Brionna update. April 3, 2009

doxielady5569128 · April 03, 2009, 10:12:21 AM

Brionna had her sleep study, her EEG and her MRI over the last few weeks. The MRI found nothing irregular except for the skull size. They were unable to find out what is causing her headaches. :dontknow: The EEG showed that she is NOT having seizures, but the doctors and her mom and dad are convinced she is. They put her on a new medication used to treat seizures and it will also help with her headaches and sleeping at night.

The Sleep study showed that Brionna has sleep apnea, type 2. This is a very serious issue as her brain tells her body to quit breathing when she is asleep. :crazyeyes: She is due to see a specialist in May to see what to do about that issue. Until then, her parents are to watch her all night long and wake her periodically to make sure she's breathing. I can't even imagine how tired they will all be.

Please continue to send prayers for Brionna. She just keeps coming up with more and more problems and her family is getting frustrated that the doctors can't just make it all better. She does have some pain free days, but they are very rare. Also, her family got her a dog to help comfort her when she is in pain and so that the dog can be trained to alert them to any problems with Brionna.

I'll update again when there are changes.

AnnieofNJ · April 03, 2009, 05:25:20 PM

That poor little girl cannot get a break. She and her parents are in my prayers and the puppers are sending her some rays too. Thanks for the update.

Hugs,
Annie & the New Jersey Doxie Gang

Spanish Teckels · April 04, 2009, 07:32:29 AM

Poor little lass, we really feel for her and for her family and friends. Just wish someone like my fellow Scot - Hugh Laurie, aka Dr. House, could see her quickly and put her right in a jiffy, just like in the movies. We´ll keep the prayers coming in the meantime.

cheryl186 · April 04, 2009, 07:40:44 AM

Continued prayers for Brionna and her family

Teresa · April 04, 2009, 01:51:26 PM

I've been following her since you first posted her Care Pages site. I keep wondering if somewhere like St. Judes might be able to give them an answer. It amazes me how laid back some of these doctors have been and how slow the specialists office have been at getting her in.

doxielady5569128 · April 05, 2009, 09:23:47 AM

Quote from: Teresa on April 04, 2009, 01:51:26 PM
I've been following her since you first posted her Care Pages site. I keep wondering if somewhere like St. Judes might be able to give them an answer. It amazes me how laid back some of these doctors have been and how slow the specialists office have been at getting her in.

The main reason it takes so long for her to get into specialists is because there is a waiting list a mile long. The biggest hospital near her that specializes in children serves all of Colorado, most of Nebraska, Parts of South Dakota, and all of Wyoming. It is basically the largest children's hospital for our area. Also her condition is so rare only a handful of doctors actually understand it. her surgeons had to brought in from Germany!

I hope that helps you understand the situation a little better. That is a great idea about St. Jude's. The main reason her parents haven't switched to a bigger hospital is that she and her mom would have to move to be anywhere near one. Then there would be the problem of what to do with her big sister and her baby brother since their dad has to work 6-7 days a week. Its basically a huge nightmare.

Teresa · April 06, 2009, 04:08:23 PM

That makes more sense. I just know I would be going crazy knowing something was wrong with my baby, the doctors telling me it could be serious, or maybe not, but they would see me again in two or three months. I hope they get an answer to all of this soon.

doxielady5569128 · April 08, 2009, 06:23:11 PM

Quote from: Teresa on April 06, 2009, 04:08:23 PM
That makes more sense. I just know I would be going crazy knowing something was wrong with my baby, the doctors telling me it could be serious, or maybe not, but they would see me again in two or three months. I hope they get an answer to all of this soon.

I'm glad that helped clarify a bit. I hate that they have to put off appointments that are so important, but then I think of the other babies who are just as sick or more sick than Brionna. Can you imagine having to be in the situation where you have to pick and choose which patient is a priority?! I definately could not handle that!