Extra Life 2015 - Why I Keep Playing

Extra Life is a 24 hour gaming marathon that happens once a year to raise money for Children's Miracle Network hospitals. It's something very near and dear to my heart and this will be my sixth year taking part. In my first five years I've raised just over $4,000 for Akron Children's Hospital and shared a lot of my story about my son Lucas and what he went through. This year I want to do something a little different. I don't want to look back because he's come so far and I don't think it does his story justice to continue to tell it like it was instead of how it is.

So instead of telling you about this newborn little boy with a broken heart who would spend his first Christmas Eve at four days old in an hours long open-heart surgery

I want to tell you about this energetic little three year old who just started preschool.

He's learning about colors and the days of the week. He, like most boys his age I assume, is currently obsessed with Batman. It's not uncommon for us to curl up on the couch on a Saturday morning and watch as Batman fights crime. He loves hot dogs and chicken nuggets, but only half as much as he loves M&Ms. We're thinking about signing him up for soccer next year so he can run around and burn off some of the endless energy he has. When he does finally get low on energy, he likes when we read Goodnight Goodnight Construction Site before bed.

In essence he's a pretty standard little boy and you may be why any of this is of any consequence and that's why I do Extra Life. Without Akron Children's Hospital and the wonderful people who worked so hard to help him get healthy he would never have gotten the chance to do any of these little boy things he does so well now. I wouldn't get my snuggle buddy on the couch for Saturday morning Batman. I wouldn't have to answer countless questions about the world from a curious three year old. I wouldn't get tiny high-fives or larger than life hugs from a little dude who means so very much to me.

Every day I'm beyond thankful for all those little things that add up to so much more. Every day though I struggle with how I could possible thank all those doctors, nurses, and surgeons for saving that little boy and giving me all these priceless moments. And so every year I sit down and play video games for 24 hours and ask you all to donate a little money to go to that same hospital so they can save another little boy or girl and someone else gets a chance to experience being a dad who would've otherwise lost what means most to them.

So please visit my Extra Life Page and make a donation, big or small, and help me say thank you!

Extra Life Feature Final Draft

The first year I did Extra Life I did it because I love games. I’m a huge fan of anything that portrays games in a positive light, and so playing games to help children just seemed like a natural idea. I didn’t raise a whole lot of money, but I got a few friends to sign up, had a good time, and felt like I did a little bit of good for the world. That was in 2010.

In 2011, the second year I did Extra Life, my motivations were slightly different. I still loved games, but my wife was pregnant with our first child. So it seemed to me the cause was a little bit more personal. Again I didn’t raise a whole lot of money, but still had a good time with friends and felt like I did a good thing. I didn’t know it at the time, but doing this simple thing would help me through the toughest time in my life.

Our son Lucas was born on December 20th, right before Christmas, of 2011. To us he was perfect and we were very excited to be parents for the first time. As we were waiting to take him home from the hospital, his pediatrician was giving him one last check and she heard a heart murmur that concerned her. She came in to tell us he would be transferred to Akron Children’s Hospital a short ways away. I was told that having a kid would test my nerves, but I never thought I would be anywhere near this terrified, especially so soon into becoming a parent. Nothing could have prepared me for seeing our little baby bundled up on a stretcher, loaded into an ambulance, and driven off.

After he arrived at Akron Children’s he went through a lot of tests and we learned he was born with a congenital heart defect called TAPVR that would require him to have open-heart surgery to correct, but the doctor’s overall outlook was good. The next day we met with one of the two heart surgeons that would be doing the operation, Dr. Smith. He sat down with our family and us and explained what they would do and what we could expect. At the end of our meeting he said something I will never forget, “He’s scheduled for surgery on Monday, but if something were to happen that made us need to do something sooner, we will be here, and we will get it done. I don’t care if it is Christmas morning and I’m opening presents with my own kids, we will come in and get it done.” Later that night, something became obstructed and Lucas went from good to bad very fast. A lot of things went wrong simultaneously and it seemed like our luck just kept getting worse and worse. So at four in the morning on Christmas Eve my wife and I sat in the waiting room while they intubated Lucas and put him on a respirator. His surgery would have to happen that morning.

Within a couple of hours an entire team of people had arrived and got ready to make this happen. They came in on a day most people got to spend at home with their own families to spend it with ours. They weren't upset that they were there; they simply wanted to do what had to be done to help our little boy. Not only did they do it, but they did it with compassion and a great amount of heart. His surgery went well and at the end Dr. Smith came out to tell us how it had gone. After spending most of his Christmas Eve saving our child’s life, the best we could offer was a teary-eyed thank you. He cried, we cried, but for the first time in four days we were all smiling. He was at the hospital the next day on Christmas morning to check on Lucas and see how he was doing (as he would be every day for the entire time we were there), I just hope he got to open those presents with his kids before he came in!

After his surgery the doctors told us he would take time to recover and grow, so we waited. We thought we’d made it through the hardest part, but it didn’t get any easier. To see him day in and day out laying there hooked up to machines, struggling just to hang on was hard. His vitals were always visible on a monitor next to his bed, a constant reminded on how good or bad he was doing that day. On one particularly bad night when his heart rate was over 200 and wouldn’t come down the stress of everything finally overwhelmed me and my body shut down and I blacked out. After that night I spent some of my idle time escaping to one of my favorite places: video games. Bit.Trip Runner and Saints Row: The Third were what got me through when things would start to get overwhelming.

After he started to not get better the doctors told us he would need a tracheotomy and a feeding tube to allow him to stay on the ventilator and get his feeds longer term while hopefully his body caught up. We had to watch him go to surgery again. This time when he came back though he seemed to improve a lot. He wasn’t as sedated and seemed to like to be awake more and interact with us. As more time passed he still wasn’t improving as he should have. The doctors sat us down once again and let us know they were concerned with his lack of progress and they were going to try and get to the bottom of it. He went for a heart cath and they discovered what was wrong, two of his four pulmonary veins had stenosis and he would need a second heart surgery.

The surgery went well. It was hard to feel like we hadn’t started all over, but it was the only way for him to get better. This time around within days he was already showing improvement. Tubes and wires that took weeks to get rid of the first time were gone before we new it. He was coming off of more and more of his medications every week and for the first time the discussions with the doctors started to turn towards going home.

Overall we spent four months in the PICU before we ended up getting to take our little guy home. Throughout those four months we were continually surprised at the heart and the compassion of everyone who worked at the hospital. People there just seemed happiest whenever they were able to help in any way. I remember sitting in our room hearing laughing from the hallway and looking out to see a nurse race a kid down the hallway in a wheelchair because he had been stuck in his room for a while. It amazes me that this group of people could take one of the worst places a parent and kid could ever have to be, and make it a place so full of laughter and smiles. I remember thinking that I could never put up with the stress and the kind of decisions they had to make all the time. I asked one of our nurses about it and she said "This is just what I was born to do, I can't think of anything else I'd rather do."

When the time came and we got to take Lucas home, I can honestly say we were a bit sad to say goodbye to all of the people we had spent time with at the hospital. They had become like family to us, and even more importantly, they saved our little boy. There is no exaggeration in the statement that without them, he simply wouldn’t be with us today. Even though our story is a very personal one, I know it is not unique. The doctors, nurses, surgeons, and staff at the hospital continue to do the same amazing things they did for us for other families every day, and that's why I'm proud to be taking part in Extra Life for the fourth consecutive year to support this amazing hospital. Extra Life was one of the things that got me through our tough time. I took some small solace in knowing that I had helped the place that was helping my child. I knew my love and caring alone couldn’t fix him, but in some small way I helped facilitate those who could.

Last year Lucas helped me raise $1652 for Extra Life, and this year I’m hoping he’ll be able to help me do it again! So if you raise a little, or you raise a lot this year, just know that you are a hero to the people like me, and from our family to yours, thank you!

Extra Life Story 1st Draft

The first year I did Extra Life I did it because I love games. I’m a huge fan of anything that portrays games in a positive light, and so playing games to help children just seemed like a natural idea. I didn’t raise a whole lot of money, but I got a few friends to sign up, had a good time, and felt like I did a little bit of good for the world. That was in 2010.

In 2011, the second year I did Extra Life, my motivations were slightly different. I still loved games, but my wife was pregnant with our first child. So it seemed to me the cause was a little bit more personal. Again I didn’t raise a whole lot of money, but still had a good time with friends and felt like I did a good thing. I didn’t know it at the time, but doing this simple thing would help me through the toughest time in my life.

Our son Lucas was born on December 20th, right before Christmas, of 2011. To us he was perfect and we were very excited to be parents for the first time. As we were waiting to take him home from the hospital, his pediatrician was giving him one last check and she heard a heart murmur that concerned her. She came in to tell us he would be transferred to Akron Children’s Hospital a short ways away. I was told that having a kid would test my nerves, but I never thought I would be anywhere near this terrified, especially so soon into becoming a parent. Nothing could have prepared me for seeing our little baby bundled up on a stretcher, loaded into an ambulance, and driven off.

After he arrived at Akron Children’s he went through a lot of tests and we learned he was born with a congenital heart defect called TAPVR that would require him to have open-heart surgery to correct, but the doctor’s overall outlook was good. The next day we met with one of the two heart surgeons that would be doing the operation, Dr. Smith. He sat down with our family and us and explained what they would do and what we could expect. At the end of our meeting he said something I will never forget, “He’s scheduled for surgery on Monday, but if something were to happen that made us need to do something sooner, we will be here, and we will get it done. I don’t care if it is Christmas morning and I’m opening presents with my own kids, we will come in and get it done.” Later that night, something became obstructed and Lucas went from good to bad very fast. A lot of things went wrong simultaneously and it seemed like our luck just kept getting worse and worse. So at four in the morning on Christmas Eve my wife and I sat in the waiting room while they intubated Lucas and put him on a respirator. His surgery would have to happen that morning.

Within a couple of hours an entire team of people had arrived and got ready to make this happen. They came in on a day most people got to spend at home with their own families to spend it with ours. They weren't upset that they were there; they simply wanted to do what had to be done to help our little boy. Not only did they do it, but they did it with compassion and a great amount of heart. His surgery went well and at the end Dr. Smith came out to tell us how it had gone. After spending most of his Christmas Eve saving our child’s life, the best we could offer was a teary-eyed thank you. He cried, we cried, but for the first time in four days we were all smiling. He was at the hospital the next day on Christmas morning to check on Lucas and see how he was doing (as he would be every day for the entire time we were there), I just hope he got to open those presents with his kids before he came in!

Overall we spent four months in the PICU before we ended up getting to take our little guy home. He ended up having a couple more minor procedures, another open-heart surgery to fix a complication that ended up related to his original problem, as well as a tracheotomy and a feeding tube to take some of the strain off of his body so he could get better. Throughout those four months we were continually surprised at the heart and the compassion of everyone who worked at the hospital. People there just seemed happiest whenever they were able to help in any way. I remember sitting in our room hearing laughing from the hallway and looking out to see a nurse race a kid down the hallway in a wheelchair because he had been stuck in his room for a while. It amazes me that this group of people could take one of the worst places a parent and kid could ever have to be, and make it a place so full of laughter and smiles. I remember thinking that I could never put up with the stress and the kind of decisions they had to make all the time. I asked one of our nurses about it and she said "This is just what I was born to do, I can't think of anything else I'd rather do."

When the time came and we got to take Lucas home, I can honestly say we were a bit sad to say goodbye to all of the people we had spent time with at the hospital. They had become like family to us, and even more importantly, they saved our little boy. I'm sure now that we're not there though, the good work they do goes on for someone else, and that's why I'm proud to be taking part in Extra Life for the fourth consecutive year. Extra Life was one of the things that got me through our tough time. I took some small solace in knowing that I had helped the place that was helping my child. I knew my love and caring alone couldn’t fix him, but in some small way I helped facilitate those who could.

So if you raise a little, or you raise a lot this year, just know that you are a hero to the people like me, and from our family to yours, thank you!

Gearing Up for Extra Life 2012

So this weekend a number of things happen. First of all, our awesome little boy turns 10 months old on Saturday! This is of course cause for celebration. Secondly, to celebrate I will be participating in the Extra Life charity to benefit the Children's Miracle Network, and more specifically, Akron Children's Hospital. If you haven't read my previous blog post, let me quickly sum up what this is all about.

I sign up. People donate money to support me, and this money goes to Akron Children's Hospital through the Children's Miracle Network. I play video games for 24 hours straight starting Saturday morning.

Pretty simple, and pretty awesome. Even more awesome is that so far I've raised just over $1500! So in the final days, I've decided to raise my goal one last time, and go all out and see if I can hit $2500. A lot of you have chipped in and helped, and for that I will be eternally grateful and you should rest assured that in some way you have improved the life of a child going through a rough spot. If you haven't donated yet, let me share a few stories with you that may help you make your decision.

Our son Lucas was born with a congenital heart defect that required him to have two open-heart surgeries. One of these was at just 4 days old, and the second was at two months. When it was all said and done, Lucas spent the first four months of his life living in the Pediatric Intensive Care Unit. This has given us an appreciation for Akron's Children Hospital that I won't even attempt to put into words, and it also gave us a lot of first-hand observations about what goes on in the hospital everyday.

The hospital never stops. It simply cannot. This is the nature of the beast. Lucas was born December, 20th last year, right before Christmas. The doctors had identified what was wrong with him and had scheduled his surgery for the Monday after the holiday since he was doing well and was stable. Unfortunately in the very early hours of Christmas Eve something went bad. We quickly learned before the sun came up that day that he would need to have his surgery, and he would need to have it that day. Within a couple of hours an entire team of people had arrived and got ready to make this happen. They came in on a day most people got to spend at home with their own families to spend it with ours. They weren't upset that they were there, they simply wanted to do what had to be done to help our little boy. Not only did they do it, but they did it with compassion and a great amount of heart.

This attitude continued every day for the entire four months we were at the hospital. People there just seemed happiest whenever they were able to help in any way. I remember sitting in our room hearing laughing from the hallway and looking out to see a nurse race a kid down the hallway in a wheelchair because he had been stuck in his room for a while.

I remember thinking that I could never put up with the stress and the kind of decisions they had to make all the time. I asked one of our nurses about it and she said "This is just what I was born to do, I can't think of anything else I'd rather do."

When the time came and we got to take Lucas home, I can honestly say I was a bit sad to say goodbye to all of the people we had spent time with at the hospital. I'm sure now that we're not there though, the good work they do goes on for someone else, and that's why I'm proud to be taking part in Extra Life for the third consecutive year.

So now comes the decision on what to play. In my definite list I have Borderlands 2 which I'm excited to spend some more time with. I also have Kingdoms of Amalur: Reckoning laying around that I'll finally get to crack into. I would also like to make a bit of a return to PC gaming. Every year sees at least a little bit of Day of Defeat: Source, so that'll happen.

I will try and take pictures and video to post afterwards, so stay tuned and thanks for your help. If you would like to help me reach my goal please visit my Extra Life page here: http://www.extra-life.org/index.cfm?fuseaction=donorDrive.participant&participantID=31840

Extra Life 2012

This year I will be embarking on a journey that I have made before, but this time around it will hold more meaning than anything I have ever put even an ounce of effort towards. As a lot of you know I take part in an annual charity event called Extra Life that raises money for children's hospitals across the country. For those of you who are unfamiliar with the event, participants sign up and play video games for 24 hours and wonderful people make donations in their name to cheer them on. In the past I have done this simply because I thought it was a good cause and it is a hobby I enjoy. This year my reasons are much much different.

In December of last year, my wife and I welcomed our first child into the world, a beautiful baby boy named Lucas. Like most new parents we were simultaneously overwhelmed and overjoyed to start this new chapter in our lives. Two days after he was born, as we were getting ready to take him home, Lucas' pediatrician heard a heart murmur and had him transferred to Akron Children's Hospital.

By the end of the day we had learned that Lucas was born with a rare congenital heart defect called Total Anomalous Pulmonary Venous Return, a very serious, and if not corrected, fatal heart problem. He was scheduled for open-heart surgery on the following Monday and the surgeons gave him a pretty good chance, so all we could do was wait and hope.

The following night Lucas' condition became much worse and he started to decline pretty rapidly. The decision was made that his surgery couldn't wait and he would have to go in the morning, which happened to be Christmas Eve. Things started happening very quickly and our only option was still just to wait and hope.

The doctors told us that due to his condition getting worse his chances of making it through the surgery were about 50/50, but they still seemed optimistic. As they wheeled him off to surgery we kissed him goodbye and went out into the surgery waiting room for a long day.

Before too long we were getting updates from the operating room that things were going well. Every update brought more good news and more relief. Finally the surgeon came out and told us that everything had gone well, and now we would just have to focus on getting better.

I can't put into words how great of a Christmas present it was to get that kind of news after such a trying time. Lucas still had a long road ahead of him to recover, one that included a second open-heart surgery to fix a complication that arose due to his TAPVR, as well as a tracheotomy and a ventilator to help his lungs recover while his heart caught back up. After just 10 days shy of four months, we finally got to take Lucas home from the hospital.

The entire time we were at the hospital the doctors, surgeons, and nurses worked tirelessly on helping Lucas get better. They honestly cared about his well-being as well as ours. The caliber of people they have working there is beyond any other place I've ever known.

One of the things that got me through the beginnings of our tough time was Extra Life. I took some small solace in knowing that I had helped the place that was helping my child. I knew I couldn't fix him, but in some small way I helped facilitate those who could.

So the reason I will be doing Extra Life this year is really simple. Inside of those hospitals are people who give children a second chance at life. I cannot honestly think of a more noble pursuit than that.

If you would like to help me say thank you to the people who helped us and gave our son a second chance at life, and help them continue what they do, please visit my donation page here and make a donation. Also I would greatly appreciate it if you passed this story along to friends, family, and co-workers.

Thank you for reading,
Dave Paskiet

Xbox Live: ThirdshiftMcgee
PSN: ThirdshiftMcgee
Steam: ThirdshiftMcgee

Lucas Update

So my last post was a big long monster of an update to explain as much as I possibly could. I will do my best to make this a practice in brevity and keep this simple and sweet.

How did his procedures go?

He did wonderfully during his procedures. He got a tracheotomy to allow him to keep his ventilator support more comfortably over a longer period of time. He got a broviac line, which is just a safer IV because they run it under the skin. Last, but not least, he got a G Tube (which is a tube that allows them to give him his feeds and medicines directly to his stomach).

Also while they were putting in the G Tube, the heart surgeons wanted to see if they could find his extra vein. They were successful in doing this, and put a small band on it to partially close it off. The idea behind this is that the band won't grow, but he will, so it will gradually close off his extra vein over time.

How has he been since all of this?

So there was some concern from some of the doctors that he hadn't really made forward progress before going and having these procedures, and without that forward progress were the procedures the best answer. In the end they felt they were, so they did them. Since the procedures though, he has made "tremendous forward progress".

He's already gotten off of several medications or switched to ones that can be given in doses instead of through an IV. He no longer has his one chest tube. He is entirely off of his paralytic, so he is moving and awake like a normal baby now. Today he is getting out his PA Line, and they think he'll be able to get his other line out fairly soon. They've even talked cautiously about him getting to go home in little over a month (though we've learned not to be too optimistic and jinxing ourselves).

So overall how are things?

Very good. We've made a lot of progress and couldn't be more pleased with how far we've come in the last week. We know we still have a long road ahead of us, but it's getting easier the more we get to play with him and the better/happier he is.

WARNING: I'm going to post two photos to show where he was, and where he is now. The first you may find unsettling, so by all means, turn back now if you think you might.































As always feel free to leave a comment or email me at dmpaskiet@gmail.com

Lucas

I've been sharing a lot of information about Lucas and what he has been/is going through on Facebook and Twitter in sort of short bursts. It serves well to keep family members and friends informed about what is going on, but it can be a bit disjointed. So I wanted to take a minute and kind of put a number of things in one place, as well as where he is headed, so anyone who is interested can be on the proverbial "same page".

We found out on the day we were supposed to take Lucas home that he had a congenital heart defect called TAPVR (Total anomalous pulmonary venous return). So the first question everyone generally has is "What is that?".

TAPVR is when none of the four veins that take blood from the lungs to the heart is attached to the left atrium (left upper chamber of the heart). This sounds bad, and in all honesty it is, but luckily his body compensated for this and he has an extra vein called a "vertical vein" that helps his blood somewhat get to where it needs to go. Unfortunately this isn't an effective system, and if left uncorrected, would prove to be fatal.

The next question just about everyone asks is "Why didn't they catch this before he was born?"

TAPVR effects how the blood flows to and from the lungs. When a baby is in utero, they don't breathe oxygen, and therefore don't really get or need the blood flow through the lungs. So in essence it just doesn't show up on an ultrasound. Also, if it is diagnosed in utero, they have no way of correcting it until after birth. In Lucas' case, he looked like a healthy baby, so at first there was no concern. Fortunately for us, his pediatrician heard a heart murmur while checking him before sending him home with us and had him checked out.

While I'm answering questions I will follow with "How did they diagnose him?"

To figure out what was going on when he came to Children's Hospital to be checked out, they did what is called an echocardiogram. This is essentially an ultrasound on his heart. This allowed them to look at his blood flows, the structure of his heart, as well as a number of other things.

And lastly everyone wants to know "How do they fix this?"

To keep it simple, they cut an opening on the pulmonary veins that came together behind his heart, and they cut a hole in his heart where they were supposed to go and sewed them together. Technically there is a lot more to it than that, but that's the short and sweet version.


So now with a little background, here is what went on with Lucas a bit more specifically. Like I mentioned previously, he appeared to be a perfectly healthy baby for the first couple of days after delivery. We were getting set to take him home when we were told that he had a heart murmur and would have to go from Akron General to Children's Hospital to have it looked at. After a number of hours of tests, we sat down with the cardiologist who explained to us about the TAPVR and that he would have to have open heart surgery.

Initially they put him on the positive end of the spectrum since he was healthy, decent size for his age (8 lbs, 9 ounces), and just so darned cute. We were told that the thought was that he had about a 90% chance of success with the surgery, and though it was scary we were optimistic. They were planning on doing the surgery the next day, Friday morning.

Lucas wanted to make us worry a little more though, so he developed some issues with his kidney function. The doctors decided since he looked healthy otherwise that they would postpone the surgery until that Monday in hopes they could get a better grasp on what was going on with his kidneys. That Friday night, unfortunately his condition seemed to worsen and his breathing became very labored. After some more xrays, ultrasounds, and tests they found out that one of his extra vein structures had become obstructed. This is a very bad thing, and what determines whether a child with TAPVR falls on the "healthy" side of the spectrum, or the "very sick" side.

So the surgeons were called and he was scheduled for emergent open heart surgery to correct the TAPVR first thing Saturday morning. The operation was about 6-8 hours long because it require a lot of prep as well as a lot of steps after the surgery. So we waited in the surgery waiting room with a lot of family and friends (whom we can't thank enough by the way), while getting periodic updates from one of the doctors that watched over the operation. After sitting down with the doctors that morning it was made clear to us that he was no longer in that 90% range, and could very well be in the 50% range of coming through the surgery. To say that thought made this a long day is an understatement.

Luckily every update we got was good and he made it through his surgery without any complications. By about 7 pm that night we were back in his room hanging out with our baby boy and enjoying pretty much the best Christmas present we'll ever get. When they do open heart surgery, the person's body generally retains a lot of fluid and they swell up so they leave their chest open. This sounds a little gruesome, but it really isn't. He had a patch sewn in place and some dressing over top of the area, so you really couldn't tell. After about 5 days his swelling had gone down and they closed up his chest. He just has a thin line now with a couple of really tiny stitches.

At this point I realize I left one question unanswered that may be fairly important, and that is "Why is his recovery taking so long?"

So since his blood didn't flow through his heart how it would in a normal baby, the left side of his heart isn't as big as it normally would be. So once they did the surgery, it had a lot more blood flowing to it than it had previously had. This means it has to work harder than before. Along with this the condition causes pulmonary hypertension. This basically means the vessels in his lungs are really constricted and need time to open up. So now that the surgery is over his body basically has to grow to adapt to the changes. The good side of this is that he is a baby, so growing is what he does. The down side is of course that it takes time.

After the first time going back on the ventilator, the doctors decided to do a heart catheter on him. This basically means they run a wire through one of his arteries and into his heart and use it to get a better look at everything and how his blood flows. This showed them that his heart still had high pressures and needed more growing time. It also showed them that one of his four pulmonary veins connected a little lower than they had previously thought. They think it will need to be corrected at some time, but not until he is bigger and healthier.

To help his body make this adjustment the doctors have put a number of things in place. Some of these are drugs that help his heart work easier, as well as Viagra that helps his vessels in his lungs relax. The main thing is the breathing tube they have him on, which does his breathing for him so he doesn't have to work as hard as he would if he was doing it on his own.

Obviously one of the goals is to get him off of the breathing tube and breathing on his own. Before they do this, they do what is called a CPAP trial. This is just basically them turning down the ventilator support for a short period of time to see how he handles it. A week or so after his surgery they decided he was doing well enough to take out the breathing tube. The first day he did well, but then he started to get worse again, so after a couple of days with it out they had to put it back in. After doing this he started to get much better again and the doctors were very pleased. So at the beginning of this week with the thought that the breathing tube would be coming back out they tried again. He did alright with his first CPAP trial, but on the second one he had some trouble.

So this brings us up to now. Over the past day or some we've had some discussions with doctors about what they think on his progress so far and his path going forward. Their general consensus is that they gave him a short period of time to let his heart adjust, but it hadn't grown enough to handle the load. So would giving him another short amount of time see much change, probably not. So what can be done?

The answer we have been discussing with the doctors is a tracheotomy. Basically they cut a hole in his throat and insert a more secure breathing tube there. This of course sounds bad, but when you weigh everything it seems like the right answer for a number of reasons. First of all, this will allow him to be more mobile. That means mom and dad will be able to hold him, and he will be able to come off of his sedation and be able to act like a baby as well as get treated like a baby. Secondly it gives us an avenue to eventually take him home. The doctors said most likely once he gets it we can expect to take him home in about 4-6 weeks. Of course nothing is set in stone, but just the idea of finally taking our boy home is a huge thing.

The other plus side to this is it isn't permanent. It is something that can be taken out, and will leave just a small scar. Along with the tracheotomy they are going to change how they run his IVs to reduce the risk of infection. So as parents we never want the best option to be "another procedure", but weighing everything it just seems like the best thing to do for Lucas. We're excited to see him awake and able to move around, even if it means a little bit of extra hardware.




So that is Lucas' journey so far and where he is at. I feel like it is worth saying that the staff at Children's Hospital are not only responsible for saving our child's life, but also for saving our sanity. They are some of the nicest people we have ever had the pleasure to meet, and we owe them more than we could ever give. This has been the hardest time in our lives, and I honestly hope no one ever has to go through anything like it. Even once you make it through the phase where you have no choice but to take things day by day, you enter a phase where you're constantly unsure of what the future holds, and when the future holds it.

We've been in the hospital for a little over three weeks now, and it is hard to stay positive, but it's something we have to do. Again we owe a lot to friends and family who have helped us carry this since it all began.

The best thing to remember, is at the end of all this it will be worth it.