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Anthony’s Airway

Anthony has never had a very good airway. When he first joined our family in 2000, I remember listening to him snore while sleeping and thinking he may need a tracheostomy some day. But we managed his airway with positioning, occasional oral suctioning and Anthony’s nice strong cough. Even though he did sometimes have trouble handling his own saliva, he was always able to clear his lungs with a cough.

In 2006, he had a spinal fusion (lots of posts about this surgery if you search some of the earliest posts on this blog). The fusion was for his scoliosis and the surgery was very successful. His orthopedic surgeon was very happy with his nice straight spine. Problem is that the surgery and/or straightening seemed to make his gastric reflux worse. Maybe his old fundoplication unwrapped or just having a straighter esophagus was enough to bring stomach content up to the back of his throat. Again, his strong cough helped, but over time, it got harder and harder for him to tolerate his G-tube feedings.

In 2010 we decided to switch out his Mic-Key button (G-tube) for a GJ-tube. This is a longer tube that is threaded via the g-tube opening through the stomach and into the jejunum (first part of the small intestine). With a GJ-tube, feedings and/or medications can be given in the stomach or small intestine. Feeding via the small intestine greatly improved his reflux and things went well for a while, until one morning when there was blood coming out of his tube. We took him to the ER and long story short, he had an intestinal volvulus (also documented in this blog). This was an emergency surgery situation that required a bowel resection.

Eventually, he had another surgery to place a separate J-tube below – or down-stream from – the bowel resection. During this very long recovery he came close to having a tracheostomy because his airway was floppy and his tongue was sometimes blocking his airway. But once he was fully recovered his airway improved. Not great, but also not to the point of needing a trach.

Fast forward four years…Rich and I decided to take a vacation, just the two of us. Anthony and Natasha went to a skilled pediatric facility, Eric went to a respite house and Aaron went to Auntie Joyce’s house. This involved lots of work and coordination in order to get away, but we had a wonderful week in the Turks and Caicos.

The day after we got home, we got a call from the nursing center saying Anthony had a gagging episode and had aspirated. He was transferred to Lowell General Hospital where they wanted to admit him, but we had him transferred to UMass Memorial University Campus. He was obviously sick, but we were able to take him home on antibiotics. But he was not improving and his lungs and airway were in bad shape. He ended up being admitted to the ICU and placed on a ventilator.

After a week in the hospital he came home, but his airway was just not getting better. It was very hard to watch him struggle to breathe. He had to be positioned very carefully in order to maintain a decent airway. It was time to revisit the tracheostomy.

We had him readmitted because again he was not improving and we had an ENT (otolaryngology) evaluation as it seemed that a tracheostomy could no longer be avoided. After much research and consultations with Anthony’s doctors, we decided that the best option for Anthony would be a laryngotracheal separation rather than just a tracheostomy. This was a more involved surgery but would help Anthony with several of his problems: mechanical airway obstruction (big tongue) and sleep apnea that went along with his obstruction, chronic aspiration of saliva and reflux which was still a problem because of normal stomach acids.

laryngotracheal-separation

A laryngotracheal separation is different from a regular tracheostomy because rather than just placing a trach tube in the airway, the trachea (wind pipe) is actually disconnected from the upper airway. The trachea is separated and the upper portion is stitched closed and the lower portion is brought out and sutured to the neck, so that he is a total neck breather. This means that the nose and mouth are completely cut off from his lungs leaving no way for saliva or stomach acids to get into his lungs.

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On Wednesday August 6, 2014 Anthony had his laryngotracheal separation. He is currently in the ICU at UMass/Memorial. He was initially on a ventilator post-operatively, but they were able to wean him off the vent within 24 hours. It is such a relief to see him breathing easily!

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More updates coming soon…

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Eric’s Team Hoyt Running Chair

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Eric is so comfortable and happy in his new Hoyt Running Chair! Eric would not have his new running chair without the help of family, friends and community. We would like to take a moment to thank all those who helped make this possible.

Special thanks to:

Thanks to all those who made donations via Ainsely’s Angels:

  • ANONYMOUS X3
  • *Mystery* Super Fan
  • The Maguire Doggies
  • Brooklyn Vance
  • Wendy, Marika & Tanner
  • St. Mary’s Parish
  • Joanie Edson and family
  • Nancy, Kyle & Meghan Treem
  • Edgren-Fortin Family
  • Susan Novak
  • Sandra Arix Kazanjian
  • Gilgallons
  • Maureen Bonica
  • The Ward Family
  • Michelle, Jimmy & Ryan
  • Jim Murphy
  • Rita Haga
  • Cousin Kari
  • Dawna Price
  • Pam and Jack Kates
  • Lori, Rick, Rider and Macie Muhr
  • Houle family
  • The Romaniec Family
  • Pat Paradis
  • Jaye Zawada
  • Seidel/Peters Family
  • The Langevin Family
  • Susan Rohl
  • Robert Ciavardone
  • Debbie and Stephen Maguire
  • The Dagle Family
  • Marianne and Jen
  • The Griffin Family
  • Paula Montuori
  • Bob and Donna Vollono
  • Larry and Pat Folino
  • Marianne Rososky
  • Pat & Faye Nolan
  • Dick and Joyce LaChappelle
  • Louis Shropshire
  • Gary & Phyllis
  • The Colluras
  • The Coz Family
  • Joan Winterkorn
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TEAM HOYT Running Chair for Eric!

Eric Bissell
Eric Bissell

Eric is a very personable young man with spastic quadriplegic cerebral palsy. He is unable to walk and is wheelchair dependent. One of Eric’s favorite things to do is to go for walks and runs with his mom and dad. Most people around our small town of Grafton Massachusetts know the familiar site of the Bissells pushing Eric around town. Over the years, Eric has had several special needs joggers, which he has either worn out or out-grown. He has again out-grown his current jogger and we have been looking for options for adult special needs joggers. At this point, Eric is 20 years old, 130 lbs and hopefully finished growing! The best solution for Eric would be a Team Hoyt running chair. But these chairs are custom made and very expensive. For this reason, we have partnered with a non-profit group called “Ainsley’s Angels” to help us organize a fundraiser for Eric. With the help of family, friends and community we hope to get a custom Hoyt chair for Eric. Any amount you can give would be very much appreciated and tax deductible. Thank you!

Click Here to Donate

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Rubber Duck Website

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After Blip.tv gave most of it’s members the boot (see previous post), we had to find a new host for Rubber Duck Theater. We set up an account on YouTube, but YouTube is over-the-top with their copy write filters and either places ads on videos or blocks them entirely even for videos that don’t actually break any copy write laws. When you do movie reviews, you are allowed to use small snipits of movies. You can challenge YouTube, but that’s a nuisance. We did manage to upload 42 of our 45 episodes so far, but still not the best solution.

We then tried Vimeo. Their free account was useless because there was only enough space for a couple of videos, even though our online episodes are only between 300-400MB each. So we paid $60 for their “Plus” account, but this account only allows users to upload 5GB per week. A time consuming task uploading 45 episodes. But we are up to episode #31 as of today, and so far no copy write issues like YouTube. Vimeo also has a pro account, but it’s more than we want to spend for our public access non-profit videos.

Then we thought why not host the videos ourselves and not deal with these video sharing sites? We already have several hosting accounts for various projects. But this can really put a strain on hosting bandwidth. Our best solution so far is to host the actual videos on Amazon’s servers. Amazon offers lots of server space and very it’s very inexpensive. So, we’ve uploaded our episodes to an Amazon Web Service (AWS) “S3” account and linked the videos to this blog powered by WordPress on a 1and1.com hosting account. It’s nice to have full control over our content and no annoying ads to deal with.

Our Community TV station is also working on videos on demand, so we hope to have our show at graftontv.org as well. Still more work to do on this site and also need to update our Facebook account, which is all linked to blip.tv. So, that is where we are at now.

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