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.