Sunday, July 28, 2013


Like everything else we tend to Go Big or Go home… Dealing with our first bout of rejection is no different.  Rejection is never a good thing… however there are various grades of rejection  0 to 3r 0 being the best ZERO rejection and 3R being the worse case of rejection.  Unfortunately Katy’s rejection was graded as acute and severe. 

The basis for that is how badly the heart is damaged from the rejection and although we don’t know the definite answer to that we do know based on her biopsy and echo that  unfortunately damage was done to the heart we just don’t know to what extent and if over time it will be repairable.  

What we do know is that Katy is responding very well to the medicines and the team is very pleased with the direction she is headed.  She is easily could have been headed in a very different direction.  We have already seen an improvement in her heart function.  Which is fabulous news.

When Katy came in on Thursday and throughout the day she was very sick.  Her heart was not squeezing and not working well at all.  For the first time in this journey I really feared she may not survive night… the risk of cardiac arrest was very real. It felt more real than it ever did the entire time we were waiting for her heart transplant. 

Tomorrow Katy will have another Echo and hopefully we will wean her off of the Milrionone and switch her to some oral heart meds.  Some old favorites will be making a comeback at least for a little while, to give the heart some time to heal.  She will be going home on Prednisone so the Roid Rage should continue … lovely.

You know me I am already planning our great escape! Hoping for Tuesday!

Friday, July 26, 2013

Rejection Take 1

Admission Day 2- Katy is being treated for rejection. The kind of rejection she has at this time is unknown. There are two possibilities, Cellular and Humoral (antibody). 

What we do know is that Katy’s heart is extremely enlarged. This was evident both on x-ray and echo.  She has a gallop that is heard on physical exam that was VERY concerning to cardio.  The pressures in her Right ventricle are high and her heart is working very hard to squeeze in addition to that she has a leaky valve.

What is the plan?

As of now we are treating Katy for both forms of rejection until the results from her biopsy are back later today.  We won’t know until she is biopsied again in two weeks if irreversible damage has been done to her new heart.  She is being given high doses of steroids, started on IVIG treatment, Milrionone to support the heart and Lasix to help get any extra fluid off. 

How did this happen?  What caused Katy to reject her new heart?

It’s really not a how or a why…it’s more like a when would it happen.  Katy’s body is going to forever try to reject this heart.  Her body will always see it as foreign.  We try and trick her body into accepting this heart by giving her antirejection meds.  That are very carefully balanced and easily thrown off by a subtle weigh gain or an illness.  It is impossible to prevent rejection…it is part of the journey.

What is the risk to Katy?

The risks are very scary.  Right now Katy has a fragile heart that is not working well.  So the main risk and most scary risk is cardiac arrest.  That is why we are in the ICU. Additional risks are irreparable damage to her new heart.  This would be devastating, and unlikely given that we hopefully caught it early.

How is Katy feeling?

If it wasn’t for a high fever ( most likely unrelated to her rejection) we wouldn’t have known Katy was sick.  Currently she is extremely agitated and easily aggravated mostly attributed to the high doses of steroids and being stuck back in the hospital.  Who could blame her. She has a central line in her neck which is extremely uncomfortable… but other than that she is doing OK.

How are you and Mike?

Mike and I are fine.  We are back in survival mode.  Kind of can’t believe that this is happening.  Disappointed and discouraged, but haven’t had a whole lot of time to think about it.

Where is Patrick?

Patrick is going about his day at school and will be loved on by the grandparents! He was here with us the WHOLE day yesterday and was such a good kiddo!   Love that boy!

What can I do?  What do you need? 

You can pray for a quick recovery for Katy Girl! Right now we don’t need anything if that should change we will let you know.






Thursday, July 04, 2013

Baby You’re A Firework

Once again we had so much fun at the 4th of July festivities, up with our favorite NH cousins. 

Started the day with a small town Parade…. Auntie Nora pushed K & P in their decked out stroller. 

They even ended up on the front page of the local newspaper the next day.



Making there very own jump rope…very cool.



We ended the evening with fireworks in North Conway! We had such a great day!


Happy 4th Everyone!

Happy Birthday to my much OLDER cousin Beverly! I love you lady!

Wednesday, July 03, 2013

We Can Do It Next Time…

I know it’s a bit of a stretch for a blog title… especially a blog mostly about vacation.  But, we said it a lot this past week, and it is notable because doing it next time was NEVER an option for us for so long.  My way of life has always been go big or go home, I have passed that on to Mike and subsequently to Katy and Patrick.  More importantly in the past we ( Mike and I , because the kids were never the wiser) would squeeze in every memorable experience into whatever it was that we were doing.  Be it going to Storyland, Christmas morning with way too many toys wrapped just right displayed just so, or a trip to the park that was picture perfect every. single. time.


Part of that is who I am… for me the kids birthday will always be a BIG deal and celebrated in a BIG way.  But, a trip to the park, does not need to be an epic documented adventure the way it has been for the last 3 years.

Because for the last three year consciously or subconsciously I feared that “IT” whatever “IT” may be would have been our last…so we had to do it all and we had to do it all with a smile.  No grumpy kids, or parents for that matter… tired or hot no time for that…keep moving must get through the entire park ride every ride you think you might every want to ride…because what if we don’t get a chance to do it… kids scared shitless of Humpty Dumpty…Don’t care WE NEED THAT PICTURE! Every family posses with Humpty Dumpty at Story Land and if we don’t get it this visit we may never get it. 

So this year we didn’t get get that picture with Humpty Dumpty… but we did get this beauty…

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and it’s OK because we all agreed we would be the obligatory picture with Humpty next time. We rode the antique cars first!! Even though they are clearly at the end of the loop…and in the past we never would have bucked the system for sake of time but this time we were going back and fourth like a ping pong ball! Katy and Patrick were leading the way…so much more fun!

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Tea with Cinderella provided some much needed air conditioned relief.  I think we were at Story Land on the hottest day of the year.  So lucky that Cinderella just happened to be at her summer cottage the same week we were there.

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We took that new heart for a spin on a Roller Coaster!! Kate loved it so much we had to ride it twice. 

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We ended the day with ice cream!!  Any Day that ends with ice cream is a good day in their book.

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