Thursday, July 31, 2014

Wednesday Night Fever

Oh hello, hospital. We did not miss you.

After nearly five months of fairly stagnant sailing-which in our case is the best type of sailing-we hit a few hiccups yesterday. Starting late last nigh (early this morning) we noticed that Max felt a little hotter than usual and decided to take his temperature. He was running higher than usual, but it wasn't quite to a level of concern and his demeanor seemed fairly normal albeit tired. After about 45 minutes, we decided to check again and noticed that he did have a slight fever and his temperature had jumped up a full degree in less than an hour. 

Time to call the doctor team. 

Wrong team.

Since the heart center recently put a new phone tree in place, we decided to try and use that in an attempt to get ahold of someone. After 20 minutes, we finally go through to someone who was on call. Unfortunately, it was not someone familiar with Max so we had to go through a bit of patient history and that individual had to attempt to get ahold of someone from the transplant team to decide what the best course of action was. During this time, Max's temperature continued to rise and he began to develop a rash along his chest and up towards his neck. Luckily, the doctor on call was the head of the transplant program and one of our favorite physicians. Since Max had no other symptoms and going to the ER is a last resort (seriously, we may treat the fever there but the likelihood of Max being exposed to something even worse is incredibly high), we decided to give Max a fever reducer and ride out the rest of the night at home and come in to the clinic in the morning. It was 3:45am at this point, so that wasn't too much longer to wait. 

Fast forward four sleepless hours to the morning. Max still seemed a little off and was consistently hot to the touch. We took his temperature and at this point it was above 100.4, the magic number, so it was time to go see the doctors. Of course our pediatrician, who is very good but also very popular, wasn't able to even be at the hospital today. And, Thursday being clinic day at the hospital as well, all of the transplant team is incredibly busy. Fortunately, we were able to get in to see the entire team-would have been nice under different circumstances-and go from there. Max was still running a fever at the hospital and his throat was a little red, so they decided it was best to run a full blood workup to see what is going on. 

And that is where we are at. We are finally home to wait and watch to see if anything changes and wait for test results. At this point, there could be a slew of things. Best case scenario, Max is having a severe reaction to the beginning of teething. Other options are that he was exposed to some type of viral infection-which is unlikely because none of us have any significant expose to ANYONE, seriously, NO ONE-or he could have a a bacterial infection. Since we had to stop a medication that was lowering Max's blood counts that specifically targets a respiratory infection known as CMV, Max could be developing that seeing as how he tested negative at birth but his organ donor was positive. And finally, this could be a sign of organ rejection. Unfortunately, all of these conditions have the exact same symptoms, so it can be very difficult to discern the root cause. The worst case scenario is unlikely, but it is always looming over every cough, sniffle, and fever. 

Even though we often keep our cool and do the best to stay positive and bring humor into every stressful situation, being a heart parent f*&king sucks. It does. There is no other way to put it. It is no walk in the park; it is the MOST difficult thing I could ever imagine and makes everything else seem like a cakewalk. Not only are we new parents, wherein each time a healthy kid gets sick is devastatingly terrifying, we are first-time parents to a child with a heart transplant. A child with extremely low blood counts where a common cold could put him in the hospital. Hopefully, Max is just teething, but with a transplant kid you never know. Nothing is ever certain and you can never take anything for granted. Every symptom is worrisome and every change in his behavior, bodily functions, and vitals is significant and extremely stressful. 

We will continue to monitor and update as we find out more and progress over the next couple days. For now, though, we are home, decently happy, and hopefully taking a much-needed nap. 

We also ask if you could keep some friends of ours in your thoughts. Their daughter is a few days younger than Max and was in the CVICU at the same time. She has had a rough week so if you could send them a positive vibe as well that would be much appreciated. 

As always, thank you to everyone for the genuine concern, love, and support. We couldn't make it through this fully alone. 

Thursday, July 24, 2014

Quick Format Update

Hi, everyone!

I just wanted to post a quick update about some changes we're making to the blog. When Jon and I started this, we intended for it to be an easy way to update an extended group of people about Max. We had no idea that the blog would become as popular as it has been and we are so grateful for the continued interest in and support of our son from so many.

Contrary to what it may seem due to the existence of this blog, Jon and I are actually pretty private people and so we have decided that while we will continue the blog, going forward we will no longer include photos of Max in our entries. We'll still post them on our personal social media pages but the blog will only contain updates about Max and random funny pictures from the internet.

Thank you to everyone for your continued support of Mighty Max! His next heart catheter/biopsy is scheduled and we'll of course keep everyone updated as we move forward. Thank you for your love and readership!

Sunday, July 20, 2014

Some Days are Harder but Sundays are Best

Sundays are family days, they always have been. Em and I make sure, even when we are busiest, to set these days aside for family, football, movies, and spending time together. Today, as we sat together in our living room and watched Inside Llewyn Davis--one of our favorite movies of all time--it is difficult to not feel a bit emotional about everything we have gone through and continue to experience. This film has a special resonance for all three of us. While Em was pregnant, we watched this movie in theaters and immediately fell in love. Apparently, Max did, too. Throughout the film, which is composed of many Dylan-esque folk songs, Max was kicking up a storm so fiercely that it was obvious he was having a strong and direct reaction to the music and the voice of Oscar Isaac. We have come to find that Max absolutely loves music and has strong reactions to many of the same songs he seemed to like in utero.

The evening after we initially watched the film, we decided to purchase the soundtrack to see if we could duplicate Max's behavior and we did--he kicked like crazy every time we played it. For the last two weeks leading up to his birth, we listened to that album everyday, each time a little more emotional than the last. Since we kept a copy in the car, we generally listened to it on our journeys to and from the hospital, which were some of the most trying times. Even now, many of the songs continue to elicit feelings reminiscent of those uncertain and frightening days and yet I love that album nonetheless.

Max seemed to have the strongest reactions to the most depressing songs, especially one titled "Fare Thee Well." It was difficult, at times, to not wonder if this was his way of communicating with us and telling us everything was going to be okay no matter how it all turned out. Even though I tried my best to put those ideas out of my mind, it was impossible to not have a the fleeting thought that he was saying goodbye before we even had a chance to say hello. Luckily, things have gone on a different course.

It has been easy to forget where we came from and just how far we have come. Just a mere six months ago, the thought of going to the hospital was vomit-inducing. Even though we didn't like to talk about it, I knew there was a very real chance that I would never be able to give my son the life I wanted to give him--this still isn't the life I wanted for him, but it is life, and for that I am eternally grateful. Since Max is doing so incredibly well and most of our posts focus on the positive, it is easy to forget that a transplant isn't a cure; it is simply a longterm band-aid. And band-aids are never permanent. It is easy to forget about Max's heart condition while I am changing the fifth blowout of the day and feeling a bit frustrated that we have been on house arrest for almost five months. It is easy to forget when it is 115 degrees outside and I am constantly reminded that I hate Phoenix and badly miss my friends, family, and hugging my mother. We talk about where we want Max to go to school and what colleges we want him to apply to, but in reality, we may never make it that far.

There is a fine balance between optimism and pragmatism and we are still trying to ease our way along that rope. We have accepted the reality of our situation but that doesn't mean we ever really talk about it. After long days, I sometimes have to remind myself that each moment is a gift. It is too easy to get caught up in the daily grind and forget that things will always have an air of uncertainty and that is terrifying. As a parent you want to be able to provide the best for your children and ensure that everything is going to be okay, which is a nearly impossible undertaking for anyone raising a child, but with Max, I can tell him all I want that everything is going to be okay, but there is little I can do to make that a reality.

There are days when I only think about Max's transplant a few times and that is a triumph. I'm not saying I wish I would constantly think about my son's heart condition and wallow in self-pity because I don't. I am thankful that on most days everything feels normal because otherwise it would be nearly intolerable to never have a break from the stress and anxiety. When you look at Max, especially with his always-happy demeanor and wise eyes, it seems like he is a healthy and "normal" baby. He is currently only on nine medications and that aspect has become so ingrained in our daily life that it feels normal. We wake up, eat, Max takes his meds, Dad takes his meds, and we are off on our day. It's normal for us. So, even with that, it is so easy to forget that Max is sick.

Loma Linda University Medical Center in California, one of the premiere infant heart transplant and research centers in the world, released a study earlier this year that was overwhelmingly positive about the future of heart transplants in children. The study said that they are seeing advancements in the longevity of transplants in children and were happy to report that 54% of their transplants patents had survived at least 15 years. 82.5% of that group had healthy heart function when the report was written. For the transplant world, that is a pretty good statistic. For the rest of the world, 54% is not necessarily something to write home about; it is hardly better than the odds of a coin flip. Luckily, we live in a era where medical technology is rapidly advancing so it is difficult to say where we will be in five years. Doctors are confident that they will make major breakthroughs in this area very soon but, like everything else, it is always uncertain. And who knows? Max is different. He is young, his situation almost feels fictional, and his results are seemingly unheard of. There is very little data on transplant cases like his, so Max is the data because his situation is unique. Weirder things have happened, especially to us over the last year, so maybe he is the one. Perhaps that is me being too overzealous and placing meaning where there is none but, for now, that is where I choose to operate from.

I have found that being overly optimistic is dangerous because it allows me to fall back into a level of normality that I so desire but then my perspective of things skews. I start to focus on my career path and other less important aspects of our lives and forget that I really do need to cherish every moment with my son and my family. It may be a overused cliche but I will say it again: every day with Max truly is a gift. I honestly believe that. Not that anyone really does, but we don't have the luxury of assuming or predicting the future of our family and that is a really difficult concept to fully acknowledge. I want to change it but I can't. We continue doing what we are doing and hope for the best because that is all we can do. We can keep chugging along, letting Max know that he is loved with every ounce of our beings, and give him the best life that we possibly can.

We do our best to accept our situation but not let it bear a heavy burden on our daily lives. In the end it is a choice: we can be sad and think about the worst case scenario or we can be positive and treat each baby step as a giant leap. We can keep our Sundays, our songs, and make the best of every day, poop and all.

Saturday, July 12, 2014

Tough Guy

Well, another month has passed since our last clinic appointment, so this week we headed in to the hospital for our now monthly blood work, echocardiogram, EKG, and meeting with our favorite transplant coordinator. It seems like we were just at the hospital last week for clinic since time has seemingly sped up since Max was born.

Apparently, this is a thing. 

In an event so rare that it could be classified as a true "phenomenon," we only had to wait about 15 minutes for the IV team to show up; the appointment was already off to a great start. Since blood counts have been so low, the nurses have to mask up, which, for once, seemed to be oddly comforting to Max. Perhaps this will bode well in the feature when he has to be the one to sport a trendy germ-guard.

They even come in "hipster!"

Even though Max is quite the trooper, blood draws are often pretty traumatizing for him. He has to be briefly taken away from his mom, put on a cold table, surrounded by barely familiar faces, held down, and poked. Today, however, Max decided that he was a big boy and that blood draws were no big thing. Every time he caught eyes with Em, Max smiled and even laughed a couple times. He shed the obligatory single tear with the initial poke, but otherwise there was no crying to be had. As an awesome side-effect of staying calm, he stopped bleeding almost instantly once the draw was complete. Fantastic.

The little guy is definitely growing up...

We made our way over to the clinic for the rest of the appointment. Other than seemingly pooping his brains out multiple times throughout the visit, the process was relatively painless.

Me after what seemed like the 17th diaper in the last 10 minutes. 

Max, as always, was a trooper for his what was likely the fastest echo we have ever had. The EKG was also completed on the first try, which NEVER happens. Other than having to wait around for a while--the heart center recently merged with another office, so things have been in a somewhat chaotic transition for the past month or so--the appointment was one of the best we have ever had. Our wonderful new nutritionist said that everything is looking great and Max is gaining weight in a very satisfactory fashion. He was 13.3 pounds this visit, which is over a pound up from last time! Very awesome indeed. Plus, this weight gain was as the direct result of using primarily unfortified feeds, which is something we never thought would happen.

Things are going well for the little man.

The next day, Max's physician called with the blood test results. Everything is looking great...except for those pesky white counts. However, there was a bit of positive increase. He is nowhere near the 5000 count we are all shooting for (which itself is the low side of average), but he has made some progress in the right direction. Not very much progress, but progress nonetheless. We will continue to hold a few of his medications for the next month, which is a trade-off we discussed in a previous post, so hopefully those number will continue to rise.

Pictured: Max's immune system. 

Out next visit will be slightly delayed until Max has his next heart catheter and biopsy next month. Even though we are not looking forward to Max having another surgical procedure, we will hopefully get the confirmation that there are absolutely no signs of rejection. Relatively, things have been going so well thus far, so we hope the trend continues.

Saturday, July 5, 2014

Happy 4th and a Quick Update at 5 Months!

Happy (belated) 4th of July!

We just wanted to post a short update on how Max is doing. We don't have any medical updates yet because our next appointment isn't until later next week but Max is doing really well otherwise. He has such a wonderful, fun disposition and he spends most of his time smiling and laughing.

He's been rolling over a lot lately and holding up his head more and more (it's a lot of work for such a little guy to hold up such a big head!) and I think he might be close to teething. We've got lots of teething toys on hand for when he starts but in the meantime, he's just content to hang out with us and be adorable.

Max is five months old now which is such a big deal for us--every month that we have him is longer than, at one point, we thought was possible. We'll be at five months post-transplant on Tuesday and the hospital feels like another lifetime. Yes, we've been on house arrest for almost three months due to low blood counts but we're so grateful that we have Max. Our little guy is such a trooper and we find his strength and happiness so inspiring to us and we feel so lucky to be his parents.

We had a pretty funny moment yesterday that I thought I'd share. Max is normally very easy going when I nurse him--not easily distracted, super chill, etc. Yesterday, however, when I was feeding him in the afternoon he decided that I wasn't allowed to make any noise while he was nursing. If I said anything to Jon, Max would stop nursing and give me this look:

Naturally, this made me laugh so he'd give me the look again and I'd laugh again . . . it was a hilarious vicious cycle.

We hope everyone had a good 4th of July and we ask that everyone please keep their fingers crossed for us that when we go in for Max's clinic appointment we'll find higher blood counts!