To you, From me

It is 1:38am.

6 weeks of kindergarten completed. Check.

Most awesome school nurse (and school staff). Check

The most boring, consistent A1C (8.1 again). Check.

JDRF fundraising Lemonade/Bake sale stand completed. Check.

Jack (now 2) diagnosed with Ketotic Hypoglycemia. Check. (and WTF IRONY?)

(side note: if you look this little “ailment” up…Jack is not a skinny little white boy…he is huge and heavy.  90th percentile on height, weight and head size…he often mistaken for 3 years old, not 2.  again…WTF?!)

JDRF walk completed with Ellie having Strep throat. Check.

Sitting up due to Jacks inability to breath out of his nose, SUPER HYPER…sick…again…probably gonna have strep like his sissy and go low in the next 10 hours. Check.

Ellie (3rd day of strep) going low, 93 arrow down as I sit here. Check.

Posted on Blog for the first time since July…Check.

As you all are beginning to wake to do the nightly ritual of making sure they are ok…know that tonight, I am here awake with you. Though I don’t post, comment or show up to the DOC events like I wish I would, like I know I should, like I will eventually…tonight, EVERY NIGHT, I am here!

(as Reyna says with such eloquence)

JUST. LIVIN’. THE. DREAM!!!

Love, Sara

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Sugar Pop and other Tid-Bits

Mom, why can’t I have some of that sugar pop?

This question was posed to me while in the car on our way home the other day. We have talked about pop with sugar and diet pop a hundred times before, but she was genuinely asking me the question this time. I told her that it wasn’t that she can’t have it, just that it has a lot of sugar in it, like a juice, so matching the insulin to the action of the sugar would be rather difficult and probably not worth it.

Ellie is 5, “not worth it” has no meaning to her…it’s the equivalent of me just saying no basically.

She ponders my answer for a moment and tells me that she would like to try it out anyway. Ugh! I thought, with my eyes in the back of my head searching the grey matter (cue : Reyna of course!) trying to think of a clever way to stop this madness without crushing my little girls optimism about doing something so damn simple as drinking a can of flippin’ pop. I told her it would work best with a meal and then explained the insulin action of Apidra and the action rate of “sugar pop” which is like the action rate of her juice when she’s low…very, very FAST. I used the example of her low from me bolusing a full bolus on ice pops the other night (which was a damn BIG holy cow low by the way, more on that a little later)…how it just doesn’t match up well and we needed to be cautious with this idea, you know, not just all willy nilly this little idea out. She was dead serious on the subject, had me repeat my explanation of insulin action and food action. She repeated what I said with added hand gestures…she was going to have sugar pop and she was totally prepared for the risks!!! This conversation occurred earlier in the week, we have not had sugar pop yet. Thank you 5-year-old brain who will get distracted by anything and everything at anytime! I’m not ready to start “experimenting” with the heavys yet. I just got comfortable with Dairy Queen mini blizzards for gods sake! Ha!

Now I’m going to get a little jumpy here, so bear with me.  I haven’t blogged for a couple of months and I’m going to just throw it all out there and then hopefully get a mo-jo back on for some semblance of consistency with my blog.

First, I live in Kansas.  It’s DAMN HOT AND MISERABLE HERE.  There is literally noooo excuse for this temperature this summer.  I am NOT happy about it.  A person CANNOT breath outside between the hours of 11am and 7pm EVERY SINGLE DAY.  It’s just wrong.  It’s like ONE HUNDRED AND SIXTEEN DEGREES OUT SIDE…EVERY. SINGLE. DAY. Good lord! Give. It. A. Rest.

Second, I have been quite silent since June.  I think Diabetes Camp did something to me.  I’m not sure what, but something.  Ellie loved it.  It was a small group of local Type 1 kids and only half day camp for a week, but for her it was really great and aside from being the youngest one there…she did really well I think.  It’s hard to be the youngest, but she really came around the second day.  I am very proud of her.  I stayed with her at the camp and helped when I could with the happenings.  I wanted to help anyway, but I also knew there was no way I was going to leave her there, not at 5 years old.  However, her blood sugars were fine and I realized pretty quickly that she would have been just fine without me there.  The nurses were wonderful and Ellie had no problem with the “rules” of camp.   Camp tired me terribly.  I think it drained me a little emotionally too.

Third. I think Apidra brought Ellies A1C down from 8.6 to 8.1 in two months.  I can’t prove it, but I’m keeping the Apidra.  Just thought I’d share!

Fourth.  Ellie starts Kindergarten August 17th.  I have decided that I don’t want her to go.  It’s just easier on me if she stays with me all the time so I can manage her blood sugars and don’t have to teach or explain how to manage her blood sugars to anyone (or everyone)…yeah…I know, she’s going to school.  She is SOOOO excited to go and I SOOOO want her to go and love it.  I just don’t want to feel scared and worried.  It makes me nutty and emotional, this affects others in my life in a negative way…they don’t like it either! (Specifically Ray, you will suffer the consequences of my excessive worry and nutty behaviour!  Sorry ’bout that in advance!)

Fifth.  I have, against all that is sane in my body, purchased Ellie…my 5 year old daughter a cell phone.  This actually defies logic I know.  However, all summer I have been dreading school and dreading my little girls questions regarding her freedom from helicopter D-mama.  Ellie is not going to want D to be a major “issue” while she is at school.  I have been reading blogs and articles for over a year now and the common theme amongst the school age Type 1 kids seems to be the whole going to the nurses office thing.  Missing class time, not getting to the lunchroom with the rest of the kids, not getting on the bus with everyone.  I was wracking my brain trying to figure out what I should ask of the staff at her school, how can I help Ellie with this issue that is sure to come up with her?  At Kindergarten round-up the nurse told me she would go to Ellie during the day so she wouldn’t have to leave class.  Oh yeah!  That is wonderful! But I want to be a little ahead of the game I think.  Yes, it’s a control issue…I admit it.  Sooo, I have got the cell phone…she is texting me her numbers and arrow direction (Dexcom CGM) already and I am happy as a pea about it.  I’m not sure this first year just how much the cell phone will factor in to her daily management, but I do know that she will benefit greatly as time goes by having the freedom this cell will give US!

Sixth, Steve at Without Envy has not posted.  I’m hoping all is well at his place and with his peeps…and he needs to post.  hint hint hint!

Seventh, (and last) This summer hasn’t been that bad in the D context.  I have to say that our second year has been much better.  I do have some peace…I’ve even had the benefit of actually being bored occasionally.  My next goal (for me) is to try to figure out how to reach out to other newly diagnosed children’s parents and be supportive and helpful.  The DOC is beginning to be a part of me and I love that.  It’s a wonderful place…thanks to ALL OF YOU WHO POST AND POST AND POST!

Feel free to comment on the “sugar pop” issue.  I have no clue what others do or think of the subject with D!   Loves!

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From Blank to Normal…

I have been unable to pull a post together on my blog for quite some time now. It has been about a year and a half since diagnosis and though I feel more confidence everyday regarding the care and management of Ellie’s diabetes, I feel numb…blank in a way.

I don’t overreact to the trials and tribulations of D management anymore…but somehow I feel like I under react at times. The sting is gone I guess (if that makes sense?)
But the repetitive drudgery of the care is still heavy.

(I do however read my favorite bloggers pages daily; comment here and there…I’m soooo thankful I found the DOC. You all are my lifeline, and eventually I hope to contribute more than I do now.)

So on with the post:
Kansas weather has seemingly taken FOREVER to level out this year. 90’s to 55 within days then back up…ugh. This summer will be our first real summer with D. Last summer D was new and I just watched for lows and fed carbs to the insulin. This year I’m going to try to be more calculated and work the advanced features on Ellie’s pump in an attempt to manage lows in a more thoughtful way.

Then yesterday happened.
Ellie and her little brother Jack were outside most of the day playing. Ellie has been running a little higher the last few days, so lows were not a concern for me most of the day. I did yard work here and there and kept an eye out for big sister – little brother tangles. Relaxed and feeling ok myself.

“Mom! My sensor came off, my pants pulled it off!” The sensor for her CGM (continuous glucose monitor) was a few days past the 7 day mark, hanging by a thread but pretty accurate so I had not changed it. “That’s ok Ellie, do you still have it?!”, “Yes, can I pull it the rest of the way off?” she says. “Yea, go ahead” I tell her. I took the receiver and the monitor from her and told her that we would put a new one on later…no big deal. She ran back up the hill, blonde hair waving, and little legs running…

”Yea, I’m normal” she hollers out.

Her words cut through me like a knife through butter.

 I think I actually lost time for a moment.

I didn’t respond to her statement. She wasn’t talking to me, she wasn’t talking to anyone. It was an announcement of sorts, glee expressed in a moment of freedom.

 Freedom…

Blank, I am just blank. Ellie will be five at the end of this week. Five. Her dialogue has always been a bit more than her age. Sometimes it’s pretty impressive, other times it gets her in trouble. We talk about diabetes probably 2 or 3 times a month. A spontaneous question from her usually opens the subject.
Playing T-Ball, “Is there going to be other diabetics like me on the team, Mom?”

Going to bed, “Mom, why do I have diabetes?”
In response to my answer to what is diabetes, how did it happen? I told her that her fighter cells made a mistake and thought her insulin making cells were bad cells, so they attacked them.
Her response, “Mom, do you think my fighter cells are sorry for their mistake?”
God yes child, they are SOOOOO sorry…
My heart just breaks.

But these days it’s blunted by something? I can’t put my finger on it. It’s probably a bit of exhaustion, but I’m wondering if it is some sort of survival mechanism that I have kicked on to keep me from those deep, deep feelings of sadness?
How is it possible for my little girl of five years old, only a bit over a year into diagnosis to have these seemingly grown up thoughts and questions?
Normal?
I just can’t shake it.
How does she even know the term normal, let alone the context?

Simply amazing to me…

So extending boluses, experimenting with temp basals, calculated snacks and bolus experiments…I think I’ll give it a bit more time. I think I’ll just keep plugging away at D as I have been and focus more on the little girl that has all these questions and told me that “she is not normal like the other kids…that she has all these extra things on her that make her different…that her insides are different from everyone else because she doesn’t make insulin”. Maybe I have been blank lately so I have room for her needs and thoughts as she expresses them. She doesn’t need a D momma who breaks down in pity when she is feeling down and confused. She needs a level head that doesn’t overreact to her concerns and questions.
I am both amazed and saddened by my child’s words and feelings. I just hope I can be a source of power and acceptance for her.

I really hope I get it right…not just for me…but for my little Ellie Lee.

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D-Parenting…

It’s taken me forever to return to this blog/post. Life has a way of taking soooo much time, let alone D and the daily routine of maintenance (emotional and otherwise). A few weeks ago I found myself driving to Ellie’s pre-school after she was there for about an hour to address concerns of a HIGH on dexter (Dexcom CGM). I knew that she was going to go high, but I knew it wasn’t over 400 as dexter was indicating. Because I did know that she was running high I was more than ready to receive the phone call to return and address it (the breakfast bolus didn’t do its job).  Once there I did a blood test to find her somewhere in the high 200′s.  This event made me realize that I needed to do some perspective finding.  Over the last few weeks I have been trying to power through the enormity of D.  Trying to “get to the other side” of it. The gloom of the last couple of months was beginning to envelop me and my anger was beginning to boil deep inside. 

I decided I needed to make an attempt at defining parenting with D for myself.  Not just to have perspective, but to end the mental “saga” rolling through my head.  As described by all fellow DOCers…D is exhausting, depressing, drama filled, craptastic, sleepless, fear laden, bullshit mostly.  But it’s your kid and it’s a part of your kids life, so you try to make it less of the above…not just for their sake, but really for yours as well.  It’s like you can’t really complain EVERY day.  It’s not really THAT bad EVERYDAY.  But the second you pose the question or you try to describe what it’s like…you are instantly dragged back to the reality of D maintenance and the consequences of it all.  The enormity of it all in itself is overwhelming. 

I finally have been able, without a crap load of guilt, to say: When she was diagnosed, my life ended.  Not literally…but that is the best I can do at describing what I feel.  I had not yet chosen what her life would be in my eyes.  She was only 3.  But I had a vision of my life and where I was going and how I was going to conduct my life.  That path stopped January 19, 2010.  I’m not mad about it really.  Not now at least.  I’ve quit my job.  I’ve dedicated the last year of all free time (and not so free time) to reading, blogging, logging, and learning EVERYTHING I can possibly get ahold of regarding Type 1 Diabetes.  I have spent more time over the last year with doctors and more time in labs then in my life cumulatively.  Type 1 Diabetes is in almost every single breath I breath.  It is the beginning and end to every single decision made in my life.  I go to the store, it is a blood check and  supply inventory.  I take a shower, it is a dexter check and assessment of time away from her and the possibilities of what can happen or not happen while I am in the shower.  Meal times are thought of and planned in the context of boluses and basal timing.  Bedtime is a decision based on previous experience and possibilities.  Bedtime is definitely the most intense part of D for me.  It scares me.  Leaving her with the few that I can is tense and difficult for all involved.  I speak in a serious, sober tone of the last few hours or what has been occurring at that time over the last few days, or what could happen based on what I’ve done before leaving…it’s a big deal for me to leave her.  I don’t enjoy being away from her, it is still too hard. 

I have literally not “worried” about that childs safety in any other context than D for over a year.  Not that she is in harm’s way all the time, but I don’t worry when she runs too hard and may fall, sure I mention it to her to slow down, but I’m not that worried.  I don’t worry about whether she is eating a nutritional, well-balanced meal really.  I just worry about the carb count and insulin requirements.  I don’t worry about her education or progress with letters and numbers…all the things that I believe I would be worried about without D. (Don’t mistake these statements to mean I don’t pay attention to such events!  I just don’t worry about them!)

I spend my time as a D parent making sure my kid stays alive.  I want her to be alive and well even after I am gone.  I do not want her to die from insulin or suffer complications from high blood sugars.  Awful as it sounds it’s that simple. 

I do not want Ellie to ever have too much insulin and die from a low. 

I do not want Ellie to suffer physical harm from high blood sugars. 

That simple statement requires me to give up the path I pictured for me and spend the rest of my life ensuring that not only I, but Ellie learn EVERY SINGLE THING we can about Type 1 Diabetes and it’s management. Then we shall together build her path as she grows. 

Once I worked it out…it all made sense again. 

Yes, my life ended when Ellie was diagnosed, but my new life started.  I can’t imagine a better life path then mentoring and observing Elizabeth Lee Fincham grow into a beautiful, smart woman

…who happens to have Type 1 Diabetes.

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REEEAAALLLYYY!? (said LOUD)

You’d think my family lived in a damn barn…a dirty ol’ stinky barn. My kids are sick AGAIN. I’m sick of sick. I’m also sick of D.
Am I allowed to say that when I am NOT the one who has diabetes?
That is my big question this week. Am I allowed to just be sick of it?
I’ve been reading everyone’s blogs…
The lull between the end of Christmas holidays and spring is no doubt mind numbing for everyone…the weather itself is evil and tricky regardless where you live…little nice, more snow or rain, little nice…very tricky. Meri is down, Reyna is running her cowgirl ass off, Joanne is on the brink of death ((hugs babe)), Hallie is mad as hell and sick of ignorance, and Steve is in a BIG OL’ quandary and Lora my dear…I am in the same damn place. (well except the stripper shoes, I don’t wear stripper shoes because I’m lazy)
Ok, so a point here. I was trying to figure out how to emotionally get through this week. I’ve been home for 2 months now (having quit my job) and I haven’t really had a chance to “enjoy” being home. Hospital Hell (previous post) and then some other illnesses, head bug problems (yes BUGS) and then INFLUENZA. I have (knock on wood) escaped the last two attacks of ICKY, but my kids…ugh my kids have not. For once, D has not actually been THE problem, but I have decided that D is ALWAYS A PROBLEM. That’s the drag, the kicker, the ugly little secret. D makes EVERYTHING a bigger pain in the ass then it already is. Lora’s right, there is no light at the end of the tunnel, not the light we all think of when we think of light at the end of the tunnel. In other words there IS a beginning, but there IS no END. Ya, a year later we are much more calm and less disturbed by D. But it isn’t any easier and for every damn milestone that Ellie meets there is always a D learning curve added. She’s going to be 5 in a few months and she’s rapidly turning into an adolescent child from a little baby girl. She’s quicker, smarter, and bigger and has more to say every day. D just won’t quit and when other normal life situations come up…here comes that D train to make it all that much more exhausting and complicated. A fever isn’t just a fever; it’s a fever with insulin resistance. Jack is sick, Ellie is getting sick, can’t just treat Ellie who has milder symptoms with over the counter meds to get her through because she has D and it could be more dangerous for her. So double the tamiflu for 2 kids and then make a D-mom crazy with worry that not only is the little boy going to get horribly ill, but the D kid may end back up in the hospital…The lingering thought (fear) that this is the virus that will trigger Type 1 in Jack…The BS of “sick day” management for Type 1 insulin dosage…ya right, because Type 1 is soooo consistent to start with!?
So again, the big question is…am I allowed to be sick of D? Can I complain and bitch about it even though I am a mother and this is a part of my daughter? Can I continue to cry out in anger and irritation without being a total ass of a mom? It’s actually a tough question for me to answer. It’s a little sensitive. I’m supposed to be completely rock hard on the subject. In control. The love I feel for my daughter should override any of MY needs or anguish. I should not be frustrated because D is a part of my daughter and I am to accept it unconditionally. She requires insulin management to live, I am to provide the insulin management and then teach her over the next 15 years to do it herself so she can live a healthy, vivacious life. Black and white people, it is what it is…This isn’t a disease for ninnies, whiners, weaklings. Get up and just do it, don’t piss and moan about it because it isn’t going anywhere. I don’t know…
Maybe…oh…maybe…ugh…maybe I’m just damn sick of D.

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Hospital Hell

First I would like to point out that I am of sane mind and body.  Second I would like to point out that although I have only been a D-Mom for just days under a year…I’ve been doing this gig 24/7 for just days under that year and I’ll be damn if I’m going to go through what I went through this week again.  So if you are reading this and make it through to the end…comment and give me what you’ve got.  I know there are reasons for everything and the more perspectives I can get the better I’ll be in the future!

It all started with the FLU.  Yes, my father was the first victim.  Took him out in a blaze of glory, small indent in the bathroom wall and one toilet roll dispenser not so artfully removed from the wall…he lived through it, but it was ugly!  Next came my little Jack.  Projectile like all over my husband on Sunday.  Ellie and I were Monday night, I at midnight, she at 3am.  Thank goodness for my mother because I was in no condition to take care of Ellie.  Ellie’s numbers stayed steady all night thankfully, but she couldn’t keep an ounce of liquid in her to save herself so by noon the next day I was getting concerned.  The ketones were beginning to climb of course but the BG was staying freaky steady and her only problem was not keeping fluids in.  So I called the Endo and looked for some guidance.  He sent us to the pediatrician for a referral to the hospital for an IV drip of the fluids to keep her out of ketone hell.  This was all smooth as silk and I was feeling really confident about the whole process.  In my mind we would go into the hospital they would hook up the IV we would hydrate for 4 to 6 hours and the puking would subside in that amount of time (as it had for everyone else including myself so far) we would be back home and resting late that night. 

That’s a NEGATIVE!!!

Not only did it take almost 2 hours for an IV to hit my daughters vein, but events unfolded in a furry of uncomfortable, hostile, bullshit kind of way that I for one do not and probably will not experience again!  I’m going to save the actual details for a time when I literally have nothing to do (so ya never) only because the details get me too angry and I’ll feel like crap if I re-live it.  But I think if I throw out some specific statements you all can fill in the blanks and maybe someone will enlighten me, or I will provide some good proactive thoughts for your visit someday. 

1.  Ellie’s blood sugars stayed (literally) between 180 and 230 from midnight Tuesday until we entered the hospital at 2pm Tuesday afternoon.  This seems relevent to me.  She began to float slowly down to 97 by 5pm Tuesday night in the hospital. 

2.  I do not give more insulin to Ellie when she is at 97, this seems not only a little silly but really stupid to me.

3.  Yes, we have the Dexcom.  However, Dexcom is not magic and is not always really accurate.  This is why we still test by finger poke 6-10 times a day.  We do however trust the direction of the arrow on Dexcom.  When it says down she is going down.  When it says up she is going up.  When it shows straight across…well then you must wait for the next “event” to happen and make the arrow go up or down. That is the REALLY FUN SHIT ABOUT DIABETES!

4.  We do not give more insulin to Ellie when she is at 97.

5.  I do not have a specific regimen that I follow to manage Ellie’s diabetes.  I have specific I:C ratios, Basal settings and correction factors that I can offer.  But I do not have a specific thing I do when Ellie is at 236.  There are some factors and variables that must be discussed before “action” will be taken.  It is hard for me to explain what we do to manage Ellie’s BG…I NOW know that answer is not appropriate in a hospital…they want absolutes and sliding scales.  The particular staff I was dealing with had not ever seen a Dexcom CGM or an Omnipod pump.  This was an issue. 

6.  The hospital uses urine ketone strips to test for ketones.  I use a blood ketone tester.  They would not use my blood ketone test results as an indicator of ketone levels.  This is extremely upsetting and caused some problems from the get go. 

7.  I had to defend myself and my decision to not give Ellie more insulin when she was at 97.  I was asked by a doctor if “Ellie had a seizure before or something?”, I was also asked if “I understood that her body was burning her muscles when she has high ketones?”.  I do not need to be reminded of what Type 1 diabetes is doing and will continue to do to my daughter for the rest of her life, I also have NOT witnessed my daughter have a seizure…my actual goal believe it or not is to NOT SEE THAT HAPPEN IN THE FIRST PLACE!  That would be why we do not put more insulin in Ellie when she is at 97. 

10.  Ellie’s ketones were down by half within one hour of receiving saline by IV.  She was given anti-nausea medicine and began to keep small amounts of jello and a popsicle in. 

11.  Speaking of the popsicle.  It was ordered by the doctor to see how much she would come up with a popsicle.  When I said she will come up a hundred points and why are we ordering this?  I was ignored.  Hind-site, I think it was an attempt to bring her up so I would give her more insulin.  Only 2 days later do I know what the hell that’s about, but I’m still not impressed.

12.  Within 3 hours Ellie was no longer throwing ketones and was eating regular food and drinking.  However, the urine test was still showing ketones so I was still getting harassed by everyone about giving her insulin.  I explained that we would not be increasing anything and we do not correct before a meal unless she is over target…I also don’t bolus for a meal and then all willy nilly give her insulin right after a meal.  I already over bolused for the sandwich she had because the bread was big and foreign and I had to completely guess. And proof you better not trust anyone with the care of your diabetes management, when I asked the nurse to give me the carb count for the jelly, she gave me the serving size.  The jelly packet was 14.3g OF JELLY.  This is the same nurse who pulled at Ellie’s Dexcom sensor stuck to her butt trying to figure out what it was…thanks because it’s hard enough to get the little antenna in her and working correctly, pulling on it surely helps this process.

 13.  Ellie’s BG started rising at 3am Wednesday morning and I began a series of corrections.  I reported to the staff that I was correcting and felt it was probably a shortage on my part from the late snack she had a couple of hours before.  It became obvious by 5am this was not the case, I corrected and let them know again…I also let them know that the there were NO KETONES PRESENT and these high numbers can happen, we just need to keep giving insulin and it will come around.  By 6am I was at a loss she was still damn high and rising and I made the executive decision to go old school and just bolus 2 units straight.  No formula, no calculations, just a flat-out feels like a 2 unit situation.  I finally got a hold of my Endo a few minutes after I did that and explained my whole night and how upset I was.  He explained that fast acting insulin can sometimes be “too fast” or just effective enough to keep things just ok enough that ketones will increase without BG’s showing an issue.  I told him we have no ketones and I wanted to see what my 2 units do before we do anything more, that I’m getting close to stacking and I want to wait.  He was good with that.  At about 1 hour 45 minutes the nurses came in with their big ol’ meter and did a BG…30 points higher than my meter every time it came up with 330…mine was 274 and Dexcom was at 240 with an arrow down.  I told them she was going to be good, I talked to my Endo and give it a few she’ll be right down in range.  They didn’t.  They told the doctor on the floor who called my Endo and told him 330…they returned proudly announcing that my Endo ordered 2 units of long acting and something else.  I said no, that she’s going down and we won’t be adding anything to what is in her now.  They said, but your endo ordered it, I said, he doesn’t know where she is right now and you are more than welcome to have him call me directly if there is a problem. 

I was then told that we were cleared to leave and they would start the discharge process.  Knowing I had an appointment with my Endo the next day I told him that I needed him to explain to me what the hell happened and why my experience was the way it was.  That I was sure I had gone wrong somewhere in my communication but I was really sure that whole experience was not at all my doing or that I deserved to be treated this way. 

VINDICATED!

Before I could even tell him the details of my night he assured me that there were already two meetings regarding our experience at the hospital, with his staff and the other endo in his office.  He apologized and told me that not only would he personally deal with me if a similar situation (like flu) arose, but he would help me to ensure that I would have the prescriptions (like anti-nausea) and supplies to care for her at home. 

I told him that I understood that I was not a doctor, but I was really really sure that she was throwing up because of the flu, and felt that the doctors thought it was because of ketones…the ketones were gone quickly when she started the IV…this reinforced my belief that if we got her hydrated she would level out and all would be ok.  

I did learn however that they are noticing with the pumps that the insulin delivery is so smooth and efficient that people are showing normal BG numbers but still going into ketoacidosis.  So there are some different techniques to get rid of ketones with a pump. IF you have high blood sugars with ketones, yes you give insulin and fluids.  All the same.  But IF you have on target numbers and increasing ketones then you are actually going to be advised to eat carbs, bring your glucose up to 200 and treat accordingly with your fast acting insulin.  That is the extent of my knowledge.  This didn’t apply to my situation.  In our conversation he mentioned glucose in the urine…I told him they were testing for that and she never had glucose in the urine…which definately says SHE WAS DEHYDRATED AND NEEDED FLUIDS.  UGH!  Ok, I’m done.  I am actually over it, my Endo was very sweet as usual and let me know that I was not totally geeked and that I was on the correct path with Ellie. 

So all said and done.  I think I will work on a management protocol to give the hospital when we get there someday again.  Something that meets in the middle of information needed for the hospital to fill in the blanks on their paperwork and something that affords me latitude to still manage the way I see fit.  I will also request from my Endo and/or doctor anything that could keep us home to manage, if available and safe.  I didn’t really know I could get any anti nausea meds or that I should try it. 

Ellie is doing fine, but even as I sit here writing this out in the middle of the night I do have to say that her BG over the last 2 days has been just EVERYWHERE!  I assume she is recouping from her illness but we are talking low numbers that don’t budge for hours regardless of what we give her and highs that don’t respond for 3 or 4 hours instead of the usual 2 hours.  I hope this levels out soon…I’m about to pull my damn hair out!

Thanks to all of you (if any!) who made it to the end of this…I know it was long, but I appreciate all of you as usual.  I told Reyna that I totally sat in that hospital all night wishing I could call her and talk directly to her so I could get a Reyna pep talk regarding the battle I apparently waged against the system.    I love you all and spending time with all of you blogging is really what gave me the confidence to stand my ground in there.  You are all a wealth of knowledge and a huge support…but I guess we all know that right away when we share and read each others blogs!  ((hugs)) to all!

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Sensitivity Factor

Sensitivity Factor
HIGH.
Context:
Meri, “Been Feeling Edgy Lately” (11/20).
Reyna, “Renting on ROIDS” (12/19).
As always, I am again kept sane by my fellow D moms, dads and PWD’s with their endless stream of reassuring and familiar words. Even when I fail to keep some semblance of a blogging schedule, my ol’ trusty’s are tapping away day after day leaving calm and peace in their wake. (wordy eh? Ha!)
I am definitely in a somewhat blah, somewhat tired, somewhat blank place the last few weeks. I’m having difficulty with thinking straight, getting excited about anything and my motivation is really LOW! Like LOW LOW! I’m glad it’s Christmas. I like Christmas. I am looking forward to Christmas… This is our first D Christmas and I have to say I am somewhat grateful that Ellie was diagnosed last January so we’ve had 11 months of experience under our belts for the potential holiday challenges. Ellie (as I’ve mentioned) isn’t that hard to monitor when it comes to food. She doesn’t eat but 5 things. However, cookies and candy do happen to be 2 of the 5 things!!!

Lorraine (of Caleb) mentioned to me in an e-mail (by the way thank you for your response!) the concept of subtle changes when she switched their insulin brand for Caleb.
I began to wonder…
When reading blogs it seems one is getting the nitty-gritty. The deep thoughts of some, the fantastical thoughts of others, the entertaining (I use the word entertainingly very lightly) description of the daily in’s and out’s. It seems to me like some people have really found their place, their voice, even their calling. When reading the various personalities and stories I am always so impressed with the consistency of most of the blogs. Like last night I was trying to find a post for my husband to read that I had read a few days ago. I forgot who wrote it so I was having to look at my favorites list and pull each one up.  I found myself skipping one or two and saying, “she wouldn’t have said that” or “Nah, that’s not her style”. It’s pretty cool really once I started thinking about it. I’m actually feeling like I know all my blogger buddies just a little better as time is passing! When I didn’t read my blogger buddies stuff for a week and then had a chance to sit down and read them I was consumed and comforted within mere minutes of reading and that is soooo nice!

So back to subtle and sensitivity.
High sensitivity factor with subtle changes.

This, I think, is where I’m coming from at the moment. Caleb’s mom said that she didn’t see any night and day differences when trying the new insulin…but she did realize that she wasn’t calling in to the nurse like before. Subtle. Reyna had the post (mentioned above)  that I could have bathed in and made all mine…(I read it twice and it was long!) I cried, not hard, but I felt her feelings just the same…High Sensitivity. Which brings us to the cliff that Meri was talkin’ about (mentioned above) a few blogs ago. My toes are curled tight around the edge and I know I’ll make it, but I am damn tired and damn scared that I won’t be able to hang on to all that needs to be…well…hung on to! I have a high sensitivity factor right now and I’m just realizing it…like literally just realizing it. It’s been a subtle progression of change.  I am beginning to understand that who I am now will be a bit different from who I was then.

Ya, I know…DUH!!!

But I think to some extent I haven’t had time to truly absorb who I am going to be as a result of this experience. Or better who it is I need to be or have to be now. Diabetes has defiantly increased my sensitivity factor…in some ways for the better and some ways for the worse. I definitely have more compassion for people and their struggles with health. Chronic actually means something now. Like really means something. Fear has a tangible feel to it.   All the priorities of the past are now somewhat silly and shallow.  It’s sort of cool like that.  Life that is.  I’m trying to adjust to my high sensitivity factor, but still trying to  keep it subtle.  I don’t want to overdo it, that Beast will bite if you get too confident and think you got it all figured out.  So I’m still out here, pluggin’ away at D and trying to get into a groove with this bloggy thing.  Don’t give up on me yet!  Just trying to keep it subtle!!!  ((Hugs to all of you))

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