The Chocolate Lady

Thursday, December 13, 2007

Get me off this ride!

If anyone was planning on calling 911, fearing I had become tangled in Christmas lights....thanks, but Im ok. Ive been ensnarled alright, but not in a strand of lights, rather in medical mumbo-jumbo.

Little One has been sick for a while....she feels just fine, but her lab work has been crazy, her liver enlarged, and her very foul, diarrhea has been pale yellow, for 3 months.

We left the hospital 2 weeks ago, and had some tests pending when we were discharged. The results came in the day after we left, but since Im only her mom, I wasnt allowed to know the results. Ive played this game long enough to have a few tricks up my sleeve, so I told the specialist's nurse to fax the results to our primary doctor (other doctors are allowed to have the results, because they arent stupid like moms), then I called the pediatrician (who is much easier to get ahold of than a "specialist") and she gave me the results; "Her 5'NT is high, this confirms that there is damage to the liver, and she will need a biopsy."

The news wasnt a surprise, it was discussed in the hospital, that the next step would be a biopsy, to get more definitive info.

So, for the past 2 weeks, patiently waiting for today's visit with the gastorenterologist, Ive had this info.

This being the information age and all, Ive spent a pretty few minutes on the internet, googling her symptoms and lab results, hoping to get some sense of what is going on. Ive read the word, "biliary" 3654 times, and learned everything I was supposed to learn in 8th grade science about the liver. Ive also left 5 voicemails and 1 email for the "special" gastroenterologist. and never heard back.

I have this theory, this idea, that if someone knows her lab results, they should just call me. If there is a next step, a test, or something, than just tell me. Ive grown rather tired of the going-to-the-doctor carousel of life, for those that havent been on that ride, it goes something like this....

Call the doctor and try to make an appt.

If their computers arent down, you can find a time that you can come in

Be prepared to throw all other time committments out the window, because they will typically have only one available slot, which will be at the same time as your coveted hair appt, your other child's doctor appt, or some important sports event. But you'll take it, or wait another 2 months

On the day of the appt. You will spend the day preparing, making sure someone else picks one kid up from school, or taking them out of class early, and making other such arrangements as to minimize the impact on your families social calendar.

Your husband will take off from work

You will pack the diaper bag, with extra clothes, extra wipes and diapers, might as well put in a bunch of food for the kids, and you, because you never know how long you will be stuck at the doctors.

You will get all kids in the car, and the diaper bag, and some cash for the parking attendant, and your insurance card, and check book, and dont forget some toys to keep all kids occupied, or they will break out in a squabble at the doctors office.

Once through the traffic jams, and into the parking lot, you will circle around like a vulture for 20 minutes to get a spot.

Unpack everyone and everything, and trek over to the doctors office

Wait for 15 minutes to 3 hours, depending.

Pay the co-pay, because money grows on trees.



So, today's doctor told me just what we already knew. And then said, "this has been going on for 2 weeks, so Im not ready to do a biopsy yet, let's retest her in a week, and then come back in 3-4 weeks."

Those words feel as if someone has a hair dryer on "high heat" up your rear.

I gently reminded the special expert, that we actually had been on this ride for about 3.5 months, complete with lots of tests, doctors visits, specialist visits, and while I was not enthusiastic to do a liver biopsy (as he seemed to think), I also wasnt in the mood to stay on the carousel of ignorance. but Im just a mom.

So, when I got home, I left a message for the pediatrician to send the special gastro doctor all of the labs, etc. from the past few months, so that he can make decisions with all the info on his plate.

It seems to me, that this is being strung out like a strand of Christmas lights. Not really how I wanted to spend the holidays.


Taylor said...

Your blog is fantastic! I think it would make a terrific reality TV series, especially now that the writers strike is in full force. I love your commentary on "The Housewives Of Orange County". Your children are wonderful and they are so funny in the stories you tell of daily life!
Keep on blogging!!!

Katie said...

Wow, that entry sounds like ones I've written about myself tens of times. I do not know what makes a doctor think that anyone in their right mind who (or whose child) is in pain, discomfort or living abnormally, would want to wait 3-4 weeks for anything. It's mind boggling. Really.

I know you have a great team of doctors from your previous experiences, but have you tried contacting UCLA and seeing if they have a pediatric GI doctor who would take an appointment? They're good with anomalies and they tend to be aggressive in testing (not that you want aggressive per se, but you know what I mean)

Good luck and know that we're praying for the little one and for your sanity.

Anonymous said...

Oh, Kim. How dreadfully infuriating. Did you slap the specialist? Oh wait, did I write that instead of just think it? I have to agree with you about your comment on giving results on the phone instead of necessitating the schedule-juggling obscene routine of an unnecessary visit. Maybe the GI doc will be moved by getting all the lab results in from Elise's primary doctor. You know that Elise remains in my prayers.

Karen B.

Anonymous said...

I know one way to get the doctor to jump and get things going. Do you want me to go with you on your next visit, I have the perfect shirt to wear. That doctor must not know that moms really know their kids and know their stuff.

Rising Rainbow said...

I've been on that ride too. It is so darn frustrating! I hope this all works out ok.

jumpinginpuddles said...

i hope when you get the results you cna say what took you long adn smile at them with the look of make me wait again and ill sue ;)
i followed you from rising rainbows