Tuesday, August 30, 2011

Liar Liar Liar

Maddison and I both had Endo appointments today. I braced myself for the highest
A1c's ever in our 5 years of Diabetes...

With back to school, a growth spurt, summer heat advisories, sloppy carb counting, and no pre-bolusing lately I was SURE Maddison would be AT LEAST in the 8 range. Current meter average? 196. Post breakfast numbers? 280's. Night time numbers?
280's. 10 checks per day show 80% out of range! This has been going on for at LEAST 3 weeks. At this point I'm ecstatic to see any number that starts with a 1. Maddison's basals have tripled in the mornings, her ratio's all decreased, yet her numbers haven't budged despite aggressive daily dose increases. CRAZY!

So, I mentally prepared myself for todays appointment. I was fine thinking Maddison's A1c was going to be the highest ever. Really, I was. I know Im doing my best, aggressively making changes....I know A1c's dont always reflect the time and effort you put in to managing the disease... So, today when I heard Maddison's A1c was 7.2 (by finger poke)I just shook my head. There is NO WAY that is accurate. It just isnt. How can you have higher numbers consistently for weeks and weeks and get a lower a1c than when 80% of numbers were in range? UGH. I dont trust those finger poke A1c's! There is no way!!

Mine? I expected a number in the 7's. After my surgery, pelvic infection and Pulmonary Emboli I can tell you I havent given my Diabetes ANY effort lately. I bolus and check blood sugars, but thats about it right now. Ive had horrible blood sugar spikes after eating lately, I feel low at 100, and my numbers are running about 60-80pts higher than usual....yet my A1c came back at 6.8% Ummm....NO WAY!!!

For real? Are you kidding me? There is NO WAY these A1c's are right! Both Maddison and I are seeing numbers far above what we have ever seen, yet our A1c's are still pretty much in the same place as they always are? In fact, Maddison's A1c is now LOWER than it was in May when I was SURE it would be her lowest A1c ever! ACK!!!

Whatever. Its just a number. I guess I should be happy that our A1c's didnt come back crazy too high like I expected....but I just doubt the accuracy and THAT drives me crazy!!

I still have ALOT of adjusting to do, for both Maddison and I. We have gotten sloppy and lazy over the summer. Pre-bolusing needs to come back, thats step #1. I'll just stick to trusting our meter numbers thank you very much, and adjust as needed with the number I can SEE!!

Sunday, August 21, 2011


School is back in session as of last week, so craziness has ensued with chasing numbers, as always! It never fails to amaze me how Maddison's insulin requirements SOAR when summer ends and school is back in session! The first 2 days of school brought Maddison consistent numbers in the 300's and high 200's, so I aggressively flipped basal dosing back to our old school pattern from last year...AND......

Day 3 was MUCH better!! Almost there! A few more changes and by day 4 of school this week numbers were in range all day! HOORAY! By day 5 of school (Friday) Maddi's numbers were a bit higher, likely due to a 3 day pump site after recess in the 110 degree heat before lunch every day! So now we start again tomorrow. MONDAY! Who knows what this week of numbers will bring?

I know BOTH our A1c's this month will be the highest ever! But ya know what? Its been a hell of a month and we still have a couple weeks left......its never too late to get back on track!

On Tuesday the 23rd my Maddison will be 11!!!!! I cant believe my Maddison is going to be 11!!!! I can see it in her blood sugar numbers, she always grows crazy inches every year right around her birthday. I think this might be the year I start chasing pre-pubescent blood sugars!!! -GASP!!-I do think my Maddi is now considered a TWEEN?!

Did I mention my Hannah made the VARSITY Volleyball team at her new school?! She sure did :) Our first game of the school season is Wednesday! I cant wait to see our new team play! Hannah has been training SO hard since the start of August for this team....its gonna be AWESOME to see my Hannah play this year as a Sophomore for the Varsity team!!!

In case anyone hasn't heard the scoop....

Rewind to August 7th, 5 days after my Hysterectomy I still continued with fevers so I was urged to go back the the ER AGAIN!! (3rd time) by my Doc. I had already been placed on antibiotics for a UTI post surgically and STILL ran a fever. I otherwise felt fine. No pain. Incisions good, recovering well. Blood sugars great, even without having any appetite. After much arguing with my Doctor, I went to the urgent care instead of the ER. I DID NOT want to end up Inpatient again! I really felt fine, even though the fevers were draining! I figured at the urgent care I could just get a new script for a different antibiotic. Wishful thinking. NOPE. The Urgent care showed no infection in my urine.... WHAT? I dont understand? So, the urgent care Doc insisted I go to the ER.....

UGH. I knew then that I'd be staying in the hospital again. Damn it. School was coming too fast! I dont have time for this!!!! We can't afford to take FMLA for this!!!

So I had my Mom drive me to the ER. (Hubby was working out of town) I figured I most likely had a pelvic infection from surgery. Maybe some IV antibiotics a day or two and I'd be good to go? UM.....NOPE.

In the ER my labwork showed nothing unusual indicating infection. Why the fevers then?

Apparently my D Dimer result was extremely high. A high D Dimer result indicates that there may be significant blood clot (thrombus) formation and breakdown in the body. WHAT? A chest CT scan was done, and there it was.....my CAT scan showed a Pulmonary Embolism.

By the time I made it upstairs to my hospital room it was 3am. I couldnt sleep. I wasnt even tired. (or so I thought) I couldnt believe the ER just caught a potentially FATAL embolism....in my lung! There aren't really any words to explain how I felt at that moment. I wasn't scared...I was mostly shocked. In denial. I must have asked the ER doc 10 times if he was SURE I had an Emboli!

All by chance this was caught early. So naturally, all the what if's began to play through my mind....

I never knew your mind could be SO wound up and unable to sleep. I mean, as parents with "D" kids we all get wound up from time to time and cant sleep from the stress and worry of it all.....but this was different. I think I ended up going 32 hours before asking for something to knock me out so I could sleep. This level of anxiety was CRAZY!!!

A few times during my 7 day stay I had random chest pains which called for EKG's, Oxygen and Morphine. Each time I was sure I was gonna die, Im not even being dramatic!! I really thought my life was played out, ending in death by complication of surgery. I really did. It was horrible. You try to always think the best, but when someone else is in control of your life you can't help but feel worried, scared and unsure. Each day isnt a promise for tomorrow.....

My heart rate during my hospital stay eventually became elevated because of the emboli, which made me feel like my blood sugar was low. My blood pressure ran continually low (90/55) so it was a struggle to walk around more than a few minutes at a time. Otherwise, I felt pretty good considering! I was in GREAT shape considering all the illness in the rooms around me! The heart/lung floor is NOT where I EVER thought I would be! Hacking and coughing in all the rooms around me. A CODE ALERT here, a CODE there......for my health I was never so grateful!!!

So, 4 days after being re-admitted I STILL had fevers. The Infectious Disease Doc was called in. I ended up having a CT scan of my abdomen and pelvis done (FINALLY after I asked 3 times) which revealed several "cyst like abscesses." More IV antibiotics. A few more days in the hospital, and by day 7 I FINALLY went home! Unfortunately I missed the first day of school for the kids, but I made it home in time that day to surprise them!

7 days is a horribly long time to be away from your kids and husband! 7 days is a horribly long time to sleep in a hospital bed with pokes every 4 hours around the clock! 7 days gave me the opportunity to lay around thinking about LIFE.... How lucky I am, how horrible this complication could have been, how saddened I was for the illness surrounding me, how thankful I am for each and every day I have on this earth!

7 days is a horribly long time to eat hospital food, especially the "Diabetic Diet." 7 days caused me to loose about 7lbs, and now I look sickly!! ICK. Drained. Pale. Tired. I have a long way to go. Im so totally out of shape, turned to mush and feeling it! Ive been home from the hospital for 6 days now, and as of today (3 weeks after surgery and complications) Im finally feeling near normal for the first time! Im having labs drawn every 3 days until we find the right dose of Coumadin to maintain my levels (normal is 1 but they want me at 2-3) and I'll be on the Coumadin therapy for at least 4 months. We re-check the Chest CT scan in two weeks to make sure the Clot is decreasing in size, and I get a repeat Abd/Pelvic CT scan in 3 weeks to make sure the 2 antibiotics Im taking is helping the abscesses.

Its been a VERY long 3 weeks!! Im ready for my "normal" life now, no matter how crazy that might be :)

Saturday, August 6, 2011

Surgery, Post Op and the ER

Those silly doctors are quick! One minute you are laying in your hospital bed waiting for the OR Nurse to start your IV, and the next minute you have an IV, 10 vials of blood drawn and a team of doctors around you. When it starts to happen, it HAPPENS! I hardly had time to be mentally prepared. I guess its better that way....here is the low down on my surgery and how Diabetes has(mostly)cooperated!

CGM attached. A HUGE help. Surgery morning after nearly 2 full days without solid food I woke up with a BS of 65 although I temp basaled my way up to 170 the night before. I had no choice but to pop 2 glucose tabs and disconnect my pump for a bit. It all worked out fine. For surgery I set a temp basal of 40% (per the Anesthesiologist) and stayed from 110-150 during the entire 4.5 hour surgery. I ended up having endometriomas of both ovaries, but the suspected severity wasn't as bad as once thought. (HOORAY!) Just 5 one inch incisions were needed to get all the girly goods out! I also signed consent before surgery to give my girly goods to research focused on Endometriomas. (I thought this was pretty cool!) In all I had my Uterus, Cervix, Fallopian tubes, both ovaries and Appendix removed. I also needed a Cystoscopy for issues the Endo caused with my bladder. OUCH!

A surprising thing about my Anesthesiologist...she made a HUGE deal about me having T1 "Juvenile" Diabetes and was literally in Awe of someones choice to manage with an insulin pump. She kept saying how "uncommon" it is to see T1 Diabetes, especially someone that manages it while maintaining "great health." She went on and on about how her cousin was dx'd as a teen and is a total MESS. She kept saying how she believes being diagnosed as a child is the "key" to living well with Diabetes, because kids are so adaptable compared to teens. It was interesting to hear her babble on about "Juvenile Diabetes" (she was a supper bubbly talkative type) as she slipped me "something to relax me" into my IV. That was the last thing I remember, and I woke up in my room upstairs all nice and comfy! (hooray for avoiding the damn recovery room!)

I was up and eating dinner (STARVING!) 4 hours after surgery that night. My blood sugars were steady around the 160's which I was fine with. I didnt want to deal with low blood sugars with everything else going on. I felt pretty darn good until the anesthesia wore off completely. Im always reluctant to use pain meds, but decided the Morphine pump was my best friend within a few hours :) I was discharged the following day, just 28 hours after surgery. Never saw a blood sugar over 180 :) I did feel a bit nervous going home so soon...I guess I should have taken the option to stay another night...

Two hours after I got home my face felt hot. Hot eyelids. I thought maybe it was hot flashes. NOPE. I spiked a fever. (even after 600mg of Ibuprpohen was taken routinely since surgery) which made me realize they didnt even write me a script for preventative antibiotics! Why would they do that? CGM alarmed at 250. Corrections wouldnt budge. Ketones, HIGH. I know some degree of a raised temp is expected after surgery....but this was not good! Somehow seeing the high ketones instantly made me feel like crap. Funny how that happens!

Without much thought, I just said screw it! Im not going to take a chance on infection and DKA taking over. I didnt have the energy to deal with that possibility, so we went back to the hospital as recommended by my Endo. I waited about 30 minutes in the ER until I had cultures drawn and a chest xray. I was stuck in a secondary triage area in the back of the ER with just a recliner chair to sit in. No privacy AT ALL, surrounded by the war zone of all bad ER nights you could imagine. Yeah, I dont miss working in the ER at all, and RN's never fail to amaze me!

I still feel like the ER was the best place for me to be, I have a real fear of DKA and loosing control of my Diabetes even without this major surgery!

So, at this point my pump is set on a 50% basal increase and Im only going higher. My super awesome ER nurse came back to say it looked like a UTI may be the culprit. (Damn catheters) She started an IV and gave me some Morphine (even though I didnt really have any pain) some anti-nausea meds, and a big fat dose of Rocephin.

Within 10 minutes I felt weird. Just weird. Everything went quiet. I kept saying to myself that I hadn't felt this way earlier with Morphine AT ALL. I asked Josh to check my blood sugar as I started to feel a sense of panic. I was 230. I felt like my blood sugar was crashing. I felt like life was being sucked right out of me. I was thinking maybe the meds and fluids were freaking out my numbers. My chest tightened. I felt smoothered. I began to cry uncontrollably, sobbing, without notice. My tears burned my face, and tasted like acid. I told the Nurse my symptoms, and she said all my vitals were fine....but she could hear my panic. Then my pulse rate more than doubled in an instant. All I could hear was BEEPING BEEPING of the monitor, and Nurses running around me fumbling through drawers and calling for the ER Doctor. I was yelling for Josh to check my blood sugar (I wasnt even thinking allergic reaction!) and telling the Nurse to get me D50. I said it over and over and over, while telling her I wasnt sure that was what I needed. My body began to shake and tremor out of control. My legs were the worst, violently flying up, down and around. Talk about abdominal pain! I was SO freaked out inside. Totally aware of what my body was doing, and unable to do anything to help myself. The last blood sugar Josh took was a 180, and D50 was given almost in an instant. It never even occurred to me I was having an allergic reaction, it was a Hypo that I feared. Actually, I still dont really know what happened!

Josh and the Nurse took off RUNNING with me in my recliner chair down the hall to a REAL ER bed after Benedryl was given. I was crying out loud saying "I need more
D50, I need more Benedryl!!" all the way there while my body "seized." Josh threw me onto the hospital bed (seemed like it anyway!) while the Nurse zoomed around somewhere. When she returned she hit me with a dose of Ativan and I just pleaded for Josh to hold me tight while I shook. Suddenly I'd stop shaking. I'd think about the sound of a flat line, and a code being called in ER. I was sure sure I was going to die, or any second be in a Hypo coma. I kept saying in my mind "My girls need me, my girls need me." Then the violent shaking would start again. It seemed like an eternity that the shaking continued, although it was probably only 15 minutes or so. The Ativan knocked me out quickly. (Thank goodness) and I woke up the next morning at 6am. Blood sugar of 168.

I felt pretty darn good considering. I walked alot that day. I spent the day in bed with Maddison and Josh by my side. (Hannah had vball camp) I was kinda just there to get an IV dose of antibiotics I guess... The nurses kept asking me if I was ready to leave by the end of the day. SHEESH. I managed all my numbers and meals, mostly hanging out in the 130-180 range. At one point I hit 260 (after lunch!) so they called in the Internal Med doctor who questioned why I was "so high." How irritating! The nurses used my own BS readings for their logs, every 6 hours. I left the hospital that day, AGAIN about 28 hours after being admitted.

Today is day 4 post OP. I avoid the pain meds. Not much pain! The only pain I have is from the Dioxide gas still floating around my abdomen, chest and shoulders. My tummy feels like an aquarium with bubbles all around! Incisions are tender and my tummy is distended as though Im 7 months pregnant...but I feel pretty good! CGM is flat lining for the past 4 hours at a nice 146. I guess I should get on that and get my numbers down a tad since Im feeling better....-sigh- It would be so much easier WITHOUT Diabetes.

Thanks to everyone in the DOC for the well wishes! I survived all the chaos and apparently started an allergy list! NO ROCEPHIN for me!!! But yes on the Ativan!

Monday, August 1, 2011


At 7 tomorrow morning I'll be going in for my Hysterectomy! If all goes well and they dont find too much craziness in there I should be out after 24 hours, thanks to advanced robotic laproscopic procedures! But, if things are icky in there and Endometriosis has caused bowel involvement I could be in for some pretty horrid stuff like a bowel resection! Today I started on a PEG pre-surgical drink to cleanse the bowels just in case. Gross, I know! For 7 hours I had to drink 8oz of this ickity mixture every 20 minutes. Then ya know how the rest goes. Well, I survived! I havent had anything to eat in over 27 hours and Im a nice flat line 113 on the CGM. Finger poke verifies at 108. Ive been blessed to see flat lines all day, hitting 125 at the highest point. Ive been wondering lately if I need some basal adjustments....I guess not!

Tomorrow my plan is to bump myself up to around 150 then decrease my basals by 30% during the surgery, and until I am able to manage my numbers myself. I SO hope this CGM stays accurate! I always clue the Anesthesiologist in on the CGM and ask that they check my sugar 30 minutes in to the surgery, then each hour after. We shall see how this goes! Im off to bed now, hoping I can sleep! Lets believe this will be a "simple" surgery! I'll post soon, even if Im all drugged up!