Wednesday, June 25, 2014

Ruling Things Out…

Yesterdays trip to the Cath lab gave us some answers. We learned that Katy’s Coronary arteries are good.  This is GREAT news…had they shown Coronary disease the answer would have been clear and we would be listing Katy for another heart transplant.

So after they checked her coronaries they went in search of another reason for her tachycardia (high heart rate). The EPS (cardiac electrophysiology study) which is the study of the electrical piece of the heart showed that Katy’s Sinus Node which is the hearts natural pace maker it is what controls the heart rate… is the source of the issue. 

We had hoped that there would be a “hot spot” in the heart that was causing the tachycardia, if that was the case they would have done an ablation to that spot and immediately fixing the fast heart rate. However, it was not the case and they looked high and low to find a spot other than the Sinus Node.

The current plan is to start Katy on a beta blocker to bring down her heart rate.  If that does not work they will go back in and ablate the Sinus Node… however that is not as easy as if it was a “hot spot” since there is a chance they could zap it too much and cause a too slow heart rate which would result in Katy needing to have a pace maker placed.  Basically it is a risky procedure which is why we hope we can treat with medication. 

It takes time to find the correct dosage of beta blockers and we are looking at at least another week inpatient if not longer. 

A day in the the life at Boston Children's Hospital:

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Lots of i-spy books and laps with daddy!

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Lots of visits to Au Bon Puke Pan

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Me… I’m still growing a baby… 23 weeks and getting bigger by the day  hour.2014-06-23 11.03.35

Perfecting our Uno Skills… Katy is a card shark!2014-06-23 18.48.02

Lots of time for mindless knitting2014-06-24 17.35.02

and naps

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Thanks for your love, prayers and kind words.  They mean the world to us.  Just another chapter in our journey.

This face is worth it all…

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Oh and bubba… he is having a blast! He spent most of the week with Justin, Tyna and all the boys and is now at Auntie Dars enjoying time with his cousins from Illinois…

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I miss him like crazy… but his smile makes my heart happy!

Saturday, June 21, 2014

Katy Girl Update

 

As most of you know Katy had her Cath on Thursday 6/19 and the results were pretty much what we expected… in that there was no real change.  The heart is still stiff the pressures are still way to high and her heart is working much to hard.  Her biopsy came back showing zero rejection and while normally I would be ecstatic with that I was really hoping that it would show rejection. Rejection, we can treat that and blame it for her high heart rate and stiff heart. The fact that the biopsy was clean means we need to run more tests and try to figure out if this heart is fixable or if we need to relist for transplant. 

Katy was started on Milrionone and Dopamine in the Cath lab and sent up to the Cardiac ICU with a central line placed in her neck.  ( needless to say she is uncomfortable and wants the line gone. however, it is the weekend and we are at the mercy of the PICC line team) Katy was given a blood transfusion and a few doses of IV Lasix… the plan for now is to dry her out and rest her heart (Milrionone) Early next week she will go back to the cath lab to check her coronary arteries and will also have a cardiac MRI unfortunately Katy is too sick to be under anesthesia for the length needed to perform both procedures so she will need to go under twice.

All of this information will be used to make an educated decision on the best move forward.  We have two options and it is a a 50/50  chance on which way this will go.

1. Is that the MRI shows that there is too much damage done to this heart from its repeated episodes of rejection and infection and it is unlikely it will recover and we need to relist.

2. The Cath shows that Katy has Transplant coronary artery disease (TCAD) and we will relist

or 3.

Everything looks OK…meaning the MRI shows minimal damage to the heart and Katy does not have TCAD and in that case we wait and see and give this precious heart more time to heal. Which more than likely means long term Milrione.

None of the options are ideal… obviously given the three choices I am hoping and praying for #3.

Tuesday, June 17, 2014

I Hope You Dance

 

Three years ago I was frantically calling local dance studios in March looking to find a studio that would allow Katy to join this late in the year.  I needed her to experience dance… Katy was newly listed for transplant and I had this bucket list of things I needed her to experience… or more likely I needed to experience.  I didn’t know what the future held… I just knew we had today.  The first studio I called basically laughed at me… they didn’t understand the need for the experience I didn’t care if she was in the recital… I just wanted to see my baby girl in a tutu. I called another studio…and it was just the studio for us.

I called Catch the Funk and was lucky enough to get through to Miss Sharon the studio owner.  I gave her the brief story of my girl… and with a crack in her voice as she spoke through the obvious lump in her throat as she was clearly moved by Katy’s story she said ABSOLUTELY!  Don’t worry about anything… I have ballet slippers at the studio… just come.  We’ll see if she likes it and go from there.

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The moment I met Sharon I knew she was an amazing person… She cried with me as we watched Katy girl smile a smile so big… it was then that I knew it was for Katy as much as it was for me.  Katy LOVED and continues to love dance class.  Miss Sharon, Miss Paula and Catch the Funk dance studio is such a safe fun place for Kate.  Over the years the love and generosity they have given our family is more than I can ever repay.  The warm smile that is always awaiting Katy is such a comfort for all of us. 

Katy has been sick a lot of this year… and has had to miss a lot of dance.  It’s always a disappointment when she is too sick or in the hospital on dance days.  But with her hard work and the dedication of Miss Sharon she learned the dance for the recital and had her moment to shine.

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Katy LOVES being on stage…she just shines.  Her smile is contagious and for that three minutes I am elated.  The smile is stuck on my face for all of recital day.  I cry… I laugh and most of all I am thankful that Katy has another opportunity to do what she loves.

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Looking forward to next year!!

Tuesday, June 03, 2014

Our life in Pictures-May 2014

Living this roller coaster ride we call life… I really need to blog in real time.  I had this blog post brewing for a couple days… and life was happening, I had pictures that I needed to edit…and thoughts I wanted to gather. I wanted this to showcase a glimpse of our life not in crisis. 

Unfortunately, life keeps happening and blog posts get pushed aside…and now I have to preface this look at our life in pictures with an update on Katy.

It’s been about a month since Katy was diagnosed  with her latest bout of rejection…and the update today was not good.  Katy’s echo today once again showed NO change in her heart function.  Her heart is very stiff, her heart rate is dangerously high, and there is some evidence that her kidney function is not where it should be ( which could be a result of too much lasix, but could be a sign of heart failure) Currently, Kate is at her max for management via her current meds.  In order to make some med changes she needs to have another cath/biopsy to check her pressures and her pulmonary function.  Once we have that info the team can make some med changes in hopes of supporting this heart and getting it back to a happy place. Obviously, this is not the direction we wanted to head in… we all hoped to see improvement in her function by now. We are in a wait and see hold right now until we can get her in for a cath.

June is a crazy busy month for us and Katy has a fun filled calendar of things she doesn’t want to miss.  So we will be struggling with that balance of her health and quality of life… it is the hardest piece for me. I want so badly for Katy to just have a normal life… to not have to spend so many of her days in the hospital.  I totally expected life to be easier post transplant… sadly it has not.

We still try and take it one day at a time and make the most of all our days when we are not stuck in the hospital.

We pack up and head the beach!

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We spend time with cousins…

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I expect that June will be a trying month… I also know that we will do all we can to take advantage of our time together!