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.