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

The Waiting List

We get a lot of questions about the waiting list for a heart transplant – how long Mallory will wait, what number she is on the list, etc.

The unfortunate answer is we do not know.  But, I can help explain how it does work which may help.

UNOS (United Network for Organ Sharing) is the agency that hold the waiting list and oversees the transplant process for all organs.  For a heart specifically, there are 4 different statuses – 1A, 1B, 2 and  7.

1A:  Most of the time these kids are hospitalized waiting for their transplant.  They are on a ventilator or request certain IV medications to live.  Many are also on ECMO or some sort of device such as the Berlin Heart – for those of you who followed Mallory when she was an infant know she was originally listed as a 1A because of all of these factors.

1B:  These kids most likely are not in the hospital.  They maybe on IV medications at home (Mallory is not FYI) or the are what is referred to as “Failure to Thrive” meaning not growing as they should.  This is the reason Mallory is listed and qualifies as a 1B status.

2:  Any child that needs a transplant, but does not meet the criteria above.

7:  This is an inactive status could be because the child is too sick or too well to accept the heart.

When a heart becomes available, there are many things that come into play in addition to the status level:

Location – the donor heart must be within 4-6 hours of CHOA.  This is also why during this time, we cannot travel any more than 4 hours from CHOA so that we can also guarantee we could have Mallory to the hospital within the window.  If we HAD to travel, we would have to change her status to inactive.

 
Blood Type – Mallory is B positive, so she can accept a heart from either a B or a O donor.  One cool thing I read about infants (which again applied previously when Mallory was listed) is some can receive ANY blood types because their immune systems are not yet fully mature.

Size – Mallory can accept a heart from a donor that is between 18-30 pounds.

Time – The amount of time a child is on the waiting list also is a factor.  If a heart came available and Mallory was a perfect match as well as a child that had been listed for 6 months – it would first be offered to the other child.

There is a very complex matching process that provides UNOS with a list of potential matches when a heart becomes available.  Each transplant center is notified when one of their children are at the top of that list.  The transplant team would then decide if they felt that the heart was perfect enough for Mallory (and yes quite often hearts are denied by the team for many different reasons).  If and ONLY IF they agreed that the heart was good for Mallory would they call us.

So, long story short, we do not know how long we will wait.  I do know that many in our area children are waiting upwards of a year at a status 1B and that a couple years ago status 1A children at CHOA were only waiting 1-2 months and now many are waiting 4 months+.  There is a lot of data on the UNOS site – I do know that in our region, Mallory is the only child on the list (1A OR 1B in her age group 1-5yrs) that is a B blood type – all of the others are O.  I also know from that site that there are 6 – 1A in her age group and 4 - 1B.  Of the 1A, 2 have been waiting 1 – 3 months  and 4 have been waiting 3-6 months.  For 1B, 2 have been waiting less than 1 month (1 of those is Mallory J), 1 have been waiting 6 months – 1 year and the other 1-2 years.

What does this tell us – Absolutely NOTHING…  It is hard (especially for me) to not get tied up in the numbers.  What I focus on is there is a perfect heart for Mallory and she will get her gift when the time is right.  In the meantime, we focus on staying healthy enough to be at home, staying positive, praying and trying to keep as much normalcy as we can.

Thank you all so much for the support.  Once again I am amazed at the people in our lives and those that hardly know us.  It is humbling how much love people have for Mallory and our family.  So many have been asking what they can do.  Right now we are coping well but there will be a time when we will need support and we will let everyone know when that is.

Also – I know so many people have questions about this whole process and Mallory.  Please ask questions!  And when there are a lot of the same – it gives me good ideas for future blogs!

Love you all so much and God Bless,

Jess

Our Journey Begins

There is something about writing this post that has made me start and stop over and over the past couple days.

There is something permanent and real about finally inviting the world to be a part of our new journey that I have been struggling with what to say.

But, much like most of Mallory Kate's life, it is time we again ask for the prayers and support of all of those that got us this far... to help carry us through our new journey.

Until now, we have been trying to internalize our new reality within ourselves and with our family and closest friends. We have been trying to educate ourselves as much as we can and more than anything come to terms with the idea that Mallory will not be able to live with the heart that she has been battling since she was 10 days old.

I will step back a little bit for those that are reading this and wondering what went wrong.

Over the past few weeks, we have noticed that Mallory has been different. Her heart has always looked much worse in pictures than she has shown clinically and for the first time she has started to show signs on the outside of how hard she is working on the inside. She lost 2 pounds in two months - and being small already, this was a major concern - she was almost 2 1/2 years old and only weighed 20 pounds. Her appetite had decreased significantly and she was throwing up when she did eat a significant amount. All of these are signs that her heart failure was worsening.

At her last cardiology appointment on August 19th, we discussed our concerns with her doctor. He suggested that we do a procedure called a heart cath to see internally how things looked which would help guide us to our next steps. We had done this procedure last October so we would now have numbers to compare to.

We were admitted to the hospital on the night of September 1st so that we could have our procedure the morning of September 2nd. The results we got were not what we hoped for but were honestly what we were expecting. Because of the size of Mallory's heart, the pressure within both her left and right chambers had increased from the prior year. Her doctors were confident that her heart was not going to get better - in fact there are concerns that it could in fact get worse.

It has been a wonderful 2 years and Mallory has grown so much - we are so blessed. She is a vibrant, smart, beautiful, crazy little girl who has fought so hard and defied all odds. She is our miracle and she now requires the most amazing gift anyone can ever ask for - a heart transplant.

What was supposed to be a one night stay turned into a 3 night rollercoaster. We met with the entire transplant team - doctors, financial advisors, psychiatrists, pharmacists, child life specialists, infectious diseases, social workers... It was a whirlwind of information. I know we went through this before when Mallory was listed for a short period of time when she was an infant, but I did not remember any of it. The evaluation process to be considered for a heart transplant is very intense and we found that we were quickly shifting gears to get her listed as quickly as possible.

As of 8:00 AM on Friday September 5th, Mallory Kate was listed as a status 1B for a heart transplant. Something that our family had never spoken about since the day we took her off the list is now the only thing that will save her life.

We have been going through a lot of emotions over the past week - anger, acceptance, sadness, fear, excitement - and I would say we experience each one of those emotions daily and sometimes hourly. I do not know when that will stop, or if it ever will.

Much like our journey when she was an infant, we thought that starting a blog would be something that not only will help others who still pray for Mallory Kate everyday receive updates on how she and our family are coping, but will also be therapeutic for us as a family to get through the very long road we have ahead of us.

I know there are a lot of questions, and I promise I will educate all of you as much as I can. I could probably write for hours on everything we have learned and the support we are going to need to get through this, but I will as time goes on. We will also have a Facebook page for Mallory Kate to make it easier for those that do want to follow her journey as we wait for the most incredible gift we could ever ask for.

Please pray for Mallory Kate and our family as we begin this journey. We will need strength and support that I once again will never be able to thank any of you for.

Love Always

- Jess