Friday, July 29, 2011

The power of Grandpa

I'm not sure what it is about Grandpas, but they seem to make the pain go away!  And for that I won't complain!

When Mom and I mentioned putting on a new set as soon as we got over there this morning, Ellee started whimpering and crying.  So we called for Grandpa (who is home for a few days from the National Guards).  He comes out and sits down on the couch with her.  He asks her questions about the pump, like how many times we have to do this vs. how many shots we get a day.  While she insists that we do this set in her arm, I hate telling her that with the size of the set I have that it's too big to put in her arm so we have to find a very fatty area. 

There isn't much cooperation to it at this point, so I firmly tell her that it's time to put it in.  She can either lay down on the couch, lay down on the floor, or give Grandpa a big bear hug.  Bear hug it is.  She climbs up onto Grandpa's lap, facing him, and likes the idea that when it hurts, she hugs his neck as hard as she can! 

Our last appointment with the nurse where we were taught how to insert these sets didn't go over very well.  I was very nervous about using the 30 degree setter because the 2 times the nurse did it, the tape didn't set quite right.  Although with the 90 degree disc that I used yesterday, I had to resnap it a few times due to the contour of her body. 

Deep breath... I positioned it on her upper butt to how I thought it would feel more comfortable and snapped, pushed the tape against her and pulled it out and DONE!  She didn't even have time to escalate from a whimpering to the expected screaming and crying that we had the last two times!  Awesome!  Now we just have to wait and see if she complains about any pain from this site and type of set. 

I'm crossing my fingers that the next three days go well because I'm faxing the paperwork to the pump company this afternoon!  I hope that she understands that this is the best option in the long run.

Thursday, July 28, 2011

3 Days

We were off to a rough start, lots of tears and pain, but 3 days are over now, and happy to report no major pains! 

3 days is the length of time that you wear an insulin pump set.  After three days, you take that one off and insert a new one in a different location.  Ellee did not like the idea of inserting the set.  She screamed, cried, and struggled.  But it needed to be done, so I tried to set it as fast as I could.  I put it on her upper butt so that she would hopefully forget about it and not be able to easily reach it to remove it when ever she wanted.


And it worked!  The first day there was an occasional whimper of it hurting, but she got distracted and moved onto something else.  The next evening, she was proud to show that it was still on and that it didn't hurt.  Same thing that next evening. 

This morning it was time to remove it and insert another one.  If we can get through a couple of these, then I would be comfortable calling the pump company and requesting the paperwork to get the ball rolling with the insurance company.  She was not happy because she saw the new set in my hand and started flipping out.  Mom and I tried to reason with her to no avail.  I was able to remove the old one with out her really acknowledging it, but not able to insert the new one. 

The compromise.  Mom and I tried to reason with her.  This "shot" once every three days doesn't hurt nearly as bad as 15 shots over three days as long as she relaxed and didn't fight us.  I also explained that once we get the pump, once we remove one we have to insert another one to replace it.  But in the mean time, since this is just a test, we decided it was best to wait a day.  Our deal is that we will put the new one on in the morning so that she can show Grandpa how it works! 

I'm keeping my fingers crossed that this will work.  In the mean time, I will be calling the pump company and trying to get things going.  I'd like to be far enough along that we can get any questions or concerns addressed by the doctor next month.  And I hope that we are far enough along that we can ease any concerns the doctor has, since her office have been dragging their feet with this whole process.

Tuesday, July 26, 2011

How do you explain?

How do you explain to a 6 year old that going to an insulin pump is a better option?  I'm finding that there really isn't an easy way.  I shouldn't be upset, or complain, or even be surprised because for a year and a half after diagnosis I wasn't sold on it myself.  It took me that long to warm up to the thought of having something inserted into you continuously for 3 days.  Needless to say though, through a seminar and a chat with a pump rep I was able to experience it first hand.  And I finally understood that it wasn't as bad as my mind made it out to be.  I've been able to have two different types of pump sets inserted and wear them around and realized that these will make life so much easier!  Control will be so much better and the idea of one stick every three days is so much better than 15 that we currently have with shots! 

Our two year anniversary was in April and annual blood tests came back normal, so I am thankful for that!  I wanted to start the pump process in hopes of having it in time for school to start, but no such luck.  First was the disappointments about the "classes" that the doctors office requires you to go through.  I'll spare the details, but I'm sorely disappointed with the two "classes" we've had to take so far.  But the best thing to come out of the second one is that we were finally able to insert a set on Ellee to see how she would react to it. 

The reaction was not good, but we are told that it is typical.  While sitting in the doctors office with a nurse showing us how to set these, Ellee flips out.  We get the pump rep in there to help us offer what we hope would be words of comfort, but El is so freaked out that she doesn't hear anything we are saying.  Unfortunately it comes down to having her sitting on my lap and holding her arms, dad holds her legs and the pump rep quickly inserts it into her thigh.  After she calms down, I hope that she will realize that it's not that bad... wrong!

After getting lunch and heading home, it's a typical evening with the girls playing.  At bed time as I get them in bed, Ellee informs me that when we had gotten home, she went into her bedroom and removed it, then stuck it back on.  As she is telling me this, she pulls it off and says she doesn't want to wear it.  I'm devastated because *I* am ready for the pump, but also because we have to go back to the fights about the night-night shots of Lantus.  She *HATES* this shot, she says it hurts and it's the only time she freaks out when we have to do a shot.  We have told her repeatedly that we can get rid of these shots if we go on the pump.

The girls were at their dad's last week, so once I got them back, I talked with Ellee.  What is it that she didn't like about the pump thing?  To my surprise, it wasn't the metal needle that inserts the cannula (plastic tube that stays inserted in the skin that delivers the insulin) but the cannula itself.   I can't say that I'm surprised because that was my biggest concern.  Then I asked her what does she like about it?  Less shots and NO night-night shot!!! 

When I dropped the girls off at Mom's house on Monday morning, I had Mom sit down with her as we went over this again.  I told her that I wanted to try a set one more time and asked her to try as hard as she could to leave it alone.  It was a fight to get her still enough to insert it on her butt, but I did it. Mom held her across her lap, I inserted it and detached the tubing. She cried for a few minutes, saying that it hurt but then go engrossed into her cartoon and forgot about it.  I wondered the whole day at work how she was doing with it, but resisted the urge to call because I didn't want her to be reminded of it in case she forgot she had it on.

I picked the girls up for soccer practice and Mom said she did good about it!  She said a few times that it hurt, but it was a brief complaint before going on to play with something.  At practice, she came off the field crying and holding her middle back.  I worried that she got hit or kicked there, but she said she fell and the pain she showed me was higher up.  Whhheeeeewwww!

She left it alone all of last night and this morning when I dropped the girls off, Mom asked about it.  Ellee proudly stood up and raised her night gown so that we could see that it was still on there!  Mom and I were so excited!  I'm not going to hold my breath, there is still time for this to go wrong, but it's a step ahead of where we were two weeks ago!!  I'm going to keep my fingers crossed and call the pump company to see about getting the ball rolling! 

Thursday, January 27, 2011

HUGE STEP!!!

Ellee tends to go in spurts of independence.  The last few days has been one of those times. When I get ready to do her shot, she wants to put the needle on and dial up the units.  No big deal, the needle is protected until we remove two caps and she has me check to make sure she put it on the right number since there are half unit markings.  This morning, however, it was different!

We were running ahead of time for the bus and I got her pen out to give her a breakfast shot while she was getting her shoes one.  Since she has been wanting to prep the pen the last few days I asked if she wanted to do it.  "YES!" and quick dart over to me at the computer desk was her response! While I was filling out her log and running the numbers through my head to double check my calculations came the obvious question: "How many?"  "Let's do 4 units."

I checked the pen to make sure she had it on 4 and not 4 1/2 and she tells me "I want to do it MYSELF!" Since she had already dialed the pen in, I had to ask if that meant what I thought it meant.  "You want to give yourself the shot?"  "YES" she said in her goofy, over-excited voice that she does when she is very excited about something! 

I was flabergasted for a few seconds.  So many thoughts ran through my head but one was louder than the rest: She will have to do it herself eventually! 

I told her that she had to do it in her leg, so she picked a leg and found a fatty area.  Next I showed her how to hold the pen so that she could push the end of it to inject the insulin.  Once she held it in her hand correctly and I could see she had good thumb range, it dawned on me that the way it "ratchets" may throw her off. I told her to take both caps off with the other hand and we did an "air shot".  She laughed to see the insulin stream out and was anxious to do the shot!

Ellee amazes me.  She takes things in stride that would freak most people out!  I am constantly thankful for her personality because that is one thing that makes dealing with T1D easier that it should be!  After she did her injection, she had this look on her face of accomplishment!  She was *so* proud of herself and had a beaming smile!  She even counted to 20 because I tried to take a picture but forgot that I had a different lens on and it wouldn't focus. 

I was hesitant to post the original image, but decided on this cropped version of it.  I think it signifies so much... those little hands have seen and held so much in almost 6 years that I have held them in my own hands. 

Thursday, December 23, 2010

Progress!

One of the downfalls of injecting insulin is that you have to rotate injection sites because the fat breaks down from the insulin.  We have 4 areas of the body that we can inject into: Upper Arms, Upper Thighs, Buttocks, and Stomach. 

From the very beginning, Josh and I agreed instantly that we refuse to consider injecting into her stomach.  Ellee doesn't have enough fat there (which I am VERY jealous of!). I also feel that since that is the only place that you are suppose to put ports when on a pump, I don't want to break that area down any sooner than we have to.  And El threw a fit every time we suggested her butt, so it's always been between Arms and Thighs. Is she had her way, we would only use her arms!

We are constantly asking her to let us try a shot in her butt and she throws a fit and starts bawling at the mention of it!  One of the advantages of the Novo Jr pen that we are using is that they have varying lengths of needles.  Our recent 3 month supply is "Nano" needles - only 5/32" instead of 5/16" of a standard "short needle" syringe!  We bargained with Ellee to allow us to try a shot in the butt once we get the shorter needles.  She was reluctant, but agreed.

Josh had the girls for a few days and sent me a message saying "two nights in a row!" and I knew exactly what he meant!  Tonight after dinner, I dosed the pen and called her into the room.  She knows the routine and when ever possible we inject in the thighs unless we are in public and she has pants on.  I pick my battles and try to let her decide where the injection will be.  If I don't like that area then I suggest we do something else and although it may be reluctant, she's switch sites.  Tonight, when she saw the pen she started to undo her pants so that we could do a thigh.  She stops suddenly and looks at me "why don't we do my butt?!  It doesn't hurt as bad as I thought it would!" 

FINALLY!!!  Progress!!  Another site to alternate between to allow the fat to rebuild to prevent lumps!  It's a step closer to controlling this disease and not letting this disease control us!

Wednesday, December 22, 2010

One Step Forward

Over the past year and a half, we have learned that when Ellee's sugars are either high or low, it effects her moods.  I have learned the hard way that if she is being difficult or defiant, that we need to stop and check her sugar before I punish her for something that she can't control.

After a severe low about a month ago, as recommended by the doctors, I sat her down and talked to her about how her body felt during that the low.  I explained that when she feels funny like that, she needs to tell us that she doesn't feel good and we need to check her sugar because it's out of whack.  I can't really expect a 5 year old to understand what is going on with their body and why it makes them feel the way it does, but we agree with the doctors that she needs to start recognizing her lows.

Both Ellee and her sister have a habit of coming into my room wanting to sleep in my bed in the middle of the night!  They both have electric blankets now so I know it's not because my bed is warm!  And since our recent move into Grandma & Grandpa's old house, I am more alert when I hear them get up in the middle of the night.  Most of the time I make sure that they find their way back to the bedroom from the bathroom.  The other morning around 4am I heard El get up and she walk into my room.  She has a been known to sleep walk, so I asked her to go in and go potty before she could get in my bed. She did and came back instead of going back to her bed so I asked what was wrong. 

"I can't sleep"
"Why not"
"I don't know, I just can't.  Mommy, I don't feel good, I think I'm high."

When ever we have a reading that is either higher or lower than her range, my mind instantly replays the last meal and I recalculate the carbs to make sure I dosed her correctly.  I didn't think she was high, let alone high enough to make her feel funny, but it would be possible that she was low.  No matter the case, she said that she thinks her sugar is out of whack, so I am up instantly to check.

Sitting at the kitchen table waiting for the meter to beep: 60.  The low end of her range is 90, so she was definitely low.  A quick look around the kitchen for something small that will bring her up fast and I found fruit snacks!  I had mixed feelings as I watched her eat her snack.  The brief thought of what would have happened had she not woke up and said something, but that was quickly overcome by the more optimistic thought that she is finally starting to recognize her lows!  She may not know the difference between being high or low, but I am happy (and thankful) that she is starting to realize that something is wrong and we need to check it!  One step forward in dealing with this unfortunate disease!

Thursday, November 18, 2010

How Low?

When we were at Childrens' after Ellee was diagnosed, one of the things they had to teach us was how to administer Glucagon in the case she goes unresponsive during an extreme Hypo.  I'm not sure how their bodies actually act during an unresponsive state, but I picture convulsions and something like a seizure.  And the thought of having to hold her still enough to get the extremely large needle of the Glucagon while she is shaking scares the crap out of me.  Every once in a while, Josh or I are asked (or we ask ourselves) how low does she have to get to go unresponsive? This is the first thing we asked the nurse in the hospital.  Like many things in the world of T1D, there is no clear cut answer - unfortunately.  Everybody's body is different. 

Last night, I found out the hard way that El can go as low as 35 without being unresponsive. (Her ideal range is 90-180.)  I do not like lows, but I also don't like her being high.  We have not had a hypo in the past two months since she fractured her wrist and after the consistent highs and a horrible A1C a few weeks ago, this is a positive sign that her body is functioning and reacting to the new NovoLog that were we switched to. 

Yesterday was Ellee's follow up appointment for her fractured wrist and Dr. P cleared her of all restrictions do to her gaining back full range of motion!  I can't explain how painful these last two weeks were for her to not be able to play on the slide or monkey bars!  After meeting with Dr. P, we went eye glass shopping and ordered her a new pair of glasses!  Then off to school.

After Ellee got off the bus, I took the girls to the grocery store to help decide what to make for dinner.  They didn't care about dinner but asked for a banana for a breakfast, but it quickly turned into a beg to have them for their afternoon snack.  While I was cooking dinner, they had their snack.  I did check Ellee before and she was around 100 (yay!).  Since she was on the low end, I ad it to her dinner shot.  The girls played after dinner while I cleaned the kitchen. When they started fighting and getting cranky, I decided it was bath time.  

When I declared bath time, Ellee actually fought me about it by throwing a fit and refusing.  It was unlike her which ticked me off so voices were raised and I told her she can go straight to bed.  I walked away to get the bath started for Dani and El followed us up. When I told her to get undressed and get in, she started whining that she wanted a drink.  I was about to lose it when she said she didn't want water but took a drink anyways and complained, but it dawned on me... HER SUGAR!  I was certain that she couldn't be low, but maybe she was really high.  When I came back into the bathroom with her meter, she was in the bathtub and obviously had no energy to do anything.  When her meter beeped with 35 on the screen, it was an instant panic.  We were at Daddy's house so I did a mad dash downstairs, frantically looked for something for her to ingest, then back up the stairs. It was a relief to see her coming back to life as she drank the juice.  At that point, the main goal is to keep her from going any lower and going unresponsive.

Lesson for Mom: check her when she starts getting mouthy, overly whinny, or defiant.  Lesson for Ellee: when you don't feel good like that, tell me that you don't feel good so that I can check your sugar.  We had a talk after she got her jammies on about how she felt and how that was an indication that her sugar wasn't right.  We've been a T1D family for 19 months and we all have so much that we still need to learn.