Pam Halter
Writing Editing Serving

Parents Blog

Vacation and Other Fun Stuff
7/3/2013 5:46:28 AM 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

The Power of Doritos
5/7/2018 12:00:00 PM  by: pam

Yay For Friends!
1/9/2018 3:15:00 PM  by: pam

Show You!
9/11/2017 12:58:00 PM  by: pam

Happy? 26th Birthday, Anna
5/15/2017 7:37:00 AM  by: pam

Re-grouping
3/14/2017 8:10:00 AM  by: pam

We can relate!
9/1/2016 8:00:00 AM  by: pam

A Little Fall Fun
10/18/2015 8:04:11 AM  by: pam

Going Commando
10/5/2015 6:37:04 PM  by: pam

So Behind
9/22/2015 8:42:33 AM  by: pam

Stares and Storytime
4/12/2015 7:12:46 AM  by: pam

Big Big Changes
3/27/2015 9:12:27 AM  by: pam

Blog Post on Autism
9/22/2014 7:30:14 AM  by: pam

The Power of Pets
9/12/2014 4:21:44 PM  by: pam

Depression's Demands
8/15/2014 2:19:26 PM  by: pam

Do We or Don't We?
8/4/2014 12:00:01 AM  by: pam

Falling Down
6/22/2014 1:36:52 PM  by: pam

Research Study
5/23/2014 12:48:08 PM  by: pam

Who goes? Who stays?
5/19/2014 12:11:51 PM  by: pam

Being Thankful
4/25/2014 7:37:26 AM  by: pam

Excellent Article
4/7/2014 7:03:09 AM  by: pam

Jury Duty and Holland
3/27/2014 7:36:35 AM  by: pam

I Confess
3/17/2014 8:11:55 AM  by: pam

The Dreaded Medication Change
3/4/2014 12:49:56 PM  by: pam

Keeping It Together - part seven
2/24/2014 1:03:18 PM  by: pam

Keeping it Together - part six
2/10/2014 8:20:16 AM  by: pam

A Milestone Day
2/3/2014 8:13:17 AM  by: pam

Keeping it together - part five
1/21/2014 6:43:18 AM  by: pam

Keeping It Together - part four
1/3/2014 7:56:02 AM  by: pam

Keeping it Together - part three
12/16/2013 7:34:46 AM  by: pam

Keeping it Together - part two
12/9/2013 6:30:25 AM  by: pam

Keeping it Together - part one
12/5/2013 8:00:03 AM  by: pam

Catching Up
11/13/2013 8:22:00 AM  by: pam

The Perfect House
10/25/2013 8:06:56 AM  by: pam

Another Mom in the Mix
10/7/2013 3:11:58 PM  by: pam

Grieving the Loss
9/24/2013 8:39:13 AM  by: pam

Great article
9/11/2013 1:06:06 PM  by: pam

This and That
9/9/2013 4:09:18 PM  by: pam

Fun in the ER
8/30/2013 9:17:32 AM  by: pam

Bless me, Anna!
8/14/2013 1:51:41 PM  by: pam

Talk to me, Anna!
8/8/2013 5:04:30 PM  by: pam

God's Will
7/30/2013 3:13:08 PM  by: pam

Update on Anna's bloodwork
7/24/2013 6:31:05 AM  by: pam

Stirring the Cesspool
7/11/2013 6:27:11 AM  by: pam

Vacation and Other Fun Stuff
7/3/2013 5:46:28 AM  by: pam

A Day at the Beach
6/17/2013 8:05:05 AM  by: pam

Anna's Surgery Experience
6/5/2013 12:03:49 PM  by: pam

No Place For Anna
5/26/2013 8:27:52 AM  by: pam

Painful Gifts
5/21/2013 8:56:57 AM  by: pam

Happy 22nd Birthday, Anna!
5/15/2013 6:48:55 AM  by: pam

A Rough Day
5/6/2013 6:18:44 AM  by: pam

Things I've Learned - part five
4/30/2013 8:02:08 AM  by: pam

Things I've Learned - part four
4/22/2013 6:51:41 AM  by: pam

Things I've Learned - part three
4/15/2013 6:14:06 AM  by: pam

Things I've Learned - part two
4/9/2013 7:40:11 AM  by: pam

Interview with Terri Groh
4/5/2013 5:44:08 AM  by: pam

Things I've Learned - part one
4/3/2013 7:55:42 AM  by: pam

The Things People Say - part eight
3/27/2013 6:06:08 AM  by: pam

Comparisons
3/18/2013 8:06:43 AM  by: pam

Why Is It A Blessing?
3/11/2013 6:24:04 AM  by: pam

Tim's Place
3/8/2013 11:57:02 AM  by: pam

New Medication Worries
3/5/2013 6:38:36 AM  by: pam

A Night Out for Anna
2/25/2013 11:29:44 AM  by: pam

Play it again, Sam
2/20/2013 5:47:32 AM  by: pam

Happy Birthday
2/15/2013 5:32:13 AM  by: pam

The Anna Bowl
2/4/2013 8:01:33 AM  by: pam

The Queen of Babble-on
1/30/2013 12:45:36 PM  by: pam

Really, people?
1/25/2013 7:36:11 AM  by: pam

Cold Feet
1/23/2013 7:55:46 AM  by: pam

Hearing God
1/15/2013 6:58:57 AM  by: pam

Running Away
1/10/2013 11:19:00 AM  by: pam

Post-Christmas-Reentry-Syndrome
1/4/2013 6:49:36 AM  by: pam

Emmanuel, God With Us
12/17/2012 6:51:08 AM  by: pam

Take Heart
12/7/2012 4:42:07 AM  by: pam

Jumping in the Leaves
11/27/2012 5:56:16 AM  by: pam

Being Thankful
11/19/2012 7:02:07 AM  by: pam

Patience and Love and Wretchedness
11/13/2012 7:38:47 AM  by: pam

A Typical Halter Vacation
11/8/2012 8:35:45 AM  by: pam

Is This Really My Life?
11/1/2012 5:21:04 AM  by: pam

Frankenstorm
10/27/2012 4:22:45 PM  by: pam

A Small Victory at Anna's Program
10/24/2012 7:21:36 AM  by: pam

Update on the problem at Anna's program
10/22/2012 8:23:51 AM  by: pam

The Fight Goes On
10/19/2012 4:55:06 AM  by: pam

Fighting the Good Fight
10/18/2012 7:01:44 AM  by: pam

Sit down, Anna
10/16/2012 6:44:47 AM  by: pam

The Things People Say - conclusion
10/15/2012 8:32:45 AM  by: pam

The Cloaking Device
10/12/2012 6:22:27 AM  by: pam

The Things People Say - part seven
10/11/2012 5:56:56 AM  by: pam

The Things People Say - part six
10/10/2012 5:35:53 AM  by: pam

The Things People Say - part five
10/9/2012 6:59:06 AM  by: pam

The Things People Say - part four
10/4/2012 6:00:52 AM  by: pam

The Things People Say - part three
10/3/2012 6:09:22 AM  by: pam

The Things People Say - part two
10/2/2012 5:29:13 AM  by: pam

The Things People Say - part one
10/1/2012 7:52:27 AM  by: pam

Godzilla Lives at my House
9/27/2012 6:58:41 AM  by: pam

The Early Bird Gets Eaten
9/26/2012 5:22:30 AM  by: pam

Over and Over Again
9/25/2012 5:15:50 AM  by: pam

What Good Are Seizures?
9/21/2012 11:48:29 AM  by: pam

Why Me?
9/20/2012 8:37:32 AM  by: pam

The Rest of my Life?
9/19/2012 5:47:36 AM  by: pam

Feelings
9/18/2012 1:23:56 PM  by: Pam