Taxes make a difference in lives.

I believe in paying taxes and I hope you do too. Here's why:

Samuel is allowed to ride his bike around our block. He doesn't do this anymore now since we took the training wheels off of his bike, but when he did, we asked him to ring his bell when he came by the house. We knew about how long it should take for him to complete a circuit, so this helped us know he was okay without having to just sit and watch and it allowed for a certain amount of independence.

The last Saturday in June 2006 (Samuel was 13), we finally noticed that he was gone for a longer while without checking in. First we walked around the block to see if
we would meet up with him. When we didn’t see him we got in the car and drove around the neighborhood looking for him.

We belong to a cabana club so we went by there, which is almost a mile away. He wasn't there. We told some friends who were there that if they saw him to grab him and hold him, then call us. We drove around our neighborhood a bit more. A friend that had been at the pool dropped that and went in his car searching our neighborhood and called his son to get on his bike and do the same. After driving around for about 20 minutes I went home and called 911 while my wife continued to drive around.

While on the phone with 911 and giving them the pertinent details, including that he has Down Syndrome, not a minute later a San Jose Police Department (SJPD) helicopter started prowling around over-head. The 911 operator told us that this chopper was looking for our son. I had been getting upset at the possibilities. The chopper made it all too real and the emotions took over; my tears began to flow. I held it together as best I could in talking with the 911 operator, but it was not easy.

A few minutes later a patrol car pulled up in front of our house. The officer in that car took over from the 911 operator. We told him that Samuel was wearing his bike helmet that had black and white checkerboard with flames at the front, a bright blue tee-shirt, and off-white shorts, riding his yellow bike with training wheels. The officer said that he was the site commander. Other patrol cars came by, perhaps two or three, and took direct orders from the site commander. In all, based on what our neighbors and friends who had also taken up the search in their cars said, more than several patrol cars were engaged in the search.

We were on the phone with friends that were searching constantly, but I stayed planted at home now while my wife continued to drive around, gradually increasing the perimeter of where she was driving. Needless to say, it was very difficult emotionally. He had never done this and in cases where he had wandered some, we had found him quickly. This was out of the ordinary and definitely scary.

After a while one of our friends called from the pool. Samuel had been riding by on his bike. One of the folks from the pool that knows him, saw him riding by and managed to get him to stop and come into the pool area. He didn't want to and told her that he needed to get home. She said that he was hot, sweaty, without his shirt, and looking a bit disoriented. It was a 100+ degrees that day and he did not have water with him. Our friends called us from the pool to let us know that he was there and that they were giving him fluids.

We told the police he had turned up at the pool. They asked if it would be better for his mother bring him home or them. We said no, we want the police to bring him home, hoping that he would get the message: kid, you scared the snot out of us!

The site commander sent a patrol car to get him and his bike. As he rolled up, sitting in the perp seat (back seat), he was waving out of the window to us, seeming to be excited at the special treatment. As he exited the car, we hugged him, told him we loved him, hugged and kissed him, cried, and then began the effort to explain to him how scared we were.

He had ridden about a mile and a half away to see a young lady at our gym that he liked to flirt with. My wife had stopped by in the process and learned that he had stopped, and then moved on. He was in his community and he was looking to touch someone he knew where he knew they should be, just wanting to be like other kids his age. All told, it was a happy ending.

So what does this have to do with taxes? Everything. Have you ever wondered how much it costs to fuel a chopper? Train the pilot? What does it cost to put four to ten police cars on the street for an hour, just driving around? The salaries of all those cops and the dispatchers? The equipment they needed to do all of that efficiently? I sure can't guess.

It is clear to me that our taxes are needed and I have never had a problem paying my share. The services our taxes provide every day are real and are all possible because of you, me, and corporations.

I think I pay not only my fair share, but likely a bit unfairly more than my share. I certainly don't think that the taxes being paid by big oil companies is commensurate with the record profits we keep seeing reported. The current administration has given corporations huge tax cuts in the hopes that this will trickle down and provide more jobs and investment in our communities. I don't think we can say we've seen that fruit sprout, do you? Not when it can be farmed out to countries where labor is only pennies on the hour. McCain proposes more of the same. I'm not sure how much more of this we can take as a country.

I believe that we need to balance the tax equation so that you and me, the working folks of this country, can have a chance at getting our kids into colleges and actually be able to pay the tuition. I think that corporations need to pay their equitable share and help keep America strong and balanced, socially.

I'm willing to pay what is required of me. Our taxes save lives in so many ways. I hope you agree and help do something about the politicians who are looking to give corporations yet even more tax breaks. This political season, there is a choice. A change of parties in the White House is needed.

Upcoming...

I have two articles to write this weekend; one on paying taxes and the other on this article.

On Special Needs Advocates

Much has been and will continue to be written about Sarah Palin. For my part, as a liberal democrat, I really have nothing to add for her politics. I just don't agree with her or McCain. I believe that the policies of the current administration have damaged this country and that the current republican ticket is more of the same.

What is interesting to me about Palin is her last child, Trig. He was born in April with Down Syndrome. In her speech to the RNC this week she spoke directly to me and other parents of children with Special Needs and said, "you will have an advocate in the White House.".

Well, I suppose that might be interesting to see. From what I am reading about her, she is a career woman and even in that, she has taken Trig along with her out and about. I'm not prepared to comment on her parenting cause I'm not one of her kids and I can't assess what kind of mom she may or may not be. In the end, it's none of my business.

What is my business is the idea that she might be an advocate for people with Special Needs. From where I sit, I'm gonna call bullshit on her suggesting she has the credentials for that role. An article in the New York Times indicates that this has not been part of her history as yet as the Governor in Alaska. There's more there, this is a recommended read.

First, I've been struggling with this blog and how to proceed. It was an effort for me to be able to process my son's surgery back in May. I've put up a few posts since and have been getting feedback that folks are still enjoying reading what I have to say and are interested in Samuel's life and continued growth and recovery.

Too, with this nomination of a parent of a child with Down Syndrome, I've had a couple of folks ask me about this and what I think about it. So, here goes...

As I said earlier, I call bullshit on Palin being an advocate for us parents and our kids with Special Needs. I say this because I don't see how she can. She's busy on the campaign trail and from what I can tell, her husband is too. At the same age Trig is now, we were busy taking Samuel to early intervention. Early intervention
(EI) is a wondrous thing for all kids that are identified and placed in such programs. I say this from first hand experience.

We took Samuel to EI twice a week for his first three years from when he was 2 months old. Rowena and I had the good fortune to work at a place that allowed us to take the time to work at home one day a week so that we could both participate. I would take him on Thursday's one week and the following week on Tuesday. Rowena would alternate the days with me.

These classes helped us learn how to stimulate him and work with him. We learned that instead of wiping his mouth like you would any other child, generally away from the mouth, that we should wipe inwards towards his mouth to help stimulate the muscles and improve oral muscle tone.

We did all kinds of things each week, and we always shared what we did after each class with each other so that we were consistent with how we worked with him. It is a constant effort that continues to this day. I notice that Rowena and I *still* wipe his mouth, when we need to, towards his mouth, not away from it, because we just don't know how to do it any other way now.

After early intervention, Samuel went to a pre-school program for a couple of years until he was of age to begin Kindergarten. When Samuel was born, I apparently told one of our pastors at the time that as our son, our responsibility to Samuel was to help him be the best Samuel he could be. So we sought to have him included (see: http://en.wikipedia.org/wiki/Inclusion_(education) )in the regular kindergarten class environment.

When Victoria was born, I began speaking Spanish to her exclusively at birth. I did this until she was in about 6th grade or so. When Samuel was born. we wanted to do this, but didn't know enough about Down Syndrome and learning, etc. We asked the social worker who was assigned to us at the hospital. She told us we might try to teach him a few words, but that it might confuse him.

We asked the nurses, who didn't really know. We kept asking folks we came across. We finally asked his pediatrician who said to us, "Of course you do. You treat him the same way you treat Victoria. If we see it causing problems then we'll rethink it." Or something very close to that. That's when we finally realized that we were asking because we didn't like the answer we were getting. Our instincts told us that speaking Spanish to him would only be a good thing.

That's what we wanted to hear and that is where and when we started our journey as Samuel's advocates.

So, we followed our pediatrician's advice and that is how we have treated him all along. Our expectations of him are very high, and therefore our view of what and how he should be treated / managed in school are along the same lines.

What Sarah Palin can't do for us as parents of Special needs, is to understand what it all really means. She and her family will never know what it means to have to fight with the school district to get such a placement. She and her family will never likely have a school psychologist tell her that as "the professionals", they knew what was best or her child. The Palins will never have to deal with a principal who doesn't support their efforts at something different than what they knew. They will never have a lawyer attend an IEP meeting to assure that their rights are not violated.

Sarah Palin will *never* be in a meeting with teachers that is supposed to be about process, have it turn into specifics about her child, seek to exercise her rights, and have the Director of Student Services threaten to call the police and have her arrested because she began to record the meeting.

I'm not advocating that pain for anyone. However, I think that as a parent of a child with special needs, having made the choices she has made for her and her family, make such experiences for her, hence her ability to be an advocate for parents like us, virtually impossible. This journey for them as a family is just beginning.

Does that mean if you are a parent of a child with Special Needs that you shouldn't vote for her? I don't know. I know that because she has a child with DS that it doesn't really mean anything to me. I just think that she shouldn't be dangling hope to parents like me that she will be an advocate for what matters to families of kids with Special Needs. I'm not sure she has that credential just yet. Let her and her family live in the shoes of folks like us, where you need a village to help make things happen.

No, having been blessed with your lovely son Trig is not enough Governor Palin. Live the life. Be the parent. Be the advocate for your child. Then, come talk to me and let's see what may be done. I'd be happy to advise you on the issues that face you on your return to Alaska as Governor to help the families of children with Special Needs there. I don't trust you with the deep and critical role you propose for yourself: an advocate for my son.

A point of order.

I haven't given updates on Samuel in a long time. Simply put, he is back, growing, thriving, and being even more active than he was ahead of the surgery.

In many of my posts through that process I spoke of love. At the heart of my love for my children, heck, humanity for that matter, is what I believe is even more important to human kind. Human dignity and respect.

If you've heard about a new movie from Ben Stiller, "Tropic Thunder", this is not an endorsement. To the contrary. I could say much but I am going to let others more eloquent than I give the details.

I will note that I have been on a bit of a mission to get folks to choose a better term than "retard". My daughter has expressed her frustration at kids in school using it and believe it or not, I hear it in the work place.

At any rate, Timothy Shriver writes an OpEd piece in the Washington Post titled "What 'Tropic Thunder' Thinks Is Funny". You may need to log in to read the article.

Short end of the question, here:



Want to do something about it? Here you go.

The Gym

I didn't have the presence of mind to take the camera with us to the gym, but managed to remember that I had a camera on me today - my phone cam!

One of the best exercises I can see to help re-build those chest muscles is one called "pec flys" as it works on the pectoral muscle group:
We did this last week at 10 lbs - the absolute minimum, after trying 30 and then 20 lbs. Today I started him at 20 and he did a full 3 sets at 30 lbs. He seemed quite comfortable with it. We'll keep it there for the week and see if next week will allow us to go to 40.

Swimming

I started mentioning to Samuel at about 2 weeks post surgery that he would be able to go to the pool soon. He usually demurred and seemed uncomfortable with the idea of swimming. That's fairly understandable, but, it's one of those things I worried about. I worried that he would not be willing to go back to the pool. It's probably silly, but, that was what was going on for me.

About a week ago he came up to me and said, "I'm ready to go to the pool now." That simple. He's directing his recovery and is out-pacing my wildest imagination for recovery. My fear was wholly unwarranted.

We started lifting at the gym this past week. Just light machine weight, but we started. All the stuff we used to do before surgery, including me blocking bad shots he makes with the basketball. Yep, we had a throw-down yesterday and he won. Even with blocked shots.

Today we went to the pool and he swam. He started off mugging for the camera by dunking me in the deep end. That's my hand looking for sunlight:

Once it was "adult-swim", we had him get in, since it was much less crowded at that time, and try swimming some freestyle. He was willing as you can sorta see below:

We started at the shallow end and he swam, slowly, but all the way to the deep end. We rested a bit and then he headed back:

Here he is just at the end of a lap of freestyle:
He is awesome. I told him that this is important so that he will be back in shape for swim-team next year at Branham. That meant something to him! ;)

That was all the lap swimming we did. We kept the rough-housing to a minimum but went ahead and played a game we invented that only works in a pool with old-fashioned gutters, "Gutterball":
Simply, you try to get the squishy ball into the gutter. The goal is as wide as your arms. There's a lot more rules to the game. At this point, I was just happy to have Samuel hitting on all cylinders.

Wound update: His chest wound is healing nicely. He is able to run a towel down it to dry off and let me tough it lightly last night. Don't let anyone tell you that recovery from surgery is not improved by being in shape!

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.

The Chef

Samuel was given this cool cook book by is Grandparents:
It's neat because most recipes are fairly simple. However, each recipe has a skill level. None of that really matters because Samuel picks what he thinks sounds good and we go from there.

To the extent we are able, we advise him on what he is making and if we think he'll like it. For example, he picked Eggs Benedict one day and we went with it, as he likes eggs and muffins. He actually liked everything including the faux Hollandaise sauce.

The recipe he picked, the Mexican Chorizo Noodle bowl is not something I would encourage him for as he's not a pasta fan. He'll try it, but he has never really eaten a meal of pasta. His sister loves pasta, not him...

He wasn't to be dissuaded and we forged ahead. Now - for reference, and I actually knew better but let go - don't *ever* buy Chorizo from a regulation super market (read: Safeway, PW, Nob Hill, etc...). I bought some stuff that came packed in plastic material. It pretty much just melted. This is a stomach problem looking to happen. It is mostly grease. Hey, in this scenario, I'm just the sous chef anyway so I can blame the Executive Chef (only, I did the shopping...).

Not that "good" Chorizo is not greasy, this stuff is pretty much grease based. Anyway, we used it. You create what is essentially a soup (after draining off as much grease as you are able, of course!):

Then add a bunch of other pretty good ingredients:

However, never cook raw pasta in a dish (like this), cook it first, then add it at the end and serve... ugh. Cooking it in the sauce made the broth too thick. The exec chef again, was not phased by this:

He had a bout 2 bites and called it a wrap... Leftovers? Ya, plenty. It was pretty tasty in the end.

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... ;)

Goose awakening

A long time family friend sent me this story on reading our gosling encounter yesterday, I thought it was fairly interesting. I enjoyed it anyway...:

Dear Danny,

Good pics! Thanks a lot. When Paul was at Cabrillo, he brought home a pair of goslings, male and female. I think he got them from the farm at the school. Anyway, I named them Gus and Gert, and we kept them for quite a few months until they were full grown. They patterned on me and followed me around too, so for awhile I was the goose lady. Gertie was always trying to get at our chihuahua Princess so I had to protect the dog. Gus was a wus, but Gertie was a heavy duty guard goose, and eventually caused us to get rid of both, since she went after the meter men, and the mail man everyday.

One day we were in the front yard, and I was barefooted and in a muu muu, trying to protect Princess, when a man came around the far corner, walking his big fluffy white sled dog, a Samoyed, on a leash. Gertie took one look, and hooked her neck into an S and spread her wings, then half ran and half flew across the street and down to the corner after the dog, hissing and honking loudly. I went after her as fast as my bare feet would go over the pebbles in the way. By the time I got there, the poor dog, never having seen anything so horrible in his life had given up and laid down on his back with all 4 feet in the air and was pissing all over himself. Gert was ready for the attack, and I just got hold of her in time and had a really hard time holding onto her as she was trying to get to the dog. The man, looking quite flummoxed by the whole situation, said to me "My, that is a big duck!!"

Needless to say, I never saw the man or the dog again on our block.

Eventually we put the 2 into a clothes basket and took them down to the pond at the golf course, and there we left them. They did not stay, but I heard that both went to another house that backed onto the golf course where there was a tiny fish pond to flap around in.

And that is the story of Gus and Gert.
The end.
By Natalie Lund

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

Gaming

There was an Hinojosa 3-member Harry Potter trivia throw-down this afternoon. Rowena will concur, she stinks at trivia. Usually.

She started about halfway across from her house and by the time she made it to her common room entryway, she had all the charm cards needed to enter.

For those of you familiar with this game, you know that to win, she needs to answer one question that the other players choose. I try to find questions that are really obscure. This one seemed to fit that bill:

"What is the price per scoop of the black eyed beetles that Harry sees in the Apothecary?"

This is from the book. There is no way she knows this. We read her the question and she laughs and states, there's no way she gets this.

Trivia is a tricky thing. About 1 in 100 guesses will hit (yes, that is from a scientific survey I just made up). She goes, "well, the only money I can remember is knuts. So, 5 knuts."

She was right. She spanked Samuel and me in this game.

That's almost as bad as rejecting a basketball shot from my son. A friend of ours, Mike, will confirm that he has seen me do this to Samuel. He could not believe I blocked his shot one day. I told Mike, "hey, he knows better than to take that shot. Darn right I block it." The Lakers are ahead by 2 early in the second quarter.

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!

Go ahead and call

Hey, I just realized that as we are now home, it's totally cool to call. I'll likely keep putting up entries here. However, we welcome your calls and visits. However, Samuel has an agenda and that agenda seems to be all about getting back to 'normal' as quickly as possible. We have already taken 3 walks since we've been home, one around our whole block.

At any rate, please feel free to call and touch with us or with Samuel. Of course, not many people get away with calling and speaking to us without Samuel asking to speak to whomever it is on the line. Note that Samuel's usual bed time is about 8:00p. We're usually okay to call to about 10p.

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.

Samuel's Heart

Below are graphic photographs from the operating table of Samuel before and during his surgery. There are images of his heart and incisions in his heart as well as the material that was removed from his heart. Don't go further if this will bother you.

Samuel is on the table all washed up and marked up, out with eyes taped closed:
I noticed in the ICU what looked like marker lines around his nipples. I figured it as tape gunk or something, you'll see in the next picture that it is indeed marker. I have to say, If I was a surgeon, it would be hard not to make the line dashed and add little scissor marks like this ---8<----8<--- That's just my sense of humor.

There are other images that I am not putting up of echo cardiograms they did in this process. To do those, they put the probe to get the images of the heart down his throat to get a view from behind the heart. Think about that... He has a breathing tube in place, a drainage tube from his stomach. And then they fit a probe down there? Crazy...

Here they have finished with prep and are ready to make the incision:

They have completed the incision and are working to expose the sternum so that they can cut through that:

Here is Samuel's heart:
It is the large sort of blob in the upper area of the incision. It's not very clearly defined as most of are used to seeing. Most of us aren't used to seeing a heart where it belongs, in the chest.

This image shows them opening up the right atrium to get to the area that needs attention. The ribbed hose to the right is one of the canulas that takes blood to / from the heart lung machine:

Here is the first piece of muscle tissue that was removed from the heart:

When you look at his incision, and then look at what the doctors are doing in his chest, and all of the hoses, tools, clamps, and hands...

I believe that Dr. Silverman who took the pictures was behind a screen in an adjacent room taking these pictures. That means that the camera is mounted on a platform or something.

While I muse at the chest opening and all the hands and tools in there, etc., now we get into the heart. They have tools and such in there. A yet smaller opening. This is a closer view of the opening in the right atrium as they get into the right ventricle to remove more tissue:

Yep, there it is:

Here they are backing out of the heart:

Then, the opening is closed off with a patch:
I wasn't aware that they were going to do that. I figured that they would close the wound with a seam. Perhaps they cut a piece of tissue away from the atrium to do the work. Unknown at this point. I would have requested the material like the last time if I had known.

I put these up as a part of my process of dealing with the whole thing. This has been very challenging for us as a family and for Samuel individually.

He is out doing laps around the hospital right now. He wanted to get out and this is a good sign. This is the desired outcome. It is also what was unknown only a week ago. Going in, I put my trust in the surgeons and science. I went into this knowing that this was the best place for him to be. The doctors have done this and more before.

I put my faith in God to work for the surgeons to be skillful and for Samuel to be strong, brave, and hopeful. Those prayers have been answered.

God has worked miracles here, most of which I am unaware. That Samuel and his sister were entrusted to us to raise, teach, and care for, is a miracle. That we are here now, in a place where technology, resources, knowledge, and skill exist is the biggest miracle for Samuel. How many other babies in the world are there with similar or even less challenging issues, that can't get care at all?

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: