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.


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'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.


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.