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Barry Presented 2011 Unsung Hero Award

grafton

Linda Barry
Linda Barry

On Friday, March 4, Linda Barry, special education teacher at Grafton High School, received the 2011 Unsung Hero award presented by the Central Massachusetts Department of Developmental Disabilities Citizen’s Advisory Board. The award was presented at the Annual Citizen Advisory Board’s Legislative Breakfast held at Clark University in Worcester.

Mrs. Barry was nominated for the award by Grafton residents Richard and Cynthia Bissell who’s son Eric is a Junior at Grafton High. The award was presented to Mrs. Barry by nominator and Keynote Speaker Richard Bissell.

“Mrs. Barry goes above and beyond the call of duty on a daily bases,” said Bissell. “She is an excellent teacher who also has a natural ‘instinct’ for what individual students need. This is a gift that cannot be taught. ”

In addition to the Unsung Hero Award, Mrs. Barry was presented with a citation from the State House of Representatives presented by Representative John P. Fresolo for her “dedication to individuals with disabilities and their families.”

Mrs. Barry also received a citation from the Massachusetts State Senate presented by Jason Palitsch, representing Senator Mike Moore.

The DDS Central Region Citizen Advisory Board holds an annual Legislative Breakfast in order to bring legislators, provider agencies, DDS staff, individuals and families together to discuss issues facing people with developmental disabilities. It has been a tough couple of years for DDS due to the current economic problems and statewide budget cuts.

Department of Developmental Disabilities Commissioner Elin M. Howe spoke of the challenges faced by the department in order to provide much needed services for children and adults with intellectual disabilities in the face of budget cuts and staff lay-offs. “Of most concern to all of us, barring none, are the cuts to our family support services account.” said Howe.

In his Keynote speech, Richard Bissell discussed the importance of family support funding. “We are talking about a very small amount of money, compared to the cost of residential placement.” “Families are saving taxpayers millions of dollars by caring for their children and adult children at home.” A small amount of family support money can be the difference between a family surviving or not.

Aaron and Richard Bissell
Aaron and Richard Bissell

The theme of this year’s Legislative Breakfast was “Where Are We Going?”, with a large question mark. Will the funding be there in order for people with developmental disabilities to live with dignity as productive citizens in our communities or will we return to the dark ages of neglect? It has been said that a community, a state, a country and in fact the world should be judged by how well we support our most vulnerable citizens.

Front Row (left to right): Jonathan Carlson, Marika Jelovcich, Linda Barry, Eric Bissell, Brendan Griffin, Taylor Dee, and Representative John P. Fresolo Back Row (left to right): Richard Bissell, Aaron Bissell, DDS Commissioner Elin M. Howe, and Jason Palitsch representing Senator Mike Moore
Front Row (left to right): Jonathan Carlson, Marika Jelovcich, Linda Barry, Eric Bissell, Brendan Griffin, Taylor Dee, and Representative John P. Fresolo
Back Row (left to right): Richard Bissell, Aaron Bissell, DDS Commissioner Elin M. Howe, and Jason Palitsch representing Senator Mike Moore

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Library Local Community | cindy | | Leave a comment |   Award GHS Grafton High School Linda Barry Unsung Hero

Another Tracheostomy in Our Future

On Friday, we removed Anthony’s PICC line and discontinued the TPN. That’s the good news. Unfortunately, the same day he spiked a fever and became congested.

On Saturday, it became clear that we had a very sick boy on our hands. Because of his congestion and fever, he was started on antibiotics via his J-tube. We were hoping to treat him at home.

On Sunday, Anthony went into severe respiratory distress, more than what one would expect with pneumonia. Obviously, this was more than we could manage at home. We brought Anthony to the ER, and since he was in respiratory distress, the ER team went right to work on him. They were ready to intubate him when a respiratory therapist tried putting his head back and holding his mouth closed. His breathing got better right away. They put a backward collar on him, the type you’d wear for whiplash, put a towel under that to keep his mouth closed.

At this point, it was becoming clear that most of Anthony’s distress was caused by a mechanical airway obstruction. We knew he had obstructive sleep apnea, but he was never obstructed to this extent. Maybe an upper respiratory infection had exacerbated the problem?

His chest x-ray was “unimpressive” meaning he did have some congestion, but not terrible (when doctors say something is impressive, they mean it’s bad). His WBC was only slightly elevated and his blood gases fairly good considering his distress.

He was started on IV antibiotics and admitted to the PICU. Now the question is do we trach him? It is pretty obvious to us that a tracheostomy will solve his obstruction problem. Of course a tracheostomy means another surgery, not to mention what’s involved caring for a person with a trach (I happen to know someone who wrote the book on tracheostomy care).

Over the past couple of days we have consulted with the PICU medical team, the surgical team, the infectious disease team, a pulmonologist and an otolaryngologist. They all agree – as do Rich and I – that Anthony needs a trach, the question is when.

He had a fever of 101 this morning, so there is something going on with him, but it’s not exactly clear what is causing his fever. There was no pneumonia, all cultures are negative so far (blood, sputum, stool, urine). He is on 3 different antibiotics. They want him to have at least 5 more days of antibiotics on-board before they do the surgery.

We are looking at possible surgery on Monday or Tuesday. Looks like he will be staying in the PICU until then, and then at least another week after the surgery. So, that is where we are at now.

Below is a photo from Rich’s cell phone of me with my tools changing the clamp and dressing on Anthony’s J-tube. This is a new device that most of the staff have not seen before. I don’t want the nurses messing with it, because it’s too easy to damage the tube. Yes, I’m a control freak! LOL! In the photo, you can see what is required to keep Anthony’s airway open until he gets a trach.

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Anthony | cindy | | 1 Comment |   Obstructive Sleep Apnea tracheostomy tracheotomy

“How’d the Moon Get There?”

The moon was formed after a Mars-sized object smashed into Earth over four and a half billion years ago. This collision caused material from both Earth and the colliding object to be thrown into orbit around Earth. This material eventually gathered together to form the Moon.

Bill O’Reilly tried to prove the existence of God with the now famous line, “the tides go in, the tides go out”. Now he has made himself look even more foolish trying to explain his way out of this ignorant statement.

The fact is that since the beginning of human history, people have created gods to explain things that they don’t understand. Naturally, the first god was the Sun God, since the sun gave light and life. Some cultures had many different gods for all sorts of things. Today, most religions worship a single god, but the premise is no different than it was in ancient times. We still use gods as gap fillers for things we don’t understand, which is exactly what O’Rielly is trying to do here – and with such arrogance. I don’t know how that happened, therefore it happened magically.

The more we learn about life, our world, our universe and beyond, the less we will need gods. How did we get here? Was it luck or was it a magical, invisible sky daddy? How about the Flying Spaghetti Monster?

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Uncategorized | cindy | | Leave a comment |   "How'd the Moon Get There?" "the tides go in Bill O'Reilly god gods moon religion sun the tides go out"

More Complications

I left off last Tuesday when we were waiting for discharge from the hospital. We were literally discharged and on our way out the door when the nurse decided to give Anthony a dose of Flagyl (an antibiotic drug), so that he would not miss a dose. The Flagyl was very thick, sticky and gritty and it stuck to the inside of the J-tube, blocking the tube. We tried everything to unblock it, and in the process of trying to clear the tube, it was torn. At that point, there was nothing left to do but try and replace the tube.

Anthony went back to the floroscopy room where they threaded a wire through the broken tube, and removed the tube while leaving the wire in place. They then ran a new tube over the wire. The wire is used for proper placement and can be seen via x-ray. The first attempt with the same size tube (14Fr) failed, but they were able to get a smaller tube in place (12Fr). They then instilled contrast dye into the new tube to check placement. Since Anthony was already technically discharged, the doctor agree to let us go home with the new tube. So, again, we started off slowly and we gradually increased his feedings.

He was doing well and up to 40cc per hour (while still receiving TPN). Last night he had a fever, which was worrisome. So many possible sites of infection (and his Flagyl had been discontinued because of the issue with the J-tube). I gave him some Motrin, but today he was still febrile. Obviously, he had an infection somewhere. I called the surgeon hoping to get an antibiotic order over the phone, but the covering doctor was concerned that Anthony might be septic from his central line. True, could be his PICC line, could be a number of things going on with his tubes and bowels, could be pneumonia, as Anthony has a chronic cough due to aspiration.

So, off to the E.R. yet again. By the time we got the the hospital, Anthony’s temp was 103. They started off with IV fluids, blood work, including blood cultures, a chest x-ray and a urine test. After several hours in the E.R., they came to the conclusion that Anthony had a UTI (urinary tract infection). That would have been one of my last guesses after the PICC line, J-tube, G-tube, surgical incision, sepsis, peritonitis, pneumonia… So, I guess a UTI is good news. They gave him an IV dose of Levaquin (a broad-spectrum antibiotic). We will continue the Levaquin via his J-tube for 10 days at home.

We are home now and very happy that Anthony did not need to be readmitted to the hospital. He has a follow-up appointment with his surgeon next Wednesday. Until then, we will work on getting him to tolerate 50cc/hour of Peptimen via his J-tube. The next step is to discontinue the TPN and remove the PICC line.

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Anthony | cindy | | Leave a comment