Pam Halter
Writing Editing Serving

Parents Blog

Vacation and Other Fun Stuff
Wednesday, July 3, 2013 by pam

Vacation with special needs kids is not really vacation in the true sense of the word. We can't do most things families enjoy while away. This is good and bad. We miss out on lots of activities, but we rest. Most of the time. But remember, we have Anna, who doesn't like to sleep much, so I guess I don’t get any more rest than when we're at home. It is, however, a nice change of scenery.

We went to our timeshare in Williamsburg, VA, last week while Anna was off from her program. Daryl was directing a play for summer theatre and had dress rehearsals, so my respite care workers and great friends, Sue and Jim, and I took Anna for five days. We travel well together and if Anna will allow it, they're a great help. It was a typical vacation with Anna. She had a UTI and took me to the bathroom EVERY 20 MINUTES.  Yep, every 20 minutes for five days. She felt miserable. She didn’t want to eat. She didn't want to sleep. She wandered the unit. She sat on the toilet. We managed to get her to the pool one afternoon and out shopping one morning. But she didn't feel good and just wanted to be home.

I called the doc and meds were waiting for us when we got home. She feels better now, but is still having trouble going. Part of that is the UTI and part is her newest anti-seizure medication, potiga.

We had a check up with the neurologist, Dr. Lisa, on Monday. Since the potiga isn't really making that much of a difference and because one of the side effects is that Anna can't empty her bladder, we're weaning off it. This is probably the cause of the UTI.

But the fun isn't over. Before the surgery to replace the battery in her VNS, we did routine blood work and a urine analysis. At Anna's post op check up, I asked about the test results because I was thinking she had a UTI then. The neurosurgeon said he didn't really know and showed me the papers, like I would know what I was looking at. Anyway, I looked them over and saw something that said "Positive for bilirubin." Now, I know bilirubin levels are what's tested in newborns when checking for jaundice. Anna had it. And I know it's not supposed to be there, so we sent off the results to my family doc and I followed up with a phone call.

No response.

So, I called Dr.  Lisa, who was on vacation (of course) and her assistant mailed us papers for more blood work to test liver function. This was all before we went to Williamsburg (we did the blood work yesterday.)  So, at the check up on Monday with Dr. Lisa, we talked about this. She said if it's the liver, it's probably the felbatol, which is an anti-seizure medication that actually does help. If it's not the liver, then it could be gallstones.

Oh, joy.

Imagine Anna having to pass gallstones.

And really, what if I hadn't seen the test results? What if I hadn't noticed she tested positive for bilirubin? When the heck were they going to do something about it? I hate it when I have to do the doctor's job, but what else can a mom do? It doesn't make me that confident in my doctors, let me tell you. Sheesh.

So, we're waiting test results so we know what to do next. It's all in our normal day to day living with Anna, but let me tell ya, it's exhausting.


Comments

pam From At 7/18/2013 6:41:35 AM

No, no results yet. I've left a message and will do so AGAIN. As if I don't have enough to deal with. Don't tell me stuff and then ignore the test results!! SIGH.

jenny From PA At 7/17/2013 9:52:46 PM

Any news on Anna's tests? I COMPLETELY agree about Doctors! I am SICK of doing their job and them getting paid for it!! I could be a Dr.! Seizures, migraines, narcolepsy, cataplexy, neuro cardiogenic syncope, adhd, ocd, anxiety disorders, and all the meds to go with them!

Previous Posts

Good from Covid?
pam

5/18/2023

Encouragement from a fellow special mama
pam

7/31/2020

A Sister's Love
pam

5/16/2019

Medical Moms
pam

1/26/2019

The Power of Doritos
pam

5/7/2018

Yay For Friends!
pam

1/9/2018

Show You!
pam

9/11/2017

Happy? 26th Birthday, Anna
pam

5/15/2017

Re-grouping
pam

3/14/2017

We can relate!
pam

9/1/2016

A Little Fall Fun
pam

10/18/2015

Going Commando
pam

10/5/2015

So Behind
pam

9/22/2015

Stares and Storytime
pam

4/12/2015

Big Big Changes
pam

3/27/2015

Blog Post on Autism
pam

9/22/2014

The Power of Pets
pam

9/12/2014

Depression's Demands
pam

8/15/2014

Do We or Don't We?
pam

8/4/2014

Falling Down
pam

6/22/2014

Research Study
pam

5/23/2014

Who goes? Who stays?
pam

5/19/2014

Being Thankful
pam

4/25/2014

Excellent Article
pam

4/7/2014

Jury Duty and Holland
pam

3/27/2014

I Confess
pam

3/17/2014

The Dreaded Medication Change
pam

3/4/2014

Keeping It Together - part seven
pam

2/24/2014

Keeping it Together - part six
pam

2/10/2014

A Milestone Day
pam

2/3/2014

Keeping it together - part five
pam

1/21/2014

Keeping It Together - part four
pam

1/3/2014

Keeping it Together - part three
pam

12/16/2013

Keeping it Together - part two
pam

12/9/2013

Keeping it Together - part one
pam

12/5/2013

Catching Up
pam

11/13/2013

The Perfect House
pam

10/25/2013

Another Mom in the Mix
pam

10/7/2013

Grieving the Loss
pam

9/24/2013

Great article
pam

9/11/2013

This and That
pam

9/9/2013

Fun in the ER
pam

8/30/2013

Bless me, Anna!
pam

8/14/2013

Talk to me, Anna!
pam

8/8/2013

God's Will
pam

7/30/2013

Update on Anna's bloodwork
pam

7/24/2013

Stirring the Cesspool
pam

7/11/2013

Vacation and Other Fun Stuff
pam

7/3/2013

A Day at the Beach
pam

6/17/2013

Anna's Surgery Experience
pam

6/5/2013

No Place For Anna
pam

5/26/2013

Painful Gifts
pam

5/21/2013

Happy 22nd Birthday, Anna!
pam

5/15/2013

A Rough Day
pam

5/6/2013

Things I've Learned - part five
pam

4/30/2013

Things I've Learned - part four
pam

4/22/2013

Things I've Learned - part three
pam

4/15/2013

Things I've Learned - part two
pam

4/9/2013

Interview with Terri Groh
pam

4/5/2013

Things I've Learned - part one
pam

4/3/2013

The Things People Say - part eight
pam

3/27/2013

Comparisons
pam

3/18/2013

Why Is It A Blessing?
pam

3/11/2013

Tim's Place
pam

3/8/2013

New Medication Worries
pam

3/5/2013

A Night Out for Anna
pam

2/25/2013

Play it again, Sam
pam

2/20/2013

Happy Birthday
pam

2/15/2013

The Anna Bowl
pam

2/4/2013

The Queen of Babble-on
pam

1/30/2013

Really, people?
pam

1/25/2013

Cold Feet
pam

1/23/2013

Hearing God
pam

1/15/2013

Running Away
pam

1/10/2013

Post-Christmas-Reentry-Syndrome
pam

1/4/2013

Emmanuel, God With Us
pam

12/17/2012

Take Heart
pam

12/7/2012

Jumping in the Leaves
pam

11/27/2012

Being Thankful
pam

11/19/2012

Patience and Love and Wretchedness
pam

11/13/2012

A Typical Halter Vacation
pam

11/8/2012

Is This Really My Life?
pam

11/1/2012

Frankenstorm
pam

10/27/2012

A Small Victory at Anna's Program
pam

10/24/2012

Update on the problem at Anna's program
pam

10/22/2012

The Fight Goes On
pam

10/19/2012

Fighting the Good Fight
pam

10/18/2012

Sit down, Anna
pam

10/16/2012

The Things People Say - conclusion
pam

10/15/2012

The Cloaking Device
pam

10/12/2012

The Things People Say - part seven
pam

10/11/2012

The Things People Say - part six
pam

10/10/2012

The Things People Say - part five
pam

10/9/2012

The Things People Say - part four
pam

10/4/2012

The Things People Say - part three
pam

10/3/2012

The Things People Say - part two
pam

10/2/2012

The Things People Say - part one
pam

10/1/2012

Godzilla Lives at my House
pam

9/27/2012

The Early Bird Gets Eaten
pam

9/26/2012

Over and Over Again
pam

9/25/2012

What Good Are Seizures?
pam

9/21/2012

Why Me?
pam

9/20/2012

The Rest of my Life?
pam

9/19/2012

Feelings
Pam

9/18/2012