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All posts by cindy - 14. page

Pick Your Side

I am horrified by this recent story from Los Angeles, California! The L.A. County Sheriff is investigating the sexual assault of at least 10 women with severe disabilities. The Sheriff received 11 DVDs containing graphic videos of these men – these pigs – sexually assaulting women with disabilities.

As a disability advocate who has attended many trainings on the subject of safeguarding people with disabilities, I am painfully aware of the dangers our most vulnerable members of society face. Of course, being a parent of children with physical and developmental disabilities also makes this a personal issue. Most parents of kids with disabilities will tell you that the hardest thing about having a child with a disability is the worry they have about what will happen to their children when they are gone or no longer able to care for their kids. I know this is my biggest worry. Who will take care of my kids and keep them safe? It takes money – a lot of money – in order to properly care for a person with a disability; many require 24/7 care. It is impossible for most families to afford proper care on their own. For this reason, they need government assistance.

How does something like this L.A. story happen? I can guarantee that a big part of the problem is lack of services for people with disabilities. Sadly, when money gets tight, state budgets get cut. More often than not, it is our most vulnerable citizens who are hurt. Typical conservatives who want small government and low taxes don’t understand that cutting state spending puts people at risk. For example, here in Massachusetts, our DDS (Department of Developmental Services) is cutting back on staff for group homes. There are people in these homes who have serious mental and physical problems, yet the state is cutting out nursing care. Many homes have to share one nurse with several homes. This leaves clients being cared for by minimum wage, uneducated workers who are expected to take care of all of their needs, including the administration of medications. This is dangerous for both the health and safety of people with disabilities.

We’ve all heard the horror stories of the abuse and neglect that went on in large institutions back in the 60’s and 70’s. This led to a push to close these human warehouses in favor of smaller community settings. This was a step forward, however, if we keep cutting community services, we are going to hear more and more stories like this one in L.A. You can’t just stick people out in the community without the proper supports and safety nets in place.

Republicans, when you push for small government and lower taxes, you are jeopardizing the health and safety of the disabled, the poor and the elderly. How can you sleep at night? Some conservatives will say, “Oh, I don’t want services for people with disabilities cut, just cut out waste and the people who are cheating the system.” First, there are always going to be people who cheat a system, any system. That’s life, deal with it. But keep in mind that the corporate welfare and millionaire tax loop holes make social service waste look like a drop in the bucket. Second, when you cut taxes, people with disabilities will lose services. This is historically true and it’s happening now. Whether you like it or not, this is the way our government is currently set up. We have a two party system and a country divided. So, pick your side.

In my opinion, a country should be judge by how well it cares for it’s most vulnerable citizens. Put people before money and vote Democrat!

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Youtube: Longer Videos for Selected Users

Congratulations! Your account is now enabled for uploads longer than 15 minutes.

Aaron is one of youtube.com’s “selected users” and is now able to upload videos longer than 15 minutes. Why was he selected? From what I can find online, youtube selected people with a history of complying with the YouTube’s Guidelines and copyright rules. The fact that he spends virtually all of his free time on youtube probably helped too. When he is not making movies, he is watching them!

To celebrate his new found freedom, Aaron has uploaded one of his favorite films, which was previously too long for youtube (he doesn’t like uploading videos in parts). Here it is, “Deadly Seduction” Uncut, uninterrupted and commercial free!

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He’s Home!

Anthony came home Friday afternoon after an 11 day hospitalization. We’ve been busy the past couple of days trying to catch up on life and get use to Anthony’s care. He came home with a g-tube and a PICC line. He is getting about 80% of his nourishment via TPN and about 20% via his g-tube. He is tolerating only around 20cc an hour via the g-tube.

The surgeon would like to try inserting a post-pyloric tube or GD-tube on January 5th. He will try placing the tube in the duodendum at a point before the anastomosis (where the two ends of his small intestine were sutured together). Anthony obviously can not tolerate gastric feedings, but hopefully if they can place the tube beyond the pyloric sphincter he will be able to tolerate tube feedings and we can ween him off the TPN. He will be in the hospital again for a couple of days after the new tube is placed to be sure he can tolerate the feedings via the new tube. We will also continue the TPN until he is able to take in enough calories via the tube. We are not in a hurry to get him off the TPN, because he has lost a lot of weight. We’d like to beef him up a bit while he has the PICC line.

Shortly after Anthony got home all the feeding supplies were delivered and a visiting nurse came to show us how to manage the PICC line, feedings and pump. She was very nice and helpful. She came back on Saturday to watch me hang the TPN. I felt like I was back in nursing school, but didn’t mind a bit, since it’s been a long time since I’ve done any kind of IV. I guess I passed, since I was on my own today. The nurse will come in once a week on Mondays to assess him and change his PICC line dressing.

We are running the TPN 16 hours a day from 6pm – 10am and the G-tube feedings during the day. Of course, keeping his bowels moving is another important part of his care.

That’s about it for now. We are so happy to have Anthony home for Christmas. We will deal with the next procedure after the holidays.

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PICC, PICC, PICC

Anthony had a bit of a set back last night. They bumped his feeding up from 30 to 40cc per hour and he vomited. This is disappointing, but not surprising. The reason we switched Anthony from a G-tube to a GJ-tube is because he was not tolerating feedings in his stomach, due to severe reflux.

Problem is that we can’t replace the GJ-tube until he heals from the surgery and we can’t get enough nourishment into him via the G-tube, without risking aspiration. So, the plan is to insert a PICC line in order to feed him intravenously.

A PICC line is a type of catheter used for prolonged intravenous access. He will receive TPN (total parenteral nutrition) via the PICC line. We will continue to feed him as tolerated via the G-tube, because it is important to keep his GI system moving. But the PICC line will be used to supplement is feedings.

Once his GI tract is completely healed, we will decide whether or not to go back to the GJ-tube. There are other surgical options that we may explore in the future, but no one wants to do more surgery on Anthony at this time, especially us!

The PICC line was inserted at 2pm. They will be removing the central line, which is leaking. Plus, they don’t like to send patients home with a central line, they prefer PICC lines in the home setting. Apparently they are safer with less chance of infection.

His G-tube feedings have been restarted at 20cc per hour.

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