Recovery - Day 2

Photo Warning: Again, shots of Samuel in his hospital bed. If you saw the previous images, these are less challenging as he is moving around a bit more and looks a bit more "alive". At least to me. Regardless, if such images are going to bother you, sorry. From here, I'll write a lot of detail around the images. It's my therapy, so... Well, there it is.

We made it back to the hospital just after rounds this morning about 8:00 AM. Samuel was just starting to open his eyes and was moving around a bit. The expert responsible for monitoring his breathing and the ventilator was on the job and making sure that all was as expected.

In the mean-time, I noticed that unlike his first surgery, the little diode they use to monitor his O2 saturation is on his toe. I spotted it glowing from beneath his sheet (lower left):

Rowena and I traded off a bit sitting next to him and holding his hand. The monitor to the left of Rowena is the one that is associated to his breathing tube:

He finally rested for a bit. He had gotten a bit restless and was looking to remove his own breathing tube. We of course discouraged this behavior.

It was funny, interesting, challenging, sweet, and amazing - Samuel, since he couldn't talk, used sign language of sorts to let us know what he did and did not want. He has a way of waving his fingers away form his palm with the back of his hand facing upwards, to "shoo" someone off. He did this to each of us at one point or another.

He motioned for a drink. It was clear he was asking for a drink of water, which with a breathing tube in, he couldn't have...

We noticed this map on his main bandage this morning:
I thought I spotted "Isla Tortuga" on there. Alas, it is just an outline of the blood seepage on his bandage so that the doctors and nurses could tell if his wound was bleeding excessivly. At 2:15p, it is unchanged, so it looks like his newly minted wound is working it's way to being a full-fledged scar.

The doctors did their rounds. Victoria had shown up by then and was surprised that just like on Grey's Anatomy, they did actual rounds:

The guy here was reviewing for the day shift Samuel's status. Rowena and I overheard that at some point in the surgery, they needed to defibrillate his heart:
While that is the TV kind of scary, Samuel was awake and active. Whatever happened has passed. He is here and working on healing.

After the medical team moved on down the corridor, he asked for his sister. He had a pretty good rotation going with all three of us there to hold his hand and interpret his sign language:

Once they removed his tube, he wasted no time in trying to talk and asking for the specifics. Like the dog that his classmates gave him his last day at school:

Samuel is rather grumpy at the moment. He wants water. They removed his ventilator at about 11a and said that he would not be able to have a drink of water for about 6 hours. They want to make sure that he does not get water in his lungs. He asks each time he wakes up. He asks politely. He asks insistently, he will even whine (image that). He is getting the same answer and really really doesn't like it. He just noted that there must be water fountains on this floor.

Thank yous: To our very dear friends that were here most of the day with us yesterday, our most sincere thanks. Your presence, prayers, love, care, and kindness is a blessing that will be with us always.

To our church Family, thank you for your prayers, your comments on the blog, your calls, emails, all of it. Our church was a blessing when Samuel was born, during his first surgery, and the church we know and have loved is there now. We are very grateful for all the prayers and contact. Thank you to the pastors who have made sure that Samuel was known to the congregation and well covered in prayer, as well as the rest of us. Thank you.

Finally, to the angel named Brenda who brought us a tasty Lasagna, a lovely green bean casserole, cookies, fruit, and some really tasty "quiche muffins", to you and your family, Thank you. You put feet to prayers we could not articulate. This helped assure us that not only we could have some meals and snacks here, but that Victoria would be fed as well. We are lucky, and above all, blessed to have met such kind and loving people.

Last / First update of the day

It's 12:15 a and we just returned from the hospital. There are up-close pictures of Samuel below as we left him at the hospital with a breathing tube in, 2 chest tubes, and lots of other stuff connected to him. If this will upset you, I wouldn't scroll past the hash marks I put in (#) below...

After the last update, we thought we'd be seeing him at about 10:00p. However, we didn't get in until shortly after 11p. It has been a long day for us and Samuel. We've had a lot of touch from family and friends. Thank you all for your prayers and contact in all the various forms. I have been trying to reply to all the comments. Rowena is in the loop on all of the comments as well.

When we went into see Samuel, he looks as still as a pond. It is rather eerie. However, knowing what he's been through... Anyway, it's hard not to want to touch your son and to caress and talk to him and let him know you are there, tell him you love him, in case he didn't hear it the other 20 times it was told to him by us today. I brushed his upper left arm and he sorta twitched. Rowena told me to stop as she didn't want him to twitch.

I stopped and the nurse tending him constantly told us that it seemed he was trying to wake up from the anesthesia and that's what the twitching was about. I stopped touching him, but it is hard. He and I are very close and we are connected. Even after I stopped touching him or talking to him, he continued to twitch on occasion.

Rowena finally moved up closer to him and was whispering to him. He continued to twitch. At about this point, Rowena sort of swooned and I helped her to the floor. The twitching, a long day, probably not enough food, all took their toll on her. The folks there made sure she was fine, gave her some juice and helped her up. There was no other event. It was a long, stressful, and challenging day.

We will be back up there tomorrow early, trying to beat the i280 traffic. So, below are the pics. Don't scroll down if seeing a young man with lots and lots of hoses and lines connected will upset you.

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First, here is the mass of various fluids that are finding their way into Samuel via a central line in his neck, a line in each arm and one in his left hand. Each thing on the top left with an orange top is a vial of medication of some sort... You can See Samuel's face in the lower right corner:

This is the nurse tending some lines in a manifold next to him. I have no idea how they keep track of what is what, but they do, thank God...

A bit more up close:

He has 2 chest tubes that are draining fluid from his chest cavity. One is just below the main incision and one is to the lower right of the main incision.

Okay, bed time.

1 more hour (9:00 PM)

Samuel's surgeon just came out and let us know that things went well and surgery is complete. He said that Samuel is still in the Operating Room (OR) and will be in the ICU in about an hour. They are just wrapping things up to move him.

He said that Samuel did really well. He noted that the muscle in his heart was quite thick as they had expected. They had a small leak from the old VSD that was repaired in his first surgery they were keeping an eye out for. This has show up on echo's and other studies on Samuel's heart over the years. He said that they didn't see it initially. As they removed some of the muscle tissue, it made an appearance. So, they dropped a stitch in there and closed it off.

Dr. Hanley seemed fairly comfortable with the result. Perhaps it is that he does this all the time and expects or regularly has success, this is no big deal or not a wholly unexpected result. For my part, I can feel the stress ramping down. The pressure in my chest is loosening, knowing that he is done and can begin healing.

As late as it is, they won't remove the breathing tube until the morning. We have a long night ahead of us, looking to begin our part of the bargain, being there for him. More later.

Started Late

Click any image to get a larger version...
We were at the hospital on time, only the surgery team seemed to have had to go long on their fist case. We finally were brought in and started off joining a study on using liquid Acetaminophen (Tylenol).

Samuel put his gown on and was told to take up a spot on the bed. He did. They were going to try to put his initial IV in his arm, however he protested more then they had considered.
Actually, he did that face for me as he was trying to act as though he wasn't happy about me taking pictures.

He really was doing okay and not seemingly all too stressed about what was going on or coming up:

He even agreed to take a picture of us:
We left him with the anesthesiologists at about 2:15 and headed into downtown Palo Alto for a late-ish lunch. We strolled around there for a bit and came back. We were hanging out at one of the garden areas they have here and one of the nurses on his case came by - this was around 4-ish, to let us know that at that time, they were just starting to cut on Samuel.

It's about 5:30 now, so apologies for the delays in updates. I ran out of power. Oh, the surgeon came and met Samuel and reassured me that they would be taking pictures. Any posts I put up that will have pictures of Samuel's procedure I'll make sure to flag.

It's going to be a long evening...

The check is in the mail

Offtopic, but related, Victoria received an accept from her top choice college, Drew University. She is accepting this offer and expects to start as a Freshman in fall of 2009. The check for this is in the mail along with her request to defer for a year.

She plans to continue to live at home for the year and take some classes in fashion design at West Valley college and to continue working. She is also looking to travel, perhaps to Australia in this time.

We're very excited that she has accepted at Drew. Needless to say, I'm seriously relieved as this I think she will enjoy Drew and that the time away from school will just be a healthy thing. Plus, the travel should be awesome. Yay Victoria

Surgery time: 1:00 PM, Tomorrow

Samuel's surgery is scheduled for tomorrow at 1:00 PM. He'll need to be there at 11:00a and won't be able to drink anything after 10a. He can't have anything to eat after midnight tonight. The nurse that prepped us told us to let him eat whatever and as much as he wants tonight.

We were pulling out of the hospital parking lot today at 11:30a. The pre-op visit went much faster than we had imagined. We ended up not meeting with any doctors at all. We spoke with one nurse who checked Samuel over for general health and filled us all in on the general details.

A second nurse came in and had Samuel leave to go sit in the waiting area while she filled us in on the specifics of the surgery. We have learned that they will do the removal of tissue from the right ventricle by cutting into the right atrium.

There are some challenges in this procedure, aside from the obvious stuff, "uh, ya - we're gonna stop his heart and have a machine do the work for his body while we do this..." They have to cut out enough tissue to relieve / reduce the gradient from the right ventricle. They also have to make sure to not cut out too much material as there are electrical circuits that regulate the heart in this area. She noted that there is a potential that if this happens, he would leave the hospital with a pace-maker.

Also, as for risks, there are some nerves that run off the heart that could impact his speech, but if there was any damage, he would just be hoarse and that should clear up in a few weeks. There are also nerves that run down either side of the heart. The one on his right side they could run close to and they will take care of this. I forget the details of what that nerve does, but it was reasonably benign and not a likely cause of great concern.

I'm guessing we heard a lot of this 15 years ago. The anxiety is new, because that was 15 years ago. There are of course all sorts of other risks, some of them we won't touch on. Either way, it's the data they need to make sure that parents or patients are aware of so that if there is an issue, they are covered.

From all of us, to you our friends, and in particular, to Samuel's classmates, swim team mates, and his teachers,Thank you for all of your prayers and wishes.

So far today

Samuel is in having his chest X-Ray at the moment. He has had his echo and EKG. After this we go for the blood work and our meetings with the various others.

Along the way...

I've been hooked on this song by Ingrid Michaelson the last few days. I love her voice and it's a really sweet love song. I like the innocence of the kids in the video.

While looking at the above song, I noticed related videos and found this amazingly timely song by Michaelson, "Breakable":



Breakable. We are so fragile. We are also incredibly resilient.

Pre-Op

Tomorrow is a full day. We received a letter telling us all that is on tap for the day. It includes an Electrocardiogram, an Echocardiogram, an X-Ray of the heart, and some blood chemistry work.

He'll also meet with nurses, anesthesiologists, and a few other ologists I can't remember. One of those will be one of the cardiologists we met on the day he was born. He was one of the guys that helped present to us the analysis of Samuel's condition at birth and some potentials and prognosis at that time.

Oh, and they will also do the basics to make sure that all things considered, he is healthy and ready for his date with Dr. Hanley. Assuming that is all cool, health-wise, he could still get postponed if there are no beds available on the back-end (ICU-recovery), or if an emergency case comes in that would take precedence. This has always been one of my greatest fears, that we get to this point and we hit a snag. I pray for everything to align so that we can get this done and move into a recovery phase.

Update on today: Samuel, Rowena, and I met with Samuel's pediatrician / cardiologist, Dr. Greene. Dr. G. explained what would happen in a bit more detail to Samuel and what he can expect immediately afterwards. As always, Samuel surprised me because he took this all in stride. He was told he would be in some amount of pain a day or so after he woke up.

Surprising to me is that Dr. G. suggested that Samuel not continue to lift weights - an isometric work out, that could cause raised pressures in his heart. Curious... There is other weight lifting he can do, but is now advised to not do "power-lifting". Bummer. That was one of our favorite Special Olympics events. He is not yet actually old enough to compete in this event, but I had been coaching for the last 2 years and was looking forward to continuing on with that. I may continue to coach anyway. We'll see...

Good MRI

I wasn't able to make Samuel's MRI this morning. The report from Rowena is that it went well, Samuel did just great doing what he needed to do and the doctors have the images they need to do the surgery that is required.

There was a slim chance he would not need surgery, but neither Row or I took this to heart, so to speak. They would have had to make one heck of an argument to me as to why this would be so, after what we have gone through to now.

At this point, I take it that the images will give Dr. Hanley what he needs so that he knows where to cut, what to cut, and how to make sure it's all done the way it needs to be done.

Next steps: Samuel meets w/his Pediatrician / Cardiologist next Tuesday. We have been fairly up front with Samuel about the surgery in terms of, he's going to have it and it is to fix his heart. I suspect or perhaps desire, that his doctor is a bit more up front with him about what's going to happen and what recovery for him will be like.

Next Wednesday is pre-op where they will do some testing, draw some blood - which may be the most stressful part of the day for us, and probably some other tests like EKG, etc.

I'm not sure we know what time on Thursday he goes in. We're planning on taking his iPod along so if he's wanting to dig a little, he can. It might be hard if he's feeling like dancing, which, if he's listening to one of his favorite bands, might be kinda tough.

Visit with the surgeon

We went to meet the surgeon, Dr. Hanley, who will perform the surgery on Samuel. Dr. Hanley started us out by stating that he had reviewed the latest echo-cardiogram on Samuel and feels that he needs more data to move forward. He thinks there is a slim chance that the surgery is not needed at this time, but to determine that, he wants an MRI done of the heart.

The MRI is a non-invasive procedure that will give him more specifics about what is where in the right ventricle that may need to be removed. He talked about the echo and if we had ever seen one. We've seen many over the years... It's a bit like trying to find a snowman in a snow storm... Ya, I think we all agree on that. We are working to get that scheduled, preferably by the end of this week as per the good doctor.

We asked all of our questions - From the time we let Samuel go to the time we see him in the ICU, should be about 5 hours total. The surgery itself, from first cut to completion will take about 2 hours. He may spend about 2 days/nights in intensive care. Most folks might only need a day in ICU. This extra time is somewhat common in patients with Down syndrome for various reasons. His total time in the hospital may be 4 to 5 days.

Total surgical recovery will be about 6 weeks. He shouldn't be lifting anything heavier than a phone book in that time. This is so that the breast-bone can heal as well as the muscle tissue. That means no swimming, no lifting weights, no basketball. He will need to go for walks and stay fit, so that will be a cool thing to do with him in that time. We'll need to follow his lead for going back to school. He could be out of school the full 6 weeks, but if he feels up to it, he could go back half days after 3 or 4 weeks.

If you've been following along in my reporting, you may get by now that I want data and prefer detail, like the patch they put in his heart. In talking with Dr. Hanley today, I told him that I keep this blog and that I want pictures. I told him that I would like pictures of the tissue they remove from his heart, if he is willing. I told him, heck, I'd like pictures of the surgery if that was possible! Not only is it possible - the dood is going to schedule the hospital photographer to get some. I'll put that stuff up here right after the procedure, I hope. I'm assuming it will be digital, but didn't ask. Not looking the horse in the mouth don't you know...

The interesting part about the conversation was that the doctor had stated that this event, the muscle bundle in his right ventricle, is unexpected in a case of his diagnosis at birth, the Double Outlet, Right Ventricle (DORV). He said that they would typically see something like this in the left ventricle post-facto from that original diagnosis. It's hard to tell if this is just a curiosity, a scientific challenge, or just a "that's weird" kind of thing. I'm not worried about it. I think we were both caught a little off guard by the input. We are coming to learn that this is how doctors like this work. Not a bad thing, just one of those deals you run into and then think about...

Finally, when Samuel was originally diagnosed, one of the doctors that did those original drawings of his heart for us had told us that on a scale of one to ten - where one is a surgery to repair a hole in the heart and a ten would be a heart-lung replacement, the surgery to repair the DORV was about a seven. Fairly complex and challenging. We asked Dr. Hanley where this surgery landed on that scale. He said that this was about a 3 to 4 on that scale. That was good to hear in that it validates the scale for us (listen to us - we're questioning the doctors, right? - not really, just getting confirmation that the scale makes sense and is 'transferable' in context) and also is some amount of comfort that this isn't a seven again or higher.

Other updates: Samuel had another meet last Thursday and did the 50 free and 50 fly again. His free was good, the fly was awesome. He looked strong. Rowena said, "just wait till next year when he should have even better stamina!". Amen to that my love. Amen. His last meet of the season is tomorrow. Rowena donated blood on Tuesday and will probably give again next week.

Are you Blood Type O- ("Oh" Negative)?

Update (10:00 AM): I spoke with someone at the surgeon's office and they state that they will need 4 pints of blood for his surgery. They didn't seem too worried about any potential lack of blood. If you want to give and are O-, go 3 days prior to the surgery (surgery is on May 1, so that would be Monday, 28.Apr.08) and note that the donation is for Samuel Hinojosa. It will cost $100 as it is a targeted donation, so this it totally optional to target the donation. If you want to just help out, donate blood and do not request that it be targeted for him. (end of Update)

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This all came up because the wife of a holy man I know said in an email message in response to one of my earlier posts, "So what is Samuel's blood type? I'm a wuss that never gave blood, but for Samuel I would." Samuel's blood type is O- and that means that you can only take blood of the exact same type, hence quantities of this blood type are typically in low supply.

Rowena found that the Stanford Blood Center has their inventory of blood supplies on-line! How awesome is that? Well, it is awesome (like - cool), but also scary (like, dang - they are short!)

To do the sort of surgery that will be done on Samuel requires an extraordinary amount of blood. This is because when they do this procedure, the heart is stopped. A machine called a Heart Lung Machine does the work of the heart and lungs. It pumps the blood though the body and oxygenates the blood. This Google search has tons of information on the machine.

It is this piece of technology that made open heart surgery possible. The problem is that the machine itself need a lot of blood to prime. A lot of information on this is on a page I'll link to here in a moment. However, there is an image of a heart with the hoses attached, so if such a graphic will upset you, don't go to that article! Here is the article.

I am a believer in donating blood and have donated over 2 gallons of blood over time. I have nothing on my brother Jorge who has donated over 8 gallons. This is his personal mission and to that mission he is ever faithful. Blood is a gift that he gives in massive quantities. Blood centers around the world are always in need of blood, so please give when you are able.

At any rate, if at this time, you are blood type O- and would be interested in making a specific donation for Samuel, see the update above! There is a designated donation process at the Stanford Blood Center that is documented here. Rowena is going to call the center today to get more specifics and will find out if we can setup a targeted giving process for Samuel's surgery. I'm not sure it is needed, but in looking at the chart on the inventory link, I'm a little concerned.

Fell free to give us a call - you know our number, if not, leave a comment on this blog article and your name. Odds are we have your number, or email address and can connect. Either way, I'll be putting up another article once we learn more on that process and if we will have something setup.

<3

It's heart night. Rowena and Victoria are in New York and will tour the perspective college tomorrow and talk about financial aid.

As I'm watching a brief video clip by one of Victoria's favorite artists, Alicia Keys on the Idol thing on TV.

Behind the scenes, I received a cool email message from my brother that had this link to an article that referenced the guy who had a heart transplant and died the same way as the donor.

Better and more importantly, the article was mostly a more interesting story about a woman who had a heart transplant and took on unusual characteristics of the donor!

This article set off a short search though my mailbox history. I recall having sent an article to a friend about a guy who had his left ventricle replaced with a motor. Before I found that article, I came across this follow up article to the motor-heart guy about a young woman whose heart was being assisted with a mechanical heart until they could find a suitable donor heart. Her heart repaired itself.

I finally found the original article I was looking for and took the time to re-read it. I am further convinced that the heart, while we can put pieces of cloth in it to make it work right, we can open it up and remove stuff that doesn't belong, we can replace it with another... I am further convinced that we know *nothing* of the heart. Not the heart that holds emotions and fuels musical inspiration. Not the heart that loves. Not the heart that will always hold parents. Not really.

The heart <3 if you are in someone's heart - you're lucky. You're blessed. It's important. It's a sacred trust.

What's next?

A few folks have checked in and are wanting to know if all is well. No news is good news and for now, I have no news. Samuel did play in the Special Olympics basketball tourney over the weekend. His team took a bronze medal in their class. They played 2 games and split those. The other 2 games they should have played were forfeit, hence the bronze.

Our next things on the surgery agenda are a meeting with the surgeon, Dr. Hanley on the 23rd of this month. This is just with Rowena and me. We'll be asking about recovery times, what to expect, etc. I'm guessing that he'll quote the recovery at about 6 weeks. Rowena thinks it will be less. I'm hoping she is right.

I'm thinking too that we'll see if we can donate blood to his surgery like we did the last time. Rowena has the same blood type as Samuel so hers can be used directly. I think they are able to use plasma from me.

Finally, Rowena and Victoria are going to visit Manhattan College this week. I'll be waiting with bated breath to hear how that goes.

RSS 101

I've gone to a bit of trouble to make this blog highly accessible so that folks can follow progress easily. If you are thinking to just make sure you check it regularly, that's cool. Should you decide you want to try some new technology, look into RSS. You can subscribe via a reader (see below), or enter your email in the box below Samuel's picture there to the right.

I'm relatively new to RSS. I started using it and have been a huge fan, ever since I saw this really well made video that explains RSS and why it's worth the effort:



This is brought to you by the good folks over at Common Craft.