Surgery #2

So, our night before surgery didn't go as planned. Logan woke up at 1 am and decided he would not go back to sleep, which is very unusual for him. Needless to say, mommy and daddy were up as well. By 4am an inconsolable, hungry toddler, yelling through the thin walls of the hotel room, we decided we would just pack up and drive around for 2.5 hours before needing to go to the hospital. Logan, of course, fell asleep while we were driving.

We got up to the hospital at 6:30, we brought him down to the OR prep rooms and got him ready. We were greeted by some of the team that would work on him. The anesthesiologist, the nurses and then the surgeon. We kept Logan occupied with bubbles, then he was given a medication to make him relax, and boy did it. He found a stethoscope, which he ABSOLUTELY needed to have and wouldn't give up. As the medication started to hit him he turned into a pile of mush on my lap, but he continued to put the stethoscope in his ears and take them out. When I stood up to hand him over, he was like a wet noodle. It was actually quite comical. He took his stethoscope into surgery with him. Haha.

Thus began our wait. We were updated at 10:30 that opening his chest cavity was taking longer than anticipated due to scar tissue, and once they were done, they'd begin on the heart. We were finally greeted by the surgeon at 3:00. He didn't give the usual thumbs up with a big smile, so I was immediately nervous. Instead, he calmly said that it was a very difficult surgery, but everything went as planned. We were elated! We shook his hand and thanked him about 2938 times. We went outside of the waiting room to wait for him to be wheeled by. Even though we waited almost 8 hours for his surgery to be over, waiting outside for 15 minutes to see him felt like an eternity. Once he came by we gave him a kiss and rubbed his hands, and then proceeded to take him into the Pediatric Cardiology Intensive Care Unit (PCICU). We were told they'd be about 45 minuets to an hour transferring him and all of his wires and tubes to the new bed. We grabbed all of our stuff and checked into the Ronald McDonald House in the meantime.

Finally, after a really long day we were able to see our baby. He was pink. For the first time, in almost his entire life, he was pink. His lips were pink, his nail beds were pink, his little baby toes were pink. It is incredible. He is intubated, sedated and on pain medications to keep him comfortable. Along with about 28 other medications being pumped into him. While we were there, he began to show signs of instability. His blood pressure was very low, and he was going into heart arrhythmia. More specifically, Ventricular Tachycardia. (Vtach) When this happens, the ventricles are squeezing, but nothing is being circulated. It is a very dangerous arrhythmia to have. So, everyone was on their toes trying to stop the spurts of Vtach and get his blood pressure to increase. It was hard to watch, I was so afraid that the Vtach would last too long and they'd need a crash cart. Luckily, that never happened, and about an hour later they were able to get him stable. He is still having bouts of low blood pressure and arrhythmia, but as of right now, they are not concerned. His heart needs to relearn how to pump properly and efficiently, and sometimes it has a few hiccups along the way. He is peeing, which is always great. At first, there was a large amount of blood in his urine, but now it is beautifully clear. There is no talk of taking him off the ventilator any time soon as they want to keep him stable longer and give his body a chance to rest after his long day.

 LOOK AT THESE PINK FINGERNAIL BEDS!!!! JUST LOOK AT THEM!!! I can't get over it!

So, as of right now, he is stable with a few hiccups, which is to be expected. We will learn more tomorrow as the doctors go through and discuss their plans for him. I am probably forgetting a few things, but I have been up for almost 24 hours and I am about ready to fall over. We want to thank everyone for the support, love and encouragement. The messages, the texts, everything has helped us through our day. We love you all and we are so happy to have such an amazing base of friends and family.

Here We Go. #2.

We had been postponed twice waiting for beds to open up, and when we finally got the phone call, asking if we could come tomorrow, I almost couldn't believe it. I certainly hadn't wrapped my mind around it yet. Wow, it was happening. I've been waiting and waiting to get this phone call and get this ball rolling. Now that we are going, I don't want too!

Luckily enough, my mother in law was available to take Corbin for a few days while Jake and I concentrate on Logan. We dropped him off this morning. I explained to him that he was going to stay with Nana for a couple of days while Mommy and Daddy went to the doctors with Logan. I told him that the doctors were going to fix Logan's heart so he could run really fast. He's still to little to understand what's going on. He was more excited that he was staying the night with Nana to even really care what we were doing. This was them saying goodbye to each other, and if this picture doesn't make you say "aww" then there is something wrong with you.

We got to the hospital at 1:30 for pre-admission testing. Logan has freshly come into the "stranger danger" phase, which isn't much fun when people need to put their hands on him. He didn't do too bad. The doctors are really great around here and I have to remind myself that they deal with this kind of thing all of the time. He had an EKG, his 02 struggled to get to 71, blood draws and an X-ray. This picture was taken after we were all done. He was not impressed. At. All. 

So, the plan is to close the two holes in his heart, and place a conduit from his left ventricle to his lungs. They are not doing whats called, a double switch, which would correct the pumping of his heart. (Right now, the right ventricle is pumping to his body and his left ventricle is pumping to his lungs, the heart muscles are not built to pump this way.) Unfortunately, this double switch procedure is very high risk, and at this point, not something we should pursue, as his little body more than likely couldn't handle the change. This leaves us in the position that his heart will continue to beat inappropriately, or opposite, if you will. Eventually, his right ventricle will become enlarged due to the amount of extra workload it has taken on, and it will begin to fail. At that time, he will be a candidate for a heart transplant. This heart failure won't happen over night, but possibly 20 years from now. We will address a double switch sometime when it is more appropriate to avoid needing a transplant, but more on that when we get to that bridge. 

We were also informed that Logan's defects put him at a higher risk for heart arrhythmia's, because of this, usually a pace maker is needed. We were told that there is a good possibility that the surgeon will be putting in pacemaker wires for future use while he is inside. This took us by surprise as we had never been told that he'd even be at risk for needing a pacemaker let alone how soon he may need one. We are still digesting all of this information. As always, things could change in the OR. The surgeon could decide to do something different that what has been planned. We won't know anything 100% until tomorrow after surgery.

Surgery is at 7:30 am, we have to be there at 6:30, poor little Logan can't have anything to eat, which may in fact, be the hardest part of the whole morning. Haha. He will be very mad that he cannot eat. They expect the surgery to take 5-7 hours, and recovery to be 2-3 weeks. They are going to try to get us home by Christmas, but really, the ball will be in Logan's court. If he needs time, he needs the time. We cannot rush him. 

As I type this, he is sound asleep in his fancy hotel grade pack and play bed. We are hoping we can get as good of a nights sleep as possible, we will need the rest. Thank you all, as always, for the love, support and encouragement. We couldn't do this without you all. I will post another update after surgery, once we have all the information. 

Special thank you to Carol and my mom for helping take care of Corbin, the house and the cats while we are away. 

Some extra pictures of Logan enjoying hotel life. 

Postponed

The surgery has officially been postponed. We should be heading to the hospital now and getting ready for surgery tomorrow. Due to the fact that there are a lack of beds, Logan's surgery had to be pushed back. As frustrating as it is for us, we understand that this is the way it works. There are sicker kids that need those beds, and for that, we cannot be mad. 

Now, we are basically "on call". We do not have another set date, we just wait until we get a call that there is an open bed, and we go. The scheduler I spoke with informed me that the surgeon is going out of town next week, so the earliest we may possibly get a phone call would be the week of the 14th. 

It's hard to mentally prepare for something like this, and it's even harder to have that preparation fall to pieces. Now, without having a date, we never know when we will have to drop everything and go. I honestly, feel like at this point, its better. Rather than being given another date to look forward to, and then to have this happen again. Now, I know when I see my phone right with that lovely area code, I know it's time. 

So, our bags are packed. We will be ready when they call. I cannot live in this bubble anymore, so I can only hope that Logan is in good health (no colds, or fevers) when we get the call. I will update more whenever I know anything, but as of right now, I won't know anything until I get a phone call that a bed is open. 

As always, thank you all for your continued love and support!