Wednesday, March 26, 2014

What Post-Transplant Life is Really Like

We've had a lot of questions recently about what life post-transplant for Max is and will be like in the future. A heart transplant isn't the final step in the healing process--it's the first. He's doing extremely well at the moment but as his parents, Jon and I are going to have to be very vigilant about so many aspects of Max's life as he grows up. The advantage to his transplant taking place when he's so young is that with all of these regulations we have to implement, he won't know any different. This will just be the way things are instead of having a life and experiences pre-transplant and having to readjust.

Organ Rejection

Organ rejection is a lifelong concern for Max because at any time, his body could try and build up antibodies to try and fight the foreign object inside of it. One of the medications he'll be on for life is a combination anti-rejection/immune suppressor and taking it is a balancing act. If he's on too much of this medication, it can make his body toxic, but if he's not on enough, he runs the risk of rejection. Since leaving the hospital, Max's dose has changed every time we've gone in for his clinic visits and had blood draws and it will continue to change as he grows.

The earliest warning signs of rejection all read as flu-like symptoms: fever, chills, body aches, nausea, coughing, or shortness of breath. Unfortunately, it's impossible to differentiate between rejection and the flu from the outside, which means that every time he seems to be getting sick, we have to go to the hospital immediately. And it's not just for the flu--it's for any kind of illness he might contract due to his suppressed immune system. Which leads us to . . .

The Sniffles and Other Illnesses

We have to be so careful about what germs Max is exposed to, especially during this first year and ESPECIALLY these first few months, because any kind of sickness could get him hospitalized. Max still has a diaper rash that developed when he was in the hospital and we and his doctors are keeping a close eye on it. We're doing everything we can to help manage it and thankfully it seems to be going away but Jon and I even have to wear latex gloves when we change him so we don't accidentally expose that sensitive, susceptible skin to our bacteria. Our transplant cardiologist warned us before Max was discharged that he's seen kids have to be readmitted to the CV ICU for diaper rashes and frankly, I'm kind of worried that his rash has been so persistent.

Max survived a heart transplant at only five days old.
We can't let a diaper rash take him out.

This concern about germs and illnesses is what's led us to be so cautious and have to basically quarantine Max for these first few months. Jon has installed wall-mounted hand sanitizer stations throughout our house, we're very diligent about hand washing, and we take extra precautions when we've been out in public, whether it's changing our clothes, showering, or wearing a mask for a while when we first come home. We don't want to do anything that could compromise Max's health so we try and prevent as much as we can, which leads us to . . .


As a transplant recipient, Max can never receive any live vaccines such as the MMR. Obviously, this means he is much more susceptible to diseases such as the measles. The concern for us, of course, arises because of how many people have been irresponsibly not vaccinating their children. As a result, there was a pertussis (whooping cough) outbreak in Colorado and a recent measles outbreak in New York. Both of these diseases are so easily preventable but it seems that too many parents have chosen to not vaccinate their kids.

It's long, but illustrates the ridiculousness of the anti-vaccine argument.

I might sound like I'm on my soap box, and you know what? I am. But I find the anti-vaxxer attitude to be so selfish. If you are going to live within a community, I think you need to adhere to certain practices for the health of the community. I suppose one could argue that I'm being selfish in wanting other people to vaccinate their kids because mine can't receive certain vaccines but it's not just Max--other transplant kids, pediatric cancer patients, and newborns are all unable to receive certain vaccines and not vaccinating kids that can receive them puts all the others at risk. The decision to not vaccinate is not medically founded, other than on one erroneous study that was discredited years and years ago. Vaccines don't cause autism and they protect us from disease. Without them, our world is seeing diseases like polio resurface.

You suck, Jenny McCarthy.
I mention vaccines because they will come into play when it's time for . . .


Max's medications and what immune system he has should be fairly stabilized by the time he goes to school. However, Jon and I obviously can't check all of the other students' medical records to ensure that they're up to date on vaccines. We also can't screen all the kids as they arrive at school each day to make sure they're not going to school while sick.

"You know what, you're all disgusting.
Everyone go home."

We're going to have to make sure Max goes to a school with a strict vaccination policy and that we have good communication with the school nurse so that if there is an outbreak of the flu or anything else, we'll be notified and we can get Max to his doctors to have him checked out.

The same applies to any after school activities in which he might want to participate and depending on his immune system, he might not be able to do things like contact sports. Also, as Max gets older, we're going to need to communicate with his friends' parents for when he plays at their houses, not only about if anyone has been sick recently but also because of Max's . . .

Dietary Restrictions

Max is going to have a lot of dietary restrictions when he's older due to his need for a low microbial diet. He'll need to be on the usual heart healthy diet (and probably be on cholesterol controlling medication by the time he's ten no matter what) but he also has a long list of additional restrictions.

Here are some of the things he can never eat:

Dairy: anything unpasteurized, deli cheese, cheese containing chili peppers or other uncooked veggies, cheese with molds (ex: blue, Stilton, gorgonzola, etc.), soft cheese (ex: brie, camembert, feta, etc.), powdered infant formula, cookie dough/cookie dough ice cream, probiotic yogurt

Back up, Jamie Lee Curtis.

Meat and Meat Substitutes: raw or undercooked meat (no steaks cooked less than well done), raw or undercooked eggs, meats and cold cuts from a deli, hard cured salami in natural wrap, smoked seafood (ex: lox), pickled fish, tempeh products

Fruits and Nuts: unwashed fruits, raw nuts, roasted nuts in the shell, non-pasteurized fruit and veggie juices, fresh berries, grapefruit (can interact with his medications)

Vegetables: unwashed veggies, fresh, non-pasteurized salsa found in the grocery refrigerator case, all raw sprouts (alfalfa, mung bean, etc.), salads from a deli

Soups: all miso products

Bread, Grain, and Cereal Products: raw grain products

Beverages: well water, cold-brewed tea made with warm or cold water, mate tea, ice from ice machines in public places

Desserts: unrefrigerated cream-filled pastry products, soft-serve ice cream/ frozen yogurt

Fats: fresh salad dressings stored in the grocer's refrigerated case

Other: raw honey, honey in the comb, herbal and nutrient supplement preparations, brewers' yeast (if uncooked)

Max can also never eat at self-serve frozen yogurt places, buffets, potlucks, or from sidewalk vendors. These all make sense due to the higher chance of spreading germs but it's something that probably wouldn't have occurred to us.

Deep down, I think we all know that sneeze guards are largely for show.
We also need to be very careful of food storage and prep in our home. In addition to the usual safe food handling practices like avoiding cross contamination and storing food at safe temperatures, we have to be pretty OCD about cleanliness: changing out dishcloths and towels daily, sanitizing EVERYTHING with a diluted bleach solution: counters, fridge, etc., and even washing produce that is going to be peeled, such as bananas, melons, and oranges.

We also have to be careful about leftovers. They have to be reheated to a safe level and disposed of quickly if they're not eaten within the next day or so after the food was originally prepared. Basically, we have to make sure our kitchen does not have any opportunities for bacteria to grow.

Basically, all of my time will be spent cleaning and sanitizing the kitchen.

The benefit of Max being so young is that Jon and I have the opportunity to implement all of these dietary adjustments for ourselves so that by the time Max is old enough, he won't know a different lifestyle. The list seems excessive but if you think about it, if we eat a healthy diet and follow safe food handling practices, that will take care of most of Max's restrictions. As for the foods that he can't eat, we'll just have to treat them like allergies.

Other Activities

Jon loves to garden and when we found out we were having a baby, he started to look forward to sharing that with our child. And he should still be able to--but now we have to be extra careful because of the various bacterias that could be in the soil. Gardening gloves are an absolute must and, depending on his immune suppressors, he might need a mask as well. Max also shouldn't be exposed to animal fecal matter which means that he has a free pass from cleaning up after the dogs.

The may look sweet, but they're full of lies.
And poop.

With all of Max's lifestyle regulations, our lives have had to change a lot. We knew that they would change just from having a baby but we've had to make even more shifts than we thought. And while we have to be really concerned about germs and Max getting sick, we don't actually want him to live in a bubble (except for this first six months to a year--doctor's orders). As Max gets older, we'll do what we can to help protect his health. But there are some things we simply can't predict or protect him from, such as . . .

A Possible Second Transplant

There is a very real possibility that Max will need another heart transplant when he's older. The heart he currently has should grow with him but every transplant kid is different. The average lifespan of a donor heart is around nineteen years which means that there are kids who need a second transplant when they're very young and there are people who received pediatric heart transplants and are now in their thirties and going strong. It's impossible to tell which end of the spectrum Max will fall on because, like with everything else about his health, it's a "wait and see" situation. However, we're hopeful that he won't have to undergo this again and all we can do is protect his health and his new heart as best we can.

Saturday, March 22, 2014

Roly Poly!

Guess who rolled over for the first time this morning?!

Max rolled from back to front this morning and we're super excited about it. He hasn't been able to do any official tummy time because we've had to wait until six weeks after his chest closure. However, that six weeks is going to be up on Wednesday and because he already rolled over, we checked with our transplant coordinator and she gave us the green light to start traditional tummy time. We've been able to do a modified tummy time to help with his neck strength by holding him up to our shoulders in a kangaroo hold but we're very excited to start traditional tummy time!

But that will have to wait until later this afternoon. He's currently asleep on my chest in the baby carrier :-)

Friday, March 21, 2014

Clinic Visits, Tube Freedom, and Photo Shoot Results

Hi, everyone!

It's been another busy week for us with Mr. Max! It's still wonderful to have him home (even when he decides we all need to be awake starting at 4am).

Max's health has been moving in exactly the direction we want it to. There are no signs of organ rejection at this time, his magnesium levels seem to have evened out, and we're able to start him on his other anti-rejection/immune suppressor medication that we'd had on hold while we got the magnesium under control.

Some of the best news we've had lately is . . . Max no longer has to use his NG tube! He's been doing so well with taking his food and medication orally that we were able to lose the tube. Max seems MUCH happier without it and I can't blame him--I'd feel so much better to not have something jammed up my nose all the time, too.

We also had some exciting news at the hospital this week. We've been going in a couple times a week for clinic visits where Max has his blood drawn for labs, the doctors give him a quick exam, he gets an echo or an EKG, and we discuss how he's doing with either the transplant coordinator or Max's transplant cardiologist. He's doing so well that instead of having to come in twice a week for clinic, we're being moved down to once a week. This is huge because we didn't think we'd be able to do that for several months, so this is a great sign that they think he's doing so well. Also, this keeps us from having to hang out in the waiting area for the blood draw station which, I'm pretty sure, attracts the sickest, most unclean people in the hospital outside of the ER.

This is a much nicer picture than one of a seventeen-year-old who doesn't cover his mouth when he coughs.
Or of sick children crawling around on the floor.
Of a hospital.

On an unrelated note, I wanted to follow up on one of our last posts when we talked about our impromptu photo session with some of Max's medical team. We received the photos yesterday . . . and Jon and I look about as homeless as we expected. We keep forgetting that we look fairly normal by Flagstaff standards but in Phoenix, you don't run across very many white dudes with dreads who aren't living in a bus station.

Of course, the doctors all look great and Max is, naturally, so cute it hurts. There were some cute moments in the photos like how Max's surgeon and his cardiologist seemed to keep trading off which one of them was smiling at Max. And then there were some funny moments like how towards the end of the photos, my smile got really strained and awkward and Jon's eyes were slowly closing bit by bit in each picture because he was so tired.

But there were some really great photos in there and hey, now we have our first family photo taken by a professional!

Next week, even though we're only down to one clinic visit, we'll be at the hospital a few times because Max is going to start his various therapy appointments (speech/feeding, occupational, and physical). We'll keep everyone posted but in the meantime, we're just enjoying our Max!

Thursday, March 13, 2014

Clinics, Biopsies, and SuperMax

Hey all!

It has been another busy week with little time to spare, so we have found it difficult to find time to update everyone before now.

On Tuesday morning, Max went in for his first cardiac catheterization and biopsy to check his heart function and test the muscle tissue for any signs of rejection (he will have many of these throughout his life, and anywhere between 3-6 this year alone). The process is relatively simple and involves inserting a catheter, which is a thin and flexible tube used for a variety of purposes, into the internal jugular vein and down into the various chambers of the heart.

Just like this. Only on a much, much smaller scale.

This probe checks heart function, internal pressures, and is also used to take small pieces of the organ to send off to the labs for examination. These tests check specific levels and can determine if the body is beginning to develop any type of cellular immunity--in the form of T cells, also known as cytotoxic T lymphocytes (smart cells)--or if any antibodies are present in the form of observable B cells (dumb cells). Even though there are various outward signs of rejection, a biopsy can often detect these changes long before any other symptoms arise, thus making it easier to battle any potential rejection of the foreign organ.

Wrong kind of "dumb cell."
Dad jokes.

While the physicians had a direct line into Max's heart, PCH's Doctor of Electrophysiology used this as an opportunity to test the electrical patterns of the organ since Max has had issues here in the past. This doctor attempted to stimulate the heart in such a way that could elicit an arrhythmia or any form of electrically-related tachycardia. Luckily, Max's heart behaved normally and did not respond to this stimuli.

Pictured here: a scientifically accurate depiction of Max's heart.

After both the cardiac cath and electrical study were completed, Max was released back into the CVICU for monitoring since these procedures are not free from risk and complications. This was a nice opportunity to see a number of our former nurses and for them to see how well Max was doing. Our transplant coordinator and primary doctor wanted to wait for the results of Max's earlier blood tests and initial biopsy results so they could potentially remove the RA line while Max was admitted to the hospital if everything looked acceptable.

After what seemed like days back in the hospital--it was NOT fun to be back at all, especially after having to check in at 5am after a sleepless night with Max--we received the preliminary results back from the lab.

Drum roll please...

Not only had Max's magnesium levels risen since our last appointment last Thursday, but his biopsy showed that he has absolutely no signs of rejection whatsoever; he scored 0 for 0 on his lab test. This was such an incredible and relieving discovery since this was the next big hurdle we had to get over. So, with the mag levels steadily increasing with just oral meds and no signs of rejection, Max was cleared to have his right atrial line removed, meaning that we would no longer be responsible for flushing this at home (terrifying) and we could get rid of this potential source of infection and discomfort for Max. Removing the line was a mini-procedure in itself, since the line had been in there for a month and has a small cuff beneath the skin to hold it in place, but once again, Max held strong and came through with flying colors.

We were back at the hospital today for a clinic visit and to make sure Max was doing well after the multiple procedures on Tuesday. The boy was looking great, gaining weight, and doing what babies are suppose to do: eating, sleeping, pooping, and being awesome. Since he had his line removed on Tuesday and no longer has a way for the team to gather noninvasive lab draws, Max had to have his first poke today. Since one of the best veins is in his head, they took the draw from here. Yes, his head. Even his cardiologist winced when hearing about this, so you are not alone.

But, once again, Max is a tough baby and was fine as soon as the draw was completed. His blood even coagulated very quickly despite being on mild blood thinners; what a badass kid!

Everything at home has been amazing. We have been able to spend nearly every waking moment with him and have started to develop our own family routine. It has been amazing to be able to feel like a normal family for the first time ever and to have many little moments free from the hospital, heart transplants, medications, outside germs, rejection, and knowing that Max is sick. We have been cherishing the small moments and every day is new and a step in the right direction.

Sunday, March 9, 2014

A Special Thank You

We also wanted to say a special thank you to everyone who has been supporting us. Thank you to Flagstaff and The State Bar for the incredibly generous fundraiser, thank you to everyone who has donated via our online fundraiser, and thank you so much for the prayers, positive thoughts, support, and love that you've given to our family and especially to our son.

Max means everything to us and we feel so loved and humbled by the outpouring of generosity that we've received. Thank you so much.

Finally Home and One Month Post-Surgery

As mentioned in the last post, we FINALLY got to take Mighty Max home on Wednesday!

Since then, we've primarily been nesting at home with our boy and today we celebrated that he is one month post-transplant!

We've also been adjusting to his routine with his feeding schedule, meds, and so forth which has resulted in some very tired parents. However, it's kind of nice because it makes us feel like regular parents of a new baby. We would also take sleepless nights of getting up every ten minutes over him still having to be in the hospital any day of the week.

Just because Max has been released from the hospital doesn't mean he's out of the woods by any means--he's just in the less scary woods. He still has to go back for clinic visits at least twice a week and the doctors have ordered us to basically lock our doors for three months because of his fragile immune system. Even now, we have to keep a very close eye on his diaper rash because it could get him readmitted to the hospital.

He's only on one of his two anti-rejection/immune suppressor medications right now due to his magnesium levels (which are finally going up for the first time without the aid of an IV--yay!) and they're constantly having to monitor the one he's taking. It's a fine line trying to balance that medication because if it's too low, you run the risk of infection and if it's too high, his body becomes too toxic.

Like this, but with medication.

The doctors have told us that ideally we should keep people out of our house but if people do come over, they absolutely need to wash and sanitize their hands and preferably wear a mask, even if Max isn't in the room because people bring in outside germs that could really wreak havoc on his compromised system. Even at clinic visits, Jon and I are the ones that hold him and the doctors and nurses are careful to wear gloves if they touch him.

"Okay, now bring the baby over here."

Our transplant coordinator, while she stressed all of these precautions to us, told us that she knows it'll be hard since everyone is excited about Max and his homecoming but what's important is protecting his immune system so he doesn't have to be readmitted to the hospital and that there will be lots of time for hugs and cuddles with people in a few months when his immune system isn't in such a danger zone.

Even with all the extra precautions and the fact that our bedroom has essentially been turned into a hospital room with all the machines and equipment we need so he can be constantly monitored, it feels SO GOOD to have him here! Jon and I are still washing and sanitizing our hands like we have OCD and doing tons of laundry to keep everything clean, but having Max with us makes it totally worth it--even if he did pull out his NG (nasal) tube four times during his first night home.

I mentioned before that we have lots of clinic visits at PCH. We had one on Friday to get his medication levels tested and when we arrived on the cardiology floor, all of the heart doctors were having their photograph taken in the lobby. Max's surgeon was among the group and he started waving excitedly at us. They paused the photo shoot so Jon and I could scoot by with Max for his appointment but then all the doctors wanted to get a glimpse of Max and see how good he looks now that he's out of the hospital. The doctors all started to joke that maybe we should get Max in the picture with the doctors because he looked great. We laughed and continued on to our appointment.

Apparently, that wasn't really a joke. Max's surgeon came back to find us after the doctor pictures were done and asked if we'd be interested in taking pictures since the photographer was already there. We agreed but we felt a little apprehensive because we hadn't exactly prepared to be on camera. I was wearing a sweater that adds about four inches of bulk to my frame and Jon was wearing a beat up sweatshirt and neither of us was looking particularly groomed at 8am.

"Sure . . . we can take some pictures . . ."

But I suppose no one will be looking at us and Max looked adorable as usual.

The surgeon then ran around the hospital trying to round up all of Max's doctors so we could get as many of them in the picture with us as possible. The cardiologist who'd been with us since I was pregnant was unfortunately at St. Joseph's and one of our two transplant coordinators was on maternity leave so we couldn't get them in the picture. Our transplant cardiologist had apparently snuck out the back door of his office to avoid being in more pictures but when the surgeon got him on the phone and said, "But it's for Max!" he came back down and joined the group.

I keep forgetting that Max is actually a pretty big deal. I mean, he's obviously a big deal to us and to all of the wonderful people that support and love him, but he's also the youngest heart transplant that PCH has ever seen and the fact that he's recovering so well and so quickly is pretty impressive.

The photographer is going to send us a CD with some of the pictures of our cleaned up and photo-ready doctors, an adorable Max, and his homeless parents. Photoshop can fix that, right?


Wednesday, March 5, 2014

The Greatest of Days

Sound the alarms, Mighty Max has finally been able to come home!
Today has been incredible. Rare are the moments in life where true bliss is felt, and today was one of those coveted moments. We couldn't be happier to finally have our little family all together.

Even though we are home, the journey ahead is still long. We will be back at the hospital tomorrow, and Friday, and Monday, and Tuesday, etc., but the important thing is that we get to sleep at home and bring the little man with us. The hospital visits will eventually decrease in frequency, but for the next 3-6 months we will be there multiple times a week for checkups, tests, medication alterations, and various procedures. Keep your fingers crossed that his magnesium levels stay in an acceptable range and everything continues to go as well as it has been.

Max is ready to go!

Now it is mainly on us to keep him happy, safe, and most importantly, healthy. It will be difficult to keep him generally isolated in a big city and limit his exposure to outside contaminants for the next year, but that is merely a small bump on the road ahead and we are up to the challenge. 

We thank you all for the copious love and support you are all graciously giving our family. We heard that the fundraiser at The State Bar was a resounding success and we don't even know how to go about thanking you all. We are overwhelmed with gratitude and and love and can't believe how fortunate we are to have such wonderful people in our lives. Max is truly blessed to grow up in a world with such amazing folks and such a large and loving family.

I don't think we can ever thank you all enough or let you know how truly grateful we feel for each and every one of you. This last month has been the most difficult month of our entire lives, but knowing you all were there, standing by our sides, made it that must easier to buckle down and march ahead. 

To the future, onward, and upward.

Sunday, March 2, 2014

Stay the Course

Hi friends! Today Max is officially one month old!

Looking better everyday!

Adventures with Mighty Max continue, but instead of a bumpy roller coaster, we have hit a patch of doldrums for the last few days, which although tedious, is much preferred. The boy is doing incredibly well and makes great strides every day. He is beginning to fill out a bit more and for the vast majority of the day we just get to be normal everyday new parents getting to know their child. Max's release date is seemingly always "tomorrow," but hopefully one of those preditctions will actually come to fruition.

Always tomorrow. 

As we mentioned before, Max's magnesium levels have been rather low and his body is having a hard time regulating this chemical. His is on both oral and IV mag supplements and replacements, but it seems as if little is being retained throughout the day. Magnesium is a vital component of a healthy system and is directly correlated with a normal heart function. Consistently low mag levels have some pretty serious side effects and since Max has had some rhythm issues in the past, monitoring these levels is extremely important. Luckily, these low levels have not caused any arrhythmia or new runs of SVT (Supraventricular Tachycardia) or EAT (Ectopic Atrial Tachycardia), so that is a definite plus.

This is a relatively common issue for heart patients--especially the younger ones--because a variety of the medications Max is taking are hard on his GI tract have the common side effect of flushing out the system and therefore flushing out essential nutrients. Many of the meds are necessary to prevent fluid retention and build up around the heart and to keep the kidneys healthy and able to handle the crazy drug cocktail. However, in order to treat these side effects of a heart transplant, often new side effects are created as a direct result. It is a vicious cycle. 

Something like this.

Since Max's magnesium levels are one of the only things keeping him from discharge--along with weight gain and consistent stools, but these three are all related--the doctors have started to refer to him as a "mag hostage."

The magnesium, it belongs to me now. 

As of this last Friday, Emily and I have started what is referred to by the PCH staff as "nesting." Basically, Emily and I are the officially the now primary caregivers to Max and the nurses are only here for auxiliary support (and to continue to take care of things like sterile dressing changes and giving him IV medications). We are in charge of his feeds, giving him his medication, keeping him on schedule, and everything else involving his medical care. Instead of the nurses bringing us his various medications on time and reminding us to do things, we have to seek them out, ask for the correct medications and basically illustrate that we are capable of not breaking the baby.

It all boils down to one thing: don't shake the baby.

Even though we have pretty much been doing this for the last week or so, one of us is now always at the hospital 24/7, which can be fairly draining at times. Luckily, we have been very involved from the start, so this transition was extremely smooth and relatively minor. Now that Max is taking almost half of his feeds from the bottle, it has been really nice to be able to bond with him in that fashion. Being up at midnight, 3am, and 6am for feeds and medication leaves much to be desired, but it is absolutely worth it in every sense.

That. Face.

If all goes well, Max has a tentative release date of tomorrow, but his mag levels were low during rounds tonight so he is scheduled to get transfusions throughout the day. If his levels stabilize, hopefully Tuesday is the first realistic day that we could actually have him home. He should be getting his pacing wires out tomorrow among other things, and there is still the possibility that we will have him home tomorrow night. Fingers crossed for good levels and continued progress!