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!)

Neurology visit

Went to the neurologist on Wednesday and it went well. It was a pretty quick visit, but the good news is that Dr. O had followed Ricky's case in the hospital in April so I didn't have to go over everything with him again.

He did a neuro exam and then said he wanted to put Ricky on Topamax, a very tiny dose, to see if it helps with the dizzy spells. If it doesn't work, it doesn't work. We'll titrate it up until it does work (if it does) up to 50mg total per day.

He also wants to do a head MRI as well as a specialized MRI that looks at the blood vessels in the head to see if there is a problem there. I mentioned that the endocrinologist might be wanting to do a CT of the pituitary gland (it's something we were going to discuss at his appointment later this month) and he said he'd add that on.

I Twittered about the Topamax and got a number of responses from people who have been on it for various things. The terms like "dopamax" and talk of appetite suppression (the last thing Ricky needs) and mood swings worried me... So today I left a message for the neurology service and a nurse practitioner called me back. She said that the effects like those are from very LARGE doses, and Ricky will be on a very, very small dose. So... I think we are going to go ahead and try it.

Today was Ricky's last day of school. I guess it was a busy one because this afternoon and evening he was very tired and grumpy. :P Starting tomorrow he'll be off for a few weeks until he starts summer school.

Guess that's it for now!

potpourri

Ricky, my soccer hero
Originally uploaded by Beckerbuns

Check out the video I made of Ricky! It's a very preliminary attempt at video editing and it's kind of pathetic but I thought you might all enjoy it. (I mean the video editing is pathetic -- not the subject!)

Ricky had his last day of soccer for the spring on Sunday. He played hard and scored multiple goals. He was only able to play so well the last couple of weeks because he was sick for so long. :( Hopefully in the fall we will have better luck.

If you would like to see the rest of Ricky's pictures and videos from this season of soccer, they are here.

So, tomorrow is Ricky's long-awaited neurologist visit at Stanford. We used to have a pedi neuro in San Jose but he's not on the newest insurance and the docs at Stanford are. This one is highly regarded by Ricky's pulmonologist so he should be worth the wait.

Ricky has continued to have dizzy spells and spells of extreme fatigue. I hope that the neurologist has some ideas, because everybody else has tapped out their ideas. I found the CD of Ricky's brain MRI from two and a half years ago. I am hoping that this might help the doc, though he might want to do an MRI that shows different stuff. Not sure. I hope he will have had the time to review all of Ricky's test results from the hospital stay (echocardiogram, video EEG, etc.) because he had almost a full neuro workup. There isn't much left.

We saw the psychiatrist yesterday. Which reminds me, we finally got Ricky's meds late last week. It was a close call. He was actually out of meds and I was getting desperate, crying in desperation and wanting to throw the phone every time I had another frustrating conversation with the insurance company or doctor's office. Finally what it took was Dr. J, Ricky's psychiatrist, CALLING the insurance company to see what the heck they wanted from him. He had faxed the prior authorization forms repeatedly.

And finally, we are in the process of trying to get a new chest therapy vest from Respirtech. They make a newer, more technologically advanced, streamlined vest machine that can be programmed. (!!!) It is also smaller. We have the giant mondo original vest from Hill Rom and it is completely impossible (well, mostly) to take it on vacation. Hopefully we get the Respirtech vest (depends on CCS and insurance) because it would be great to have on vacations. Other methods of airway clearance just don't work as well for Ricky.

Ricky's last day of school is this Thursday. He has a little break and then has summer school during July. In August we (the three kids and me) are planning on going on a road trip to Oregon and Washington. We'll visit Dave's (Misty's dad) parents, do the tourist thing in Seattle, and then visit Kat in eastern Washington. We are really looking forward to the trip.

Guess that's it for now! Thank you all for keeping Ricky in your thoughts.

I am in shock.

I know that many of you are readers of Emily M., mom of Dakota, via the "Two Premies and the Big Sister" blog and her other blogs. Emily and I shared lots of information with each other about chronic lung disease and commiserated about our children's medical issues.

I got word today that Emily has been arrested. Details are here and many other places in the Texas media.

I am in total shock. Oh my God. It sounds like Emily needs help but I am so sad for her husband Raff and her kids. Please keep them all in your thoughts and prayers (if you pray).

Edited to add: Per Austin CPS, anyone with information about the case is asked to call 512-974-6880.