed by rehearsal...and finally, the actual Holiday show (2 of them) on Sunday! Betcha can't guess what Maddison will be getting this Christmas :)

In other news...highs highs be gone! This is week 3 of manipulating basals and ratios for Maddison....FINALLY she was in range all day so far this week! Not one number over 170 and not one under 100. Now I just wonder how long this will last? Even the CGM shows a nice "flat" line for several hours in the day. I say "flat" because compared to what we were seeing the last 3 weeks, this is about as good as it gets!

Brown bag full of love

This morning as I made Maddison's lunch for school, she decided to make ME a lunch to take to work. How sweet is that?

My Maddison, always thinking of others...she has such a big heart! I was so touched by her thoughtfulness. Today of all days I really needed something like this to cheer me up. Besides the sorrow that Christmas brings me (for many reasons) I've been debating over this CGM thing. And, on December 4th is Maddison's 3rd year living with Diabetes. That alone makes us recall the years past doesn't it? There is so much hustle and bustle right now between school, the holidays, and LIFE. Then I listen to the news. News....didnt I promise I would stop listening to the news? I'm also not feeling so great, I have a slight fever and headache...and to top it off I got an unwelcomed 2nd period this month! Of course feeling like I'm getting sick I woke up at a way high 190 today (98% of the time I wake up under 118) and after my morning coffee I was 290!!!!!!!!!!!!!!! I havent seen a number that high ...well, since Thanksgiving apple pie! But 290 for me is really like 500. ACK! But enough of all THAT!

Inside my lunch today was also a little love note......

My Maddison sure knows how to make it all better....with just a touch of who she is :) One little brown bag lunch full of love. Made my day. Lifted my spirits. Gave me the little boost I needed to make it through today!! I love my Maddison!

My "American Girl"

A few weeks ago we received an email from our local JDRF chapter. The "American Girl" company is hosting a fashion show to benefit JDRF for the holiday line. Of course you would need a couple of "D" girls to participate in the show! So guess who's chosen? My very own "American Girl" Maddison!!

We got the email last week saying Maddison was chosen and Maddison has been practicing her modeling ever since! She is SO excited! Another little girl from our support group is a chosen one too! HOW FUN! A day later, it was requested that Maddison come to the news station to do a live promo for the fashion show. Wednesday is the day for the news shoot! Saturday we have rehearsal for the show that follows on Sunday! I am SO happy for Maddison! The best part is, no makeup allowed! Just pure and natural "American Girl" beauty. JDRF has given us so much these past few years. Such fabulous opportunities that we never would have had otherwise. What a blessing to have them supporting US in this journey!

Sensor #3?

Saturday was day 6 of Maddison's 2nd sensor. It was working perfectly, but her skin was itchy, puffy, red and irritated where the Tegaderm was placed to cover it. I even tried a few days before hand to let the skin "breathe" without any tape covering it. It just wasn't gonna work. Skin needs to breathe. Exactly why I feared starting the CGM in the first place! Looking ahead, I figured if Maddison associates the CGM with such irritations she will be more likely to dread it or "hate" wearing it. So, sad as I was to remove the sensor, I did anyway just to relieve Maddison's skin irritations. It hurts my heart to see her reddened irritated skin from the tape. Isnt a pump site enough?

Tonight being Sunday I'm planning on inserting Sensor #3 for back to school tomorrow. I feel guilty. Is this for ME or is this for HER? Yes, the CGM has caught some lows. Yes the CGM helps me to see exactly where highs or lows begin, even with less finger pokes. All those thing certainly benefit Maddison. She just doesn't understand all that. And, she doesnt care. She's already complaining about my plan to insert the sensor tonight. "It isn't even accurate mom!" or "I hate having another site!" is all she's been saying. I cant get a word in, and, I dont really know what to say to any of that. It just makes me wonder. Is it right for me to go against her wishes? Is it wrong for me to force her to wear this CGM? Is this likely to cause more "control" or "emotional" issues than its worth? Or....is Maddison just having her say because kids do with anything anyway? Its so hard to know.

What happens when Maddison hits the teen years and wants to go back to injections? Would that be her choice that should be followed, or is it my choice as the parent? I never even wanted to start this CGM, for so many reasons.....then I felt I HAD TO because of crazy lows. Now that we have been using the CGM for over three weeks, I feel I "need" it and rely on it ALOT. Last night Maddison didnt have the CGM on for the first time in many days and I can honestly say I wasnt sure what to do over night! Even though Maddison sat stable in the 130's all night.......not having a CGM to refer to for every trend made me weary of sleeping until my next alarm. Crazy!!! It was like Diabetes and sleep were all new again! First I didnt want this CGM, now I feel like we cant live without it. Yet, Maddison wants nothing to do with it.
-Sigh-

Thanksgiving 1996

Thanksgiving to me, means Hannah. My first love. Ok, my 2nd besides her Dad :) I was a young 19 when Hannah was born, but cherished my baby as any mother would. I dont think I even put her down for months! Returning to work in the ER just 6 weeks after she was born was probably the hardest thing I had ever experienced in life. I cried every day for months. I just wanted to be with my baby. I didn't want for her to have to drink pumped breast milk from a bottle. I just wanted to be home, even though she was home with her Daddy. Hannah came into this world on November 28th 1996which was Thanksgiving morning. From that day forward, Thanksgiving became even more than what it ever used to be.

Thanksgiving marks a day of giving thanks for all we have in life, a day of appreciation and celebration. Thanksgiving to me, means Hannah on top of all that. My sweet, beautiful, silly Hannah. Just recalling memories of the past 13 years at this moment brings tears to my eyes. Actually, alot of tears!! I could never imagine 13 years would have passed so quickly. Tomorrow my Hannah will be 13! I'm having a difficult time not crying when I think about that.

She's a young woman, not so much a child anymore. She's funny. Always telling stories with such enthusiasm and drama. She's so caring. She has a heart of gold, though most times she tries to show her 13yr old tougher side. She's an amazing athlete, her passion of Volleyball will drive her to higher places in life. I know so. She's so darn smart. I still remember her first word was "look" at the young age of 9 months. Seriously. Sentences before the age 2. Coversations soon to follow. She was such a little thing, still no teeth yet but talking to anyone that would listen. Ohhhh...how I miss my baby Hannah, yet I ADORE this young woman who stands in her place.


So yesterday Thanksgiving was celebrated at Josh's Mothers and Grandmothers house with all his sisters and their families. My family also gathered. My parents, my sisters, and my too cute little Neice Sami (who made me think of Hannah being that age!) What a beautiful day! Everything was perfect. Over the last 13 years, this was only the 2nd year that we didnt do Thanksgiving here at our house. I must say....it was a VERY nice break! The kids and I still came together and helped with lots of cooking before hand. Maddison had her little apron on an couldnt get enough! This Thanksgiving was just amazing, So relaxing and full of family and great conversation. We were home by the evening, and I even got to sleep in until 11am today! WOW! I think I could run a marathon! Of course, sleeping until 11 did include a midnight BS check, (me and apple pie dont mix!) a 4am wake up when Hannah got home from midnight shopping at the mall and a 8am BS check to assure the CGM was still on track! Today? Its 80 degrees! Time for a nice long bike ride I believe :)

Up Up Up!!!

After nearly 3yrs of dealing with Diabetes for Maddison I'm still amazed when insulin doses increase so dramatically day by day. What was 3.40 units of basal a month ago has now doubled to 6.50 units and STILL needs lots of adjusting. AMAZING what happens inside that little body. AMAZING how we stay on top of all this! Ratios and basals......UP UP UP!! Will I ever find the right balance again?

CGM insertion #2 was a success. No difficulties. No pain. No issues. Accuracy of the CGM vs finger poke is pretty darn "predictable" within 3-30 points. Until Maddison rolls over while sleeping onto her bottom where the sensor is located. A little push to roll her back over, and the CGM finds its way back. CGM.....I think I love you!

I've been scrolling through the 24 hour screen on the CGM to see where Maddison shoots up at night and during the day. There it is....a little roller coaster hump.
9am. 11am. 8pm. 2am and 4am. Why is it that I'm adjusting basals and boluses more aggressively than ever but nothings budging? How do you double insulin dosing yet all you continue to see is the same old numbers? All we get is numbers 220-350. Its so weird how you change everything but still get the same result!

Right now, I still finger poke at night. I dont "trust" the CGM enough to assume it is accurate at night. This is exactly why.....

ARTICLE, young man dies in his sleep

How will I ever be able to get rid of my night time fear of lows when I come across an article such as this? Knowing this can happen and hearing about it are two different things. I really wish I didnt see this article. My heart aches for this family and for the loss of this young mans life. Can you imagine the guilt his parents must feel although WE know they aren't to blame?

All I keep thinking after reading this article is

"What about when Maddison's double insulin needs come crashing down without notice?" Will I catch those lows in the night? Sometimes I wonder how us D parents stay sane.

Despite the terrible feelings that article inflicted when I read it, lately I'm just doing. Adjusting. Tracking. Logging. Without much worry. I'll take the highs over our last months of lows any day. This difficult spell will pass. It is what it is. I couldn't make insulin adjustments any faster if I tried. I dont think I have ever had this kind of outlook with Maddison's high blood sugar streaks. Maybe this time is different because I KNOW I'm doing my best. I KNOW I'm all over it, and I'm not doubting myself as a pancreas. Kids grow. Things change. Alot. Maybe 3 years is my magic number. Maybe 3 years is how long it takes for me to learn that I really am doing my best in this battle. 3 years, seems like an eternity.

One more day! One more day of work and school and then we get 4 days off! YAY! My Hannah will be 13 on Saturday.....that's approaching a bit too fast! My Hannah was also a turkey baby :) Born at 8:38am on Thanksgiving morning 1996. I will always cherish Thanksgiving day as the day Hannah was born. -Sigh- How DO they grow UP UP UP so fast?

Day 6 CGM

Today will be day 6 of Maddison wearing her CGM. My thoughts? I LOVE the CGM for the arrows it shows when blood sugars are rising or falling. That itself, is for me, the most helpful part. I also love that the CGM has stayed within 2-30 points at all times of Maddison's actual blood sugar. (Oh except this morning at 2am when it read 150 but Maddison was actually 280....sleeping on it I think!) The part I knew I would hate is dreading changing the sensor. Not because its painful (I shouldn't speak too soon, we have only inserted it once!) but simply because I despise Maddison having to wear yet another device. I hate seeing the tape marks and red soreness with a little red dot. Why all these devices? Isn't it time for the integrated sensor in the pump site!!?

-Sigh- The first few days Maddison said she didn't like the CGM, just because. Today she said she doesn't mind it. I would LOVE to use this CGM every day, always, with just some breaks when things are going well. But, I dont know if I can bring myself to have Maddison do so. How do you find enough room on that tiny body for 2 sites? How do you not cringe when the tape comes off, the sensor bleeds and it all becomes itchy? I just dont know. I love this thing, but I just dont know if its worth all the extra "little" things it carries with it. On the other hand, I'm SO tired of 15 finger pokes a day. Maddison's poor little fingers are mottled with so many holes. It just breaks my heart.

After all the lows at school (that have disappeared) Maddison's numbers have been crazy. There isnt any stability. I was forced to run her higher to avoid lows, but now that those are gone her insulin needs have skyrocketed. We are up to double dosing around the clock. All basal needs have doubled. Ratio's changed. Yesterday was the first day I kept Maddison under 180 all day for weeks! WHAT A RELIEF!! I WAS SOOOOO HAPPY!!! Until 8pm that is. 400's on Thursday night and 300's last night. I'm really tired. I've been up every 2 hours at night for the last week. I'm tired of Diabetes, but surprisingly, I'm not getting discouraged with these highs as I normally would. I guess I owe that to the CGM. Just being there the CGM makes me feel more capable of getting us to "stability" once again! Weird, I dont know why!

I suppose I feel armed and ready to battle these highs because I can SEE them coming. Up arrows have been my friend. Less finger pokes is true....this is month 3 of crazy numbers. I keep asking myself when this will end and I will be back to not thinking about numbers, just doing. I just don't see the end in sight. I still haven't had the actual CGM training....maybe I should start there.

Thankful Thursday

Some things that I am the most thankful for are those that drive me crazy the most....

**My husband, yes, he mostly drives me CRAZY.
**Our two stinky Goldens that only know love, play and happiness in life
**My job that bores me to death, yet pays good and treats me like gold.
**My Swiffer dry mop. Keeping doggy floors clean, yet I hate that I need you so much!
**Maddison's birds that make such a mess, yet Maddison enjoys/loves them so much
**Insulin. You are so hated, yet loved and cherished more than anything.
**Our health insurance, even though you suck, I'll take anything we can get!
**Our school nurse, but sometimes I wish you would just LISTEN and not reply :)

Other unusual things I'm thankful for.....

**Feather comforters- enough said!
**treadmills-
**cell phones....helping me track down my kids!
**Hair straighteners- My hair is totally bushy 80's style otherwise!
**2c chocolate milk mix
**BBQ grills-SUMMER!
**a nice glass of wine
**Febreeze-stinky pet house MUST HAVE!!
**Furry socks
**DARK Chocolate
**Apples-sometimes I like them MORE than chocolate!
**Green Tea
**singing daughters as I blog :)
**stuffed animals-a necessity for Maddison's sleeping areas
**Zebra stripes-always makes me think of Hannah
**Google-for those that MUST know ALL details
**Clean sheets scented candles

WOW, I could go on all day!

BEFORE

Today Maddison's CGM continues to be right on track with her meter BS. Too bad we are going through a high spell and everything needs adjusting anyway. I would have liked to see the way things were BEFORE. BEFORE highness struck again. Right now all I see on the CGM is up, down, up up up, down, up up. YUCK. What were things like BEFORE? I mean, back when things were "easy" to figure out? The normal times of minor adjusting? Right now we are in overhaul. Adjusting everything.

Back in August Maddison's A1c was 7.2. October revealed 7.7, her highest ever. That was hard to swallow, even though I know that number is still considered good for kids. Looking at the trends on the CGM doesn't really tell me anything that I dont already know. It just provides more numbers for me to feel bad about. Tonight we have to remove the bandages and dressings that cover the sensor leaving it stuck in place. I betcha Maddison will complain about the tape itself, even though she didnt flinch with insertion. Sometimes its all the little things with Diabetes that get to us. CGM high alarms bugged Maddison all day at school today, I had them set at 250, but I guess we are looking at numbers surpassing that lately. Tomorrow I will just have to turn the alarms off!

Maddison's arm site was pulled out at school today. Luckily I was at home and was there to replace it within minutes. Just the aide worked the second half of school today. She was totally overwhelmed with kids everywhere. The things those kids go to the nurse for, it never fails to amaze me. Kinda like the ER. One's illness is anothers normal day I guess. One girl complained of bumps inside her mouth. One boy stubbed his toe. One tiny kindergarten cried when his flip flops broke. They were his favorite. It was so sad, but cute to see him standing there holding his cherished flip flops. So, I gave him a hug. :)

After replacing Maddison's site, I was on my way to the Sports Med Doctor with Hannah. What a waste of time and copay. 10 minutes is all we spoke with him. Seriously. He really didnt listen to me at all. According to him, Hannah does not have Torticollis, she has a neck strain with muscle spasm. And he left the room just like that. -SIGH- Now Hannah will need to go to Physical Therapy 2-3 times a week until her spasms resolve. I think I'm drowning in copays!

Tomorrow I plan to post THANKFUL THURSDAY. All the random things I am thankful for in life besides the obvious. Anyone with me?

Not a big deal

Remember back to the day when changing from shots to a pump was like moving to some foreign land? You weren't really sure it was the right decision. You were scared and overwhelmed. You would ask yourself so many questions.....HOW can I make my child wear this device 24/7? Do we really want to use an insulin pump and have Diabetes be so visible? How will my child feel about it when everyone questions them about the tubing sticking out from underneath their clothes? Remember how deciding to pump insulin was SUCH a big deal? Remember how suddenly one day the pump was just an extension of your child and not a device?

Well, thats what I THOUGHT trying out a CGM would be like. I thought I would have all the same emotions as when we started the insulin pump. I DID NOT want this thing attached to my child. I DID NOT want to admit that another device may be helpful. I dont know why. I guess we ultimately just want Diabetes to be "easy" for our kids. We dont want fancy devices. We just want to do what we are supposed to do with insulin and food and have Diabetes always cooperate. It's taken me a LONG time to admit that just doesn't happen with Diabetes! I've always been one to find the answer for a high or low, at least I convince myself of that anyway. I think thats how I maintain a feeling of CONTROL over this disease. But not these days.

I was SO worried starting a CGM on Maddisn. Another set of numbers to analyze. Another potentially painful insertion, but, Maddison's first sensor went in without notice. Not a flinch. I must say, that alone made this new device a keeper. If Maddison had pain with insertion that first time I would have given up. Without a doubt. Our kids go through enough pain with finger pokes and site changes. A CGM is optional. I would have said NO THANKS! Goodbye CGM! After just 48 hours I can honestly say this CGM is no big deal. Its not a stressor at all. Unlike the pump start for Maddison, I started this thing up and its been right on track ever since. Seeing the way Maddison's 24 hour graph shows her crazy ups and downs, thats amazing. I thought calibration alone would have been intimidating. I think I've got that covered.

Of course problems will arise and the CGM wont be perfect. But for now its nice to know that we had a good start. I'm learning things already. Like, bike riding spikes Maddison for about 20 minutes. Then she drops like a rock at the 45 minute mark. Without the CGM it would have taken us some painful lows to learn how she reacted to that type of exercise. But the arrows were there, showing us the drop. We stopped the low before it happened. Thats priceless. Now, what to do with all the other information this CGM gives? Right now Maddison is running a high streak the past 2 days....growing maybe :) Its painful to see those high numbers flashing updated every 5 minutes on her pump screen, I wont lie about that. Maybe I should just stop looking. Its addicting though. Amazing to see what is happening. For now, I'm relieved that the CGM really isnt a big deal. So much less overwhelming that I thought it would be! Lets just hope it stays this way :)

NOW It's working

NOW it's working. Double down arrows, a plummeting blood sugar after our daily bike ride. Within 15 minutes Maddison was down to 108 from 220 before bike riding. NOW I can SEE this thing in action.

Sunday night was time for Maddison's pump site change, then she asked me when it was "her turn" to wear the CGM. Can't deny that. After chasing lows from 9pm until
1am, it was time to calibrate a stable number into the CGM. The accuracy of this thing has been amazing ever since. Down arrows, double downs, whatever is happening in that little body of Maddisons, the CGM even catches up to the rise. Just 24 hours in to Maddison wearing this thing I am totally impressed. This CGM is ALL OVER these numbers, tracking them like I never would have imagined.

Maddison proudly wore her CGM for the first time to school today. A good calibration had the meter vs CGM readings within 10 points or less all day. Then came our after school bike rides. Racing is more like it. Hannah and Maddison like to RACE. No casual enjoyable ride here. Its an all out workout! Regardless of carbing Maddison up for rides, she still drops. THANK YOU CGM. You saved us multiple times today. Now....what will tonight bring? I've been reducing over night basals, because of course, the lows come hours after the fun as well. No luck. Dropping. Dropping. PB and honey sandwich with chocolate milk. Dropping Dropping. Tonight I have the CGM all ready to go to fight these lows. NOW that I know this thing is working, I have a much better peach of mind. Trusting it? Not completely of course, but at least day 1 has been impressive. We shall see what tonight brings.

November 14th

Today I am thankful for insulin, thankful that Maddison and I are alive another day because of it. I appreciate syringes, finger pokes, testing strips, meters, insulin pumps and CGM's. Most days we don't really think about how all these things actual keep us ALIVE, but today we ar thinking. We are thinking alot. Thinking of all the others young and old out there that live this life just the same. I'm pretty silent today, I dont have much to say as I thought I would . Just alot of thoughts going on nside my mind about what this day really means. From the bottom of our hearts, Maddison and I are sending special cyber ((HUGS)) today, to all the D parents, the children with Diabetes, adults yound and old. Type 1's, Type 2's and all Type 3's. Hugs to anyone who loves someone with Diabetes!!!

Found Feathers

Tonight we got a call from someone that thought they found Maddison's lost Cockatiel. We were SO excited! After school we made the 12 or so mile drive down to the University of Phoenix Stadium. Some of the office staff there had been holding the bird a few days, trying to find his home. Our birdy flew to the stadium!!??

Sadly, this wasn't our Cockatiel. BUT, we decided to take him anyway. Maddison presented the nice lady with her business card (yes she has an actual business card with HER name on it) and told her how she volunteers for Fallen Feathers bird rescue, and let her know we will contact the rescue about this bird and foster him until we find his home. This super nice lady was very happy we were willing to do so, and turned the Cockatiel over us. So what came next? As soon as we got home Hannah went to work for her sister....Ms Hannah, the best big sister EVER made Maddison this website in support of Maddison's desire to help all other lost pet birds.....

Found Feathers

Now THAT is what I call sisterly love :)

Is this thing working!!??

Day 2 of the CGM, it hasn't caught a low yet, though it does alarm AFTER I already know I'm low. (my low alarm is set at 80) I wasn't low low, just another 68 that FELT low low. My meter said 68 but the CGM said 85. According to the CGM I dont even have Diabetes!! I'm thinking it isnt tracking blood sugar rises accurately. Here is my last 24 hours......



Is that even possible? Is this thing working right?!!

Each finger poke today again revealed a number within 20pts of the CGM. EXCEPT after eating! (my highest meter reading today was 129 half an hour after eating and the CGM said I was still 75) I thought people say you can calibrate this thing well enough to be within 2-5pts? I have yet to see 2 up arrows or 2 down arrows indicating a rapid change in my blood sugar, so why didnt the CGM keep up with the rise? I think an experiment is needed to see if this thing is working right....I guess I should do a test! A candy test!! Where is that Halloween candy anyway? I think its time for me to do some experiments on myself. Ohhhh the torture :)

Above is my last 3 hours....a flat line. Hmmmm....Is this thing working!!??

The first 24 hours

After the CGM failed to catch my 51 blood sugar at 1am, I was a bit sketical if the darn thing was calibrated right or not. After my morning blood sugar check and over the next 7 hours, the CGM was within 20 points of what my meter blood sugars came back at. I suppose thats a decent calibration, but when I started to feel spacey with a 91 on the CGM (around 3 hrs post prandial) I knew I was really in the 60 range. Yep. Quick meter check showed 68. So what the heck? I can already see where this thing is going to almost be more work and worry than its worth. Trust is a big issue. I have my low alarm set at 90, knowing the lag time between blood and intersistial fluid. So, would the alarm ever have caught the low?

I was also relieved to see that my highest number all day was 148 after morning coffee. The CGM reflected that my BS remains incredibly stable, moving just a point or two up, instead of spiking, even after eating. No arrows pointing up today (showing fast increase in BS on the CGM) what so ever. TOTAL flat lines!!!AWESOME! Exactly why I try to pre-bolus everything! So, from 8am-2pm my BS stayed between 90 and 148, mostly hoovering in the 100 range. Thank you CGM!! That made my day to see a flat line!! Of course, thats just one day.....but I'll take it!

When I got home from work I got a little greedy and wanted a tighter calibration, so I took my number (68) which was stable from an hour earlier, and calibrated that. The CGM reflected it immediately. Then the hunger set in. I waited the recommended 20minutes before eating after calibrating, then had some chips with melted cheese and salsa. YUM! The CGM is now 70 points off!! It never caught up to my rising blood sugar!! 30 minutes later my finger poke says 170 but the CGM still says 103. ACK!! Thats what I get for being a greedy CGM user I guess. Now I wait and see if the darn thing ever catches up.

Which maks me wonder....how the hell would I ever be able to get a good calibration on a 9yr old who is running, eating and jumping all day? It already seems impossible. Trust? Ahhhhhhhhhhh. The first 24 hours with this CGM and I have learned alot. I spent 6 hours last night reading the ins and outs from other users on the CGM users yahoo group. Yep, I've learned alot. But I've also got some serious doubts when it comes to ever making this thing work for Maddison. I'm anxious to see how many days I can get out of one sensor. I'm totally addicted to looking at my number reflected there on my pump every few minutes too. I must have looked like an OCD chick all day at work, LOL!!

Flat Line

I dont know what happened to the low blood sugar "alarm" that should have sounded when my BS hit 51 at 2am....CGM was still reading in the 120 range. (I had a correction before bed that caused the low) But this flat line makes me pretty darn happy, assuming it is accurate of course! :)

Look what I got!

Yesterday I was serious when I said I won't be blogging until I have something nice to say. Well, guess what?! I do have something very nice to say!! Look what we got!!!


Our Minilink CGMS came today!! I couldn't even wait for training before giving this new gadget a try!! I know, bad me! I read the books and studied for about an hour before I told Josh to slap it on me. I'm wearing it on my lower back area, the "muffin" area where I have the most chub. Not a bit of pain with insertion, but let me tell ya....that needle is intimidating!!


Already having the pump meant the insertion of the sensor already made sense in my plastic pancreas functioning mind :) Too bad I can't get the pump to respond with anything but a "BAD SENSOR" error!!!

Actually, when I first started the sensor, the transmitter was communicating with the pump just fine, then after about 20 minutes it alarms and says the sensor is weak. -SIGH- And so, now life goes on with me having to troubleshoot yet another device and question all sorts of new things. We shall see what this CGM has in store for ME before inflicting its irritations on Maddison. Once I feel I "get it" I'm supposed to try this CGM out on Maddison. Maybe. I'm still leaning towards anti-CGM for Maddison (for MANY MANY reasons) but after all her crazy lows at school I have to approach Diabetes with an open mind and simply aim towards safety at this point. Wish me luck in getting this darn sensor to work!!!

Torticollis and crazy medical expenses

It never fails to amaze me just how quickly the day can turn from one plan to another. A typical Monday morning, dragging the kids out of bed, making breakfast and lunches while the girls giggled at the silly birds whistling in the other room. I dropped the kids off at school, then suddenly they turned around. Maddison started to run towards me waving her hands, as Hannah fell behind holding her neck with tears streaming down her face, sobbing. Oh great. Here we go again.

This is the 3rd time Hannah has had this kind of pain. The first onset came back in August, an entire 28 hours after an 8hr long sand volleyball tournament. Hannah was fine until SUDDENLY her lower neck/shoulder area spasmed in pain. You would think she broke her neck in a traumatic car accident. She SCREAMED. PANICKED. CUSSED (like a sailor!! SHE GETS THAT FROM HER DAD!)Hannah wouldn't move. We were right in the middle of a family party and she never came out from hiding. She cried in her room for hours instead. Full tears. We have all slept on our neck wrong or had neck spasms.....and YES, it does hurt and it does spasm alot....but 3 times of this same extreme pain followed by stiffness and inability to turn her head for days? I dont think anything is normal about this.

I'd like to think Hannah is a drama queen, but I always remember when she flipped off her bike in 5th grade. I talked her through the pain, even all through the night. Her arm looked fine. I sent her to school the next day and the nurse ended up calling. Swelling finally set in, so Dad picked her up from school and went to the Urgent care. Fracture. Right there on the xray, plain as day. Maybe she isnt such a drama queen afterall. I win the best mom award for that one! :)

Hannah's second issue with this pain came weeks later. No volleyball involved, and the pain struck just as I was dropping her off for school. I wondered if the weight of her back pack triggered it. Same thing as the first time, though not as severe. Same side. Same generalized area. I took her to the PED anyway. We were referred to a Sports Medicine doctor, urged to stretch before playing volleyball and told to apply ice as needed. Diagnosis, rotator cuff injury. Hmmmmm......

Today for some reason I felt we were looking at something else. Why the sudden onset AGAIN? Why is the pain now on the opposite side just below the base of the skull? Why the dizziness in weeks past? Hannah's was freaking out in pain. Surely this is a nerve thing right? After the first experience with this pain I read about everything from "Impingement" to over use stressors to muscle weakness. The whole base of the skull thing freaked me out. So, we proceeded to the Urgent care.....when they were closed I said SCREW IT. We will go to the ER and hope for a better answer. $150 copay is worth it to ease my mind and alleviate Hannah's pain right? NO. I guess not.

Diagnosis "Torticollis" per the ER doc. Motrin. Ice. Follow up with your PCP in 5 days. Continue to see Sports Medicine. (which we never scheduled because we thought this was a simple sports injury that went away!) The ER doc did manipulate Hannah's neck and show me how to ease the muscle tension. But other that that, I wasted $150. UGH. Hannah's laying in bed. Has been for the last 9 hours. She can't move. I'm one to always believe there is a reason. Sorry, thats just me. I need to rule out everything else before I come to a decision on what I believe. I'm also a googler which means I've been reading about TORTICOLLIS for hours today as I sat with Hannah in bed.

Why do I do this to myself?

"Torticollis (from the Latin torti, meaning twisted and collis, meaning neck) manifests as involuntary contractions of the neck muscles, leading to abnormal postures and movements of the head.1 It is not a diagnosis but a sign of an underlying disease process. Cervical dystonia, spasmodic torticollis, torsion dystonia, and acute wryneck all refer to the same process. Most of the cases presenting to the emergency department present as acute, acquired torticollis, although other congenital and infectious causes as well as trauma must be considered."

SIGN OF AN UNDERLYING DISEASE PROCESS? WHAT?

"Torticollis is also often seen as compensatory mechanism for another disease or symptoms. Patients present with a head tilt to compensate for an essential head tremor or for diplopia secondary to an ocular muscle or nerve palsy. Pediatric patients need a thorough eye examination to rule out a cranial nerve palsy or congenital nystagmus. Persistent neck muscle spasms may require referral to a neurologist or surgeon."

Ok, can we just rule out any weird stuff first? How many times means "persistent?" 3 times? 5 times? A year of disabling pain? What about Volleyball? Hannah missed practice today, and she's very upset about it. This girl lives and breaths Volleyball. How long do I let this go before I insist on a better answer? I did get an appointment with her PCP, but I already know it will be useless and a repeat of the last visit. Ugh. Its so frustrating when as parents we have to rethink everything for the sake of our kids health.

Medical expenses......last month Josh and I were looking forward to open enrollment for his employers insurance. We were sure a different insurance plan would save us tons of money. Looking over our options the other day, I decided we might as well sell our damn house and live in a shack. Looks like cost has once again increased while benefits decreased. There isnt one insurance plan option that covers "name brand" RX's at any level. Nope. NONE. Our copay for "name brand" strips and insulin remains at $160. Is that freaking ridiculous!!?? Test strips x's two. Insulin x's 2......OUCH. Then there is the DME that isnt any better. DME is covered at 60/40. Times two. Two insulin pumps. I guess I cant complain that THIS time there will not be a max for DME. That is a huge relief. BUT, our deductible went up to $900 per family from $300 on this "superior" plan. Apparently they think unlimited DME makes a "superior" plan. ACK! Our expenses only get worse each time enrollment comes around!

In this past week alone Maddison went to her Endo on Tuesday at $40. GI specialist on Wednesday at $40. Therapist on Friday at $40. I went to my PCP for a potential blood clot at $30. Then to the ER for an ultrasound at $150. Then today Hannah went to the ER at $150. OUCH OUCH OUCH. The future shows an outpatient scope biopsy for Maddison at $300. Sports Medicine visits for Hannah twice a week at $40 bucks a pop. Dental visits for us all, test strips at $160 needed YESTERDAY, and CGMS on the way from Medtronic which will top $450. Healthcare expenses are overwhelming in this house. CRAZY. It makes me want to hide.

You may not hear from me for awhile. I think I'm done blogging until I have something nice to say. Seriously. Until then, I will just keep swimming. Just keep swimming.