Martin's Answer to the "Ashley Treatment"

For the many individuals who have requested information on where to listen to Martin's song in it's entirety, read the lyrics and/or purchase it, we direct you to www.dustemiller.com 

 As always we have our good days, bad days and the wonderful wow days when we feel that we are somehow making a difference in the world.  Yesterday was one of those wonderful wow days and even as I write this I am still feeling the impact of it.

 

Yesterday we joined ADAPT in a protest in downtown Chicago with several hundred other individuals and to say that it was a powerful experience is a mild understatement. The protest took place at the AFSCME offices and the point of the demonstration was to confront the union in thier support of reopening the state's Lincoln Developmental Center institution (a very bad, bad place), and thier refusal to endorse any legislation supporting home and community-based services for people with disabilities.  (The union represents service workers including nurses and care workers.)  The unbelievable response was AFSCME asking ADAPT to sign a statement supporting institutions authored by the AFSCME director, and when that didn't happen, the director had over 120 people arrested for blocking the doors, elevators and parking lot of the AFSCME building.  (Why the request to sign on to something ADAPT was there to protest is a mystery to me because it makes absolutely no sense at all.)

 

There is no place like home.  Home is where we all get to choose what time we will get up, get dressed and what we will eat for breakfast.  People who are living in thier own place get to decide where they will spend the day and when they will come and go.  When we live in our own home we decide what we will watch on t.v. and when we will stay out late.  Someone living in an institutional setting does not get the opportunity to make these basic day to day types of decisions.  By the way, many people have the misconception that only old people live in institutional settings.  Many are individuals of all ages, including children, that need assistance with daily living activities.  They live in nursing homes and other institutions only because federal funding is funneled into those places rather than the money being allowed to be spent on someone to come into the home to help.

 

No one ever thinks about what it might be like to live in a place where someone else will make all of thier decisions until it happens that a loved one or themselves end up imprisoned in a nursing home.  For a family such as ours a nursing home would mean that we would be told when and if we could take our son home or out for the day.  We would be told when we could visit and for how long.  From the accounts I have read and heard from people who have lived through the experience, I would be hard pressed to even send a dog to one of the places. Most importantly this issue is all about self determination, it is about everyone having the choice of what they want which is a basic fundamental right. 

 

There is absolutely no good reason why funding should not follow the individual rather than the money being funneled into institutions which is what is happening now.  We urge all of you to help support the passage of the Community Choice Act, HR-1621, S-799.  Help us make it possible to allow everyone to decide what is best for them and thier families. 

For more information, photos of the ADAPT action and first hand accounts from the demonstration we encourage you to visit www.adapt.org

We want to see every family and individual have the ability to choose for themselves what is best for them.

 

We are delighted to let you all know that Martin is home and doing well.  Although we were expecting that Martin would remain in the hospital for over a month, he was released in one week because he was healing so quickly and everyone agreed that there is no place like home to recuperate.  He is healing and we are hoping to resume our usual activites soon! 

August 11, 2007

 

We are asking for prayers for our son.  He is in a PICU at fighting for his life.  Our family needs prayers, love and light to see us through the weeks ahead.  Martin’s trach tube rubbed a hole through his airway and into one of the three main arteries right above his heart that leads to his head. 

 

Yesterday evening we were in a forest preserve near the WI border enjoying a picnic dinner with all of the boys and our dog.  Martin had been coughing up secretions that had flecks of blood in it during the day but he appeared fine.  After finishing our dinner, Martin coughed up a large amount of fresh blood that prompted me to call one of his nurses for advice. 

 

We surmised that he probably had an irritation below the trach in his airway so we decided that we should change out his trach.  We did, but at the moment I pulled the one that was in him the blood started gushing out of the stoma.  As fast as I could, I tied down the new trach tube but I knew what was happening.  With each heart beat the blood was spraying out of his trach, his nose and his mouth.  He was bleeding to death and there was nothing we could do.

 

We immediately called 911 and I am still unclear how the ambulance found us.  I could not even remember what road we had turned off of from Route 41 but they found us.  By then I had pulled Martin into my lap.  Martin had let go of his bowels, was gurgling and losing consciousness.  We were both completely soaked and covered with blood, and I was sitting in a puddle of blood and body fluids.  I quickly realized I needed to stopped screaming and crying because it would not make any difference.  So I was calm while holding him close and letting him know just how loved he was and that it was okay whatever he wanted to do.  I kept telling him that if he was tired of living I would understand if he needed to go but no matter what it would be alright.

 

I argued with the ambulance drivers because I knew just how much blood he had lost and I did not think he would make it to the hospital but they told me that I had to let him go and give them a chance to do their job.   The trip to the hospital in WI took 10 minutes but we made it.  The hospital was able to contact our ENT specialist who was on vacation but had decided to cut his out-of-town trip short and return home.  He realized immediately what was happening.  When he asked me what I wanted to do, I told him if it was a fixable problem to do whatever was needed because as far as I was concerned he was fighting to be here.  If he was meant to go he would have bled to death in my arms in the forest preserve. 

 

Our ENT is a hero.  He called the helicopter transport team in Chicago, convinced the hospital we were in to send him to Chicago instead of Milwaukee where they wanted to send him because it was closer, and he assembled a team of 20 in the OR which included one of the best cardiovascular surgeons in the country all within about an hour.  They cracked open Martin’s chest, located the hole in his artery and airway, and put him back together again.

 

He needs everyone’s prayers now.  He had 7 units of blood, his aorta has an infection, he has a tube draining out the blood from his chest, he is swollen from receiving so much blood and on a respirator.  But as far as the surgeon and the PICU staff are concerned he looks really good right now considering what he has been through.

 

We consider everything about this a miracle.  We were told that 95% of the time this happens the child bleeds to death.  If not immediately, it usually happens while everyone is trying to figure out what is going on while in the ER.  We were blessed in how everything worked out but he has a lot of healing to do. 

 

We have been informed that Martin runs the risk of the infection taking hold, a stroke, a hemorrhage, and many, many other issues.  Please pray for us.  Please send us love, light and blessings both for Martin to heal and have strength.  Martin is fighting for his life and wants to be here, otherwise he would have died last night. 

 

Please also pray for all of us that witnessed a very traumatic event that has affected us all.

 

 

We are amazed at the traffic we have had on this site!  We hope that everyone will continue to think about what this issue brings up within each of us individually, as well as what the ramifications of it are in regards to who we are as a society. 

We unfortunately had to disable the blog settings so that individuals can no longer leave comments or trackbacks for public viewing. This decision was made after someone left comments that had nothing to do with the blog.  Rather than continually monitoring the site, we invite anyone who wants to contact us to do so by email at martinsnonashleytreatment@hotmail.com

Dr. Maves from the AMA did send the letter as promised.  In the letter he thanked us for the meeting, he stated he would have the legislative staff review CCA and he did not think that ongoing meetings with the coalition regarding disability issues would be useful.  In regards to the Ashley Treatment, he stated that an opposing statement would not work because there is no AMA policy in regards to it.  All in all it was the response we had assumed it would be, although it was still a disappointment.

We are delighted to let you know that the song "Martin" has been updated with more tracks, including the addition of his siblings singing in the background.  They had a great time in the studio.  Within the next few days we will replace the current version of this song and include a picture of them while recording.

The Exceptional Parent Magazine recently published a position statement in regards to the Ashley Treatment.  We highly recommend reading it as it also covers other recent developments involving human life and dignity which were not well publicized.  Rather than paraphrasing the statement I am including the link. 

We are following the situation involving the 16 month old child, Emilio Gonzalez.  He is currently in a hospital in Texas and the hospital is attempting to remove his respirator, against the wishes of his mother, that keeps him alive.  Although the family has been given an extension of time to find another hospital willing to accept him, we still encourage everyone to sign onto the petition.  To learn more about this issue and to sign onto the petition please go to http://www.petitiononline.com/emilio16/petition.html 

Light and love to all.