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Monthly Archives: March 2011

‘A’ Week

‘A’ Week: 20-26 March 2011. Raising awareness of how many are ‘Good without God’.

The idea of ‘A’ Week is simple – to raise awareness of how many people are ‘Good without God’ and don’t need religion to influence their lives.

You take part by changing your Facebook profile picture to the ‘A’ for one week.

This year ‘A’ Week runs over the March Equinox from 20-26 March 2011. If just a handful of people were to change their profile pictures almost no one would notice – but with many thousands taking part, and using the same ‘A’ at the same time, it gets noticed all over the world.

‘A’ Week is not about being disrespectful to religion or people who have religious views, it’s about quietly showing that there are more people than may be realized who are ‘Good without God’ and who don’t need religion to influence their lives.

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Home Sweet Home

Anthony has become a popular guy at the UMass PICU and I am now the FourSquare “Mayor” of UMass. This means we’ve both been spending way too much time in the hospital. Here is the latest update on Anthony. On Wednesday Anthony began to rally. They had him on several antibiotics and cultured everything imaginable. We are still not sure what was infected, but the docs feel that the PICC line is the most likely culprit. Whatever the case, Anthony is getting better. He started smiling and making noise like the old Anthony.

By Thursday, he looked very good, except for the fact that his airway is quite tenuous. He has a “sweet spot” in his positioning and if he isn’t positioned just right, he goes into respiratory distress, his respirations and pulse go up and his O2 sats go down.

On Friday, we saw even more improvement. His muscle tone is starting to get back to normal. When I say normal, I mean normal for Anthony, which is high tone, due to his CP. But the high muscle tone also seems to improve his airway a bit. At this point, we feel that maybe we can hold off a while on doing a trach, so that he can get his strength back. As we all know, Anthony has been through a lot since December 7th. Now that he is getting better, we don’t want to put him right back in the OR unless we have too. While everyone agrees that Anthony needs a tracheostomy, the doctors have pretty much left the decision of when to trach up to us, so we decided to hold off for as long as we can.

He was no longer sick enough to stay in the PICU and since he was not going to have his surgery right away the question was, should he go to the regular pediatric floor or go home. We felt comfortable taking him home, so he was discharged from the hospital yesterday in “fair” condition.

So, he is home now. We have to watch him and position him very carefully. He is still on antibiotics for a couple more days. His feedings are going well and he seems happy to be home.

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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

Download Grafton News Article in PDF format

 

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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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