Tuesday, December 30, 2014

Heart Siblings

We are waaaaaaaaay overdue for posting an update. We've had a lot going on but all of that is going to have to wait another day because today, this post isn't about Max.

When Max was in the hospital right after he was born, I became friends with another heart mom. Her daughter, Rylee, was born just three days after Max and both of our kids received transplants (Rylee's mom and I call Max and Rylee "heart siblings"). They've always had a connection and yesterday afternoon, while Max was napping, he kept starting to cry in his sleep which is very unusual. More than likely it's a coincidence, but last night we received the devastating news that Rylee passed away yesterday afternoon.

My heart feels broken for Rylee and her parents. Words can't even describe how sorry I am to hear this.

Our family has been so lucky to know Rylee. Her fight and endurance were nothing short of incredible. We're so proud to call her Max's heart sibling and we will never, ever forget her or stop being inspired by her.

I have to say that even more inspiring than Rylee, to me, is her mom. I am so honored to call Rylee's mom my friend and I have so much admiration for her. I start to lose my mind after 10 minutes in the CV ICU but with the exception of about three weeks, Rylee and her parents lived in the hospital. That's 10 months of the hospital and everything comes with it. That alone makes Rylee's mom a superhero to me but what I admire most about her is how hard she fought for her daughter. Every fiber of her being was dedicated to her daughter, fighting for her, working for her, pushing to make Rylee's life better. You can tell by the grins in all the photos that have been shared that Rylee was a happy girl and she loved her mom more than anything.

Based on the update sharing the terrible news from this afternoon, I know Rylee's mom blames herself. Steph, if you're reading this, I know it's impossible not to blame yourself. You're a mom and what's more, you're a heart mom--we blame ourselves for everything. You have done absolutely everything within your power (and some of it superhuman) for your kid and I am continually blown away by you. I hope you know how incredible you are.

I feel like there's so much I want to say but everything just sounds wrong. Words don't often fail me but they're failing me now. Rylee, we miss you so much. Stephanie and Steven, we're so, so sorry.


***

If anyone would like to donate to Rylee's family towards the costs of the memorial service and arrangements, please visit this link: http://www.gofundme.com/ryleeswildride

Thursday, November 27, 2014

A Thankful Thanksgiving

2014 for has been a wild year for our little family and when I reflect on everything, I am overwhelmingly grateful for so many things.

I'm grateful for our family and friends who have helped to carry us through this often traumatic year. The amount of love we've been shown is astounding and I am constantly humbled by the outpouring of support we receive. The methods may vary but at the core, it's people trying to make sure that Max, Jon, and I are doing okay and knowing there are people watching out for us has been so comforting during a year filled with so much house arrest and isolation. We may not have gotten to thank each of you individually but please know that this past year has been made possible through your support.

I'm incredibly grateful for Max's medical team. They've worked so hard with us to get Max to this point and their talent and vigilance continue to carry us forward.

There aren't adequate words to express how grateful I am to Max's heart donor and the donor's family. That family chose, in the midst of their own tragedy, to give our son the chance to live and that is something we can never even hope to repay or express how deeply grateful we are.

I'm extremely grateful for Jon, my husband, my love, my person, my best friend. I couldn't have made it through this year without him and Max and I are so lucky to have him. Jon is the single best person I know and he is the best dad Max could ever ask for.

Most of all, I'm thankful for Max. Today we got to spend our son's first Thanksgiving at home and today, while we ate pie and Max played the drums with spoons on his high chair tray, we got to just enjoy the holiday like normal people. I think I speak for both Jon and myself when I say that we didn't know it was possible to love someone this much. Max--this one's for you. You're the best thing that's ever happened to us and your strength and fight and continued good spirits are a daily inspiration to us. I have never been as happy as when I look at you and I am so grateful for the opportunity to be your mom. Max, we are so overcome with love for you and I only hope I can be the kind of mother you deserve to have.


I hope all of you have had a wonderful holiday full of turkey, pie, and lots of love :-)

Saturday, November 22, 2014

Pathology Results: I Have No Idea What's Going On

It occurred to me last night that we're way behind on our updates--we're so sorry! We've been worried about our little monster and between that and sleep deprivation, everything has started to blur together.



While we were in the hospital, we got the pathology results and everything viral, bacterial, and fungal cam back negative which was a huge relief, especially since that includes PTLD (post transplant lymphoproliferation disorder). However, because all the tests were negative, we really only know what it isn't. The best assessment pathology could come back with was to call the spot in his mouth atypical histiocytic granuloma which basically sent all of our doctors off to consult Dr. Google since they have no idea what that is. Apparently, it's basically a benign canker sore with inflamed cells . . . and they still have no idea what caused it.

Apparently this is a legitimate medical assessment.

Currently, the spot looks better than it did pre-biopsy but now it sort of looks like it's an indent in his mouth. It reminds me of when I took a big fall while rock climbing several years ago and I got a huge rope burn on my leg that was basically a divot. I could share a picture of Max's mouth spot but let's be real--even I don't want to look at it and I have multiple pictures of it on my phone for the various doctors to avoid them having to look at it in person since the only way to see it is to make Max cry (not on purpose but he hates tongue depressors almost as much as he hates Q-tips). You can tell no one has any idea what's going on when the head of cardio tells our transplant coordinator, "Well, I guess you're going to be the expert on atypical histiocytic granuloma in transplant kids," and she retorts with, "Hey! YOU are supposed to be the expert here!"



For now, we're just monitoring the spot to see what happens. There's limited information about these spots to begin with and no information about them in regards to transplant recipients because Max's system apparently has Brooks Wheelan's Disease.



On Tuesday, Max was supposed to get his Synagis shot but we had to cancel at the last minute because he had a fever for the first time in weeks (because every day he's supposed to get shots, he pops a fever). We took him to our Flagstaff pediatrician yesterday and she checked him out. The viral respiratory test we did at clinic on Wednesday was negative but our pediatrician said he still looks viral, like he has cold, due to his very congested nose and the fever. But those symptoms could also be a fever from teething and congestion from the air up here in Flagstaff. Of course, we can't brush off the symptoms  so we have to closely watch Max to make sure nothing spreads to his throat, lungs, or ears. He's still running a fever today but Tylenol seems to help make him comfortable. As our cardiologist says, with transplant kids you always have to prepare to see zebras every time you hear hoofbeats which certainly doesn't do anything to help our stress levels.

Stupid zebras.
For the time being, we're just watching his symptoms and hoping whatever is going on just passes so he doesn't have to end up back in the hospital. On the positive side of things, we got Max's lab results back from his blood draw this week and his hemoglobin and hematocrit results are improving which means the iron supplements we've been giving him are improving his anemia--yay! Hopefully some serious weight gain won't be far behind.

Max's goal weight.

On a lighter, much happier note, we are feeling very loved at the moment. In addition to the outpouring of love and support we've received since announcing Max's HLHS when I was pregnant and going through his subsequent transplant, we've received some amazing surprises on our doorstep: care packages! To our local friends who have been so kind to us, we want to thank you again. You guys are so wonderful and I don't know what we did to deserve such awesome friends but we love you so much and we're so grateful to have you in our lives.

Love

Saturday, November 8, 2014

Hospital: Round 2

Hey everyone,

Even though we have a number of things to catch you all up on in the world of Max, let's start with the most pressing information.

As many of you know, we took Max to our new pediatrician in Flagstaff a couple weeks ago because he had been having a low-grade fever and a couple other minor symptoms that we figured were worth checking out. After our first appointment, everything looked good and it seemed as if Max was simply teething again (we'll get to that later). After another few days of lingering symptoms, we went in for a second visit and a few more followup tests. During this visit, Emily (the Wonder Mom) noticed that Max had developed a weird white spot in the back of his throat. If it were not for Emily spotting this, who knows how long it would have gone unnoticed. Our pediatrician wasn't sure what this spot was, but thought it may be a case of Thrush and we started treating as such. We discussed this with our team and decided this was the best initial course of action and we would follow up in a few days since we were going to be down in Phoenix for an appointment with the hematologist for Max's increasing anemia.

A few days later, we met with said hematologist and started Max on a triple dose of iron supplements to combat his severe anemia-the severity was a surprise to us because we thought his iron deficiency was subtle, not an actual problem that required immediate intervention. During that appointment, the hematologist also took a look at Max's throat and said that this mystery it was definitely NOT thrush, but he wasn't sure what was going on and wanted us to see an ear, nose, and throat specialist as soon as possible. The spot had grown a bit from the previous week and slightly changed its coloring, which is never something you want to see. We met with the transplant team and did a number of initial swabs and tests to attempt to diagnose the new development. Everyone agreed that we needed to see an additional specialist and we made made plans to do so.

Our initial appointment with the ENT was short wherein he decided that we needed to biopsy this lesion because he was not sure what it was by looking at it (which has been the trend this entire week. This lesion/ulcer/spot/growth looks like nothing specific, but it also could be a sign of various things). The procedure itself went well and Max did well, like usual. The ENT sent the specimen to pathology  and Max as admitted to the CVICU once again for monitoring and to help combat his growth stagnation, which is another issue that has been ongoing that may or may not be related to everything else that is going on. We thought we were going to be released from the hospital yesterday, but since no one knows exactly what is going on as of yet, Max's lead physician wanted to keep him here for additional monitoring and to have him here in case pathology discovers something.

The first round of testing was inconclusive and all of the surface swabs came back negative for any type of virus. The swaps showed a bit of bacterial growth, but this is to be expected with any mouth swab. We met with an infectious disease specialist, but he also could only tell us what it wasn't, not what it was. He doesn't think it is a virus, but he said it could easily be some type of fungus or mold infection, now this is rare, but possible. We won't know more until the second round of pathological testing comes back, which will not be until Monday at the earliest (since pathology doesn't work on the weekend, because we all know that medical issues take breaks over the weekend just like everyone else). A number of the stage two tests take a few days because they require cultures and petri growth, so there is nothing we can do to speed up those in-depth studies.

Without further testing, there is no definitive way to say what Max is dealing with. He has no other "sick" symptoms (other than no weight gain), which can be taken as a good sign. Plus he has been his usual happy, hungry self. This lesion could easily be a mouth wound gone array, or it could be a condition known as PTLD (Posttransplant lymphoproliferative disease). The latter is a precursor to lymphoma and is a condition that is the result of rampant production of B-cells as the direct result of a suppressed immune system. Lesions similar to the one Max is dealing with is a potential sign of PTLD. Now we obviously really hope it isn't PTLD and don't think it is since Max has no other related symptoms, but it is always a possibility with any transplant patient. PTLD is generally treatable, but that is a road we do not want to have to go down. Max has been through enough in his 9 months of life, so we hope this is something easily treatable or altogether benign.

Until the tests come back, we are stuck in the hospital, which is a bit frustrating, especially because we all know how well weekends go int he CVICU with the skeleton crew. We have had a number of issues already, especially with getting medications on time and a few other things. However, Max is a trooper like always and seems to be enjoying all the cuddle time. We will try and distract ourselves with football tomorrow and hope for good news on Monday. We can't wait to get back home, especially since we only brought down a a few things for what we thought was going to be an overnight stay.

We will update on Monday, but until then, we will be chilling in the CVICU for now.

Thursday, October 30, 2014

Overdue Pre-Move Updates

Before I start this update, I just want to thank everyone for the outpouring of support we received after our last post. It was a really emotional entry for me to write and the amount of love that was sent to us in light of that reminded me that the positive, supportive people far outweigh the rest. Thank you :-)

Now, on to the good stuff!

Last week, Max had an appointment with his pediatrician for some vaccines and his six month well baby check up (even though he's eight months old). But we had the biopsy and all the other wonky things happening with his meds, plus getting an appointment with our pediatrician can be incredibly difficult because he's amazing and unfortunately everyone else thinks he's amazing too, which fills up his schedule. However, we also have the heart center and they're our first call if anything is going on with Max so the pediatrician is really secondary. Because we like our pediatrician so much though, we've decided to keep our well baby check ups with him since he is in constant contact with our transplant team but we'll have one in Flagstaff in case of emergencies.

ALL THE DOCTORS!
(We may have made this nerdy joke before).

Max was a trooper when he got his vaccines (no live viruses), especially considering he had to get three shots at once. It's not like he enjoyed the experience but maybe he still considered it better than getting poked in the head for a blood draw.


The day after the pediatrician appointment, we had Max's monthly heart clinic visit. Max was in an awesome mood for his echo which was awesome because sometimes he's a little squirmy worm but he was flirting with the tech so he was on his best behavior.



Max's echo looked great and the rest of the appointment went well. We actually ended up just chatting with our transplant coordinator who apologized for keeping us there essentially just to hang out once we were done talking about Max but we told her that going to clinic is like "going out" for us now so we didn't mind at all.

No, no we can't.

The next day we got Max's lab results and once again . . . his anti-rejection med level was wonky and we would need to come back in for a blood draw. Ugh. At least we could wait through the weekend to give Max a break.

On Monday, we went in for a physical therapy appointment with our fourth physical therapist. However, this one was just hired and seems unlikely to leave anytime soon so we'll keep working with her. We really liked her and Max was okay with her, even though he got mad at her for making him work. He's still behind with his gross motor skills but we're seeing little improvements. Of course, the changes won't happen overnight so we're working with him every day at home. We'll see her again in two weeks and at that point we'll decide if Max needs weekly PT visits or if we can stay where we are with only coming in every other week.

The next day, we went back in for a blood draw, blood pressure check (we're adjusting his blood pressure medication), and weight check because at clinic he had, again, lost a little weight. Luckily, this time his weight was up a little! It was very slight but we'll take a slight increase over a slight decrease any day.

After the last blood draw, we finally got his wonky med level evened out and for the time being, it's good! His blood counts are weird again though so we have an upcoming appointment with the hematologist to get his input.

ALL. THE. DOCTORS.
Aside from all that, we kept ourselves busy prepping for our move to Flagstaff! We're up north now and we'll post another update in the next day or so on all the goings on since we've been here. Pretty much all of our stuff is up here (aside from a couple odds and ends) and we're trying to unpack and get settled. However, we seem to have a very cute distraction that keeps us from unpacking quickly . . .

More updates coming soon!

Wednesday, October 15, 2014

An Atypical, Angry Post

Hi, everyone! We have a bunch of updates about Max but those are going to have to wait for the next post because we feel compelled to write a different kind of post today.

As we've stated many, many times in this blog, Max has a suppressed immune system; this isn't news to anyone. It's why we've spent so much time on house arrest, it's why we use so much hand sanitizer, and it's why even though we get to move to Flagstaff, we're going to have to continue to be so careful during cold and flu season. We know there are people that think we're overprotective. But we received some information today that takes it to another level that makes us incredibly angry. There are people who have told the few who are going to be around Max to lie to us about their exposure to sick people. Even if they've been around someone sick, they were told to keep that information from us so they can be near Max.

I apologize for the language, but what the actual fuck is wrong with people?

I get that some people think we're exaggerating and that Max won't actually get sick or if he does, it's not a big deal. Having a suppressed immune system means that Max's body is not equipped to handle diseases the same way a typical kid can. He will NEVER have a normal immune system because it will ALWAYS have to be suppressed so his body doesn't reject his heart. Getting sick means at the minimum he could end up hospitalized. At the worst, he could die.

Let me reiterate that so we're all clear on what I'm saying: if our son is exposed to an illness because someone lies to us about their exposure, he could die.

The people who think we're exaggerating or being overprotective have no idea they're talking about because they weren't there. They weren't there during the second half of my pregnancy when Jon and I had to rely on Max's movement in my belly to reassure us his heart hadn't given out yet. They weren't there in the delivery room when our son was born and he was gray because his heart couldn't support his body. They weren't there the day of Max's transplant when we spent the day sitting across his hospital room from his tiny bed, watching his renal numbers fall, indicating kidney failure wasn't far away. They weren't there in the weeks following transplant when not one but BOTH of his lungs collapsed. They weren't there when his heart rate was over 200 beats per minute while my tiny son gripped my finger with his hand and cried with fear.

Above all, they weren't there the night the doctors wheeled our five-day-old son away to take him for his heart transplant and left Jon and me standing in an empty hospital room, crying with sobs that wracked both of our bodies. We hadn't even gotten to hold him yet and there was a very real possibility that we never would.

I'm crying as I write this because I'm so angry that some people have so little regard for our son's health that they could encourage anyone to lie to us about their exposure to sick people. I know that I haven't fully dealt with what we've experienced and it's contributed to my own issues that I haven't dealt with because I don't like to acknowledge them. Jon and I tend to whitewash some of our feelings because, in general, we really are positive people. But that doesn't mean we haven't been privately dealing with a lot. I spend a part of every single day afraid. Not just afraid--terrified. We talk now about the precautions and considerations we have to take when Max is able to be around more people and when he goes to school but there is the very real and crippling fear always in the back of my mind that he could die before any of that happens. While we are hopeful and optimistic that Max will live a very long and (relatively) healthy life, we also have to acknowledge that we don't know what will happen and that this could be our only time with him. When we consider that, we'll be damned if we are going to let Max's time get cut short by someone who thinks we're exaggerating or just overprotective.

Max has been incredibly blessed in this situation and we are so grateful for everything he's received, from the medical team to financial donations to the outpouring of love and prayers and more. But just because he's done well doesn't mean that we can relax our vigilance, especially in this first year after his transplant when we are just getting into cold and flu season. We have to live with certain restrictions which is why we wrote a post about our rules. On the bright side, we've been able to see who our true friends are in this situation, the ones who respect our precautions about Max and know that while we love them, things are different now and Max's health has to come first. But we've also seen who is willing to disregard our son's health because of what they want or because they think we're exaggerating the situation.

To those true friends, we want to thank you and let you know how much we love and appreciate you and your understanding. We have to keep Max away from people for now while he's so little and his transplant is still recent so that he'll still be around to get to know all of you later when he's older and stronger. We love you and we can't wait until we can introduce Max to all the people we love so that you can get to know each other.

To those who are willing to lie to us about their exposure to sick people or who just plain don't care about our rules: there is no place for you in Max's life or ours. Our son means everything to us and if someone has so little regard for his health and his life, we don't need them anywhere near us, literally or figuratively. We're not going to risk losing our son for you.

I know this is a much different post than what we usually do and for the most part, it's a very angry post. A lot of these feelings have been building for a while and what we heard today has pushed me over the edge. This post is even fairly restrained from what I'd like to say. We can't control everything but his doctors have told us that the main reason he's doing so well is because of the steps we've taken to protect him and limit his exposure. There is absolutely no way we're going to decrease our vigilance now and if we suspect someone isn't telling the truth about their exposure, we'll have to make the call ourselves and I think it's obvious what choice we'll make.

Our son is the most important thing in our lives and we have and will continue to sacrifice whatever we have to in order to keep him safe.

Tuesday, October 7, 2014

A Much Needed Update

Hey all!

It has been a while since we last posted because it has been a very hectic month. We have been slowly getting ready to move and dealing with a number of things that have arisen in the last few weeks. As of Friday, Max is officially 8 months old! We cannot believe how fast time is flying and how big he is getting. He is beginning to make the shift from baby to little boy and we have mixed emotions on this. Despite everything, Max has been doing fairly well. We have been dealing with a number of complex issues involving his medication cocktail, weight loss, and a nagging low-grade fever. However, throughout all of this we have hit some exciting milestones like Max's first tooth and his first solid meal!

Since the biopsy, Max has had difficulty gaining weight. He was stagnant for a couple weeks and then over the last week, he actually lost a little bit. A drop is significant for a baby his age and his already low weight makes this even more concerning. During this time, Max has also had fairly unstable levels of Tacrolimus, his anti-rejection/immunosuppression medication. After the biopsy, we found that his Tacro levels were dangerously low, which puts Max at an increased risk for rejection. Based on his age, weight, and medication levels, we increased his dosage to a more appropriate level and he responded well for about a week. After a routine blood test, we found that Max now had dangerously high levels of Tacro, which has the potential of producing a number of serious side effects including extreme dehydration and kidney failure. So, we had to completely stop giving him Tacro for a couple of days to let those levels drop a bit. Since then, it has been a medication roller coaster and we are having to constantly monitor and alter his levels every few days. We ended up lowering his daily dosage to pre-biopsy numbers, yet the levels have still been far too high. Max has had an extreme increase in blood tests, which is difficult on the little guy and only makes it more difficult to gain or maintain weight since his body will spend time reproducing lost blood rather than focusing on growth. The physicians are unsure exactly why his body is reacting this way, but we hope to get this under control in the coming weeks as we go in for multiple appointments. We may be changing the suspension of his medication to see if that changes things and makes his immunosuppression a little more stable.



On top of everything, it has been time for Max to start getting the immunizations he is able to get, which is really good, but slightly bad timing given everything that has been going on. He got his flu shot last week which has given him a small fever and diarrhea for the last few days. We have had to put his magnesium on hold to prevent him from getting dehydrated, which would lead to an immediate hospitalization. He is doing far better now and hasn't had a concerning fever yet today, so we are hopeful that his reaction to the flu shot has passed. We will go in for another blood test tomorrow morning to test his Tacro levels and also to ensure that nothing else is going on that could be the cause of this fever. We will also check his magnesium levels to make sure that those haven't dropped after being off of it for the weekend. These complications illustrate how delicate Max's medication cocktail really is: one change of a medication alters and affects everything else he takes. It can be very frustrating at times.

Every day. 


Despite all of these hiccups, Max has been his normal and chipper self. A couple days ago, we had our first successful solids introduction where he finished all of his sweet potatoes. Up until this point he has been completely disinterested in solid food, but a couple days ago he had suddenly perfected his eating technique, appetite, and acted like he had been doing this forever. He's continuing the trend with more successful downings of sweet potatoes; I think we may have found his first favorite food.

After WEEKS of painful teething, irritability, and a related low-grade fever, Max FINALLY sprouted his first tooth! We were very excited when it finally broke through and at least gave us a bit of peace knowing that all of his other symptoms for the last month (grumps, fever, etc.) were more than likely completely related to this problematic first tooth. It seems like he has another one working its way through, so we will see if he gets another in the coming weeks.

These are the important parenting questions. 

Between everything else that has been going on, we met with a new physical therapist to check in on Max after the biopsy and make sure that he isn't falling too far behind as a result of surgery and a long delayed start of tummy time. We absolutely loved this new therapist, so naturally we found that she is leaving her job at PCH for another one closer to her home. We are going to see another therapist at PCH, but also hopefully give one in Flag a try once we move back. Max is on the cusp of falling behind in terms of gross motor skills. He refuses to spend time on his tummy and has found that it is more productive and interesting to simply roll around and lay on his back. It's not that he can't hold his head up from tummy time, he just chooses not to because it is far less interesting than starting at the fan and everything else above him. Instead of pushing forward, which he can do if he tries, he has found that it is easier to simply roll and pivot from his back.

Sometimes, he is too smart for his own good.

However, his fine motor skills are developmentally advanced. He can grasp small objects and has incredible depth perception, which is a really good sign. Even with some of his physical milestones starting to become delayed, he is sill ahead of the curve with his mental development.

Max has grown some hair in the last month...


This week we have our monthly clinic visit and a checkup/vaccine appointment with the pediatrician so we will have more to update at the end of the week. We are slowly starting to move back to Flagstaff and made our first big trip with stuff over the last weekend. We are really excited to get back home and live somewhere we can actually take Max outside--well, after cold and flu season that is.

Everyone is gross.


Thursday, September 11, 2014

The Rules

As mentioned in our last post, our little family is moving back to Flagstaff--yay! But we've been given a list of instructions from Max's doctors about precautions we have to take, especially since cold and flu season is about to start. Max looks like any other healthy little baby but he's never going to be fully healthy. He will always be immunocompromised and we are going to have to be cautious about germs for the rest of his life.

It's been a huge lifestyle change for us and there are certain things we have to do now. For example, putting away a load of groceries can take 30-45 minutes because everything has to be wiped down with Clorox wipes and the produce has to be washed and scrubbed before it ban be put away. Overkill? Maybe, but here's an anecdote illustrating why we have to be cautious: Jon was once in the grocery store and watched a man cough into his hand, pick up a can of food with that same hand, and then replace it on the shelf. Thinking about the amount of people who have touched the items in the grocery store is enough motivation to ensure you wash that apple before eating it.

Grapes are a whole other kind of disgusting.

The big thing we have to consider is that the symptoms for a cold or flu are EXACTLY the same as organ rejection. We have to treat every symptom like the worst case scenario because it's better to be overly cautious about nothing than dismissive of something serious.

That being said, here are some of the precautions we have to take regarding other people:




1. If you have been sick or been around someone sick in the last two weeks, we can't see you. Even if you're not actively sick, you could still be a carrier and pass that on to us or Max. If either Jon or I get sick, we have to isolate ourselves from Max until the bug passes and that's especially problematic for me because I'm breastfeeding.

This also means that we're going to have to limit how much we see our friends who either go out a lot or work in the service industry. Basically, the more people you're around the greater your chances of exposure. We'll have to, for the most part, love you from afar until cold and flu season is over.

But please remember that we love you so, so much from inside our bubble.

2. If you see us, please do NOT touch Max, especially his hands and face. I don't assume that people are chomping at the bit to put their hands all over my kid, but we have still had issues with the limited people who see him. Just yesterday with not one but TWO people who work at the hospital and know Max is immunocompromised couldn't resist trying to touch his hands and face. Max puts his hands in his mouth so whatever is on your hands goes in his mouth and could make him sick.

We don't want to smack your hand away but we will if we have to.

3. Future play dates can only be with kids who are fully vaccinated. It seems like Max was born in the middle of baby season which is super exciting because we love that so many of our friends have had babies at the same time so Max can grow up with so many awesome kids.

So. Many. Babies.

However, vaccines are extremely important to us because Max can't receive certain shots due to his permanent status as an immunocompromised kid, the biggest of which is the MMR. If we ask you for proof, we're not trying to be jerks--we're safeguarding our son's health.

4. Speaking of babies, Max can't have physical contact with any babies under a year old. The doctors specifically warned us of this and we can't take any chances.

5. If you're in contact with Max or his stuff, please sanitize your hands. Jon and I are pretty much always swimming in it and we always have some on us. This one is more for after cold and flu season since we'll have to stay under wraps for the time being but we'd like to warn everyone that Purell baths are coming.

Truth.

6. Smokers: unless you've recently scrubbed your face and hands and are wearing clean clothes you haven't smoked in, we'll need you to stay a couple feet away from Max. The doctors were very specific with us about this. Several of Max's medications make his delicate baby skin even more sensitive and the chemicals from cigarette smoke that settle on your clothes can pose a serious problem for him. The basic rule is that if you can smell the smoke, the chemicals are there. I know that some smokers become desensitized to the smell but it's still there (and we can still smell it even if you can't).


We know that we can't protect Max from everything. Heck, even with how careful we are he had a minor infection at the end of July. But as I said at the beginning of this post, Max will always have a compromised immune system and organ rejection has exactly the same symptoms as the flu. However, our goal has always been to get Max to where he can live as normal of a life as possible and there will be times when we'll need to go to the grocery store/pharmacy/doctor's office or we'll want to get outside for some sunlight.

We're a little pale.
As he gets older, this will get easier and while we'll always keep Purell in business, Max will be able to be around more people (blood counts permitting). He'll also be able to wear a mask if needed when he's older. For the time being, he's still too little for that so we have to try and keep his exposure to a minimum.

Please, please, please be honest with us about your exposure to illness, yours or someone else's. 

Lying to us or withholding information could put Max at risk of being hospitalized again and if it's serious enough, we might have to move back to Phoenix. All three of us, Max especially, have worked so hard to get to this point and moving back to Flagstaff is a privilege. Please don't take this away from us because you think we're exaggerating, being overly protective, or because you feel like you "need a baby fix." Max's health is the most important thing to us and we will do absolutely everything we can to protect it. I've tried to make this post a little lighthearted but Jon and I are very serious about keeping Max safe and none of these rules are negotiable.



Even with us having to be hard asses about all this, we're very excited to move back and (carefully) see all of you that we love. If you haven't been sick or been around anyone sick, Jon and I can trade off going out to see people provided we try to avoid crowds and all that jazz. Even though Max's exposure has to be limited, we'll be able to take him out more after cold and flu season and we can't wait to show off our little superhero.

In the meantime . . . anyone know where I can get one of these?


Max and His Meds and an Exciting Update

Oh, Max . . . on Monday we went in for Max's heart catheter/biopsy follow up appointment. Everything looks good and his doctors were happy with everything except the high Tacro (anti-rejection/immune suppressor medication) levels from the previous week. The IV team was super busy on Monday so we went back in on Tuesday for a blood draw. That night at about 10:15pm, I got a call from our transplant coordinator informing us that Max's Tacro levels are critically high which can lead to toxicity and kidney failure. She told us that we needed to come back in for more lab draws in the morning and to be very vigilant for signs of dehydration and irritability since no one wants him to have to be readmitted to the hospital for rehydration. Luckily, Max is eating normally and his diapers are par for the course. As for his disposition, about an hour before she called Jon and I had just been talking about how Max was in an excellent mood--go figure. It's like when his white blood counts plummeted and then his persistent diaper rash cleared up in a day or two.

Yeah, we know.
We went back in for more blood draws yesterday and our coordinator rushed the results. The levels are still very high so we're pausing his Tacro and one other med for a couple days to help his system cycle it out to get it back down to a safe level. We'll go back in soon to retest and hopefully we'll see an improvement, but other action might need to be taken if he starts appearing dehydrated.

Luckily, Max is still eating like a champ and everything appears normal, especially his fantastic mood. A medication issue can't keep Mighty Max down!



In other news, we have a big announcement: we're moving back to Flagstaff!

Photo Credit: shamelessly stolen from the lovely Carly Strauss


We are SO EXCITED!

We'll keep his doctors and appointments down here (except for a pediatrician, we'll find one in Flag) which really shouldn't be an issue. We only have clinic visits once a month and after his biopsy at the one year mark, we'll only have clinic visits every 2-3 months. Jon and I also talked about it today and situations like this with Max's med levels might come up where we have to come in a few days in a row for lab draws and if that happens, we'll make arrangements to spend a few days at the Ronald McDonald House adjacent to the hospital and have someone care for the dogs while we're gone.

Our coordinator wasn't worried about us moving further away since she knows we're responsible and have started to plan out what we'll need to put in place in terms of emergency services. The fire station can be seen from the front doorstep of where we'll be living and an ambulance could get Max to the hospital in 8 minutes. If a really big emergency happened, the NICU at the hospital could stabilize him and they could air evac Max down to PCH within an hour.

We've got this.

There are a lot of benefits of moving back to Flagstaff while we get back on our feet after this crazy year. Since Jon and I know more people up north, that will hopefully help him find a job while I continue to stay home with Max. Even though we won't be able to be around many people since cold and flu season is about to start, we'll at least be able to take Max outside. We're going to have to pretty much stay under house arrest as we go forward but we'd rather be on house arrest in Flagstaff than in Phoenix. Once cold and flu season is over, we'll be able to start integrating more into real people life (still with precautions of course since Max will always be immunocompromised) which is super exciting. We were given a list of rules/restrictions by our doctors that we'll have to follow which I'll post soon in a follow up blog.

It may sound silly but they're necessary to keep him out of the hospital.

Moving is going to be a process. We're doing it in stages to minimize the amount of exposure Max and his stuff have to people. First, Jon will take a truck of stuff up to Flagstaff to try and move the bulk of our possessions, including as much of Max's stuff as we can. Once the truck is unloaded, Jon will sanitize everything and move Max's stuff into his new room before sealing it off from the rest of the house. A couple weeks after that, Max, the dogs, and I will move up to Flagstaff. Jon will then come back down to get the last few items from Phoenix before cleaning and turning the keys back over to the property management company. We're trying to beat cold and flu season as well as minimize Max's exposure to dust and people. It's a big convoluted but luckily we have some time to space things out so we're not rushed and trying to do everything at once.

Have I mentioned that we're excited? Because we're super excited.

FLAGSTAFF, WE'RE COMING FOR YOU!!!

Thursday, September 4, 2014

7 Months Old! Updates and FOOTBALL

Yesterday our little superhero turned seven months old! We've been though so much but looking back I'm wondering where the heck all the time went.

Oh, right.

Since the biopsy, we've mostly just been hanging out at home (are you surprised? I bet you're surprised). It took about a week for Max to get back to his normal routine after the biopsy since the anesthesia really does a number on him but he's back to being his usual, happy self.

Unfortunately, we've had to go back last week and then again this week for more blood draws since his anti-rejection med level still isn't quite right. I hate that the IV team has to poke him in the big vein on his head but at least they don't have to do multiple pokes like they need to with other kids. Our transplant coordinator is trying to help us consolidate our appointments though, which is nice, and instead of going in for his biopsy/catheter follow up appointment today, we're going in next week on the same day we're getting the next round of blood draws. We also have a physical therapy appointment next week to get him checked out and make sure no complications arose during his procedure.

Gotta love physical therapy.

Outside of all the medical stuff, things have been going well. Max recently discovered that he has a tongue and has been sticking it out at us at every opportunity which is hilarious. His favorite book at the moment is Dr. Seuss's "Mr. Brown Can Moo! Can You?" and he will insist on multiple readings in one sitting.

At our house it's more like "Mama can moo!"

I nearly have it memorized at this point but that works out in our favor. If Max is being grumpy during a diaper change, I can usually distract him by reciting parts of the book.

Pictured: me

Today we're getting ready for the start of football season which, at our house, is like Christmas and all of our birthdays rolled into one.

I miss John Madden.

Courtesy of Jon's aunt Patty, we're going to dress Max up in a onesie to make him look like a football for today's game and then on Sunday he'll FINALLY get to rock his Peyton Manning onesie. When I first told Jon I was pregnant, I gave him that onesie so this has been a long time coming.

We love you so much, Peyton.

FOOTBALL!!!!!!


Thursday, August 21, 2014

Six Month Biopsy and Results

On Tuesday morning, we all got up in the very small hours of the morning and hauled ourselves down to the hospital for Max's biopsy and heart catheter. Luckily, the exhaustion kept some of my nerves under control because I hate having to take Max in for procedures. I'm always worried about what's going to happen when he's in there but I also hate having Max taken away from me. It's always for an important medical reason, but it doesn't make it any easier. When he was born, he was immediately taken away to the NICU. That same day, he was taken away to be transferred to PCH. A few days later, he was taken away for his transplant. When he was five weeks old, he was taken away for his first biopsy. It's just hard to have to hand my baby to someone else and have him removed from me. Even though I knew it was coming, I teared up when I had to hand him to the surgical nurse. That's one of the worst feelings.


Fortunately, the procedure didn't take very long and our transplant cardiologist came out to talk to us, flashing us an "everything's okay" sign from across the room (we LOVE that he does that). The first thing he said when we reached the consultation room was, "Max is a rockstar," and he told us that everything went well. He said that if he had to be nitpicky, the pressures in Max's heart are higher than they were at his last biopsy but they're still in the normal range, they're just high normal. 

Shortly after that, the anesthesiologist (who happened to be the same anesthesiologist from Max's transplant) came and got us and told us Max was in his recovery room and awake. When we got in, the poor guy was coming out of anesthesia and he was clearly in hell. He screamed for about 45 minutes but as the anesthesia wore off, we were finally able to calm him down. Max then got an EKG and an echo from one of our favorite echo techs who told us that when the techs all saw him on the schedule, they all fought over who got to give Max his echo. Mighty Max is quite popular. 

We had to hang out for a few hours to make sure Max didn't have any adverse reactions to the anesthesia and then we got to take him home. The rest of the day was spent resting and taking naps--for all of us. 


Jon and I were each running on about one hour of sleep.


Our transplant cardiologist expected the results of the biopsy to arrive around noon on Wednesday so we spent the day waiting and anxiously staring at my phone. At one point in the middle of the afternoon, I checked in with our coordinator who told us that the results weren't back yet. Then we remembered that the lab is notoriously slow and we resigned ourselves to waiting for another day.



Except Christmas could either be great news
or horrible news resulting in the need for another transplant.

This is also relevant.


I finally got the call this morning from our transplant coordinator with Max's biopsy results. The short answer is that Max is okay, but it's more complicated than that.



Of course it is.

As I've said before, there are two types of organ rejection, nicknamed dumb cell and smart cell. Our transplant cardiologist was worried we'd see some dumb cell because Max has been off one of his anti-rejection meds (CellCept) and that worry was amplified with Max's blood work at the biopsy when we saw Max had outgrown his current dose of the anti-rejection med he's still on (Tacro) and we had to double it. When our transplant coordinator called me today, she said that they found very mild signs of both dumb and smart cell rejection.

She said that they started using a new grading scale for rejection that is much more severe. On the old scale, Max would have been completely negative for both types of rejection but on this new one, he's registering for a little bit. They're experiencing that with one of their other transplant kids who was totally negative but is now reading a little mild rejection of both types with the new scale. 

So what does this mean for us now? Honestly, we're not changing much. We're upping his dosage of Tacro but as of today, there hasn't been any talk of reintroducing CellCept yet. That isn't to say we won't in the future though--we're still dealing with low blood counts since they dropped back down after his infection. But they're higher than they were initially so we're still on a slow increase. 

Yup.

Our plan at the moment is to just keep doing what we're doing. We're upping his Tacro, we'll keep monitoring his heart function at monthly clinic visits (as of right now it's still great), and we'll keep watching for signs of rejection--basically what we've been doing this whole time. 

We can schedule his six month well baby visit with the pediatrician to get his vaccines started which is nice and then we can start moving forward with our lives. Even with these mild signs of rejection, we won't need to do another biopsy before he's a year old unless something drastic happens which is great--I hate taking him and having to have him put under anesthesia. 


So that's where we are! All in all, it's good news. My heart stopped a little when our coordinator first told me they found mild signs of both types of rejection but put into perspective with the new scale, these are pretty good biopsy results.

Friday, August 8, 2014

6 Months Post-Transplant: The Other Side of Organ Donation

I've been wanting to do a blog post about this for a couple weeks now and I suppose that today, six months post-transplant, is as good of a time as any. Two weeks ago, Jon and I received a letter from Max's heart donor's family via PCH. We knew it was always a possibility to hear from them and we most likely wouldn't hear from them for six months, if ever. But in our daily lives, it's easy to navel gaze and forget to think about anyone outside of the three of us, especially when we're on house arrest and really only spend time with each other.

Receiving that letter was a much more emotional experience than we expected it to be. Out of respect for the donor family and for our own family's privacy, we have elected not to share the contents of the letter or any information about the donor. We will say, however, that they seem like nice, loving people. For me, this sort of feels like a double-edged sword: on the one hand, it makes me feel good to know that Max's heart came from nice people but on the other hand, it feels that much more tragic that a nice family lost their baby so ours could live. But, that's the two-sided coin of heart donation: the death of one person gives life to another.

This family has given us something that we can never even hope to repay. As writers, Jon and I love words but I find that even as I write this, all the words I have at my disposal are inadequate to express all the emotions I felt and still feel about Max's heart transplant. I'm devastated that they had to experience the death of their child. I'm grateful that this family elected to donate their child's heart in the wake of their tragedy. I'm joyful that Max received a heart and that, six months later, we spent our day playing, laughing, and taking pictures with him. All of these emotions are intertwined and inextricable from one another.

There's a certain level of survivor's guilt that comes from receiving an organ donation for our family, at least for me there is. It feels like one of those unanswerable questions: why did this family have to experience such a painful loss while our family got to keep Max?

On the day of Max's transplant, in the hours leading up to his surgery his kidneys started to fail and if they had, his other organs wouldn't have been far behind. The doctors might have been able to buy him some time but we were facing the very real possibility of losing our son that day. Even the smallest stimulation caused his numbers to drop drastically which meant that I wasn't allowed to even stand at my son's bedside because my presence was too much for him. Instead, I sat across the room and stared at the monitors, watching the numbers dip into the red warning zone, take one step up, and then sink down two more.

I was terrified that I was just watching my son die and I'd never even gotten to hold him. I hadn't even heard his voice yet.

Max's donor heart came through in the nick of time and, thanks to the strength of that heart, the incredible talent of his surgeon and the transplant team, and Max's fighting spirit, he made it through. More than just made it through, Max has thrived. Yes, he's had low blood counts and we just dealt with his first infection, but Max has exceeded the doctors' expectations.

We are so thankful for Max's donor and that child's family. They didn't just save Max's life, they saved Jon's and mine, too. We are immeasurably grateful to them every day for the gift they've given us.



If you're friends with me on Facebook, you've probably noticed that I share a lot of statuses from Organdonor.gov. I encourage everyone, if you feel so inclined, to sign up to be an organ donor. It doesn't matter your age, ethnicity, or medical history--anyone can register as an organ donor and a donor can save up to eight lives. When we found out Max would need a heart transplant, Jon and I both registered as donors and we encourage others to do the same in honor of Max's donor.

Friday, August 1, 2014

A Feverish Update

After Jon posted the last blog update, we all got some much needed rest after such a long night and day of worry and a visit to the hospital.



Max and I napped for a couple hours and when we woke up, his forehead felt drastically cooler. We took his temperature and it was perfect: 98.6.  We've taken his temperature several times and each time it's been in the 98 range which is exactly where we want it. His mood has improved and he is back to his normal, happy self.

About an hour ago, we got the results back from his lab work. Regular readers of our blog know about our struggle with his white blood counts over the last few months. We've had to pause three medications and his numbers are generally in the mid 2,000s to low 3,000s (average is around 7,000 for normal people, we were aiming for 5,000). We got the results of his counts back and they're at . . .

7,900.

I believe my exact reaction when she told me was, "HOLY CRAP!"

Our transplant coordinator said this is probably the result of three things:

1. The medications we paused have had more time to cycle out of his system which would allow for more production of white blood cells.

2. Max let us feel his gums with a (gloved) finger last night and we felt the start of a tooth breaking through on the upper left. Since the body reads a tooth breaking through as an "injury," it can cause a fever and an increase in white blood cells.

3. He's probably been fighting off a mild viral infection which caused his body to produce more white blood cells.

This is a really good sign that his body is able to produce the white blood cells in order to fight off an infection--although how the hell he got an infection is beyond us. We live in a Lysol can.



This also means that we don't have to check him into the hospital to provide him with an immune system, his is doing its job. This is a double edged sword though because his counts are currently higher to deal with this infection but now we're just hoping that once the infection is gone, those white blood cells don't look at his heart and go, "Wait a minute . . . you're different . . . I should probably bounce you from this body."



So where are we at now?

We're still very much on lockdown. Our transplant coordinator warned us that we're not out of the woods just because his fever broke. That fever, even if it's no longer an active symptom, can be just the warning sign of other symptoms that might show up while this viral infection runs its course. We're going to have to continue to closely monitor Max and if anything arises, we'll be back on the phone with the transplant team to do this all over again.

His blood counts are up but we have to be aware because higher counts equal a greater chance of rejection. Plus, he's still very susceptible to the infections that his paused medications help prevent. Now that his counts are up, we'll most likely be able to start them again (probably after his biopsy later this month) but that could make his counts plummet again. It's like riding a not very fun seesaw.

It's okay, Keanu. We understand.

To summarize . . . our immediate situation is better because the fever has broken but we have to watch him closely while this infection works its way out of his system. Our house arrest is also going to continue for three reasons:

1. He's still fighting off whatever mutant, freakish thing he manage to contract despite our Purell baths.

2. We don't know how long this huge spike in blood counts is going to last and we don't want to risk exposing him to anything else, especially so close to the biopsy.

3. He hasn't been able to get any of his vaccines yet but that will change after his biopsy.

Long term, we need to keep an eye out for further symptoms and hope we don't see anything indicative of rejection. We'll get answers about rejection after his biopsy later this month so fingers crossed for now.

It's an uphill journey but we're taking baby steps towards progress!

If you recognize this movie, we're obviously meant to be friends.

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!