an odd ultrasound

Ricky having his ultrasound
Originally uploaded by Beckerbuns

For quite a while now, Ricky's gastroenterologist has wanted him to have an abdominal ultrasound to rule out other issues that might be causing the pain he's been having for a couple of years now. We've always figured it was bowel issues, common in CF, since he had such a hard time with bowel obstructions during his last two hospitalizations.

In recent months, CCS and Medi-Cal have decided that the gastroenterologist, who has seen Ricky since he was a neonate in the NICU, is no longer someone for whom they will pay for services rendered. So I had to turn to the CF doc (lung doctor) to get Ricky's ultrasound ordered. Today he had it, at Packard.

First off... The tech asked if anyone had ever mentioned Ricky having situs inversus. I said no, I didn't think so -- what was that? He said it was where the organs are reversed. He said that Ricky's liver seemed to be in a different place. I quickly Googled the term on my phone and puzzled over it.

Then the tech asked if anyone had ever told me anything about Ricky having issues with his pancreas. I said that other than pancreatic insufficiency, no.

I was asked about whether he'd had surgeries. I mentioned the several centimeters of small bowel that were removed when he was a few hours old. I said as far as I know, nothing else had been removed then.

Then things got really weird. He couldn't find Ricky's gallbladder. He had him turn this way and that, hold his breath. No gallbladder. And as it turns out... No right kidney either. What. The. Heck?

He called in another ultrasound technician. She couldn't find either organ either, after a lot of looking. Then the two of them brought in a radiologist. Even with his help they couldn't find the right kidney or the gallbladder. Curiouser and curiouser.

The exam was wrapped up with ultrasound tech #1 saying that the report would be completed soon. He mentioned that other imaging studies would probably be ordered.

When we got home I left a message on the CF nurse's voicemail. I talked about the weird ultrasound and asked that she call me as soon as the results were received, since I figured it would be pretty soon with how weird things were. I got a call back shortly thereafter from the patient care coordinator. He let me know that they felt Ricky needed to be referred to a gastroenterologist, I'm assuming one there at LPCH. So... results of the ultrasound? We don't have them yet.

How does someone lose their kidney? And gallbladder? He's had so many x-rays and at least one other ultrasound and CTs and... No one noticed this before? Or the strange liver placement or pancreatic issue? I'm so confused.

Hopefully more answers are forthcoming this week.

UPDATE:  I heard back from the gastroenterologist eventually.  She said that, in fact, both kidneys were visible, but the right kidney was obscured by bowel gas (which was odd, since he hadn't eaten since dinner the night before).  The gallbladder was there, but greatly compressed.  The gastroenterologist said this could be indicative of a number of problems, and suggested that Ricky have an abdominal MRI.  This will have to wait til we see the new gastroenterologist at LPCH.  We're waiting for that to happen... Hopefully soon.

MRI today

Ricky had his MRI today. He had a dizzy spell/fatigue episode right before it but was okay by the time they did it. They accessed his port for the contrast that was going to run through while the MRI was done.

He got to watch "Little Vampires" in goggles while they did the MRI. Funny thing, the MRI tech had me take off my watch and glasses and remove my ATM card from my pocket before we went into the MRI room. She didn't notice my barette! Whenever I leaned over to talk to Ricky, my hair lifted up into the air. It felt like I was brushing my head on something. It was, in fact, the MRI machine trying to steal my barette! Hehe!

Once he was settled, I went out to the waiting room and my friend Kat and I went to get lunch while waiting. (Poor Ricky hadn't been allowed to eat since 9 -- poor kid! We took him for food afterward.)

Ricky did fine with the MRI. I'm not sure when we'll get results but we do see the endocrinologist next week and might find something out from him or her about what's going on with the pituitary gland (MRI was of the brain and pituitary gland, along with an additional MRI of the brain with contrast).

I'm proud of my boy. I hope this test offers some answers. Hopefully something that we can do something about!!

On the way home, we stopped for some geocaches and were visited by some friendly, curious, and affectionate ponies... (I'm assuming they're ponies since they were so small!)

A few little updates

First of all, Ricky's glucometer died (a problem that apparently has had a recall associated with it, that I didn't know about) and I wasn't able to use it with him when he had the mother of all dizzy spells the other day. I called the endocrinologist's office on Monday and by Tuesday they'd called in a new one, along with new strips and lancets since it's an updated version of the old one. So, yay for that. Misty of course thinks it's a fun toy to play with and tries to get the lancets out to poke herself with, so we have to keep it put up HIGH.

Secondly, I called the CF clinic to get the results of Ricky's December DXA scan, and as it turns out, his bones are FABULOUS, even better than the last time! Yay!

Also, last week Ricky lost a molar. It went from being loose to coming out in two days. This was the first tooth he lost on his own (not pulled out by a dentist) in several years and he was so proud of it. He has already started to get a new tooth in its place. His mouth is still gappy from all of the teeth the dentist recently pulled out!

Nothing else to report now. Next month we have a few doctor's appointments, and hopefully he stays healthy until then!

bone density scan

Just a quick note, Ricky did fine with his bone density (aka DXA) scan. Misty and I got to watch it being done. His last one was over four years ago and will serve as a baseline for this one. Basically he should be gaining bone and his bones should be staying strong and not becoming less dense.

It was an interesting test... First they scan the non-dominant hip (his right one because he is left-handed) and then certain bones at the base of the leg by the foot, and then they scan the whole body. The whole process only takes about 10 minutes. When the scan was done, we got to see his entire skeleton on the computer screen as the tech verified that it had worked properly. That was cool!

As a side note, he's now 97 pounds and 4'11". He has apparently grown 4 inches since his last scan -- encouraging news. :)

We will have the results in around a week.

Edited to add video of the end of the bone scan!