Wednesday, October 3, 2012

vent

In true vent form I'm just going to type and not edit or structure.

Pink has been sick.  She has been to school two days in the last 2 1/2 weeks.  She has terrible stomach problems, pain-ish and nausea, in the morning so that she can't get out of bed.  It gradually gets better until she can eat her first BRAT food around 1:00-2:00pm and then by evening more normal food.  Then it starts all over again in the morning.  She always has had an icky morning tummy.  She prefers not to eat right when she gets up.  The last half of the school year last year is when it started to worsen but we could still get some food in her.  The summer she slept in and didn't usually eat until 10:00 or 11:00am so no problems.  This year it has been even harder to get food into her before school and then 2 1/2 weeks ago it was so bad she thought she was going to vomit and we are still in that state. 

Her BGs have been pretty good.  In the beginning I bolused 50% for food because I was afraid she was going to start vomiting.  She never did vomit but the 50% ended up perfect.  So I thought she really did have a tummy bug in the beginning.  A couple lowish numbers.  Then back to normal bolusing, Then high numbers with the start of her period and now today we are underbolusing again.  A little weirdness but nothing huge.  And no ketones.

We've been to the doctor twice, I've talked to them several more times, I've talked to the endo team, there's been two bloods draws (poor baby).  The doctor found a UTI.   All other blood work normal.  The second visit I asked for a Celiac test.  Thyroid normal.  The first antibiotics we had trouble staying on schedule because they would make her gag and make her tummy worse.  We switched antibiotics and have been on schedule with those.  The doc wants to wait until those are complete.  Two different antinausea.  Antacid.  He said the type of bacteria found has been known to do funny things in PWDs.  I forgot to write down the name of it - stupid.  The endo team didn't have much to offer at this point.

Her abdomen is not tender.  She passed the office neuro exam.  No fever. She has an occasional headache.  She doesn't sleep well.  I've questioned her extensively about happenings at school in many different manners: encouraging, pleading, pressuring.  She is the daughter that shares nothing but I do believe it did not start out because of something at school.  However, I do believe anxiety is playing a part it in now.  I've gotten some referrals for counselors - if I can get her there.  That is new territory for me.  Probably would help me too.  I've been in contact with the teachers and principle and she has been doing a pretty darn good job keeping up with most of her homework. 

I'm so frustrated.  And exhausted.  And sad.  I've burned almost all my vacation time.  I'm the primary financial support of the household and sole D caretaker.  The health insurance carrier.  It makes me anxious to not be with her when she is not well.  I've had to take to leaving her so I can work a few hours a day.  I insist she stay awake.  She has her meter, water, glucose and the phone on her nightstand and I call about every hour.

Today was not a good day.  Not my finest parenting moment.  I got (forced) her as far as the parking lot of the school and she literally had her hand over her mouth saying "I'm going to throw up."  I then proceeded to pressure her really, really hard.  I talked to her about how at this point she can't wait until her stomach is perfect.  She has to push through it.  It will be hard but she just has to get into the school building.  Threw in some guilt about my job and how I'm going to be in trouble with the school (a lie).  I kept us sitting in the parking lot for 45 minutes.  She basically only had P.E. left for the day and what is the point of that.  So I dropped her off at home, both of us pissy and huffy, and I went to work to get in a little bit of time in hopes of not losing my job.  Those are all things I've talked about before but in my frustration today (and a little bit of panic) I just laid into her.

We made up a little on the phone.  I apologized.  Tonight I talked calmly and supportively.  We both were both so sad tonight.  We made a solid plan to try to get to school tomorrow again.  I assured her that the school is completely supportive.  Which they are - they are amazing!  The school counselor called me to say I might receive one of those letters about a meeting but not to worry about it.  They know the situation, how diabetes can complicate illnesses and have seen me coming in for homework.  It was actually a supportive call and not one of those warning calls veiled in supportiveness.  And I met the the best teacher in the school district.  He surpassed his reputation.  We talked 10 seconds about homework and fell into a giddy, gushing conversation about To Kill a Mockingbird.  Just like that.  Love!  His eyes sparkled when he talked about Pink and how she is reading it.  Then he CALLED me a couple days later asking if he could STOP BY to drop off more material for her homework.  Huh?  She was home alone so I told him he could put it in the mailbox.  And then he slipped in there he was shopping and saw a fundraiser for JDRF and said to himself "Oh, I better buy one of those shoes for Pink!"  <baaawwl>

Too much sadness.  Then I feel guilty about being sad because others have it worse.  Then I think it's ok to to be sad and then back...and forth and back.

I just want her to feel better and be happy. 

We can do this. 

 damn, that was long, sorry.


8 comments:

  1. It sounds like a rotten situation for everyone involved. I hope the docs can figure out what's at the bottom of this quickly.

    Hang in there, Laura. You can do this.

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    1. Thanks so much for the support. Things are looking up!

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  2. Hi Laura - just stumbled across your blog and have been enjoying getting to know you and your girls.

    So sorry you guys are going through this rough time. Hopefully they figure it out soon.

    Does your state offer any form of Paid Family Leave that you can use instead of burning sick/vacation time?

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    1. Hi Krissy. Thanks so much. I'm not familiar with state leave. I'll have to look into that. I've only used FMLA and short term thru work. Things are better now so hoping they continue.

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  3. "It was actually a supportive call and not one of those warning calls veiled in supportiveness." <---a rare gem of a call! I feel so glad and grateful that your school recognizes that you are a fantastic mom.

    I'm glad things are getting better now and look forward to reading more. I want to send you a care package: a case of peanut butter M&Ms, a case of syringes, and one certificate for a lifetime of excellent health care. Or better yet--one certificate for excellent health.

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    1. I'm so grateful for our school too, believe me! I'll take the excellent health please.

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  4. Sorry that I'm on a comment binge but I've had a bunch of your posts sitting in my reader for when I could comment.

    I have this same stomach trouble. I've done all the testing you describe. The doctors have never been able to find anything. It is so frustrating. One guy finally called it "diabetic stomach" - not celiac - "diabetic stomach". That's NOT A THING!!

    Anyway, I will have a bad bout for a few weeks and then it won't happen again for a few months. I hope you guys can find a better answer!

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    1. Oh Sara, sorry you have crappy tummy too! I'm going to tell Pink. I think she thinks we don't believe her and I do! We haven't made much more progress. She still has icky mornings but she powers through them. Right now we are focusing on getting plenty of sleep and trying to stay on a sleep schedule. Kinda hard for a night owl though. I see she has even made changes herself in her bedtime routine to help get to sleep. Love!

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