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?

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