Thank you all!

He is home! I knew when I left on Thursday that we wouldn't be there much longer, but I didn't expect to have my boys home the next day! Logan's drainage had been under control, he just needed an echo and some blood work and that chest tube removed and he was good to go. I figured it'd take a few days.
Jacob kept me posted on the day as he went into getting the echo, Logan had to be sedated, so I was super curious how he handled it, but I'd send message after message and get no answer, that's when I knew something was going on. Then I get a picture of Logan in the car seat all bundled up ready to come home, My stomach was in knots, my anxiety through the roof. I couldn't even stand waiting the 2 hours it would take for them to get home.

We are just so ecstatic to all be together again. It was so much shorter than we expected, but the longest 10 days of the year. He rocked this recovery. I couldn't be more proud.

With that being said, Jake and I want to thank everyone from the bottom of our hearts for everything. The thoughts and prayers, the messages, the cards, the gifts, and everything in between. We are overwhelmed by the generosity of everyone that took time out of their lives to send us gifts and cards, the thoughtfulness will never be forgotten. You have all made our journey a little easier on us, and for that we are forever appreciative. (Even to the (still) mystery person who sent the BooBoo Buddy Bear, which was a huge hit!)

Special thank you to Carol and Sue for watching Corbin during our first week in the hospital. It was nice to know that we didn't have to worry about him and could concentrate all of our energy on Logan. It was a huge weight off of our shoulders and we cannot thank you enough.

The nursing staff, even though they'll probably never read this, in the bay in the PCCU are just absolutely amazing. I cannot stress enough about how good the team of nurses there are. I always know Logan is in the best of hands if we aren't there. It's such a good feeling. Thank you.

Jakes work for being so understanding in our time of need, and with such short notice of needing to be available for his family. I, personally, am extremely thankful for the kindness they have shown to our family.

We just cannot thank you all enough for being there for us. We love you all!

Two Steps Forward...

One step back. That's something you always have to remember being in a situation like this, is that sometimes its not always forward momentum. Logan has had a huge couple of days. He was extubated, then lines and medications started to disappear. The first day he was extubated, he wasn't quite himself, he was tired and grumpy and just wanted to be left alone. I really don't blame him. The next day he was able to start eating, let me just tell you that once he got some food into him, he was a new man. I started to see him again, my Logan. He did great with food and liquids, and he's on a normal diet now. YAY!

Last night we discovered that his chest drainage tube isn't working correctly. They are assuming there is a clot in the tube within his chest and instead of allowing fluid to exit through the tube, the fluid is actually being drained from around the tube. So, needless to say, there is no easy fix for this. They cannot remove the clot. For now we are using gauze pads and his diaper to help absorb any drainage. The issue is that it cannot be measured. In order to have a chest tube taken out he needs to have a minimum amount of drainage per 24 hour period. Without it being measured, we have no idea how much he is draining. We really aren't clear on how they plan to proceed. We were told yesterday that he can wear normal clothes, but because of the drainage issue, we don't want to put nice clothes on him just to get them all yucky, so that is a bummer.

This morning we were told he had a really good night, he slept well and when he was awake he wasn't fussy. Since we have been with him, we've gotten him up and he had some fluids and a cracker. He has been very upset, sad, angry, hurting, and to be honest, I really don't know what is wrong, but he is very off. He's not being himself, and he's very hard to console. He also ended up having more irregular heart beats today. They aren't sure why, but told us that its normal to have irregular beats post op and that they'll keep their eyes on it. They ended up giving Logan morphine in hopes that it'd help calm him down, which it did. He's been sleeping ever since. His heart rate is regular as of right now and we're hoping it won't change again.

I don't think they are planning on making any big changes today with him. Today may just be a rest and relax day after the few big days he had. Maybe it all caught up to him, maybe he's just over being poked, touched and prodded. I'm really not sure, but I hope after he wakes up from his nap, he is his normal self again.



Update within an update:
I came home yesterday to be with Corbin. He was so happy to come home and sleep in his bed. It was really hard to leave especially because Logan was having a hard day. Even on an easy day, its hard not being there. Jake informed me last night that they were able to get the clog out of his chest tube and he dumped a bunch of fluid. It must feel so much better, and I can only imagine that he is in a better mood. I get my updates through Jake while not being there, so the information I have won't be as specific as it used to be until I get back up there. Tomorrow we switch, and Jake will come home for a few days. It works really well doing it like this, but it's just hard being away and not knowing exactly what's going on. So, as I know of right now, not much has changed, they're watching his output from his chest tube and he's still on oxygen, although they are trying to wean him off of it. Fingers crossed we can get rid of that tube too!

As always, thank you to everyone that has shared our story, sent well wishes, prayers and just a message along our journey. We appreciate everyone and everything!

Post Op Day 1

Where did we leave off? Last night Logan remained stable for the most part. He had a few more runs of vtach and low blood pressure. They gave him a medication to help with his arrhythmia and he didn't have any more that were of any concern.

They do morning rounds everyday and it's always nice to be there to hear what their plan is. So, today the plan was to take Logan off of the paralytic, so that he can start to wake up and move around. In doing this they have to find a balance between him being awake and him being comfortable. This took a little while and was hard to see. He would wake up, move around and start to gag, cough and bite on the intubation tube. He was trying to cry or yell but couldn't make any sounds. We comforted him the best we could, and the nurses were quick to give him something to manage the pain and anxiety. He would fall back to sleep pretty quick after given more medication. This happened throughout the day, but they've finally found a good mix of medications to keep him comfortable and sleepy. Although he is intubated, he is initiating his own breaths. The machine kick in for him if he forgets to breath, but for the most part, when we left him tonight he was doing all of the work, which is excellent and a great step in order to get that tube out. (Fingers crossed that it comes out tomorrow!)

They did end up giving him some blood to help with his blood pressure. He has been having a hard time keeping it up, but after the blood this evening he seems to be doing much better. Some medications can have an effect on blood pressure as well, so that is something everyone is watching out for. At the moment though, it is holding steady. Other than that, there is nothing really new. It is all baby steps right now, which is fine. We are following Logan's lead. Letting him show us what he can handle right now. Tomorrow is a new day, he will be getting his chest bandage off, which I am excited to see, and hopefully, extubated! I will update tomorrow.

Also, we had some visitors today!!!!

As always, thank you all for your love, messages, thoughts and prayers! He's doing really well!

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!

Second Surgery

I began counting down the days once we hit October. I try not too, but it just happens. The closer it gets, the faster the days go by. I dwell in silence about the thoughts that are constantly running through my head. Sometimes my pessimism really gets the better of me. Logan, on the other hand, is as happy as can be. The happiest kid I have ever met. He's doing well, considering. He had his last checkup last week at the cardiologist, his O2 was low, 72-78, alarming to me, but not to the doctors. He had an echo, which he did not like. This was the first time he wasn't calm and it was really hard on both of us. I had to hold him while they got all of their pictures of his heart. The doctor said he is ready.

So, this is what they are going to do; They will close off his current shunt. They will not remove it because it is not necessary, so it will stay in, just be sutured shut. They will then run a conduit, basically a tube, from his right ventricle to his lungs. This conduit will act as the pulmonary vein, bringing de-oxygenated blood from the heart, to the lungs. They will close the hole between his ventricles and the hole between his atrium's. This will be a big change for him and how his body pumps his blood. His body will have to relearn how to circulate appropriately. Besides it being taxing on his circulatory system, it is a riskier (as they all are) surgery because of the way Logan's heart is formed. His left ventricle is on the right side of his heart, it is essentially twisted, so the conduit has to go further to reach the lungs. This can present a few problems, the conduit has more of a chance of becoming compressed by surrounding organs, or general pressure within his chest cavity or even his ribs. It is also a higher risk of clots just do to the sheer size of the conduit. He will have a non mechanical valve in the conduit as blood is leaving his ventricle. I am unsure if it will be a bovine valve or a synthetic valve. We will find out. So, that is it, in a nutshell.

Seems simple enough, right. Hah.

One of the hardest parts of this ordeal, besides the surgery, is the bubble you surround yourself and your heart kid in. You try so hard to avoid any sickness weeks before surgery day. This means, staying home when you're invited out, Not going to public play places, sanitizing your home 3 times a day. (Not really, but you get my point) It's hard. Going to the store is the highlight of my day. If he gets sick, they will reschedule his surgery. It isn't the end of the world, but when you mentally prepare yourself for something like this and then you have to prepare yourself for a second time, it really takes a toll. We have our life scheduled around this surgery, and if it is rescheduled its just an added stress to change everything again. Luckily, we have amazing friends and family that have offered to help us out during our journey. We cannot thank them all enough for their love and support.

We are expecting a call on Friday to confirm his surgery. There is a chance that they will not have a bed for him due to unexpected emergency cases. So, yet again, another unknown. We can only cross our fingers that everything works out and goes according to plan. I am impatiently, anxiously awaiting that phone call.

So, that's it. That's the update I have. I will write again when we get all checked in. Thank you all for your continued thoughts and prayers.