It was a year ago yesterday

Just 1 year ago today, we were starting the process of helping Samuel recover from surgery to repair his DCRV.

In the time since his surgery, Samuel has been the most amazing human. He has never whined, complained or griped about what he went through. Maybe it's because he is a teenager with DS, or maybe it's just how he's built. But if there is one thing I take away from this experience about my son, it's that he is probably more optimistic than me. And that is saying something.

Samuel went into surgery at about 125lbs. He weighed in at his annual check up last week at 121. He is nice and tanned now as he has been swimming on his high-school swim team since January. He stays fit swimming, playing basketball (he took the middle of the three-game series today), works-out at the gym, power-lifting, and dancing at home.

I actually worry sometimes that the process went so well, we must have missed something. I worry about both of my kids. My eldest will be heading off to college in the fall, and I trust that will go well - she's ready. I'll miss her and will of course worry when I don't hear from her. I know she'll be fine, but - I guess that's what we sign up for when we choose to become parents.

Anyway - with Samuel, I just wonder. In the surgery, they not only stopped his heart to take out this excess muscle, but after starting it again, they found the leak that also needed to be closed off and had to stop his heart a second time and go in through the aorta to get to that. I love science and just stop in jaw-dropping amazement at times with what science can do.

It's like, this rant I saw where this guy was on one of the late-night talk shows and he noted how folks complain about how long it takes to get to New York from California. What, five hours? People, it used to take months, if not years and people would die along the way! You get to get in this thing called a plane, sit in a chair, and get delivered across the country in *five* hours. That is still amazing to me. So, get to talking about stopping hearts, taking out excess tissue, sewing up holes, and starting things all-over again, replacing organs, faces, eyes... I am in awe of what science can do.

All-in-all, it's been an amazing year.

Update - 4.5 weeks out

Samuel is doing well almost 4.5 weeks since his surgery. He is back to school and just Friday asked to be back to full days. He likes to ride the bus home, so that was part of it.

Still, you can see him getting stronger. He is obviously favoring his chest as the sternum continues to heal. is wound is also getting easier for him to touch. He can pull a towel down his scar lightly and that is huge progress.

We also went to the gym for the first time last week. We saw Dick Corson there and I think he damn near fell off his bike when he saw Samuel there. It had only been 4 weeks since this kid was laid up. I have no idea what was said between them, but as always, Samuel was thrilled to see Dick and have the sort of human contact he cherishes that connects him to the world.

Upcoming for him is his sister's graduation party where lots of family and friends will be at our house. Then, in July, he'll go to camp at Camp Costanoan for a week of sports, frolicking, and friends. These are his 'peeps' and he loves his time there.

For us, we're happy and much relieved. The whole process went off without a hitch and his recovery has been astounding from where I sit. And, the future is always a mystery. As a very good friend of mine has said, parenting is not for sissies... I'm not sure what constitutes a sissie, but I echo the sentiment.

2 weeks out

2 weeks ago today, at this time, (link is surgery photos ->) Samuel was on the table and doctors were fiddling around in his stopped heart. He looked like he was held together with bailing wire and duct tape when they were through with him.

Having been home just over a week, his lung capacity is doing really well. On the little breath-o-meter device he was sent home with, he was able to get it up to about 1500 mL of Inspired Volume. For reference, he was having trouble getting it to 500 mL in the hospital.

I was working at home today. He came up to me and told me he wanted me to remove the tape on his wound. We had been told it was okay to remove (no, nothing will spill! ;) or that the tape would just fall off in time. Samuel really wanted it off. So, I took it off:

Click on the image below to get a better view. You can see the tissue melding together, becoming once again, a single intact organ:
What is interesting about the scar is that they went right over the top of the old one, almost exactly. Except at the very top. The part at the very top of the sternum, just below his chin, had a slight arc to the left form the original surgery. The new scar tips a bit to the right. I wonder if that is on purpose...

Anyway, he let me use the wipey things (adhesive tape remover) they sent us home with to clean off the adhesive schmutz from his belly. I was somewhat surprised that this was tolerated by him really well. The hardest part was not tickling him while doing that.

I proceeded to help him with his shower and was able to wash all but directly over his scar. He was actually able to let the water hit his scar and was pleasantly surprised that it did not hurt (told ya!). However, one cannot come too close to the actual wound as it is apparently still quite sensitive. He was digging looking at the wound sealing up in the mirror right after his shower. His reaction is much like mine, one of amazement at the ability of the human body.

As I am back at work, Rowena's days still are mostly hanging around, doing activities with Samuel and taking walks. On Saturday or Sunday, we all walked in the park and took the camera looking for April (we saw her today - no camera - she's getting big!). We also saw a young woman practicing her pitching:



Those weren't her best pitches. She made that ball pop in the glove. Samuel provided the music in this clip.

Samuel has been given the go-ahead to go back to school for half days. He went and visited yesterday and was really thrilled to see his friends. He will start back on Monday. He'll also be at church on Sunday. It's only been 2 weeks since his heart was stopped for 145 minutes. 2 weeks. Is that possible? It would seem so. The human organism; just amazing.

Beauty

Samuel isn't really supposed to go out in public places so that he stays away from too many germs. We need to avoid him getting sick. This is for about 2 weeks from his release from the hospital. One can begin to see the signs of "stir-crazy" on occasion. He is actually managing fairly well and seeming to get a bit more mobility in his torso. I've heard him rock-out on his drum kit a few times.

Ahead of his surgery, we had scored tickets to the the final dress rehearsal of Beauty and the beast presented by the American Musical Theater of San Jose via Special Olympics of Northern California that was on stage last night in Downtown San Jose.

Samuel participates in a few of their events, notably, Floor Hockey, Basketball, Softball (sometimes), and Power Lifting. It's fun to do these sports, and it's really nice that groups like the theater company and others make such things possible not only for him, but our whole family.

He was quite anxious to go before the surgery. The date and time of this event were a regular topic of conversation in our home this whole past week. I was very excited to go to the play to see the lead actress after I read an article in the Mercury News about Nikki Reneé Daniels performance in the role as Belle.

Alas, just as I had said this to Rowena moments before the lights went down, the guy comes out to welcome everyone, give thanks to sponsors, etc. He then proceeds notes that the role of Belle was being played by the understudy last night as Nikki had sustained a minor injury... sigh.

All in all, we all enjoyed the performance. I would say that I don't think it was quite Broadway quality and there were sound problems that I didn't think they should be having the night before their first performance. Samuel cared about none of it. He loved it and we all left singing our favorite tunes. Samuel doing his best finger assisted vibrato. What is that you say? I'll have to video that sometime and share that out. It's pretty unique...

The walks in the park and around our neighborhood continue as have the get well cards. I am stunned when I look at all of the love on our piano...
I hope it's not old by now; we are blessed. Thank you all.

p.s. - the music cards are a real hit. The Foyle's and Pete & Nousheen sent a James Brown, "I feel Good" card. Perfect. Plus, ya gotta grove to that... ;)

A goose in the park

Samuel announced at about 10a that it was time for a walk. Off we went to the park...
A few days ago, we ran into a woman who had a young goose with her. We spoke to her for a bit. The goose is now 8 weeks old and she had named it April, as she adopted the goose in the month of April. Cute. Unfortunately, we didn't have the camera with us that day. I've been taking it with us ever since hoping to catch a picture of this little fowl, cause it is really cute.

We were rewarded today:

The gosling follows her owner like her natural mother. She stays behind her mom just like you see baby ducks or other water fowl that you see in the wild or in the parks.

We watched some high school girls working on their basketball shots and a father getting ready to help his son with batting practice. It is another glorious day and lovely to be out and about

Walk On

I took a day off yesterday. I was tired and, I spent a lot of the day walking hither and yon with SamBurger. Walking for now will be his best activity.

I ended up pushing him a bit to much yesterday. I'm eager for him to get back to "normal" for him, and, I need to listen to him better.

I spent the morning working in the yard, mowing, skirting the big tree in back. Samuel and Rowena took the morning walk. After lunch he and i strolled to the park and enjoyed yet another gorgeous day.

For now, that's the routine - Walk On.

p.s. - We just received a lovely plant basket from SourceForge Inc. (my employer). Thank you very much for thinking of us!

There's no place like home

Ruby slippers? Not here...

We were anticipating release today in the case that the morning's X-Ray was deemed to indicate that his lung was clearing up well:

Sure enough, it turned out well and we were told we could take Samuel home. We packed up (it's amazing how much stuff we had) and walked out of the room around 1:00 PM:

On 280, Samuel crashed:

We arrived to a bright, cheery welcome:

Samuel was really happy to be home:

Hula was glad to have him home too:

As for us? Great relief, joy, and, blow-you-back amazement at what has just happened in the space of 1 weeks time. Now, the mundane and critical work of getting Samuel back to playing basketball, swimming, lifting, dancing... All the things that make up the active life of a 15 year-old. It's life, as we know it.

Thank you again to all of you who have come to visit, have kept us in your prayers, and who have sent cards, gifts, food, balloons... We are blessed, beyond what we even realize or can imagine. Thank you.

Cleared for take off

The doctors just did their rounds and have cleared Samuel to go home!

The nurse (Gina) is removing his IV's now. We're packing up and will boogie as quickly as possible. "Within the hour" says Gina.

Still Sleeping

As I type, Samuel is still sleeping. He had a great night and slept until the bloody nurse seemed to think that weighing him at 3:30 AM was a great idea. I hate to seem pissy, but I just don't get that. I think his weight at 7 or 8 in the morning would be about the same...

At any rate, he slept laying down flat, a first, and is presently sleeping past his normal 6:30 am wakeup time. Oy.

I'm going to go have breakfast and hope he is still sleeping on my return. I think I'll do the grab and go.

Heart photos - preamble

Samuel just had a post-surgery echo-cardiogram. While we were in the room, the doctor that took photographs during the surgery, Dr. Silverman, came by and let me know he had the pictures ready and was going to meet with Dr. Hanley first to make sure that he has all of the descriptions correct.

I'm waiting to meet with him now and take the hand-off. I'm likely going to put up a post with these this evening. I'll label the post - Samuel's Heart - cause guess what, his heart will be the main subject. In person, as it were.

I'll give a warning at the top of the post. If you are getting these via email and not sure you are gonna be ready to see my son's heart, you may just want to delete that message.

Tube free!

This post has images of Samuel's chest tubes being removed. One includes a gooey mass of blood clot. You've been made aware, don't scroll past the hash marks (#) if such a thing will gross you out, make you puke, or otherwise make you dizzy, etc. There are other images I consider less potentially challenging of his tubes in is body. You may find those a bother. If so, don't scroll past the second photo.

Meet Katie, the Physician's Assistant:She is not a nurse, but a licensed P.A. who actually assisted in the surgery. She is really nice and very professional.

This is Samuel's nurse today, Abbie:
She was in the process of giving him morphine in preparation for removal of the tubes they inserted last Thursday during the surgery.

Here Katie is just removing the bandages that have been protecting the wound around the first tube (right side):

Here the bandage is removed from around the second tube (center):

Here is the work to be done - remove the 2 wires (pacing wires that were never needed [yay!]) and 2 tubes:

Katie yanks (literally) the first pacing wire after removing the stitch that held it in place:

This is a moment after the second wire was yanked:
The little blemish to the lower left of her middle finger is the mark / scar left from this wire.

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This image is just missing the tube that was in the center position of his chest. The thing that looks like a long skinny reddish slug is the blood clot I had mentioned:
As she closed off the wound with stitches that were in place the whole time, I could still see clot on the wound. I have to admit that I had a little anxiety that it was a body organ, but was assured (as I'm sure other parents have been - thinking it might be intestine or something) it was just clot.

Here, Katie removes the knot holding the right tube in place:

The right tube is yanked:All of this yanking was fairly traumatic. Samuel hollered with each one. I'm trying not to imagine what that would have been if he didn't have the morphine.

2 more, possibly 4, new scars are born:

It was a bit more intense than I might have guessed. It left me a little light headed. However, I am much more relived that we have progressed this well and that Samuel is less dependent on technology now. He is on 1 litre of O2 now only. He is still having his vitals monitored.

The whole process of this was a bit stressful as Samuel was fairly agitated as they were yanking things out. I held his hand throughout and was glad to be there for him.

Chest tubes

Samuel is feeling much better. I showed up today and he was ready to go mobile. We took about 3 laps around the third floor common area. He was feeling strong and a bit more like himself. With the tubes in, he struggles to stay upright. I don't know what it means to have tubes in my belly, so I do my best to help him stand straight.

The doctors just did their rounds. The two women below are the Nurse Practitioners (I believe) that have been following his case. Samuel is definitely back to normal attitude-wise. He asked if she (the one in stripes) was engaged (she's not):
I asked him if he had plans. He didn't respond.

He had an X-Ray this morning and an EKG. They have determined that the chest tubes aren't draining as much fluid as they had been and his X-Ray shows the lung much clearer than yesterday.

They decided to pull his chest tubes. If the X-Ray of the lungs tomorrow continue to be clear, he will be released tomorrow at 1:00 PM. However, if not, they will see how he is doing tomorrow.

They really want to pull that neck line and the other IV lines in his arm. There are just 2 of the lines in his right arm at this time. They want these out as they offer potential for infection. However we have been really clear that having them in is a good thing if they are going to need to draw blood. We have been clear with them, if you don't have one of these lines to draw blood, you are going to be on your own to hold him down and deal with the process of getting the draw you need. They are going to leave the lines in for now.

The nurse will be in here momentarily to give him some morphine so that they can pull the tubes and complete the creation of 4 new scars (2 chest tubes and 2 sets of pacing wires).

Quick update

I wasn't as able to get updates and other stuff up yesterday. Samuel is mobile. Plus, I was really tired. We're getting ready to go for another walk. On our return, I'll be giving a chest tube update.

Last night - This morning

Samuel seems to be much more himself today. I'll pick up from last night... Here is a blurry image of the echo they did of his lung:

A bit after he took a laxitive, he barfed and it mussed his central line dressing. I took this as they were cleaning his neck to replace the dressing:

His clock is really off, or at least it was last night. We watched Iron Chef America which ended at 10p. I turned it off and told him I was going to sleep. He said that he wasn't ready to sleep yet. I asked him if he wanted me to order up a keg and invite in the dancing girls. He declined.

If you have never spent time in a hospital, I don't recommend it. Particularly if you want rest. While it is a healing place, it is not a resting place. The old joke, "hey, wake up, it's time to take your sleeping pill" was created from experience. As one falls asleep, someone comes in to draw blood, give medicine, or turn off an alarm. Samuel fell asleep a few times. I was able to get a couple of hours sleep in between too.

At about 7a, I went down to the cafeteria for breakfast. This cafeteria is generally fairly expensive where eateries are concerned:
However, for just under $4.00, you can get a full meal of eggs, sausage and toast with butter and marmalade. The coffee is extra. I'm still sorry I didn't invest in Starbux back when...

I came back and Samuel's breakfast had arrived. He actually wanted to eat. He had a choice of Cheerios or scrambled eggs with bacon. He told me he wanted the cereal with milk:

He was diggin' that. Throwin' out a peace sign to y'all:

He ate the whole bowl *and* kept it down:

Rowena showed up and brought him a picture of his beloved dog:

Hula:

The Left Lung - Update

The left lung is *not* collapsed and they will not be putting in a drainage tube. There is fluid on the lung, but not enough that calls for the tube. Phew!

They are giving him Lasex to cause him to drain off extra fluids. That's a good thing. It would be better for us care-givers if he still had that "tube" in place as any "extra" fluid, comes out of one place...

Rowena is home and getting to bed by nine (meaning that you aren't reading this entry luv! ;). My sister was here and was a big help as Samuel is still vomiting on occasion. He hasn't been eating, so it's not a pretty thing. Samuel was quite thankful for her presence as was I.

I can't get TNT here, so no round ball. I see the Lakers and the Celtics both won their first game of the series. At least I have net connectivity... :-/

The left lung

Update (1:00 PM): I forgot that the team here is going to to an Echo of his lung first to try to better determine what the case may be with that lung. Rowena reminded me of this as well as that if it is a collapsed lung, that they will do some therapy (thumping on his back, etc.) to help bring it back. end Update.

Samuel's left lung has something going on. They just took a new X-Ray to get a better look to find out what's going on.

This is a blurred view of the image they took this morning taken from the screen of the wireless cart the Nurse Practitioner was reviewing:
From the image on the left, you can see more whiteish tissue on his left side. This is the lung. The right side looks appropriate. That means there is either fluid in the left lung that needs to be drained, or the lung is collapsed. We'll find out in a moment which one it was found to be.

If it is fluid, they will take him back to the ICU, drug him up, and insert a tube into that lung to drain off the fluid. I'm not sure what they will do if it is a collapsed lung. Inflate it I suppose. I'm not quite sure how that is done. I suspect it is fluid for my part. I hope not.

A scar is born

Photo of a new fresh scar below - be aware...

Samuel is having a bit of a rough time. He has had some nausea and breathing issues. More on the breathing later. The team here has removed his arterial line that was in his left wrist. This was used to draw blood while he was in the ICU. He still have the neck line, lines in each arm at about the elbows, and one in his right hand. He is not currently on any IV fluids of any sort.

Rowena stayed here over night. I went home and took care of business after the swim meet. Checking in with Rowena this morning she noted that Samuel seemed to have slept reasonably well, though she did not. She looks tired. It's hard getting rest here, so we do the whole platooning routine. She'll get to go home tonight. I want to send her home sooner than later. I think she's going to fight me on it today...

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He yakked earlier and some ended up on his chest bandage. The nurse was allowed to remove the bandage and reveal his newly minted scar. The photo below is not real graphic and not really close up, but it is still a picture of a notable incision Be aware.

I'm no doctor and believe that the wound looks good. I've cut myself enough to know that as there is no reddish areas, puss, or puffiness aside from what is expected, his wound is healing nicely:

The white stuff at the bottom is a lot of gauze that they have packed around the 2 chest tubes that are still in place. There has continued to be drainage from the chest, so these will stay in until that subsides.

Above the gauze on the lower right is a wire. This is a pacing wire that is not connected externally (it goes into his chest and has connections on the heart itself). There is another one on the left that you can't quite see. They would use these in can emergency if they needed to get the heart a better rhythm. These wires are unused at this time.

3 West!

Samuel is now where he has been looking to be, 3 West. This is the "West Wing" of the 3rd floor at the hospital. This means that he is no longer considered in need of intensive care and will hopefully begin a bit more mobility.

I left early to take in Victoria's last swim meet of her high school career. I caught her swimming in the 200 free relay and in the 100 back-stroke. She rocked. She finished her swimming career swimmingly (ya ya, I know, I went for the cheap laugh. What? not even a laugh? oy.).

I hear that another angel took my lovely wife to dinner while my sister and her husband hung with the Sam-burger. A couple of other angels, the Starr's were there when I left. It turns out I owe Ken *big-time*. Not only did he help with a bunch of un-pleasant stuff, most importantly, he helped out when the nursing team removed his "u"-catheter (**all guys shiver**).

Another friend was there too I hear. All-in-all, it sounds like I missed a party. However, what is good is that Samuel seems to be coming along. We are going to have to focus all spare time getting him up, on his feet, and moving around. He is really *really* sore all over, and the best way to solve that is to get moving.

I'm going to get to bed early since I didn't get much sleep last night and perhaps get to the hospital around 9 or so. Progress feels slow. One can't deny, it is progress.

Day 3 update

Samuel has had a little more pain today and they have given him a bit of morphine. To get him started on moving around, a therapist came in and we had him get out of bed and into a chair. This helped him cough a little and get some crud out of his lungs. We have a device to help him with this as well that he needs to breath into. The deep breathing will help him cough which will help keep his lungs clear and ideally avoid him catching something nasty like pneumonia.

Once Samuel made it back to bed, he has been sleeping. That really tired him out. Victoria showed up about then for a visit ahead of the Blossom Valley Aquatic League (BVAL) finals. She brought Samuel one of the shirts from the meet going on today at Independence High School:


We went for a stroll on the roof where there is a garden that is in full spring bloom:





Oh, from there I could see a hoop:I'm going to have to track that down and throw down some skin. Huh! That's right, I'll be dunkin' on that sucker, cause, that's how I roll.



Victoria headed off to the meet and we had lunch. When we came back there was someone finishing up an X-Ray on Samuel. We need to keep working on his breathing, getting him up outta that bed and moving around. He wants to move up to "3-West", so hopefully that is sufficient motivation. Of course, he has already asked to just go home. :-/

Sunrise

Any of you that have gone to my church may know that I go in for sunrises in a big way. It was nice, though clearly not the same, to see this one today from the filthy window from Samuel's room, overlooking a parking lot:
Samuel slept through it...
Meh. I enjoyed it.

Samuel had a bit of a rough night, sleep-wise. I think his cycle is off. It's about 7:35 as I type and he is sleeping. Of course, he is fairly bored, so what else are you gonna do? Only, last night, on my last entry, almost as soon as I had typed that he was asleep, he woke up.

He is able to take clear liquids now. I have been giving him water to drink. He is also finally noticing that his chest is sore. He complained about this last night. I made sure to remind him that we had told him this would be the case. I like to think that Rowena and I did all we could to be open and honest about what was coming his way. I think he knew pretty well too, probably more than I had thought. I saw him showing a young friend of his how his chest would be spread open. I don't think he had any illusions about the process. Yet, what can prepare you for feeling like what I can only assume must feel like you were ran over by a truck?

The day begins with a new nurse for 12 hours. I'm hoping they are able to remove the chest tubes (1 renewed scar and 1 new), and that he is able to get up and walk. I know he is anxious to go walk-about.