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Monthly Archives: January 2011

Plan B

It seems that Anthony is unable to tolerate anything in his stomach without reflux causing stomach contents up to the back of his throat. Anthony has a very strong cough, which is good for clearing his lungs, however when he coughs, this also pushes his stomach contents up to his airway, which causes more coughing – it’s a vicious cycle. Even on an empty stomach, the stomach still has acids and any saliva that Anthony swallows, so his stomach is never really empty. We tried attaching a bag to the G-tube port (stomach port) to allow his stomach to empty. With this drainage bag, when he coughs, the acids go into the bag rather than up to his airway. We were feeding him via the J-tube and not seeing any formula in his stomach drainage. This approach was working great and we were up to 40cc/hour (with a goal of 50cc/hour).

Unfortunately, Anthony vomited about a week ago and the vomiting seems to have displaced the tube. We are now getting formula in his G-tube drainage. Basically, some of the formula is going in and then out again. This will not do. It seems the shorter GD-tube will not stay in place, plus considering the difficulty placing this type of tube, we have decided to go with a surgical J-tube.

So, Anthony will have two separate tubes, a G-tube to keep his stomach empty and a J-tube for feeding. The J-tube will be place beyond the site of his vulvulas surgery. Another advantage to this type of tube is that once Anthony is completely healed from this surgery, I’ll be able to change or replace both tubes myself, without having to go to the hospital. This is a big plus to me.

Anthony is scheduled to be admitted to the hospital on January 31st for pre-op testing and bowel prep. Surgery will be on Tuesday Feb. 1st and if all goes well he will be discharged on Wednesday or Thursday. He will continue on TPN via the PICC line until we are able to get enough calories into him via the new J-tube. We are optimistic that this procedure will work for Anthony and we can get him off the TPN and back to school.

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Replicators Coming Soon?

I’m a bit of a nerd when it comes to science and science fiction. My favorite TV show is Star Trek: The Next Generation. Often times science fiction can give us a glimpse into the future. What is fiction today might be the scientific innovations of tomorrow. Take for example the Star Trek replicator. A replicator can create any inanimate object, as long as the desired molecular structure is on file. Just tell the computer what you want and the replicator will make a copy for you.

The Star Trek replicator was all I could think of when I recently read a story about the Makerbot Thing-o-matic. A Thing-o-matic is basically a printer, but rather than printing with ink, the Thing-o-matic prints with melted plastic. The plastic is printed in layers, which allows the user to make 3D objects. A person can design just about anything using 3D software, feed the design into the printer and print out a copy. Once a design is created, it can be shared via the internet and someone on the other side of the planet can print out the object. This could eventually eliminate stores and shipping. You just order a file online and print out your thingy. It would be like having your own little factory.

Makerbot Industries has sold 2,600 of these printers and has an active online community that shares their designs via Thingiverse. I have a feeling that this could be the beginning of something BIG.

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Update on Anthony

Brief recap

On December 7th Anthony had emergency surgery for a jejunal volvulus and had 135cm of his small intestine removed. Details here

He spent 11 days in the hospital and came home with a g-tube and a PICC line. Because of the surgery, they had to discontinue his GJ-tube and place a G-tube. Prior to the volvulus, Anthony had to be fed via J-tube (Jejunal tube) because he is unable to tolerate G-tube (gastostomy tube) feedings due to severe gastric reflux.

We were unable to feed him sufficient calories via the new g-tube because of his reflux and we could not place a new GJ-tube because of the surgery. So, he came home with a PICC line for TPN (Total Parenteral Nutrition via an intravenous).

The Plan: to replace his GJ-tube once his small intestine heals. If they are unable to replace the GJ-tube, then they would do a surgical J-tube.

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On January 5, 2011, Anthony returned to the hospital for a GJ-tube. Anthony had had a G-tube for many years. However, after his spinal fusion about 4 years ago, his reflux kept getting worse until we finally decided to place a GJ-tube. A GJ-tube is basically a tube that is threaded through his present G-tube stoma and then guided via x-ray into his Jejunum (second part of the small intestine).

Because of Anthony’s past abdominal surgeries (Nissen fundoplication and the more recent bowel resection) threading the tube from stomach into the small intestine is a challenge. Plus, they have to be very careful with the placement of the tube to avoid the surgical site (where they sutured the small intestine together). They had to order a custom JG-tube, which is a short tube and could actually be called a GD-tube, because it goes into the duodenum, (first portion of the small intestine). If they were unable to place this tube, the back-up plan was to do a surgical J-tube.

It took them about 3 hours under general anesthesia to get proper placement of the tube. He was admitted overnight for observation. He was discharge the next day with the new tube at 20cc/per hour. We need to gradually increase this amount with a goal of 50cc/hr 24/7. This is enough calories to be able to discontinue the TPN and remove the PICC line.

We are really in no hurry to stop the TPN, because Anthony has lost a lot of weight and we would like him to gain some weight before removing the PICC line. We have a follow up appointment with the surgeon on Wednesday.

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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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