My Dedication to Nathan

So who is Nathan? He’s an angel. He’s our miracle. He’s a stubborn headed kid that fights everything. He smacks his spoon across the room during meals, he purposely chokes on the meds we give him and spits them out. He learned to throw up in the middle of the night just to get our attention. If I block his path in the hallway, he’ll try to go around me and bonk his head into my legs for 20 minutes until I finally give up and let him go through. He kicks his legs, squirms all over, and fights me with everything he has every time I change his poopy diapers. When we’re in the hospital he’s the kid that extubates himself and rips the IV out of his arm the moment the nurse turns their back. After spending the first year of his life on his back he’s learned to hold books open, play with toys, and do just about everything with his feet. His first word wasn’t mommy or daddy, it was “book”. He puts his head forward whenever I see him, his universal sign for please headbutt me daddy. We lay on the floor and he screams and I scream back, that’s how we communicate with each other. He let’s me rock him in my recliner at the end of the night for half an hour before bed but never at any other time of the day. With every ounce of his being he is a fighter. Thank God, he needs to be. He’s my second son, my baby boy with Ebstein’s Anomaly, and I love him with everything I am.

We won’t be at the walk this year because Nathan will be in Minnesota having his 6th open heart surgery. He’s 17 months old. It’s amazing what we’ll go through to make sure our heart kids get a shot at life. It’s worth all the pain, all the tears, and a lifetime of worrying just to see them smile and hear them laugh. His laugh is so infectious it lights up the entire room. Three times now I’ve had to watch Nathan go through drug withdrawals, indescribable pain, and fear. He’s trying so hard to catch up with the rest of the world and we’re here cheering him on at every single minor milestone he achieves. He finally learned to sit up shortly after his first birthday. He just started standing on his own. I’m so sad he has to face another setback.

Whenever he wakes up or goes to sleep he stares at the ceiling in his room. He’s always done it. My wife is convinced there’s an angel watching him at all times and that he can see them. I hope so. The only thing that keeps me going is knowing all the good that’s come from Nathan’s journey. We’ve raised over $6,000 in the past two years for this heart walk because of the friends and family that hear our story and are moved enough to help. We’ve had countless people reach out to us and tell us how much our story inspired them in different ways. So much good has come out of so much sadness. I hope our story and faith can continue to be a testimony to the world that God is real, he loves us, and he has a plan. With faith, even a broken child can move mountains or so they say. I don’t know what Nathan’s future will be. I hope he lives to be 100. Regardless of how this story ends, Nathan WILL have a positive impact on this world.

Happy Mothers Day Jess

When we brought Nathan to Minnesota together on February 12th, the last thing I expected was for Jessica and Nathan to still be there on Mothers day 3 months later. I'm at a loss for words when I try to think about how grateful I am for Jessica. She's an amazing person, and I wouldn't have anyone else by my side helping me raise my kids. She has sat by Nathans side, mostly alone, 12 hours a day, for 3 months straight in a hospital room. That's love. Both of my kids light up when she walks in the room. Nathan will be having a terrible grumpy day for the nurses but when she walks in he's got an ear to ear smile every time. I don't know how she's done it but she's managed to stay strong for that boy and because of her, he's remained happy through this entire journey. Despite the pain and fear he must feel, if his mom's there he smiles and knows everything is going to be OK. How did I get so blessed to find this woman? She was literally made to take care of these children. I had hoped that at least one of my kids would be a daddy's boy but they aren't and they'll never be. Sure I get smiles and laughs and we play together, but when they get sick, or scared, it momma they want to hold them.

On May 20th it'll be 10 years since the day we met. I hope she's home by then. Life apart has been so difficult. In my mind I knew how much she did during the day but now that she's not here and I've had to be a single father for the past 2 months I have really come to appreciate everything she does. Cleaning, shopping, cooking, laundry, taking care of the kids (especially Nathan), etc, etc, etc... What do you get someone like that for Mothers day? If asked her she'd tell me not to get her anything. She'd say "I don't matter", get your Mom something, she's done so much for us. That's my wife, she never asks for anything. Well honey I love you so much. I have this note, some flowers, and a promise for getting your hair done and some massages when you get back into town. If you don't make it back in the next week or so I promise to come back to Minnesota with Landon to visit. Let's hope it doesn't come to that and you guys will be back next week. Fingers crossed, prayers said, no more setbacks, no more delays, I want you guys home now, it's time.

Happy Mothers Day,

Aaron

Heart babies can change the world

I do a good job at ignoring the sadness but sometimes it comes on hard. I'm a freaking mess tonight. I can't stop looking at pictures and videos and thinking about all the good times we've had with Nathan. This trip was supposed to be no more than 2 weeks and it's turned into 2 months with no end in sight. I haven't seen Nathan smile since February 14th at 7AM, right before he went into surgery. I usually do a really good job of separating myself from the reality of what's happening. I can talk about all of his problems in great detail without any trouble (as I'm sure you all know by now). But when I start watching old videos and looking at pictures of him it hits home hard. A couple of weeks ago when they were shocking him I literally begged God to take him home that day if he wasn't meant to live through all of this. I can deal with a lot of suffering for ourselves and Nathan if I know he's going to be OK in the end. He didn't die that day so I can only assume he's meant to live and we just need to keep having faith.

I believe so strongly that nothing but good is going to come out of this situation. I truly believe that heart babies can change the world. All of this will make myself and Jessica better people in the end I think. I've always struggled with having empathy for other people and this seems to be changing that. In the past couple of months Jessica has gotten involved on a lot of different heart mom forums and she does an amazing job at giving advice to other parents that are in our situation. She'll wake up in the middle of the night to answer calls from scared parents she doesn't even know, just to listen to them. She's amazing really, I just don't know how she cares for other people as much as she does. And then there's that High School Class "Nathan's fan club" in room 710. They put together an amazing banner and that awesome karate bear and sent them to us. We don't know these kids, but somehow we matter to them. Then we decided to start this blog and it turns out around 400 different people from all over the world are reading it every day. I hope this blog is encouraging people and helping other heart parents. And of coarse there was the heart walk last year that you all made possible. We had the biggest team in AZ and raised the most money for heart disease charities. None of this would have ever happened if it wasn't for Nathan. I can only imagine the great things he'll do in the future.

Aaron

Getting that dreaded call at 1AM

Jessica called me this morning just before 1AM. Nathan was deep trouble. His HR skyrocketed into the 200's again for no reason and during the emergency he had suddenly clotted off his only IV line. They had no access to give him any meds. Jessica said he looked bad, the worst he's ever looked, blue all over. Nathan doesn't have many areas they can put an IV anymore, he has clotted off everywhere you would normally put one. Emergently they put an IV in his bone. The NICU team was then able to place an IV in his scalp as well and gave him some narcotics and sedation meds to knock him out. Then they shocked him. I heard all of this over the phone, him crying, all of the beeps and doctors working, it felt like I was there. Shocking him worked the first time thankfully, it brought his HR back down where it had been all day.

The priority for the day will be to get the IV out of his bone and into a vein. They'll do an ultra-sound of his arms and legs and find a place they can put it. I'm assuming going down to the OR is out until we can figure out what happened and why. The doctors have no idea why he's doing this and it came out of nowhere. The plan had originally been to pull the pacer out yesterday but they delayed it until today for whatever reason. I'm glad they did because I'd like it in there as a backup device in case something like this happens again. It's spring, and on top of that it's the week of Easter. Spring brings renewal, everything heals and comes back to life this time of year. What's going to happen this week? It's not in any of our hands at this point. I'm hoping and praying for Nathan to come back to us.

Aaron

Back to the OR

The latest and greatest...Nathan will be headed back to the OR. As sad as it is to say, these are becoming familiar words. I'm almost to the point of becoming numb to the sting of all of the bad things that Nathan is enduring.

 I requested a care conference today. This is basically when all of the different medical divisions that are seeing to Nathan's care (e.g., cardiologists, surgeons, intensivists, social workers, etc.) come together to have a powwow to discuss the next plan of action. The deciding factor was that Nathan's pacemaker needs to come out. They feel that no amount of antibiotics can guarantee that the infection that lurks on the pacemaker can 100% be killed. Thus, it needs to be taken out. The question that remained was, do we need to put a temporary pacemaker in?

The answer is, we don't know. So, they decided to turn his pacemaker off today to see what he could do on his own. They will introduce some new meds to see if that can help the heart rate stay higher. When they turned it off he was maintaining in the 90s. Which is super amazing. However, the downfall is that he spiked a fever today; yes, he has a cold or the flu, because why not?! The fever could be what led to a higher heart rate. So, no one knows if he can sustain a good rate without a pacemaker. Only time will tell. Pending this information, we will go to the OR early next week. The silver lining is that maybe, just maybe his heart is in such a good place right now that it may not need a pacemaker ever again (I'm not holding my breath for this conclusion).

There are so many unknowns at this point. I do know that we are all at our wits end trying to figure out the puzzle that is Nathan. I'm so tired of seeing him suffer and be miserable. I'm tired of not knowing what challenge I'll face with the coming day. There has got to be a limit to how many hardships we'll be weighed down with. For the time being, we will face this new ordeal head on and with no fear. At this point, the time that I will be able to come back home is unknown. I guess we'll just take it one day at a time...slow and steady wins the race, right?

Butterflies, rainbows and magical heart fairies

Things are going good. Really good! Too good! People keep coming in the room asking when the other shoe is going to drop. What they've failed to realize is that there is no other shoe. The person wearing the shoes is an amputee and has only one foot :) .

48 hours ago we sent Nathan in for his 5th major heart surgery to replace his pulmonary valve for the second time. After surgery things were immediately 100% better. His heart shrank in size because it's now pumping blood correctly. All of the pressures in each chamber of the heart are perfect. Exactly 1 day later they decided to close his chest and put the pacemaker in. We thought this was highly optimistic because it usually takes a couple of days for the swelling to go down before you can close the chest. He did awesome with the procedure. Now 24 hours after having his chest closed they wanted to switch out the tube they were using to help him breathe to a less invasive tube. They figured since they were taking the tube out anyway they might as well give him a shot to breathe on his own. It was kind of a long shot since he just had a major procedure done yesterday. Well guess what, he's extubated and doing great!

Not sure what to say other than God is good and Dr. Dearani was put on this earth to fix broken hearts. After all of the wild heart rates and shocking over the weekend Jessica and I were both completely sad and starting to give up hope. On Saturday I prayed that Nathan either get better immediately or be taken from us. I can deal with a lot of suffering if I know the end result is going to be good for Nathan but what I can't deal with is him suffering and suffering and then dying. Thinking of him being shocked makes me sick to my stomach. I either wanted it to end quickly or for things to start looking up. Well, prayers answered because he's pulled a 180 and looks better than ever.

I know we have a long way to go and probably some more bumps ahead but for now everything is butterflies, rainbows, and magical heart fairies.

Aaron

Where to start?

As Aaron has previously stated, it has been a rough week. The gist of it being that Nathan has been in and out of several different types of heart rhythms. Currently, he is in atrial flutter. This means that the top part of his heart is fluttering and can't pump appropriately. There is no clear reason why this is occurring. What we do know is that his heart isn't responding to any of the things that gets him out of this strange rhythm (i.e. meds, shocking him).

They have determined that he definitely will need a pacemaker. What is still up in the air is whether he will need another open heart procedure. The surgeon believes that Nathan's new pulmonary valve (the one that takes blood to the lungs from the heart to get oxygen) is already severely faulty. It will need to be replaced sooner rather than later. His thought is, since we are already here, and Nathan is somewhat recovered, we should do it now. Yet, they can't guarantee that a new pulmonary valve won't crap out like this last one did.

This is an incredibly tough decision to make as a parent. We don't know what the right answer is. Do we say 'yes, do it' and then see amazing results or do we see the worst possible results? Do we say 'no, not now, lets wait' and he gets better or does he go into failure at home and we are fighting to get him to surgery quickly to save his life? We don't know the answer.

At this point, we are praying that the choice is taken out of our hands and the answer becomes obvious. We are too afraid to make a choice and have that choice backfire in our faces. What if the choice we decide on ends up meaning that Nathan's life ceases to exist? How can we live with ourselves? As a couple who functions so well as a team, we are finding ourselves split on what to do. We are practically across the country from one another trying to make a life altering decision for our 9 month old son. How do we do such a thing? How do we not bicker at one another? How do we not get angry and question everything? Who is right, who is wrong?

The answer is...we don't know!

In light of this new information, Aaron is trying to arrange to come back to Minnesota. I want so desperately to see him again, but not under these circumstances. I wish that my seeing him meant that Nathan and I were coming back home. I wish that it meant that I got to see Landon again. I've not seen him for almost 6 weeks. How do I survive for so long without seeing my other child? I never thought that I could go more than a few days without seeing my children. Now I know how truly heartbreaking it is not to see Landon. I wouldn't wish this kind of journey, and this kind of suffering, on the Devil! No one deserves this! I'm pretty sure that I was a horrible person in a past life because I'm definitely making up for it in this one.

I apologize for the incessant rant, but I had to express all of this somewhere. Tomorrow will be the day where we make the BIG decision for Nathan. I pray that we are guided to make the right decision and that our son will make it through all of this.

Some good news, some bad news.

As long as I've known my wife, she's never been wrong. About anything. I'm serious about this. She has a 6th sense about literally everything. She's right about what restaurant we should go to, whether or not to wear 3D glasses at the movies with Landon (DON'T DO IT!), what car we should get, what house we should live it, whether I should go camping this weekend, and most of all she's ALWAYS right about Nathan. It doesn't matter what my opinion is, she is literally right, every...single...time. I should stop making decisions and ask her whether or not I should breathe in the morning. Whenever I go against her gut feeling things turn out bad. If the doctors knew what I knew about Jessica they would never question a single word she says about Nathan. I've been tracking these things for his entire life. Jessica says we should go down on the diuretics, doctors disagree, something bad happens and the doctors end up going down on the diuretics the next day. Jessica says she doesn't like milrinone, amiodarone, fentanyl, all end up being terrible for him. Jessica argues that the new dose of his BP med will increase his potassium. The next day they have to emergently switch his BP med because the doc blew her off and his potassium is sky high. I could literally go on forever and meanwhile she gets no credit. She is the best mom/nurse in the world. I believe everything she says, because as far as Nathan is concerned she's NEVER been wrong. OK rant over.

Yesterday Jessica was so worried about Nathan yesterday that she paged a doctor to come take a look at him knowing full well that the doctor was in the room of a critical patient. That's how worried she was. She never does this, ever. The doctor blew her off like she was some crazy mom who was overreacting. If he only knew Jessica the way I know her, he would have taken her seriously. So, Nathan is doing a little worse today. His HR is still low. At the end of the day he started struggling to breathe so they had to put him on a high amount of oxygen support. So now that the doctors have waited long enough where he's actually showing serious signs that there is something wrong they are finally concerned.

OK, the good things. They did an echo today and it was essentially unchanged since the last echo we saw 21 days ago. His pulmonary valve they replaced is still leaking the same amount but nothing has gotten any worse. They gave him a blood transfusion because his hemoglobin levels were low. He always does better after a blood transfusion. His HR was slightly better today than it was yesterday. When he was sleeping it was in the 50s and awake it was in the 80s. Yesterday it was 40s to 60s. After scoffing at Jessica's request for labs yesterday, they've decided to draw up a bunch of cultures to see if he has an infection and they have started him on a bunch of antibiotics.

This whole thing is scary. Nathan just doesn't recover well from surgery. It took him months before he was himself again after his last one. I'm hoping this is just a temporary step back with a simple solution and that he'll be himself again in a couple of days. I pray every night for a break. Nathan and Jessica both need a break. We need him to heal and we need to have our family back together. That's it for now. There's always tomorrow and I'm always optimistic.

Aaron

Not sure what's going on

I'm writing an update to the blog tonight even though I don't really feel like talking. Nathan is currently having a setback and we don't know why. Up until this last weekend he had been doing progressively better each day but over the weekend leading up until today he hasn't been doing very well. His heart rate has suddenly dropped into a completely unacceptable range and his oxygen sats also dip when his heart rate gets really low. When he's awake his HR should be 120-130 and asleep it should be 100-110. Today it dropped into the 30's when he was sleeping and was in the 60's when he was awake. He's very lethargic, a rash has broken out over his whole body, and he's a little swollen in the face.

The ICU is jammed packed full of kids in seriously critical condition so they didn't have much time for Nathan today. Jessica practically begged to see a doctor, in fact for the first time in 6 weeks she had a doctor paged into the room. The doctor was so busy he didn't respond to the page for over an hour and then when he got there he was very condescending and completely ignored her concerns. I understand his point of view I suppose. He's never seen Nathan before and he doesn't know Jessica. He's been in a critical kids room and we paged him out of an emergency to talk about a low heart rate. I get why he was irritated, but if he knew Jessica and how rarely she acts like this he would have taken her seriously. Nathan was supposed to get an echo done on his heart today and they ended up postponing the echo because too many other kids needed one first. I just hope and pray that tomorrow is better and that they will start looking into why he's acting like this. We need answers.

I'm trying, like I always do, to logically figure out what the problem might be. I don't think it's his meds. They've been decreasing the meds every day a little at a time and he's been doing great. There have been no big changes in any of his meds over the last few days so I can't point my finger at a med as the problem. It's possible, but unlikely, that it could have something to do with him being dehydrated or malnourished over the last 3 days. He had been gagging and throwing up because of his feeding tube so they ended up taking that out on Friday and trying to bottle feed him. He didn't do well with it and all three days he only took like 25% of the food he was supposed to have. That could explain why he's acting weak and tired but I wouldn't think that would make his HR drop into the 30s! So there are two other options I can think of. Option 1: He has some sort of Viral or Bacterial Infection. Option 2: There's something wrong with his heart that we haven't caught because he hasn't had an echo done in 21 days.

Usually when your heart has a problem you start seeing signs of poor cardiac output which would include a low blood pressure, cold hands and feet, and mottled looking skin. He's showing none of these signs, even when his HR is low. That's encouraging. If it was an infection or sickness of some sort we would expect to see his white blood cell count rising but it's not, it's perfectly fine. Bottom line is that I'm confused, Jessica's confused, the docs didn't listen to her today, and Nathan is all of a sudden not doing well. On top of everything Jessica is out there in Minnesota doing this all alone. I came home because I felt comfortable leaving and up until today I haven't questioned that decision. Tomorrow we should finally get that echo and I pray there's nothing bad on it. Let's just hope this is an infection or something similar so we can get back to recovery.

Aaron

Busy weekend

Well, once again, Nathan had to give everyone a run for their money. Although, to be honest, it wasn't entirely his fault. On Saturday morning his central IV got a crack in the catheter. So, they had to stop using it. As a result, he needed a new line. The biggest concern with all of this is that he is running out of places to put a line in because of all of his clots. So, they had to take him to the IR lab and ultrasound him to find access. Another worry was that we didn't want them to have to intubate him again. We know that he is still recovering from the month of intubation and that if they put a breathing tube in again, it may not come out easily. Also, they had to stop feeding him at 10am. He didn't go to get the line until after 4pm. Suffice it to say, we had a cranky baby on our hands.

He ended up coming back at 6:30pm. They were able to get a line, but it is tunneled very strangely. The line may last just a few days. They didn't have to intubate, but they had to do something similar that probably hurt his throat just as much. After he came back, he was an inconsolable wild man. He didn't stop crying until about midnight. It was awful! There was nothing they could do. They just kept giving him drug after drug and he would shake it off like a true addict. The next day wasn't much better. However, today it seems like he is finally feeling better. He has essentially been sleeping all day. Thank you God!! All of his crying just broke my heart. Even the nurses were leaving their shifts in near tears. It was terrible to see. By the end of the two days, I was having a pity party. Poor me. I'm doing this alone. My husband is back home and I have to be in this frozen city by myself. I hate it, but Nathan is the one who really has it bad. So, I had to shake off the sad face and spark it up so that I could be strong for Nathan.

To make matters worse, he is teething. He already had his two bottom teeth in before we came. Now, however, he as 4 to 5 teeth coming in on the top. Three have already broken through the skin. His gums are so swollen and red. They look terrible. If it isn't one thing with this child, it is another. The poor baby. However, I figure, if he is going to teeth, what better time than when he is on a lot of really good drugs. ;)

On a more upbeat note, my Uncle Jack and his wife Christine came to visit us. I got to spend Friday and Saturday catching up with them. I've not seen my uncle in 20 years. So, to have him come all the way from Indiana to see us, was more than a surprise. It was so wonderful to spend time with them. In addition, we have gotten mail from so many people. We are feeling the love and are overwhelmed by it all. I'm so thankful that I have such loving friends and family. Thank you all for everything!!

Things I don't normally talk about

I'm not sure why but I'm in the mood to talk tonight. Most of this is going to sound like incoherent religious rambling but it's currently what's on my mind.

Nathan is doing amazing. Jessica told me he was laughing this morning. Laughing! How amazing is that? Two weeks ago I thought he was gone. The surgeon called us into a room and told us he wasn't confident our son would live another hour. For the third time in my life I almost lost my son. It's a really strange experience having a child that's this sick. I didn't see him smile or even barely open his eyes for an entire month. I forgot everything. I've forgotten what he looked like, what his laugh sounds like, what his smile looks like. All I could see in front of me for weeks on end was a swollen child with an open chest. Scars and bruises covering his body. At first it's unbelievable sad. You hurt so bad you can't even eat. I'd stare at my food when we went to dinner and all I could think about was Nathan. Then, after a short period of time, maybe a week, it all becomes normal. You go from living in a normal house, driving to work, joking with friends, to staring at a sick baby for 12 hours a day and somehow it feels normal. When I got back to Arizona I saw Landon and he seemed so much older than he had a month ago. His speech is so much better, his legs are longer, he doesn't look like the child I left here. In some ways I feel like I missed something important. There's a piece of his life I didn't get to see and I'll never get that back. I traded it for time with Nathan and I'd do it again in a heartbeat but it still makes me sad. I'll have to make it up to him, starting this weekend by taking him to Jump City :).

I know a lot of you that read this blog don't believe in God. Some of you don't like organized religion because churches and the people going to them judge you and others like you. Some of you think believing in God is stupid, weak, or illogical. I have friends that are Catholic, Mormon, Atheist, Christian, Muslim, Gay, pretty much anything I can think of and I love all of them equally. I just don't care who you are or what you believe in. I'm not going to get all preachy on you but I do believe in God. I was raised a Christian from birth, and I'm sure that makes me biased in my faith. The way I've always looked at it is it doesn't hurt anyone or anything for me to believe in a God. If I'm wrong and there is no God, when I die I'll never know I was wrong will I? There have been three distinct times in my life when I thought Nathan would die. Each time I begged for peace and it was given to me. In my worst moments when I thought I couldn't go on I somehow found this indescribable peace. I'd like to believe Nathan is here for a purpose. He's going through all of this suffering so that Jessica and I can make a difference in the lives of others. Whether it be the heart moms Jessica talks with or the High School class in Florida that got together and made a banner and a build a bear for Nathan, we're somehow making a positive impact on this world. I'm grateful for my son and I'm also grateful for his heart condition. Even though it's been a terrible amount of suffering for all of us I think we'll be better off because of it.

At his 18 week ultra-sound the doctors suspected there was something wrong Nathans brain. They found enlarged ventricles and thought a piece of his brain was missing. This discovery led us to having other ultra-sounds that verified that there was in fact a problem with Nathan but that it wasn't his brain that was the problem, it was his heart. I cried the day I found out his brain was OK. I was so happy I was going to have a baby that "only" had a heart defect. One bad valve, who cares, big deal right? It's been the hardest year and a half of my life. I can't think of anything worse than seeing your child dying before your eyes. I've had so many people tell me "Don't worry, God won't give you more than you can handle". I don't know who came up with that saying but I don't think it's true. There is a verse in the bible that say's God won't give you more temptation than you can handle but that's different. Sit in front of you're baby with his chest wide open and have a doctor tell you they might not live the rest of the day and see how well you can handle it. I believe that at times we're given more than we can possibly ever handle so that we will give up and realize that we're not in control. When all options are taken away and you're told that there's only one chance left to save your child's life you can't do anything but sit and watch and pray. At that point, you've been given more than you can possibly handle and you have to lean on someone else for help. I said a prayer and asked for peace and it worked for me.

I'm done preaching. I try as hard as I can not to judge other people. I'm nowhere near perfect and I don't pretend to be. I'm having a beer while I write this, so there!

Kiss your kids! Try to be honest with people. Love your wife. You don't know how long you'll have with these people and you'll regret it if you don't. Easy to say, hard to do. I'm going to try to do a better job myself.

Aaron

Heading back home

We've officially been in Minnesota for a month. February 12-March 12. Thankfully my manager at Amazon has been amazingly understanding with our situation. I've been able to work from the hospital on the days when things are calm and it's actually worked out pretty well. In the end though I need to head back to Phoenix and I finally feel comfortable enough to do so. I haven't seen my other son Landon for a month, I haven't seen my dogs, I haven't driven a car (will I remember how?). On the plus side I've had nearly 60 dates with Jessica, even if most of our conversions have been about how Nathan is doing.

I told Jessica I wouldn't leave until I felt Nathan was going to make it. I'm 100% confident he's several weeks out from being a normal baby. What a journey we've had! I'm sad that I'm going to miss his first smiles in a month, eating his first bottle, all those "firsts" that tell me he's back to normal Nathan. I can't wait to see them when they get back to Phoenix. You guys don't know how good that first night back at home with our whole family is going to feel. So for now it's goodbye my Nathan and Jessica. I love you both more than I can tell you. I couldn't be leaving my son in better hands.

Aaron

This is a long & winding road

Sorry for the delay on posting an update. It seems like all the days are melting together and, before I knew it, I realized that there hasn't been a post since Friday. Currently, I'm sitting in the Ronald McDonald House and pouting. I haven't felt very well the last couple of days. Apparently, some nasty cold is making its way through the ICU and taking down a bunch of victims while it does so. As much as I want to be by Nathan's side, it isn't worth the risk. So, I sit here, bored to death. I miss my Landon, I miss my home, I miss the Phoenix weather, and I miss work (yes, I said it!). Basically, I miss my normal life.

We just moved to the Ronald McDonald House a few days ago. It is a nice facility. We feel a little strange being here, like we are a charity case or something. Also, we feel a bit guilty. I just hope we aren't taking a room a way from a family that really, really needs it. However, we have been living in a hotel for a month now, this is not cheap to do. Rather than go through all of our back-up funds, we figured it was time to stay somewhere that is a little bit cheaper. This is such a wonderful thing that they do for families that have sick children. I'm so glad that they exist. It almost takes a way the guilt that I feel when I stuff my face with a McDonald's burger and fries. See, by eating this, I am supporting families that have sick children ;)

Now to the part of the post that you all actually want to read about...

Well, Nathan remains extubated. He is doing great. At this point, I don't even think he really needs oxygen anymore. However, he still has a lot of congestion in his lungs. So, it is probably best just to keep some flow going through there to keep things open. Our big battle right now is that he is withdrawing pretty significantly from all of the drugs he has been on. They are trying to wean him off of the narcotics, but are having to give him more drugs to help get him through the withdraws. He gets so shaky and starts flinging his arms all around. This wouldn't be such a big deal, but he ends up coughing and choking from all of the nastiness that is in his lungs. He ends up getting himself all worked up. This then leads to him gasping for air and needing epi breathing treatments to get him through the episode. As a result, they have to keep him more sedated until they can wean him off some of the drugs that are causing these effects.

While this is scary, it is such an improvement from where we were just a week ago. We are making progress, but it is slow. I'm fine with slow! I don't want to push this kid too much and wind up taking huge backwards steps. I don't mind where we are now. It is all part of the recovery game. Get him off the drugs, wake him up, work on feeds, fine tune all of the meds we'll go home on, then....GO HOME! I keep having to remind myself, slow and steady wins the race. Our little turtle is making huge strides and we are so proud of him.

For those that have asked for an address to where we are staying, here it is. We will most likely be here for another 2 to 3 weeks.

St. Mary's Hospital 
Attn: Nathaniel Davies MB5B room 5516 
1216 2nd Street SW 
Rochester, MN 55902

Big day today! (Aren't they all?)

We have a big day planned for Nathan. Extubation attempt number 3! I'm not sure why I typed the word "attempt". What I meant to say is "Nathan is going to be extubated today!". I want him so badly to succeed I had trouble sleeping. The nurse from the first attempt is on this morning so at least we have someone familiar in the room that knows what to expect. My one request was that there would be no students training in the room today. I hate to be that guy that doesn't want students learning in his room but we had such a bad experience with a student during his first extubation attempt that I just can't take the chance. They paid more attention to the student then to Nathan last time so I think it's just best to be the jerk that kicks the students out of the room :)

Nathan has his days and nights completely mixed up. He slept all day yesterday and terrorized the nurses from midnight until now. One of our favorite nurses (Mike), who has taken care of him 6 or 7 times now said that Nathan was so demanding at night that he was almost in tears by the time his shift was over. That's what I like to see! Fight Nathan Fight! Except when we extubate you, then just take a nap or something and try not to freak out. That's it for now. We'll write another update later today.

Aaron

The Throat Results Are In!

Nathan just came back from the OR. They did NOT find any undiagnosed airway issues. He has some swelling from the tube and a little damage from the cuff that was on the tube. Jessica is very anti-cuff with babies and has been voicing her opinion since we got here. Sure enough, when they looked at where the cuff has been located there were some indentations in the throat. We really hope it isn't permanent but the doctors didn't know for sure. Cuff Gone! They removed the cuff and they're going to start some steroids, antibiotics, and Prevacid. Then they'll give those 2-3 days to work and try to extubate again.

The doctors tried having the dirty "T" (Trach) word discussion with momma and got told off (nicely)! We don't need no stinkin Trach, he has nothing wrong with his airway, we just need to get the swelling down. Nathan's a super hero and will pull through just you watch. They also saw that his left vocal cord wasn't moving but suspect it could just be the sedation. Jessica says that if it's permanent that he'll have a very soft voice for the rest of his life. Cutting a vocal cord nerve is unfortunately pretty common with heart surgery so we'll just hope that it's not a real problem.

So bottom line is that he has some swelling which could have caused him to fail his last extubation attempt. Steroids and time are what he needs right now. In 48 hours or so we should get another try at removing the tube. Nathan looks good and has started smiling a little bit, but only for momma. He's over there grinning for her and then as soon as I get up and peek over her shoulder he gives me the stink eye and stares at me like a stone cold killer. This is the start of good news to come. It's time to end his/our suffering and get on with being a baby!

Aaron

A little bit of this, a little bit of that...

We don't have too much to report yet. We have consulted with the ENT docs. They are going to do his bronchocope on Wednesday. In the meantime, we are sitting ducks. I have asked that the intensivists come up with a weaning plan to lower the sedation drips that Nathan is on. Bottom line, I want to set him up for the best success that I can to get him extubated. They completely agree, so are working on that. They are doing another ECHO today to review the leakage of the pulmonary valve, sigh. I so wish this hadn't have become a problem. However, it is what it is.

His heart rate continues to be on the lower side (70-80s), but I think this is a direct result from all of the sedation. They are increasing his tube feeds and that is going so, so. The good news is that he pooped! Yep, always happy to hear that things are moving in the right direction. So, for now, we wait and pray that Wednesday they don't find anything wrong with his airway and that they are magically able to extubate him...and he stays extubated.

I forgot to mention...

After complaining about all of the bad stuff that happened today, I realized that I forgot to mention the one good thing. Nathan is now pacing himself. Meaning, he isn't relying on the pacerwires to maintain his heart rate. He has had a heart rate in the 90s all day. The rhythm is still not a sinus one. He is in a junctional rhythm. However, at least he can maintain the rate by himself. They don't know what will happen long term and whether he will regain a normal sinus rhythm. I think only time will tell with that. They are giving him a 50/50 chance of the sinus node recovering; although no one can tell me why he lost his sinus rhythm in the first place.

When does it get easier?

Poor Nathan. He got extubated today. He was doing well for a little bit. However, he just couldn't do it past 4 hours. It was so hard to see him struggle. He was a horrible blue/gray color. He was working so hard. He kept coughing but couldn't clear anything. The medical team did everything they could to try and keep him extubated, it just wasn't enough in the end.

After he got re-intubated, they contacted the surgeon and cardiologists. The team is concerned that he failed so quickly again. They want to contact the ENT (ear, nose, and throat) docs. They think that he might have tracheal malacia or that his heart is so big that it may be compressing his airway. I don't know whether I believe these speculations or not. He has never struggled with this stuff with the past surgeries.  However, I guess they have to find a reason as to why he is struggling so much. They think that all of the combined problems this time may have exacerbated a problem that has always been there (i.e., tracheal malacia). So, the next step will be to have a CT scan bronchoscopy. This is where they take a scope and view the inside of his airway tract to make sure that there aren't any issues. Pfft, I just can't stand all of this. We are starting to feel like this is a never-ending dark hole that we are falling through.

After all of this happened, we left to go get some food. We couldn't even go back to the hospital because we are so depressed about everything. In the back of my head I can hear people saying, 'Don't worry, things will get better' or 'Have faith, God will heal him' or something along these lines. Well, I do have faith in God. It isn't that I don't trust that He can heal all things and create miracles. What I'm most afraid of is that Nathan is going to be tortured over and over again, and what if he isn't going to make it through all of this? It is terrifying to think, but it is in the back of my head. All I want, more than anything, is to see this little boy heal, get better, come home, and grow to be an old man. I pray that God agrees with my vision.

Some good, some not so good

I'm not afraid to admit it, I slept in today. By sleeping in I mean that I stayed in bed until 10 am and tossed and turned. I finally decided to get out of bed and go to the hospital to find out what I was up against today. When I got there, mind you Aaron had been there for a few hours, the docs were all in there. One never knows if this is a good thing or a bad thing. This time, they were just rounding...so, nothing bad was happening. They were going down on some of his sedation and vent settings again. Good news. They were going to pull out his chest tubes. Good news. We'll try to extubate tomorrow. Good news!

He had an ECHO today to look at how his function of the heart was. Mostly, everything looked good. The bad news is that his new pulmonary valve has moderate to severe leakage; it was originally mild. No one knows what all of this means. They don't think they'll have to replace it again during this hospitalization...at this point anyways. The other concern is that the pacer is doing all of the work for his heart. They are going to give him a few more days to be extubated, to come down on some of the sedatives, and to let him wake up. The hope is that his heart can figure it out and start doing the work on its own. If not, we may be looking at another surgery to get a pacemaker placed. We've been given 50/50 odds. Uggh! Poor Nathan. This little guy is having such a hard time; not to mention mom and dad are too. We pray that over the next few days he can be extubated and stay that way. We pray that his heart will wake up and start pacing itself. We pray that this leaky valve doesn't mean he has to have another OHS and be replaced now. For the time being, we continue to wait.

Slow progress

Last night, Aaron and I went to bed furious. We felt like no progress had been made for the day. The day before he had failed being extubated (having the breathing tube taken out so that he can breathe on his own). Yet, they felt like they could just keep turning up his sedation medications and not backing down on his ventilator settings yesterday. I just couldn't understand why they want to extubate him in a few days, but not work towards helping him to be successful at it. So, our goal today was to go in and force them to come up with a plan. We need to wean the vent settings if he can tolerate it, we need to start backing off all of the sedation meds so that he can breathe when the tube is taken out.

After a night of no sleep and steam coming out of my ears, we went in for doctor rounds. Luckily, we had a new doctor on. She listened to all of our concerns and worries. She didn't completely agree with everything, but she did say that we could start working on the vent and slooooowly start turning down the sedation meds.

So, the progress for today:

• Decreased the Fentanyl drip by 1mcg/kg
• Decreased the pacer from a rate of 100 to a rate of 90
• Turned the vent settings down- O2 to 30% from 40%, respiratory rate down from 18 to 15, peep down from 8 to 6
• Increased feeds from 2mls to 4mls an hour
• They are going to clamp the chest tubes tonight and, if the x-ray looks good in the morning, they will pull the tubes out tomorrow.

We feel a lot better about today. I'm not expecting to make huge changes everyday, just snail-paced changes. I just want to see progress. I know that is unrealistic, but one can hope.

The morning of the first surgery.

This is my first blog post in years believe it or not, and I dare to call myself a "computer scientist". Here goes nothing...

-Aaron

This trip to fix Nathan in Minnesota has been a lot tougher than I thought it would be. Nathan has already been through more than any kid his age should have to suffer through. I thought this would be a piece of cake, after all he was doing externally great when we came here. Nothing but smiles and laughs. It's been a test of faith and suffering, but our boy is still here. He's alive under all of the meds and he's a fighter. This is the story of the day of his first surgery in Minnesota (3rd overall). I'm going back in the past a couple of weeks but it seemed like a good place to start.

Minnesota Day 3.

The morning of the big surgery started bright and early at 5AM. Nathan was allowed "only clear fluids" so we gave him his first cup of apple juice ever the morning before surgery and he drank it up like it was the best thing he ever tasted. They gave us this yellow disinfectant soap that we had to rub on him to prepare him for surgery so we stripped off his clothes and put him in the sink for a quick bath in yellow water. We dressed him up in a big white abominable snowman outfit and I tickled his tummy with nibbles one last time. He laughed hard so I did it over and over until he was sick of it and I was biting back tears.We took a couple of pictures with him even though we didn't feel much like smiling. 

St. Mary's admitted us right away and took us down to the first floor where the OR is located. We had a private room but we could see others in their rooms looking nervous, waiting along with us. The nurse was thankfully friendly. She had things to do to prepare Nathan but he had just fallen asleep in his stroller so she let him rest until she couldn't wait any longer. They took him out of his snowman outfit and put him in a really cute surgery outfit that was white and had colored letters of the alphabet all over it. To help take my mind off things I took some pictures of him rolling around on the surgery bed, playing with his feet and giggling. They finally came in the room to take him. Two men came, one young the other older. The older man was probably in his 70's and his name was Dr. Oliver. We later found out he was the oldest living survivor of Cystic Fibrosis in the world. Both doctors were both extremely nice to us. The younger doctor asked us if we'd like to say goodbye so I picked Nathan up from the bed and turned around to the corner of the room. I held him, whispered I love you in his ear and cried. I turned and gave him to Jessica and she did the same but with more composure. She handed him off to the young doctor and they walked away with him out of the room and down the hall. They asked us if we wanted to follow and be there when they put him to sleep. We didn't.

Jessica and I got about 5 minutes alone together before being moved upstairs to the 5th floor waiting area. I don't know if any of you have ever waited to hear how someone is doing during a major surgery but every minute feels like an hour. Time drags on and you hope to hear something from the communicator, anything really, you just want to make sure the person you love is still there. We got periodic updates, once every couple of hours starting at 7:30AM. At some point, I think it was around 4 PM, Jessica got this terrible feeling like we'd lost him for a moment. She couldn't even talk the feeling was so strong. I rubbed her shoulders and told her he was fine and he'd make it out of there soon.

The surgery finally finished around 5:30PM. Technically speaking the surgery was a success. They replaced both the tricuspid and the pulmonary valves. They used this core matrix membrane stuff on the leaflets of his tricuspid valve that's supposed to act as a scaffold for the living tissue surrounding it. Over time the membrane will become living tissue if the experiment works. This amazing procedure has only been tried on 4 other people ever! Only time will tell how successful it is. Unfortunately Nathan was unable to come off bypass after the surgery. His heart couldn't squeeze strong enough to support a good blood pressure so they brought him back to the room on ECMO where we waited and watched over the next couple of days to see what he could do. This is where we end for this post, but will continue to write about the other days at a later time (it's a lot to write all at one time) ;)

An introduction

I guess I should start by saying why we are putting this blog together. I imagine it is like most people who start a blog. We wanted a way to be able to speak about our life, most particularly in regards to our sick child, without blocking up social networks like Facebook.

Nathan, our second son born on May 31, 2013, was born with Ebstein's Anomaly. Here is a basic picture of it https://umm.edu/~/media/ADAM/Images/en/22703.ashx. Since birth, he has been in and out of the hospital. Currently, he is almost 9 months old and has had 4 open heart surgeries (OHS) and 3 cardiac catheter procedures. He has been in the hospital for over 90 days total. He continues to fight for his life. We aren't starting this blog to get a huge following; we don't expect anyone to even care. However, we need somewhere that will allow us to vent about the bad times and cheer on the good days.

Right now, I'm sitting in a hotel in Rochester, MN outside the Mayo Clinic. My son is in there after his third and fourth OHS. It is cold and negative something degrees outside. The snow lines everything out doors. I should mention, we are from Arizona. Where it is sunny and warm and snow is just a strange figment of some crazed person's imagination. We hate it here, but are here to give our son a fighting chance at some semblance of a normal life. He is in the hospital on a machine that is supporting his breathing, a ventilator. He is on so many sedation medications that it would put an adult in a coma for the rest of their lives; this may be a slight exaggeration. He isn't tolerating getting fed through a tube that is sitting in his stomach. He hadn't pooed in ten days, but finally did and, lets just say, it wasn't pretty. So, I guess that leads us into our first blog, which is a boring start but a start nonetheless...

We had a boring and frustrating day. They're "diuresing" Nathan, which means they're making him pee. Everything is tough right now. He is on a pacemaker that is helping his heart to beat at the right rhythm. However, this also encourages his heart to be lazy. Thus, his heart doesn't want to do any work. When they turned off the pacer, his heart essentially gave up and his blood pressure bottomed out. Meanwhile, they keep turning up the medications that put him to sleep. Making it even harder for his heart to do what it needs to. In addition, they aren't turning down his breathing machine settings, which, again, makes him not want to work. I tried to talk to the doctor about all of this, and he blew me off. I had to step away from the hospital today. I felt like if I stayed there, I would go off on someone. Grrr!

In addition, our two Ebstein's family friends got to leave today. Looks like it is just us now. I'm thrilled they got to leave and sad that we have to stay. Tomorrow is a new day, right? Keep up the faith, right? So easy to say, and such a struggle to accept.