Olivia's Medical Update!

So now that we have moved to Melbourne we have had to get a whole new team of doctors to oversee Olivia. In Sydney we had kind of reached a stand-still where everything that had been found had been dealt with and no one could explain why Olivia wasn't growing but assured us that she would be monitored. In this sense moving to Melbourne was a good thing. New doctors and fresh ideas.  Since we are still in the same country, all her records are on a national data base so it was not too difficult to get a team to pick up where Sydney had left off.

Our new GP is very proactive. After meeting with her once she got on the phone and sorted out a team of specialists she wanted Olivia to work with. She said, rather than meet independently with a pediatric urologist, gastroenterologist, endocrinologist, dietitian and pediatrician that we should have one BIG meeting with all these guys together. I thought 'well, that would save me a lot of time'....and also 'that is going to be one HUGE consultation fee' :-)

I was passed onto a Pediatrician who was supposed to pick the team.  It was a good meeting but first he wanted to make sure we had all the players we needed. So we were sent to the hospital for a day to do a series of test. 

The first test was to explore the possibility of Olivia having Cystic Fibrosis (CF). This is done with a 'sweat test' basically they put electro things in your elbo pits to make you sweat. They wipe your arm with different clothes, chemicals etc... and then send the clothes off to the lab to be looked at. If you are too 'salty' then you probably have it and you do more tests to confirm.

I could talk for a whole hour about the doctors hypothesis about Olivia having CF but I don't think she has it as she has NEVER had a lung infection and because it is tested for at birth in America (where she was born)...so you would think I would have found this out 8 years ago if it was CF right? Anyway, I am not going to type out all the dialogue between me and the Dr.'s unless I get a positive test result back. Keep you posted--but seriously don't worry yourselves.

 They make you bundle up to make you sweat as much as possible during the test.

 Comics and clown doctors make a hospital visit somewhat fun right?

 Here are the probes stimulating her sweat glands

The second test was a VCUG (to see if Olivia still has any wee refluxing up from her bladder to her kidneys). 

The third test is a renal scan to see how much urine she voids when she wees and to examine any scarring in her bladder.

The fourth test was to test for something called 'slow transit time'  The gastroenterologist wants to see if the constipation is an effect of something bigger or just the cause. You have to eat purple corn and then time how long it takes to come out the other end. :-) If it take too long, then your body takes out too much water when your food is in your intestines and then it gets stuck. There is nothing you can do about this, your body just takes longer to digest food that other people's bodies. So if you know this about yourself, you compensate by drinking more fluids, fruits, exercising and taking a stool softener for life!

The last test was something we have been working on for a few weeks (a food intake chart). We have to write down what Olivia eats, what time she eats it, how she feels afterwards and how her poo looks afterwards :-)  I guess the dietitian is looking for a pattern? The only pattern we have so far is that when Olivia eats really fatty foods, her poo is very smelly...so I would deduct that fat is bad (brilliant I know!)

Anyway, we went to the brand new hospital called the Melbourne Children's Hospital, and I have to say it was a fantastic experience for a few reasons. (1) look how cool the inside is? Yes, that is a real aquarium!

Check out this it is a flat, touch screen video game! Can't beat that!

Secondly, unlike every other VCUG we have had done, Melbourne has got it down.

To sum up:

WORST Experience--VCUG in America (fairfax hospital pediatric wing--HAHAHAHA)- not sedated, couldn't get the catheter in (tried 4 times) had to hold Olivia down (15 months)--she was screaming, in pain and wouldn't hold still to take the pictures. couldn't talk her into weeing on the table etc....

BETTER Experience- VCUG in Oxford, England (Oxford Children's hospital) & Sydney, Australia (- sedated, she was asleep for the VCUG. Catheter went in, took pictures and woke her up. Sore afterwards and a lengthy procedure with putting them down and waking them up.

BEST experience- VCUG in Melbourne, Australia. Inserted radioactive material through an IV (no catheter needed) took pix of her back, then brought her over to a toilet that had an x-ray devise on the back of the toilet. She wee'd and they took pix of her back. We walked out 5 minutes later. COOL HU!

Now if you think medicine has changed since our worst experience at 15 months to our best experience at 8 years you are wrong. My friend in the USA just had her daughter go through our worst experience 2 months ago (and her kids is fully potty trained). I think Melbourne has cool x-ray machines attached to children's toilets, which save EVERYONE a lot of hassle, when it comes to VCUG's!

To make the experience even better, we finally got the long awaited news that Olivia's renal functions are completely corrected! She is normal, all better, has no more problems with her kidneys; and while she does have some permanent scarring she could not be healthier!

After Olivia's operation 2 years ago (this March) her urologist refused to do a VCUG to check if the operation had in fact corrected Olivia's reflux. He said this because he was afraid it would put too much pressure on everything that had been operated on and he didn't want to mess anything up. So we waited, a year and he asked to wait another year since her recovery was so bad. Every time Olivia said her tummy hurt I wondered if it was kidney related or not. Now I know it is NOT and that the operation was a complete success! I could not be happier.

Overall I am going into the relax mode. While in the hospital I looked around and saw really really sick kids. We were not one of them. In fact Olivia was skipping off to her appointments.  So anyway, the rest of the results to come--keep you posted!