27 March, 2008

Swim meet & updated scar

Samuel had a swim meet today. He swam 3 JV events, 50 Free, 50 Fly (his favorite stroke), and the second leg of the 200 free relay. He was as always, happy to be part of the team on a sunny day (clickage on image, will embiggage):

This is his second length of his 50 free event:

He loves Fly. Here is is heading down the pool. He was looking pretty strong:

He's starting to fade, but a little encouragement and he picks it up.

And his dive for the leg of the free relay:

He was almost to the end:
As always he loves to swim and above everything else, he likes to be a part of the team. His team mates check in with him and encourage him. It's cool to see. I know he feels accepted.

I had promised to get a picture of his scar as it has aged over almost 15 years. I had a camera, he still has the scar and his shirt off... That's all you need:

If you look a couple of inches below the scar on his sternum, you'll see a smaller scar. This is from the drainage tube they put in his chest to drain off extra fluid immediately after surgery. They took it out a couple of days later and dropped a couple of stitches in to close it up. I assume that is fairly standard procedure and he'll likely get another.

What will be interesting about it all, is to see how big the new incision will be and where it will be. Will the incision be as long as his existing scar or will it be longer? Could it be shorter? Will the drainage tube be in the same place? When we meet with the surgeon, I'm not likely to care about this, but if we get past our initial questions and have time, I may ask anyway...

Mr. Smiley:Yes, he is that dark. He has my skin, as does his sister, and he gets much darker as the summer goes on...

22 March, 2008

DORV before and after

When people engage me about Samuel's first surgery, we eventually get around to what the surgery meant or how hard it was for us. It was a fairly different event for Rowena than it was for me.

Up to the point of surgery, Samuel had had a couple of catheterizations. Each of those was fairly difficult for me because I recall the doctor's words that there was a bit of risk with the procedure. They could poke holes in the heart, blood could clot at the end of the catheter, break off and cause a stroke, etc. That scared me.

He of course came through each of them fine and the doctors learned what they needed to know when they needed to know. This helped them determine the extent of his heart's ability as well as the opportunity they would have to do something about it.

The doctors finally decided that the time was "right" to operate on him. We were initially told that he may need up to seven surgeries on his heart, fairly early on in his life. One of the procedures they mentioned was a Glenn / Fontan. This was due to the fact that his left ventricle was "small-ish". This would have left him with a single chambered heart. Imagine if that had been the case, now with his current diagnosis. That only occurred to me this morning!

In the end, Samuel grew well and his heart growth kept up with him. That meant that a simple repair or what I would call a re-structuring of the heart by adding a patch, was the plan they felt was all that was required.

It was finally surgery day. I requested that my brother, Jorge, come for moral support and he agreed. That morning, we took Samuel to the hospital and gowned him up. As we were waiting in the room for someone to come get him, I asked my bro to take a "before" picture of his chest - it would be the last time his perfect little body would ever be so. It's a little washed-out, but, you 'get the picture'. :)

At any rate, the anesthesiologist came into the room to get him. I don't remember his face but he was a kind chap who was clearly comfortable with young kids. Jorge and Rowena both gave him a kiss as I held him. I then gave him a hug and a kiss and handed him over.

We left the room and headed to the car. I remember immediately feeling relief. We had gotten him to that day, the day of repair, alive and healthy. Healthy meaning that he didn't have a cold, there was no reason to postpone the surgery.

We drove to downtown Palo Alto for breakfast, all of us rather quiet. As we sat in a booth and looked over the menu, my brother looked at me and said, "I don't know how you did that." I said, "what?" "Handed him over and not just break down. I was crying in the car all the way here." said Jorge. I told him, "I'm relieved. I'm just glad because he is where he needs to be. They are going to fix his heart."

And that is what they did.

Samuel was back home in about 4 days. Young kids heal really fast. Here is is, with his newly minted scar six days after the surgery:
I'll post up a newer picture of his scar as it has "aged" over 15 years in the coming weeks.

What's funny about Samuel is how he talks about his heart. Over the years, we have had to help him bathe, or put lotion on his skin. When we do, on occasion, he will take my or Rowena's face in his hands, look us straight in the eye and say, "you'll always be in my heart." When he does this, I always say to myself, and sometimes right to him, "Yes. Yes I will."

Finally, as I was talking with him one day about his upcoming surgery, I was reiterating that the surgery was to fix a problem with his heart. I went to great pains to double back and explain to him, that his heart that loves, his heart that cares about people and us, is *perfect*, and that nothing was ever needed to fix that. I didn't see any confusion on his face.

20 March, 2008

DORV repair

Rowena is amazing... She kept all of the drawings Samuel's doctors gave us when they explained Samuel's heart condition to us shortly after his birth. They started with this "schematic" drawing to help us appreciate what a normally formed heart looked like and how the blood flow works (with color coding! - BTW, clicking on any image will give you a larger version): Those lines in the middle of the heart that the red and blue lines traverse represent valves (blue - tricuspid, red - mitral), as do the ones at the bottom going into the great vessels (blue - pulmonary, red - aortic).

Then, they drew for us Samuel's heart in a schematic representation. Key to understanding what happened to his heart during development in the womb is that the Aorta, in most hearts, migrates from the right ventricle over to the left ventricle. Then, almost immediately after birth, the hole between the ventricles (all hearts have this at birth) closes up and all is well.

In Samuel's case, this didn't happen. The aorta stayed put and the hole (VSD) did not close up. This diagram also shows the small mitral valve:
The indication of the blood flow shows then that of course, he was literally a bit "blue" in color. While if you looked at him you didn't jump up and go, "ewwww - he's blue", he was really just kinda dusky. This became more obvious after they did the repair and he "pinked up" to a nice, reasonably normal rosy color.

Here is a diagram of about what his heart looked like:
If you scroll down and back up, between the image immediately above and the very next one, looking at the vessels that remove blood from the ventricles, you can see how the aorta did not migrate (above).

To help put the above drawings into context of the human, as opposed to schematic, they added the arrows below indicating the blood flow first in a "normal" heart:

Then, the colored arrows are added to a diagram of Samuel's heart:

The doctors at Stanford / Lucille Salter-Packard Children's hospital determined that they could operate on his heart and make it schematically correct, by adding a baffle, using some cloth, in the hole (VSD), across to the space between the Aorta and Pulmonary arteries.

After the surgery, we talked to the surgeon. He told us things went well and more. When we were about done, I asked him, "do you have the material that you used for the patch?" He looked a bit stunned or puzzled, but said that yes, it was probably in the trash in the operating room, would I like him to get it? I said yes.

They use some special dacron, as I recall, for this purpose. Here is a scan of that material (the missing piece below - that's in Samuel's heart!) that we still have:
I asked Rowena to scan it w/the dime for scale reference. I still say wow when I see that... Over time, the heart tissue grows over the cloth and it is incorporated into the heart itself. Wow.


This blog is for friends and family to keep up with us as Samuel heads to and through his open heart surgery on May 1.

For those that come across this page, Samuel is my 15 year old son with Down Syndrome. He was born with a congenital heart defect known as Double Outlet Right Ventricle (DORV) with a notable Ventral Septal Defect (VSD) and a small mitral valve. The DORV was "repaired" using a dacron patch across the VSD via open heart surgery on October 11, 1993 when Samuel was about 7 months old.

About 5 years ago, he was diagnosed with a muscle bundle in his right ventricle. The clinical diagnosis for this is Double Chambered Right Ventricle (DCRV).

As this has been monitored, Samuel's pediatrician / cardiologist has finally determined that he must now have surgery to repair this defect. He had been putting this off as long as possible in the hopes that this could be done in a non-invasive manner. Alas, this muscle growth out-paced technology, so this procedure will be open heart.

With that, I'm planning on being as raw as possible. I plan to share pictures right from the hospital and as much data as I can put up here, in as timely a manner as possible so that folks that care can follow the process.