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.

365 days

365 days. 1 full year. We have had Logan in our lives. It hasn't been easy. Nobody could promise us that he'd still be here. There were some nights that I was afraid to let him fall asleep, fearing that he wouldn't wake up. Other nights, I cried myself to sleep due to the uncertainty of his future. This was a hard year.

Here he is. 1 year old. So amazingly perfect, yet so devastatingly broken. He's my healthy sick kid. Which, is a different kind of hard. Not to compare it to the other families we have had the pleasure of knowing. We could never discredit their hardship, it is real, and it is raw. We live in constant uncertainty. "He looks so healthy!". We hear it all the time. It almost gives us a sense of false hope. As if nothing could go wrong, because "he looks so healthy". Sometimes I feel as if because he "looks" so healthy, his health isn't taken as seriously as it should be. When his 02 has dropped, but he still maintains a decent skin pigment, it gets overlooked. He was pink for the majority of the first year of his life. He was blessed with his father's olive skin tone. I remember the first time I saw him turn blue. The first time that it really punched me in the gut that he is sick, and he will always be sick. The first time I was asked if he had something blue to eat, and I had to explain that he didn't but he has poor circulation (which is much easier and quicker to say than to get into the details). That was a comment we got a lot. I held my emotions, but it never gets easier to hear. It was hard to know that my "healthy" kid was starting to show signs of not being so healthy.

 Although our road has been bumpy with an occasional detour, we have had a relatively smooth ride. That terrifies me. I feel as if just around the bend we are going to loose control and veer off the road, onto some uncharted territory.

There is this voice, which I cannot rid myself of. It tells me, more often than I'd like to admit, that our luck is going to run out. When it gets bad, its going to get really bad. Maybe that's my pessimism talking, maybe that's the part of me that knows how life goes. I don't know, but I can't help to think that we aren't always going to have it this "easy".

That voice torments me. It tells me at night, when he is being fussy and inconsolable, when I get frustrated that I need to be patient and hold him close because he may not be here much longer. When I see him laughing at his brother, I hear that voice. "Cherish this moment, it may be the last". I know that may be hard for some of you to comprehend, or maybe you think I am being dramatic, but this is my reality.  He comes with no guarantees. Every time we get to enjoy a milestone that he accomplishes, or see him play with his brother and my heart is about to burst, I remember that he, even though he doesn't look it, is very fragile. Every day I have with him, I remind myself that we are not promised any of this.

I don't really know what I am trying to say, or where this blog post is going. Maybe it's just to let everyone know that this is scary. We may look like we have it all together, and that it isn't hard, but thats not true. We have no idea what we are doing. We don't know how to take care of a medically complex child whom looks like the picture of health. We are just winging it and hoping for the best.

I wish every single day and night that Logan didn't have this disease. I wish that I could give him my heart and know that he'd never have to undergo another surgery again. A surgery that will never actually fix him, but only get him through to the next surgery.  I then realize that wishing away his ailment, means wishing him away. That thought is unbearable. I cannot imagine not having him, or who he would be if he didn't have this scar on his chest. If keeping him means keeping his unpredictable future, then so be it. Maybe that's selfish.

We have learned a lot this year, a lot about ourselves, our marriage, our family and our priorities. Our ordinary world was turned upside down 365 days ago, but we are figuring it out. We don't take anything for granted anymore. We have learned what is important to us, and what we value most. We have learned to love deeper than I have ever imagined. We have a long road ahead of us, and it is scary to not know what our future holds. We may not look it, and we will never ever admit it, but we are scared. Jake is my rock, and I am his, and because of that, we stay strong for each other, when in reality we both just want to break down some days.

We both appreciate beyond words all of the love and support our friends, families and even strangers have given us in regards to Logan. It really helps keep our heads above water, knowing we have someone to turn to when things get rough. So, thank you. Thank you for always being there when we needed to talk. Thank you for understanding when we didn't want to talk. Thank you for the hugs, the positivity, the prayers, the thoughts. Just knowing how many people were thinking and praying for Logan during his last surgery was overwhelming and just absolutely incredible. Again, thank you. As always, a huge thank you to my husband. I couldn't do any of this without you by my side. I could write a book about how much I appreciate you, but I hope that I show you everyday the love I have for you and how thankful I am for what you have given us. You are an incredible father. I love you so much.

In closing, I can only wish for another hundred years for Logan, but for now, we will take it one year at a time. His next year of life will be just as hard if not harder than his last. We are staying strong, we are holding him tight, and we are enjoying every moment we can as a family. Our perfect family.

Heart Cath

What is a heart catheterization? Well, in laymen terms, the doctors sedated Logan so they could put a catheter into an artery in his groin and push it up to his heart, they also put one in a vein in the same location, up to the heart. They are able to get very accurate readings of blood oxygen levels, pressures and they are able to see the inner workings of his heart as they take X-ray pictures. They also push a dye through the catheters, which shows where blood is or is not flowing. It gives the doctors a better dynamic of the heart in all of its complexities.

We had to be there at 6:45am, so we woke Logan up, loaded him in the car and headed up. We got all checked in, changed him into his little tiny hospital gown, which was surprisingly super cute, and he played in the hospital crib. The nurse put on a numbing cream on each side of his groin, gave him a dose of benydryl and a shot of morphine. It was only about 20 minutes until we were on our way down to the Cath lab. I chose to carry Logan down, and the nurses pushed the empty crib. It seemed like we walked forever, and we did. It was a very long walk from where we started. Normally, after carrying Logan for more than 3 minutes it starts to take a toll on your arms and back, that day, I felt like I could have carried him forever. We got to the door and we had to part ways, the meds were kicking in at this point and he was getting drowsy. We gave him kisses and handed him over.

There was a small waiting room separate from the more public waiting room. We were all alone in there, it was nice and cozy. We waited until the doctor came to speak with us before he preformed the procedure. He explained what he was doing (as I explained above) and told us that as long as everything goes as planned, it wouldn't take more than an hour or two. Then we would get to see the pictures and videos that they took, and he would explain their findings to us. Once he left, we went for a short walk down the block to get some breakfast, a bagel and coffee. We returned and waited.

10 o'clock rolled around and the doctor emerged from the cath lab, he said that Logan did great (of course!) and that we could follow him to see the pictures. This is where we obtained a lot of information, most of which I have forgotten because I was overwhelmed. What I did retain was this short summary of what we were told.

His heart is a little more complex than we originally thought. The dextrocardia really complicates the dynamics of his heart, and it also makes "corrective" surgery even harder. Just to remind you, Logan's heart pumps opposite of how it should. His right ventricle is pumping to his body and his left, to his lungs. The heart was not built to pump like this, and eventually (years from now) it will fail because the right ventricle will become to weak to keep up with the pressure needed to supply his body. The main goal, eventually, would be to re-route his heart so that the left ventricle (the correct ventricle) would pump to the body. In order to do this, they would need to place a conduit from the aorta to the left ventricle, and plumb the right ventricle differently to pump to the lungs. They now, are not sure if they will be able to make this happen because the conduit would be so long, that it wouldn't be a stable structure spanning across the heart. It is still an option at the moment, though. He (the doctor) also mentioned simply replacing the shunt at his next surgery and letting him grow bigger, and re-evaluating the heart in a few years. The doctor said there was a possibility of making Logan into a single ventricle patient, which would basically bypass the right ventricle all together and basically deeming it useless. I will fight tooth and nail to not let this happen. The doctor d

oesn't seem to think that it is something that would happen because he does in fact have 4 working chambers, but it is a possibility. I asked about long term prognosis, and of course, everything is hypothetical, but Logan will more than likely need a heart transplant at some point in his life. Depending on what steps they take in these next few years will determine how long his heart will carry him. Could be 20 years, could be 60. We don't know.

So, they now have to take all of these findings, bring it to a conference with the surgeon and other cardiologists and discuss what they can do, what they will do, and when they want to do it. We will not know anything for another 4-6 weeks. The doctor seems to think that his next surgery will be between 2-5 months. Every CHD is complex, but the dextrocardia really puts a spin (literally) on things and makes everything so much more complicated.

It took me a while to get this updated, and I know I have forgotten some information, but that is the jist of it for anyone following our story. As always, we appreciate your support and love during our journey.

Here We Go.

It's been a while since I updated, so let me bring you up to speed. Luckily, nothing too exciting has gone on between my last update and now. Logan was sick in March, and we ended up at the cardiologists to make sure it wasn't anything respiratory, and it wasn't, thankfully. While at that appointment, we made another appointment, basically one to check up on him after his cold subsided, and before our one year appointment in July. We went to the follow up appointment on Friday.

Lately, Logan has learned how to crawl, which is just wonderful, he also pulls himself up and walks along furniture. He does amazing, and he IS amazing. Because of him moving more, he exerts more energy, therefore, needing to breathe faster to compensate for his already low oxygen levels. This in turn, makes him blue. His lips turn blue/purple, and his extremities get purple or ashy. Seeing this really brought it back for us. It is now in our face everyday, that our amazing boy, isn't as healthy as we pretend him to be. Its kind of like an out of sight, out of mind type of thing. It's no longer out of sight. So, of course, this has been a concern of ours. I planned on bringing it up at his appointment.

We arrive at the appointment, they do the routine check in, EKG,blood pressure, O2 levels, etc. As soon as they tried to obtain his o2 saturation level, I knew it wasn't going to be a quick appointment. Logan's o2 sat. is typically in the high 80's. 85-89. His number that popped up on Friday was 73. It fluctuated between 73-84. The doctors then ordered an Echo of his heart. Once this was completed, I was informed that his shunt, is in fact, becoming too small for him.

Logan weighs 24.5 lbs. He is in the 97% for weight amongst kids his age. Our doctor made sense of it to me like this, he is the size of an 18 month old. They need to look at him, and make their decisions based on that fact, and the fact that his heart is working as if he is 18 months old. We were told that he would make it past his first birthday before needing his next surgery, but when you think about it with this logic, his body is functioning like that of a year and a half old. All of this leads to the plan that it is time to move forward.

It is time to start planning for his next surgery. He will be going in on the 27 for a heart catheterization, where he is sedated and they insert a catheter into his artery in his thigh and run it up to his heart where it will take specific measurements of pressure, o2 levels, etc. He will also have an angiogram, where they insert a dye into his heart and use an x-ray camera to record the blood flow. This will give them and the surgeon a better idea of how his heart has grown and help them decide where they want to go from here. We were told it will go one of two ways, either he will go in, and only have his shunt replaced, or he will go in, have the shunt replaced, and they will continue with the big surgery. We will not know what their decision is until they have their conference after the heart cath is done.

I am assuming we will be back for surgery within the next couple of months. I was really looking forward to having his birthday at home, and I know we don't know for sure what is going on, but I have a feeling we won't be able to.

So, here we are and here we go.

Happy New Year!

We haven't updated recently, because not much has gone on. Logan has had a cold for what seems like forever, and I have brought him to the doctors and urgent care more than I'd like to admit. I'm learning now, to stop being so anxious about it, and recognize the more serious signs of when I need to worry vs. standing over his bed while he sleeps when hes congested. It's still hard not to get nervous, but I guess that comes with the territory.

Today was our 6 month checkup. When we left the hospital we were told that Logan would have another surgery before he was 1 due to the fact that he'd outgrown his shunt and need a replacement. So, today was a big day, would we get a surgery date? How soon would it be?

Logan did great at his appointment. He tolerated the many blood pressures they took, he stayed still for the EKG, and he did as good as he could for the echocardiogram. Once they were done with all of their tests we went back to our room, where Logan decided to take a nap, and waited for the doctor. Once he came him, he did a routine check of Logan, listened to his heart, checked his skin, and anything else he could do while Logan slept. The doctor then went to look at the pictures from the echo. We waited.

He returned and said that everything looked great. Better than great. Logan is doing remarkably, in all aspects. We were told we were good for another 6 months and they would check again. The shunt that was put it was big to begin with, so Logan has grown into it, but not out of it yet. Our idea of having another surgery within his first year is now gone. (Unless something drastic changes)

The doctor seemed astounded with how well he is, and how good he looks. He said that the next open heart surgery is a big one, (It scares me when they say that) and that they want Logan to be as big as possible before they do it. So, they will let him grow as much as they can before even thinking about surgery. The doctor suggested we could be pushing 2 years before the next surgery.

The next procedure is called the Rastelli Procedure. I haven't done much reading on it yet, nor do I want to. I plan on enjoying my time with Logan until I really need to concentrate on the next surgery. I don't want to get too worked up yet, haha. So, we have a "healthy", happy baby, and we are going to enjoy the next 6 months of him achieving new milestones and becoming mobile. Yikes!

(Here's a picture of him being a superman ninja turtle, and when he had a small snack break from the echo)

2 months!

Wow. 2 months old. We have received letters and cards from near and far regarding our little heart warrior, it's just amazing how many people we have reached!

I haven't updated lately because there hasn't been much to report on. No news is good news! He just got home from his 2 month appointment. He is 13.1 lbs and 23.5 inches long. He is doing great! He eats a lot, and sleep great. He's starting to be more alert now, which is fun, and he smiles so big it makes my heart melt.

Corbin loves him and he's a great big brother. He still has his days when he forgets he's not an only child anymore, haha. All in all, everything is on track. Logan is a healthy little guy, if you didn't know about his issues you'd think he was a perfectly healthy baby. We couldn't be happier! Thank you all again for all of your thoughts and prayers! We will update when we have anything new to mention. Take care!

Cardiology Appointment

Today was Logans first cardiologist appointment since coming home. He did excellent.

His sats were 85% which is right where they want them. His blood pressure was great and his lungs sounded perfect. We were told we could discontinue his Lasix medication, as he shouldn't need it anymore. The doctor was thrilled with how good he looks.

Unfortunately at this time it is too early to get an idea of what is next. The doctor mentioned a procedure called 'The Glenn Procedure" which I have read about previously. It is another shunt procedure, and not a permanent fix. But whether or not they will do it is just a theory right now.

They expect that his next surgery will be within 8-10 months. We go back in 4 months for another checkup. Everyone seems very pleased with his progress. He just needs to gain weight now!

I also wanted to add that we welcome visitors! We just ask that if you or your kids are sick that you wait until you're feeling better. A simple common cold can land Logan in the hospital rather quickly. Thank you in advance.