Wednesday, January 27, 2010

A Good Response

Here is the email (below) I received this afternoon from a CDE at Children's -
This is probably the best response I have ever received from them so I am actually feeling pretty good right now.   I have asked before to be 'assigned' one educator for Nate but was told that it was not possible.  I am going to ask again at our Pump class.  

My mom and I have also decided to print out the blog post and send it to our endo and anyone else we can find at Children's Hospital.  

Thank you all for your huge outpouring of support both on this post and on FB.  I would truly be lost without all of my D-mom support, family support, friend support and the Diabetes Online Community (DOC).  Being the parent of a child with diabetes (CWD) is hard but having great support makes it so much more bearable.

Thank you from the bottom of my heart -

XOXOX  LH
Hi Laura,
I'm so sorry you are feeling like a barcode.  That is never a good feeling to have from your healthcare provider.  As far as insurance I feel the same way about mine.  As soon as we get the approval/non-approval we will definitely let you know.  I am curious to know which ketone strips are costing that much.  Are they the blood ketone test strips (Precision)?  In the meantime, we can always provide a prescription for urine ketone strips if you need them.
Thanks for sending Nathan's blood sugar log.  I wouldn't recommend any changes for his insulin right now.  I do notice the mid-morning high blood sugars, but unfortunately
with his type of insulin therapy there is one thing we can try.  When are you giving him his morning Humalog?  Are you giving it to him before he eats or after he eats?  If you are giving it to him before he eats, you can try giving it to him 15 minutes prior to him starting to eat and maybe the peak of the Humalog and food will match up closer and result in better mid-morning blood sugars.  If you are giving it to him after he eats, maybe working toward giving it to him prior to him eating.  On Lantus therapy or pump therapy we will be able to address them a bit better.  I feel on Lantus, kiddos don't have to wait for their background insulin to peak because its constant for 24 hours and therefore would be a better match in the mid-morning.  On pump therapy, we can program windows for different amounts of insulin at different times of the day to help match what his body needs. 
You are correct in thinking that Nathan does not need to attend the Pump it up class.  There is a part of the class he does need to participate in (the insertion site of the pump) but that does not have to be done on the same date.  There are a couple of options...
1.  you can have someone bring him either at 1230 or 430 on the day of the class and we can quickly do a site insertion before or after the class. 
2.  you can bring him in on another day or at your next appointment (which isn't until April) and an educator can do a quick site insertion. 
The purpose of the site insertion is to make sure he would tolerate something attached to him and get him used to what it would be like to be attached to a pump.  As long as we do that prior to you ordering your pump, it will be ok.  We just don't want parents to purchase an expensive gadget and then the child doesn't want to wear it. 
There is no book I would recommend for the pump it up class, but you can start looking at the 3 pump companies that we use and will have representatives there as well. 
Le me know if you have any other questions or concerns.  Thanks and have a great week!

Diabetes Educator

Tuesday, January 26, 2010

The Hard Stuff

I am having a hard D day today.

Emotional.
Hormones?  Maybe.
Diabetes?  Most likely!

It's hard!  It's hard!  It's hard!  It is SO hard!  No one told me it would be this hard!

We are having awful, terrible, sickening numbers.  All over the place - from 523 to 47.  I know it hurts.  It feels bad and it must be awful.  Why can't I just take it away?  I would trade places if I could.  Oh, how I wish I could take his place.

I'm frustrated.
Diabetes?  Yes.

Children's Hospital Dallas Endocrinology?  YES!

CIGNA?  Yes.

CAREMARK? Yes.

Here is what Nate looks like to Children's Hospital:

Sometimes they see him like this:
Here is what Nate looks like to CIGNA:
U35XXX911 05

And to CAREMARK:
173000062004


Here's what he is to me:
 
He's my son.  My precious, precious boy.  He is just a baby and he needs help.  I need help.  Our family needs help. Why must it be so difficult to help us?  He is not bar code,  a dx date, or an ID number.  He is my son!

I'm so frustrated with Children's and their Certified Diabetes Educators (CDE).  There are so many of them and none of them seem to care that Nate is 19-months old. Nobody there actually knows who Nathan James Houston is - to them he is just a bar code and a diagnosis date!  We get a message from one CDE one week and the very next week another CDE tells us we should never have done the very thing that the last CDE told us to do.  REALLY?  

You cannot treat a baby the same way you treat a child, a teenager or a young adult.  It doesn't work.  I cannot force Nate to eat, I cannot get him to pee on a test strip and I will not continue to let his bg be so out of control!  I cannot figure out his insulin requirements on my own and all I get is frustration when I ask for help.  Is it to much to ask for personal care these days?  Is Children's so big that they no longer care about the individual patient?  Is it really all about the bottom line?  

It is hard to have a sick child.  To know that he will never be better.  Diabetes will always be with him.  It is hard to be a parent of a sick child and to have to deal with the bureaucracy of insurance, hospital billing and RX limitations.  


If only we could humanize these companies - if they could only see our children as children and not bar codes and ID numbers.  

Nathan James Houston





 
  










This is my son, Nathan.  He has Type 1 Diabetes and he needs a little bit of help and a lot of compassion.  
Is that really so much to ask?

Today has been a hard D day.  I am hoping for a better tomorrow.






 ___________________________________________________

 Here is what Nate feels like when his bg is low -
Mild hypoglycemia
Symptoms of mild low blood sugar usually occur when blood sugar falls below 70 mg/dL and may include:
  • Nausea.
  • Extreme hunger.
  • Feeling nervous or jittery.
  • Cold, clammy, wet skin and/or excessive sweating not caused by exercise.
  • A rapid heartbeat (tachycardia).
  • Numbness or tingling of the fingertips or lips.
  • Trembling.
Moderate hypoglycemia
If blood sugar continues to fall, the nervous system will be affected. Symptoms usually occur when the blood sugar falls below 55 mg/dL and may include:
  • Mood changes, such as irritability, anxiety, restlessness, or anger.
  • Confusion, difficulty in thinking, or inability to concentrate.
  • Blurred vision, dizziness, or headache.
  • Weakness, lack of energy.
  • Poor coordination.
  • Difficulty walking or talking, such as staggering or slurred speech.
  • Fatigue, lethargy, or drowsiness.
Severe hypoglycemia
The symptoms of severe low blood sugar develop when blood sugar falls below 35 mg/dL to 40 mg/dL and may include:
  • Seizures or convulsions.
  • Loss of consciousness, coma.
  • Low body temperature (hypothermia).
Prolonged severe hypoglycemia can cause irreversible brain damage.
____________________________________________________

And when his bg is high -

  • abdominal pain
  • nausea and/or vomiting
  • fruity breath odor
  • rapid, deep breathing
  • confusion
  • unconsciousness ("diabetic coma")
  • DKA


Monday, January 25, 2010

Surgery, Recovery and Dirty Laundry

One week ago today I had my hysterectomy and I need to give a few shout-outs to my peeps for helping out!

First and foremost, my mom. She totally rocks. She took me to the hospital, stayed with me until I kicked her out Monday night and then took care of me at her house for the rest of the week.  She rocks!!  I didn't lift a finger.  All of my meals were prepared, clothes washed, and prescriptions filled.  She checked on me throughout the night to make sure I was pain free and medicated, not too warm or not too cold and she always heated the bathroom before I went in to shower. She even put lotion on my legs and feet.  Yep - she rocks!

My neighbor and friend, Sally doesn't read my blog but I think she still deserves a shout-out for taking Emma to and from school everyday.  Thank so much, Sally!!  What would I do without you?

Helen and Lisa both helped tremendously with the girls and the week went on without a hitch!

Jim told me several times while I was recovering how easy it was to take care of 3 kids.  Boy, that really got on my nerves!! 

The surgery went well, nothing unexpected, easy peasy!  I was feeling good after surgery and the nurse came in and gave me some more meds in my IV and so I really felt great all night.  I slept most of the night without interruption and later found out my doctor had given orders to drug me, drug me good and let me get some much needed rest.  I love him!  Tuesday I was still feeling pretty good until the pain meds went away but nothing I couldn't handle.  Wednesday night I had the worst headache of my life and thought I was going to die!!  The doctor thought it was from my ovaries being in shock from the surgery so my hormone levels were all wacky but I found out later that 2 of my aunts get terrible migraines from Hydrocodone and that was what I was taking at the time.  It was a very bad night but once we got rid of the headache, I stopped taking the Hydrocodone and all had been good.  I'm still taking some Tylenol or Aleve for pain and Tylenol PM at night but will probably be able to stop all meds by tomorrow. 

Here is a pic of me before surgery but apparently after some good drugs -



I stayed at my parents house until Friday night when Jim and the kids came over for dinner and then drove me home. I had such mixed emotions about leaving. On one hand I really missed Jim and the children but on the other hand I really didn't want to leave the nice, quiet, and peaceful recovery room at my parents house.

Now for the dirty laundry . . .

When I returned home I thought surely I would return  to a nice, clean house. After all, Jim had repeatedly told me how easy things were without me.  WRONG!!  I walked in to a disaster zone!  What the heck?  Had a bomb gone off over here?  A Tornado maybe?  It smelled terrible too.  Like cat pee - - - AND WE DON'T HAVE A CAT!!

To prove that I am not exaggerating here is the proof -

Sophie's Room/disaster Area



Emma's Room - not TOO bad

And now for the laundry . . .


My bathroom floor - NICE!



My bathtub with still soaking wet clothes on top.
Jim thought it would be fun for the kids to take a shower with their clothes on!
HAHA - Good Times.
I guess he didn't think it would be that fun to wash the clothes or maybe this was his version of actually doing the laundry.  I didn't ask!!

Not done yet . . .

closet laundry basket


laundry room

See what I mean??  How did 4 people dirty up SO many clothes??  I promise you I had ALL of the laundry done before I left.

Oh and for the cat urine smell??  Well, that was coming from Nate's room.  Apparently, Jim was using some old size 4 diapers he found in the garage and Nate's diaper leaked every night.  Nate has been in a size 5 for about 3 months now - hello!!  After I washed his sheets, lovies and blankets the house was starting to smell a bit more on the fresh side.

Husbands - gotta love 'em!  No wonder he thinks my job is SO easy.

That's all I've got for tonight - the Tylenol PM is kickin' in.

Good Night!



Wednesday, January 13, 2010

I can't find the MIDDLE

I am so frustrated I could scream!  No matter how hard we try, no matter what we do we just cannot seem to get Nate into those 'middle' numbers. 

Here's a good example -

January 9th
1:30 AM - 89 treated with 10g of carbs IOB
7:00 AM - 108 Yippeee
8:45 AM - 88 15g for snack time
10:30 AM - 55 AWESOME!
2:00 PM - 221 10g snack
4:00 PM - 63
6:30 PM - 79


 January 11th
1:00 AM - 99 (treated with 7 carbs - lots of IOB)
7:00 AM - 215
9:15 AM - 240
10:31 AM - 40 - Really?  WTH?
10:54 AM - 188 after 15g of carbs
1:51 PM - 225
3:00 PM - 222

Today
1:30 AM - 259
6:47 AM - 270
9:00 AM - 266
10:35 AM - 212
11:20 AM - 50

I'm too tired to go get the meter to get the numbers for the rest of the day! They were all in the 200's.

Nate is on a constant carbohydrate diet which is counting carbohydrates in portion sizes called carb choices and eating the same number of carb choices at each meal.  Currently, he eats 30-35 carbs at each meal and 15-20 carbs at snack.  Now obviously being a 1 year old if he doesn't want to eat 15 carbs at snack there is really not much I can do about it.  I am not going to force him to eat because then we both just end of crying!

 Nate's schedule goes a little something like this . . 

7a - Check BG, Eat 30-35g and Inject H3, N3
9a - Check BG, Eat 15-20g
11a - Check BG, Eat 30-35g, Correct if necessarry
12p - NAP
3p - Check BG, Eat 15-20g
5p - Check BG, Eat 30-35g, Inject H1
7p - Check BG, Eat 15-20g, Inject N0.5 (just reduced from N1 due to lows at night)
130a - Check BG and then depending on that # do it again 1t 2:20 or 3:00

I just want to be in the middle!  Why can't we get there?  What are we doing to him?  I feel so bad - all of these highs and lows make him feel so lousy and don't even get me started thinking about what they are doing to hit little bitty organs!!

I can't figure out what is peaking when and why and just wish today that I didn't have to do it!
Poor Nate.
Poor Me.
Poor everyone dealing with the D.

Tuesday, January 12, 2010

A Little Bit Longer


As Joanne mentioned in her post we attended the JDRF  Awards Dinner last week with the Cunha family.  We are so blessed to have another family in the area with a T1 child that we can hang out with and feel totally normal with them.  Not that we are not normal, it's just that having a T1 child does make you stand out a little bit when you have to do a BG check or insulin shot in public.  Anyway, they were kind enough to take some pictures during the evening and here they are . . .


Elise and Nate were the youngest T1 children on stage.  :-(




All of the children held up sings that read 'I Research!'
It was SO cute!!

We heard some encouraging information about research being sponsored by the JDRF so I am already gearing up for the 2010 Walk for a Cure!!  The researcher also played a song that has stuck with me since that evening.  I'm probably way behind the time but I've never been a huge Jonas Bros. fan - - I save my school girl crushes for Edward Cullen and Justin Timberlake!!  :-)

Anyway, the song was written by Nick Jonas who was dx T1 in 2005.  I thought I would post the words here because as a mom of a T1 it is so encouraging to see someone like Nick Jonas sing about his diagnosis and educate others about Type 1 Diabetes.  He appears to be a great role model for other Type 1 children.

 A Little Bit Longer - Jonas Brothers

Got the news today doctor said I had to stay
A little bit longer and I'll be fine
When I thought it'd all been done
When I thought it'd all been said
A little bit longer and I'll be fine

But you don't know what you got until it's gone
And you don't know what it's like to feel so low
And every time you smile, you laugh, you glow
You don't even know, know, know
You don't even know

All this time goes by, still no reason why
A little bit longer and I'll be fine
Waiting on a cure but none of them are sure
A little bit longer and I'll be fine
But you don't know what you got until it's gone

And you don't know what it's like to feel so low
And every time you smile, you laugh, you glow
You don't even know, know, know
You don't even know, know, know
You don't even know, know, know

But you don't know what you got until it's gone
And you don't know what it's like to feel so low, yeah
And every time you smile, you laugh, you glow
You don't even know, yeah, whoa, yeah
You don't even know

So I'll wait 'til kingdom come
All the highs and lows are gone
A little bit longer and I'll be fine
I'll be fine

Friday, January 8, 2010

The Low Down on the Down Low

I am having some problems - you know girlie problems! So, if you do not want to hear about them please stop reading now!

Here's the low down on my down low - - -
After Nate was born I wanted to make sure that we were totally and completely DONE.  We were totally and completely done after Sophie but then I got pregnant in the spring/summer of 2007.  Wow!  It was one of those little surprises that we didn't ask for but we quickly adjusted our plans and became super excited about baby #3! What would it be . . . another girl for the Houston family?  Maybe a boy this time?  Wow - what would we do with a boy?  My due date was January, 29, 2008.  Two of my close friends were pregnant at the same time and all 3 of us had due dates within days of one another.  It was SO exciting!

That summer Jim's family joined  us for a week of 4th of July festivities and we were so thrilled to have everyone in town at one time.  We were all down at our lake house which is about 90 miles from home (& civilization) when I started bleeding.  Nothing major at 1st so I didn't even worry.  But, by day 2 of bleeding Jim's step-mom drove me into town (about a 20 minutes drive) to the local hospital.  This town is so small that they had no one there to perform a sonogram but that didn't really matter because I really don't even think they had an operating sonogram machine.  They did the best they could but pretty much told me to ride it out at home.

I packed up the girls and drove myself home.  I needed to see for myself.  I went into to my OB's office for a sonogram and saw that sweet baby in my womb.  I've seen enough sonograms to know what I was looking at.  There he/she was sitting so still and so quiet.  No heartbeat.  None at all.  Heartbreaking to say the very least.  I had carried that sweet baby for 15 weeks of his/her life and it was devastating to have to say goodbye.

After a few weeks Jim and I discussed having another baby.  He said no, I said yes and by October we were pregnant again.  Baby Nate was born June 23rd, 2008.  What a joy and a blessing he has been in our life.  BUT, we really were done this time.  I needed to be sure that next time I got baby fever I was not able to easily seduce my husband and BLAM have #4.

My doctor told me about an easy procedure called Essure.  It was what seemed like a quick, easy and painless alternative to tubal ligation.  I should have known better.  The 1st attempt was unsuccessful.  They were unable to complete the procedure because of some swelling in my tubes.  It hurt like hell why would I want to try that again?  I have no idea but decided to try again about a month later and it was successful but it still hurt like hell!  I'm a little fuzzy on the dates but I think the procedure was in November and I was supposed to follow up in February with a with an Essure confirmation test.  The day the test was scheduled there was a terrible ice storm in the area and everything was closed!  I never rescheduled.

By March I was having terrible pelvic pain that no one would/could diagnose.  I had a CT scan but the radiologist had no idea what was causing the pain.  I went to my OB and he was clueless too.  I told them that it felt like something was stabbing me from the inside.  I told them that I was sure there was something wrong with the Essure procedure but I was assured there was no problem with the Essure.

In June I collapsed in pain while carrying Nate to bed.  I have had 3 children - that is a lot of contractions and they were nothing compared to this pain.  OH. MY. GOD!  Please take away the pain!  I called my parents and they drove me to the ER where they were sure that I had kidney stones.  They preformed a CT without contrast to confirm the diagnosis but it was not a kidney stone at all.  The radiologist had no idea what the problem was but he knew that there was a problem.  They decided to do another CT this time with contrast to try and figure our exactly what was going on.  After the 2nd CT they came in and told us that there was so much internal bleeding in my abdomen that they were going to have to get me checked in and do exploratory surgery to get it all figured out.  In the mean time I am still in pain - A LOT of pain.  I have a morphine drip that is doing absolutely nothing for the pain.  I seriously thought I was going to die.

The next morning my OB came in and we settled on a time for the surgery.  I was put at ease knowing we would soon figure it out and everything would be alright.  Just before surgery the pre-op nurse asked me if I would like to try to pee so that we could avoid a catheter.  Ummm - Yes!  So, I shuffled my way into the restroom and peed in the little Dixie cup like any catheter fearing woman would!

I had my gown on, little surgery socks keeping my feet nice and warm, my lovely hair net was in place and the anesthisiologist was ready to knock me out.  Oh yea, baby!  Momma is going to dreamland see you people later.  Just as I was about to close my eyes and let the euphoria of the medicine take over my doctor rushed in to tell me there was a change of plans.  No, no, no - PLEASE, no change of plans!!  The last nurse had done a pregnancy test on the urine in my little Dixie cup and it came out positive.  The medicine was kicking in, I was going under, and my eyes were rolling back into my head.  What?  What did he say?  Pregnant again?  Oh my!

When I woke up I was dazed and confused to say the least.  Unfortunately, it was an ectopic pregnancy and my fallopian tube had ruptured.  Hmmm.  Well, that explains the pain.  I was pretty upset about the loss of another baby but my grief to a back burner to my recovery.  It was amazingly painful.  I have a pretty high tolerance for pain and this was almost more than I could stand!

The grief did come and I dealt with it - am dealing with it.  It is a hard thing to understand.  I try not to question it but how can I not?  Why would God take a baby away from me the 1st time and now why give me another to only take it away too?  The last thing I remember saying before surgery is "I don't care what it is - make it go away!".  I know I was talking about the pain but those were hurtful words once I discovered what was causing the pain.

So, I survived June and headed into July.  I was still having pain and a lot of bleeding.  My doctor and I decided we would try the ablation to help with the pain and the bleeding.  Unfortunately, they both continued and with every cycle it was getting worse. Jim and I were really beginning to track the pain - when it started, when it ended, where I was in my cycle and rate the pain.  Then September came and Nate was diagnosed with Type 1 and everything related to this problem was set on the back burner.

Here we are now in January and this last week has been pure hell.  It was the most painful cycle yet.  So much pain that we decided to do a sonogram to make sure there were no other complications.  The pain is intense and so strong it brings me to tears.  It is all on the right side of my lower abdomen.  It is the Essure.  The metal coil is still in my right tube and it is causing almost as much pain as the ectopic.  It must come out!

The only way to get it out is to do a hysterectomy and at this point I am fine with that.  Take it all out, baby!  I want it gone.  My plan of action is to remove the uterus and the tubes but leave the ovaries.  I have no risk (that I know of) of ovarian cancer or breast cancer so I am leaving those little hormone producing babies in there.

I am both looking forward to and terrified of this surgery -
It is scheduled for January 18th @ 11a.

Wednesday, January 6, 2010

Fiddledee Ids

I am about 3 posts behind but I want to share this great site for ordering medical ID bracelets and accessories.

Fiddledee Ids


Look how stinkin' cute this charm is . . .


and this one . . .


We use this one for Nate (although he has already lost it so I am ordering another) . . .



This site was sent to me by my dear friend, Celeste Dunbar and I just love it! 
I get 15% off of my order for linking back to this site but I promise I would have posted this anyway. :-)

I am pretty strong in my belief that Nate must wear a medical bracelet because he cannot speak for himself just yet.  I would actually tattoo his forehead with the information if that were not such cruel and unusual punishment!  I'm a nervous Nelly anyway but when I asked about them in the hospital the doctor simply said that it would be a good idea for Nate to wear one in case there was ever a situation where Jim or I could not provide the life saving care or information for our precious son.  Enough said.

I have also contacted On-Star which is a service in our GM truck that provides emergency assistance in case of an accident and put his medical history on our account so that if we were in an accident they would relay the information to the paramedics.

Any other tips or suggestions for keeping our wee ones safe?

Friday, January 1, 2010

So much for that HAPPY New Year!

Day 1 - January 1st, 2010.  The ball just dropped.  I am so excited that I am still awake to see it.  Jim is beside me in bed - SNORING!  He didn't make it to midnight.  I am really surprised that I made it - I took 2 Tylenol PM and then a hot bath in hopes of some good sleep.  I roll over and start to drift away into dreamland - it was a good dream.  It was a dream where all children are disease free and all mommies get to sleep through the night - every night!  Oops - but then I hear it.  A little noise on the monitor that I keep right beside my pillow. What is that noise?  It wasn't so much a cry - just a noise.  Being the mom of a child with T1 - a noise is a noise is a noise and I must investigate.  Uhhhh - out of my dreamland and into reality. 

I trek across the house to Nate's room where I am hearing the strange noise and some labored breathing.  Oh no - this is not good.  I grab the bg monitor and check him immediately.  He is so sleepy - too sleepy - he won't open his eyes.  I move closer to the door to be closer to the hallway light so that I can see the reading.  WTH?  40?  Does it really say 40?  Why is he making these strange sounds and yet he won't open his eyes?  I am kind of freaking out.  I carried him to the kitchen - banana?  No - he wouldn't open his mouth.  Juice - yep!  He drank all 15 carbs of the juice and then went into bed with me for further evaluation. 

He slept on my chest for most of the night while I lay there holding him tight.  I stayed awake most of the night holding him, checking him, snacking him, holding him and checking him. He hovered around 69/70 all damn night.  Finally around 5:30 AM I broke out the big guns!!  M&Ms - not even the minis.  He got a (Halloween Size) bag of regular M&Ms and I finally just collapsed.  I slept until about 7:30 when Nate woke up again. I checked him at 115 handed him off to Jim and headed back to the bedroom where I stayed fast asleep until 11:30 this morning.

Ok - so this is not exactly how I wanted to start my new year but such is the life of a T1 mom.  Just a friendly reminder from 2010 -  didn't want me to get all lazy and happy forgetting that T1 mommies don't get to sleep.  Even when they take Tylenol PM - Boo!!