Vacation and Other Fun Stuff

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!

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