Germs and Her Heart - It's that Time of Year

Virus, sickness, germs…  With flu season approaching, I always get questions about Mallory and how we deal with this time of year.

Considering a crazy virus (and that is all we will ever know about what it was exactly) is why we are even here talking about Cardiomyopathy and a Heart Transplant, I am shocked that Dustin and I haven’t put Mallory in a bubble yet!  But, surprisingly, we haven’t – and have no plans to do so anytime soon – even post-transplant.

Obviously, getting another crazy virus would be bad for Mallory – both now and even more so post-transplant.  Our biggest concerns this time of year of course is the flu, but also respiratory viruses.  Any virus that affects her respiratory system would make it hard for Mallory to breath and very hard on her lungs and her heart. And, because she already works harder than most kids because of her enlarged heart, this could be detrimental for her.

This time of year is always hard for Dustin and I.  Our family is very conscious about germs - especially during cold/flu season.  And, we have always struggled with explaining that to others.  We always have only asked for common sense – or what we would think is common sense.  But, that still always puts us and our family in a difficult position.  I have learn to accept that sometime we are the bad guys – but as a parent you do what you need to do to protect your children.

This will be the first year that Mallory does not get a monthly injection during cold season called Synagis which helps protect her from RSV.  RSV (Respiratory Syncytial Virus) is very common and easily spread.  It is the #1 reason babies under 1 year old are admitted to the hospital.  Mallory was considered a high risk infant, and those 2 and under qualify but because Mallory is not almost 2 ½, she will no longer have this protection this winter.  The thought is now that she is older, she could better fight a virus like RSV and does not need Synagis anymore.

So, again people ask, if getting a virus such as RSV or the Flu would most likely land us back in the hospital and could even put us there permanently, why don’t we lock ourselves in our home?  Why do we have Mallory in preschool?  Why don’t we make Madison strip off all of her clothes as soon as she gets home every day (you think I am kidding – there are many mothers that I talk to in many of the Cardiomyopathy and Transplant FaceBook groups that do just that)?

We ALL get Flu shots – and not Flu mist, the shot.  We actually make it a family date night.  We get them all together and go for dinner and ice cream afterwards.  There is so much controversy and opinion out there about flu shots – how they make you sicker, how they don’t work, etc.  All I know is it has worked for us and if you want any extended period of time with Mallory – it will be something you will do as well J  We wash our hands a lot – Sanitizer is a staple in my house.

And like I said, the rest we just ask for common sense - which is surprisingly hard sometimes.  You would think it would be common sense that someone who was recently sick would not come around a child with a heart condition – but that is not the case.  It is amazing to me how most people do not think about things like that.  But, again, until you are in this situation, many do not have to think about it. 

So no, we do not live in a bubble and Dustin and I have vowed to each other that we never will.  When Mallory receives her transplant, she will be on immunosuppressant medications for the rest of her life.  She will be more susceptible – but the way the transplant team has explained it to us is that she will not necessarily get sicker more often than any other child.  But, when she does get sick, what most kids would fight off in a couple days may take Mallory 2 weeks. 

Someone asked me if I was going to home school her to keep her out of all of the germs in school – We will not.  I have nothing against those that homeschool – it is an individual choice.  But, we want Mallory to have the same life as most children her age and as her sister!  She will go to school.  She will ride the bus.

I guess my opinion is simply this - when Mallory receives her gift, it is just that – an amazing gift.  There will be a balance of taking care of herself and her incredible gift with enjoying and living her life.   Living our life.  We want to do things that all families do and if anything, appreciate them more because we know all too well that you are not guaranteed every day.  And you are not guaranteed your health.  We do understand that Mallory will be “different” than other kids.  But, most of that can be controlled through education of those around her.  And what I am so thankful for is our transplant team at CHOA feel the same way.  When many centers say no to swimming in lakes and no roller coasters, CHOA has no problem with it – they encourage their kids to live a life with the highest quality possible.  Dr. Mahle (Mallory’s cardiologist) said he cannot wait to see pictures of Mallory wakeboarding on Lake Lanier one day!

So, back to the topic at hand – Yes, we probably think more about germs and sickness than others do.  But, not any more than I think everyone should!  So, my only ask – if you want to spend a lot of time with our little Mallory Kate – flu shots are a must!  And, just like everyone should, stay away when you are sick or recently sick.  Keep your kids home from school when they have a fever.  Report any sickness to your child’s school so that they can inform other parents.  Wash your hands and teach your children to do the same!

Love you all and thank you so much for the support,

Jess