Happy Boy

WOOO HOOOOOO!!!!!!!

Brycen has kept his stats up without oxygen over night and we were released to go home. But, before we leave we wanted to get a swallow study done for the aspiration issue just to make sure he is ok. The good news is he may be able to slowly start taste pleasures (eating small amounts of certain foods of applsauce consistency) wich is awesome!!! The poor boy has had nothing by mouth but his passy for three whole years! I think he will really enjoy this! Although it will still have to coincide with his extremely strict ketogenic diet, but something is better than nothing! So we are sitting here waiting on the doctor (as usual) to post the results from the actual g-tube test and then we are blowing this joint!!!!!!! Thanks for all your love, support, and prayers!!!

Homeward Bound

Not Quite Ready

Although Brycen is definately back to being himself he still requires just a little bit of oxygen. Last night they took the oxygen off his face at 8:30 and he did excellent untill he started really resting well and his stats were not so good. I was hoping they wouldn't have to put it back on, hoping so much that i asked the respiratory therapist if she had spoken with brycen's nurse about putting it back on! But we all dip down in numbers when we are sleeping, Brycen just isn't quite ready to ditch the tubes yet! We will try again tonight and see how it goes! Fingers crossed!!!

Go Baby Go

Today Brycen has been off the oxygen for about two and a half hours and was holding his own but he still needs a little bit of oxygen to maintain the adequate level. He is starting to feel better and staying awake just a little bit longer. We are on way to making it home, but still need a little more time and supportive care. Hopefully it wont be long!

More Great News

Another good night the, by-papp machine seems to be helping him especially through the night. Doctors say his lungs sound good and if he can stay on room air while sleeping and hold his own then we can go home!!! Hopefully the day brings more great news!

Great News

Another good night with the by-papp machine and the doc says brycen's lungs sound better!  They are also starting him back on his formula with continual feeding instead of pedialyte....which is more good news!!  Although he will probably here a couple more nights things are looking better.  Thanks for all the love and support and prayers and all that good stuff!  It helps!!!!

IT'S OFFICIAL

The doc just came back and said he just spoke with the radiologist whom he knows and trusts very well and the x-ray looks better than yesterday and it definately is not pnuemonia!! This is excellent news! So this means the By-Papp worked well last night and we will resume with that again tonight. We have also moved to pedialyte for fluids through the g-tube, not quite ready for formula because we aren't sure if he is aspirating and the nesson(stomche surgery from 3 years ago to prevent aspiration) has slipped. That's another battle we can deal with once he is well.

Little Fighter

The By-Papp machine is working well once they were able to put the mask ovewr his face. Brycen doesnt like things on his face and he let the respiratory team know that for sure last night by fightint them off and brycen won the first round! We had to sedate him a little bit to get the mask on his face and he has rested well all night and still is!!! Not from sedation....from being able to breathe. they took another x-ray and the radiologist hasnt looked at it yet but the doc did and he thinks it is NOT pnuemonia just some acute collapsing of the left lung wich is apparently common with bronchiolitis due to blockage in the airways. My lil man is such a fighter i love it!!!! I believe we are on the way to recovery. Any type of respiratory illness that brycen gets is always tougher on his lil lungs so they just give him suppotive care until he can fight his way back home!!!!

By-Papp Machine

S0....the results from the x-ray are in and initially they thought it might be pnuemonia so we should start antibiotics. After consulting with more docs they have decided that it may be that his lung has squished together (almost collapsed) in the lower left portion andto wait for antibiotics and start him on a machine called By-Papp which will force the oxygen through his nose and mouth (since we have learned that he is a mouth breather)ans force the airways and his lung open. We will do another x-ray in the morning and if the same spot is still there then it is safe to say that it is pnuemonia and we will then start the antibiotics. also his i.v. went bad today and they cant seem to get one back in even after 6 tries of poking and proding, the next step may be stunt in the head. PLEASE keep brycen in your thoughts and prayers that he will get better soon. Thanks so much!!

Nitetime is always tougher for Brycen when he is sick....he got to rest some butwas really tugging hard to breathe at times even with the high flow @ 100% and 10 liters (which is the highest it can go. The breathing treatments are definately soothing and helpful so wee moved those to every two hours instead of every four. The doctors came in this morning and said he is a "mouth breather" so the nostral canula for the oxygen loses some of it's effect, and he doesn't think the numbers for the oxygen are "true" to what his little body needs. They have taken another chest X-ray this morning to make sure they havent missed anything(sometimes pnuemonia lags behind the body in photos) and we will hear about that later. thanks for all your concersn,thoughts,prayers

back @ the healing hotel!!

So unfortunately today we were admitted to mission following an early morning emergency room visit. Brycen was diagnosed with bronchialitis aka (severe upper respiratory infection) which makes it challenging for him to breathe. Right now he is recieving high flow oxygen @ 100% and taking prednazone to open up his airways, also he is getting albuteral breathing treatments. This is a viral infection so we can only give him supportive care while he recovers and let it run its course. Please keep lil B man in your thoughts and prayers that he will continue to be the fighter he was born to be!

Update on Fundraising & Brycen's Hyperbaric Chamber

Thanks to lots of hard work on the part of Brycen's friends, over $9,000 has been raised so far towards purchasing a hyperbaric chamber to help control Brycen's seizures. There was a great article in this past monday's Transylvania Times covering Brycen's poker run benefit & other private gifts. A huge thank you to everyone who has helped so far, especially:

Charles Pickelseimer III & Charles Pickelseimer Jr.
The Brevard Board of Realtors
Kelley Corwin
Erin Holden
Bella Hair Company
Julie's Subs & more
The UPS Store
Huddle House
Grand Central Station
Daggie's
Ed Boudreaux's
Save-mor
Brighter Day Coffee

Initially, our research indicated that the total cost of the chamber would be around $11,000 at most. Now, we realize that the kind of chamber Brycen needs is actually much more expensive. There are many different sizes of chambers out there, and the one Brycen needs must be big enough for Erin or Laura to crawl in with him. Because Brycen can't tell us if the pressure and other settings in the chamber are what they should be, someone has to be in the chamber with him to make sure the pressure is correct and not painful. The cost for this type of chamber is somewhere in the neighborhood of $20,000.

While we're disappointed that we are further from our goal than we initially thought, we know that it can be done. Thanks for continuing to let your friends & family know about Brycen and his needs, and for sharing this blog with anyone who might be interested in helping out.

Benefit This Saturday in Brevard

Hi Everyone!

I hope you can all make it out to a benefit this Saturday, October 18th, at the John Deere building across from Save More groceries on Rosman Highway in Brevard. The benefit includes a poker run, hog dog dinner plates, a live auction, live music, and hair cuts by the fabulous ladies of Bella Hair Company. Here's the schedule of the day's events:

9 am - noon: Haircuts by Bella Hair Company. $10 for adults & $5 for children. Stylists include Charlie O'Shields, Tracey Guillebeau, Brittany Austin, & Karie Eggelston. No appointment necessary.

11 am - noon: Poker Run! 2 wheels, 3 wheels, or 4! Cash prizes and door prizes on hand. It costs just $20 to enter- entry fee includes a t-shirt.

11 am - 4 pm: Hot dog dinner plates. All plates are $5.

noon - on: Live music by Leigh Glass band and other fantastic musicians!

1 pm until it's gone: LIVE AUCTION!!! Prizes valued from $100 - $12,000.

All day events: live music, raffles, bake sale, face painting, temporary tattoos, fellowship, & education on neurological disorders.

Hope to see everyone on Saturday!

Brycen is a Superstar!

Brycen made the front page of last week's Transylvania Times! We've also placed collection jars anywhere in/around Brevard that would let us... look for them around town. Of course, you can still give to the Brycen Ashworth fund at any Carolina First location or via paypal. Thank you to everyone who has given so far. We still have a long way to go, but your support is really encouraging!

Brycen has been in the hospital for the last several days with pneumonia and the flu. For children with Brycen's condition, pneumonia is a very serious concern. He is doing well and will hopefully come home this week, but this does not underscore his tremendous need for medical equipment. Not only do we feel that the oxygen chamber would be of significant benefit, but we also see the need for an oxygen sensor and, in the very near future, a new chair. Please keep Brycen in your prayers and, as always, forward this blog to anyone you think may be interested in giving.

The Brycen Ashworth Fund at Carolina First

Hi everyone! I'm excited to say that Kelley has arranged with Carolina First to set up a fund in Brycen's name. Anyone who wants to donate to help us purchase the equipment Brycen needs can go to any regional Carolina First bank and ask to donate to the Brycen Ashworth fund. Go to www.carolinafirst.com to locate a branch near you.
Or you can go to http://www.paypal.com/, click on send money, then enter the e-mail address kelleycorwin@yahoo.com, or you can write a check to the Brycen Ashworth fund and send it to ATTN: Kelley Corwin, 12 Larchmont Road, Asheville, NC 28804.

Kelley, you are awesome.

Also, look for Brycen's story in the Transylvania Times this coming Monday! Also, starting Wednesday, October 1, Clear Channel has arranged for Brycen's cause to be broadcasted through several radio stations, including 99.9 and 104.3.
Please pass the URL for this blog on to anyone you think might be interested in helping out with Brycen's cause.

A special thanks to Carolyn for putting together this incredible website. We love you! Brycen's family.

Mr. B - Sweetest Boy Ever

Look at that smile! That's my husband, Michael, with our nephew Brycen. This is a blog we created to help his mother, Erin, and grandmother, Laura, raise money and awareness for Brycen's needs and condition. These two ladies have been working hard for 3 1/2 years to give Brycen the best possible care.

Yesterday, Kelley and I wrote a press release to try and generate some attention (and hopefully donations) to purchase a piece of medical equipment that all of his family believe will help control Brycen's seizures and improve his quality of life. It's a start! We think it will be published in the Transylvania Times (our local paper) in the coming weeks, and we're trying for the Citizen-Times and others.

Here's the press release:

Brycen Ashworth has been a fighter since birth. Born March 22, 2005, he seemed to be a normal, healthy baby. Approximately six weeks later, he began having seizures and was rushed to the hospital. After extensive testing, a neurologist delivered some devastating news. The Ashworths were told that Brycen suffered from a rare neurological condition called Lissencephaly. He would probably never sit up, walk, or talk, and would need to be on anti-seizure medication for the rest of his short life span. His mother, Erin Ashworth, and grandmother, Laura Ashworth, are reaching out to the community in hopes of finding help to get Brycen the treatment he needs.

Also known as “smooth brain”, Lissencephaly is characterized by the lack of normal valleys and folds in the brain. Treatment for the condition varies and is based on the symptoms of the individual patient. In January of 2006 Brycen had a feeding tube put in due to 75% aspiration. Several months after that he was hospitalized again to begin the ketogenic diet in an attempt to control his seizures. Now 3½, Brycen has seen 4 different neurologists and endured a never-ending regime of hospitalizations and medications in an attempt to control his seizures.

Most recently, he was diagnosed with a lower respiratory infection and spent several weeks in the hospital due to a low oxygen level. From the time Brycen received oxygen in the hospital until shortly after he was released, he had no visible seizures and there was no change in his seizure medication. According to Laura Ashworth, Brycen’s grandmother, “This improvement with oxygen was observed by all, and we wondered at that time if possibly the oxygen he received had helped control his seizures. We had previously inquired about hyperbaric oxygen therapy from a particular center but received no response from them. Brycen’s most recent hospitalization has sparked our curiosity once again about hyperbaric oxygen therapy. We strongly believe there may be a possibility that this type of therapy may benefit him.”

They have been looking for hyperbaric oxygen treatment here locally, but to no avail. Due to Brycen's very rigid feeding and medication schedule it is very difficult to transport him. Therefore, his best option to help control his seizures is to purchase a hyperbaric oxygen chamber that could be placed in their home, which will allow him to receive regular treatments without interuption of his feeding and medication schedule.

Now, Brycen's family and friends are working to raise the funds necessary to purchase a hyperbaric oxygen chamber so that Brycen can benefit from oxygen whenever he needs it. There is currently no support to help them purchase this equipment, which costs around $18,000.

Family and friends are asking individuals in the community to give whatever they can for this special little boy. They can go to http://www.paypal.com/, click on send money, and then enter kelleycorwin@yahoo.com, or they can write a check to The Brycen Ashworth Fund and send it to ATTN: Kelley Corwin, 12 Larchmont Road, Asheville, NC 28804, or individuals can go into any Carolina First Bank and ask to donate to The Brycen Ashworth Fund. For more information, call Erin Ashworth at 828-337-9424 or Kelley Corwin at 828-713-3764.