22 May, 2010

A new scar

Samuel was released from the hospital this morning and is now back home. He's taking it easy on the couch and needs to nurse the wound in his groin as well as the one on his chest. The new scar on his chest was made to implant the "Reveal" device:
It is literally the size of a USB drive, if a little longish. There are 2 contacts on the side that is towards his ribs that will collect heart rhythms. Here is his new scar:

Any heart-beats that go above or below a certain range will be automatically recorded. There is also a manual device he can use to force recording of an event if he notices he faints, etc. We're not sure how well that will work. We'll need to see. The Reveal will be in his chest for about a year and a half.

Onto the next phase of healing and monitoring...

21 May, 2010

Wrapping up.

We just had a call from the doctor doing Samuel's procedure. She said that they are just wrapping up inserting the Reveal monitor in his chest. She said he'd be out in about 30 minutes.

The study seem to take about 2 hours. The rest has been getting the Reveal in place. He'll be coming home on some anti-biotics and they will need to see him again in about a week. The tests they performed found no issues, which is great and was the objective of this effort; the doctors have ruled out the heart, for now, as the cause of his "fainting" or crashing episodes. Also, that says that his heart was not enlarged, hence, surgery is off the table.

We may be home before 10. I'm looking forward to sleeping soundly tonight. Thank you to al our friends and family that have been praying for this optimal result.


The MRI process went fine yesterday. The hardest part of such things—at least in the case that something like an MRI of the heart that requires contrast to better see the heart—is that to do that contrast, they inject the contrast fluid through an IV. After a less than confident tech wasn't successful getting a vein on an emergency room visit some years back, Samuel is notably not fond of needles now. It can be a struggle to get flu shots and when a blood draw is needed.

The good news is that over time, technology intervenes to make all sorts of things easier. Yesterday, they had some patches to put on his arms where they might put an IV. Once Samuel and I came to an understanding of what we needed to do there yesterday, he didn't really notice the needle as it entered his arm. As it was a bit of a challenge to get the IV in his arm, they left it in for his procedure today.

Here is an image from the MRI they performed yesterday. This blog is going to end up being a literal collection of images of Samuel's heart. Appropriate to the title I suppose.
I'm no doctor, but, in the image above, the heart would look to be the thing in the middle. Looks like it to me anyway.

It is currently a few minutes before 3:00 PM today and Samuel has not eaten and has not had fluids since 11:00 AM. Things are running behind. The case before him ended up needing a pace-maker, which is I believe this is what we are waiting on. Victoria is here with us too, which I think Samuel really appreciated. I know I did.

At this point we have no news on the result of the MRI. Our expectation is that Samuel will have the EP study and one of the outcomes from the left branch from the previous post. They seem to be heading towards implanting the Reveal device to monitor his heart.

Once they take him in, we'll head away for a bit to grab a very late lunch, and then come back. I have an essay to finish editing and a bit of reading to finish for my class on Monday. It's looking like we're going to have a late night here.

15 May, 2010

Congenital Heart Defects are a lifelong issue...

Samuel swam two events with the Branham High school swim team today at the league finals. He swam the breast-stroke leg in the medley relay. The relay team ended last in their heat. I have no idea how they ended in the big picture.

His second event was the third leg of the free-relay. I'm not sure where this relay team ended. It would have been good for everyone if they had ended not at the bottom. For me, I'm just excited that Samuel was able to compete. Two years ago, Samuel wasn't able to swim in the trials (held the day before finals) as he was in the hospital recovering from his second open-heart surgery. That he is swimming on his high school team thrills me no end. That's he's here still to do so is a gift.

Unfortunately, Samuel has had some fainting episodes. The doctors have told us that this is quite common in teens. Usually the doctors would have written this off to that fact. However, due to his congenital heart defect, they want to rule out any potential that an arrhythmia or a leaky pulmonary valve are the cause as this could be cause for sudden death.

There have been about 4 such events in the last 5 months or so. He had one episode a couple of months before his 2008 surgery. He had an episode that one of his teachers said she thought may have been a seizure. Rowena took him to the clinic and they found no issue at that time. He went back to school for swim practice. He had been swimming in the pool and the coach said it looked like he fell asleep in the pool. He went to the hospital on that event and had an EEG, among other tests, to rule out any non-heart related issues.

We had a visit at Lucile Packard Children's Hospital last week to review the tests they want to perform on him to track this down. He will have an MRI of his heart this coming Thursday (20.May). Here is the diagram of how that process may go (this is the doctor's detail to us):

Going down the left branch, they expect no surprises from the MRI, but will gain information about his heart. This will then lead to an electrophysiological (EP) study of his heart—presently scheduled for Friday 21.May—that will allow them to either confirm an arrhythmia and do an ablation to eliminate the problem, or implant a cardiac defibrillator, ICD.

In the case that they cannot confirm the arrhythmia, the right side of the left branch in the above diagram, they will implant a "Reveal" monitor under his skin on his chest which will be there for about one and a half years. He would go in on occasion so that they can download the data collected by that device to see if they can spot any events that may be correctable or of note.

The right branch of the above diagram is not desirable. If the MRI indicates an enlarged heart, the doctors will need to do another open heart surgery. The doctor told us that the likely cause of the fainting and the enlarged heart would be a leaky pulmonary valve. In this case, they would look to operate to replace that. Below that on the diagram, they would look to do follow up EP studies to see if the arrhythmia has been controlled.

In case you wonder, his heart, is an amazing heart. Get a hug from him and you'll know what I mean. With that, we start a new phase of Samuel's Heart...

28 February, 2010

It's just a word.

The whole language debate about what's cool to say and not say is back. This time it's the "R" word, retarded or retard. I find myself in a most uncomfortable position, in agreement with Sarah Palin in believing that Rahm Emanuel should have been fired for his words about liberal activists. I'm a hard-core bleeding heart liberal, so bear with me while I deal with that reality.

I've said it before, and I will say it again, the word "retard" is valid when used to describe something that slows you down or gets in your way. It's not a term to use to abuse or belittle someone. Because when used that way, that's just what you are doing, just not to the person you might think or intend.

I can be in agreement with Sarah Palin because she has a child with Down Syndrome, like I do. There are certain things she and I have in common. We know and experience things through our children that no one else that does not parent a child with notable developmental and cognitive disabilities will ever truly know.

I agree with her that Rahm Emanuel should have been fired for saying that liberal activists were "fucking retarded". If he had said some group of folks were "chinks", or "spics", or…, his head would have been on a plate before dinner time. I don't question that. Do you? Yet, somehow, it's okay that he called them retarded. Why?

I voted for President Obama and to say I'm disappointed at the lack of any further discussion on this is an understatement. To date, no further intelligent discussion on this issue appears to be happening in this country. There has certainly been plenty of unintelligent discussion on the issue. To the extent there has been intelligent discussion in the media, in particular Stephen Colbert points out the irony of Sarah Palin not calling out Rush Limbaugh on his use of the word "retarded." Colbert's bit, while offensive for it's unabashed use of the word, was an actual case of satire. That Sarah Palin not only belittled the issue of Limbaugh but brushed it off as satire, is sad and cognitively dissonant.

My son Samuel has needed his parents, his family, his church, teachers, friends, all to be with him in the process of reaching his full potential. My and my wife's' roles in this process, to the extent we are able, has been to be his advocate. That is my interest in writing this piece; not just for my son, but for all of those with developmental and cognitive disabilities. The truth of the matter is, our kids, our loved ones, our friends with these disabilities are not be able to march on Washington for their rights and for their dignity. Perhaps because of this, the nation, certainly our schools, and now our main stream media seem to feel this word is okay to just toss around (6:35 - 6:45 in the clip).

I'm really quite angry at the lack of sensitivity to a whole population who among our global population are least able to stand up for themselves. As a people sharing this same speeding ball through space, we have a responsibility to be more, to do more, to do what we can to reach our own full potential. Using this term, retard not only diminishes the developmentally and cognitively disabled, it diminishes us and makes it less likely that we as a people will reach our potential.

Being angry and writing about it isn't really good enough for me. I need to do more and I've finally decided that I want to do that directly with Jon Stewart. I'd like to ask him why this language is okay? Stewart has become perhaps the most important journalist of our time, albeit a "fake" journalist. Some of the work he does is quite in depth and he's asking political and social questions none others in the media ask. He speaks to the younger generation like no other media outlet does.

I'd like to find out why it is that attacking this group of people has become free game? I'd like for Jon Stewart to meet my son on his show and look at him and explain why using "retard" is funny. I think I win that debate. From there, I want more. I want Stewart, Colbert, Limbaugh, Emanuel, Ben Stiller, and President Barack Obama to connect with Special Olympics and pledge their support to end the use of the "R" word. I want them to make PSA's to help inform the nation that the time has come to respect and for us all to be that village that supports those in our societies that need it the most. This was the basis for the creation of the Special Olympics, and this should be the basis and opportunity for this country to continue to mature and provide simple human compassion to those with developmental and cognitive disabilities.

I need your help. Please pass the link to this blog post to your friends, family, co-workers. I need a contact at the Daily Show who can get me a spot on that show. I want to do my part to help Spread the word to end the word. Because sometimes, words hurt.