617 Days

I have struggled to come back to this space… this space that is so sacred and holds so much of our family’s story, of our Katy Girls Story. I have tried so many times in the past 617 days to come and update you… that have loved and prayed for our family especially Katy. I couldn’t, but I missed it and I missed this outlet… I thought of starting a new blog, but that didn’t feel right either… our past forever chronicled here in this space, I need it tell our future.

I reached out to my friends and family and asked if maybe they could help me break the silence… bridge the gap. Within thirty minutes the post below was in my inbox. My dear friend Anna Mary Geist president of It's My Heart and such a bright light in this sometimes dark and cruel world, reflected on how we got to where we are now. It was heartwarming to read her words and feel her love. Love for me, my family and our community. Thank you for helping guide me on this part of my journey.


Fast forward 1 year, 8 months, and 8 days... that's 617 days... 617 days! Many of you know what those days have held for the Murphy family, but maybe some of you who have only visited the blog a few times and have let Katy's story slip to the back of your memory do not. Maybe those "some of you" were left wondering and still wonder: "How is Katy? Is she still playing soccer? Is she still dancing? I have to get back to the blog and see how everything turned out and see her sister and see how Patrick is doing - he must be so big by now... Oh, I will do it later, I am sure she is doing great, she was amazing - a Rockstar - and always overcame even the most challenging obstacles. I really should go back there though... later..." For Katy and her family, later never came. Katy never came home from the hospital that summer. She never got to the top of that last mountain that was slammed in front of her. It wasn't for a lack of fight, however. Katy gave it her all to the very end. She fought hard to get through the infection and rejection her new heart and tiny body were facing, but this challenge was so much bigger than she was. On August 16, 2014, Katy gained her angel wings and the Murphy family said a goodbye no family should ever have to say. The funeral was the most beautiful celebration of life you have ever seen, yet it was also the most heart-wrenching and terrible thing to watch a family go through. I will never forget the literal and physical heartbreak I felt as the cemetery service ended and a Mom who had ALWAYS stood by her daughter through thick and thin, hospital stay after hospital stay, and was never forced to leave her daughter, turned to her own mother and sobbed "I cannot leave her here, I cannot leave my Katy." I thought to myself "Oh nooo, that's right, moms never leave their sick children." A piece of everyone's heart fell to Katy's casket with those words. Her mom was just amazing, however, when she hugged her tight and sweetly answered "You are not leaving her. Katy is not here. She is well." Katy was finally healed, no more hospital visits, no more pokes, no more fear. As hard as it was to say goodbye to Katy and as hard as it is to live without her bright smile and loving spirit here on earth, she is no longer in physical pain. Yet, it still rains on the Murphys. I truly believe a piece of that rain is Katy missing them as much as they are missing her. This is not the end of the story, Katy's journey, or this blog by any means. While Katy may not be here on earth with us, may not have met her sister Riley Kate (here), or have seen Patrick mastering his skiing skills; and her family lives every day with the untamed grief monster that rears its head wherever and whenever it likes... where even breathing can trigger a memory that carries with it days of depression and sorrow, the Murphy family has found a way to live each day, to raise Riley and Patrick to know and love Katy more and more each moment, and to keep Katy's spirit alive! They have started a wonderful Foundation in Katy's name that will do amazing work to help families facing the unthinkable, as well as bring smiles and cheer to other kids like Katy. Kind of fitting that today is day 617. Being from Boston, we all are 617 strong... for our community... for Katy... and for the whole Murphy family.

June 30 2014

 

I am writing this from Katy’s ICU room… back in the little window seat/bed.  I have been here many times in the last six years… I have slept if you can call it that listening to the beeps and the hums of the ICU.  The ICU is usually our stop gap before home or the floor.  We thankfully never spend much time within these walls because Katy is always too well to be in the ICU.

This time is different… so different.  There are new noises coming from the ECMO machine that is keeping her alive… she is not the easy patient for this nurse… there are two nurses bedside at all times.  There is no Frozen or Annie blaring from the TV… no crafting or card games.  No it is sterile, quiet and horrible… no one can believe that it is Katy Murphy the firecracker who was tooling around the ICU halls in her go cart just hours before she was in cardiac arrest.  No one finds it harder to believe than me.

How did this happen?! I keep asking… no one knows.

What happened?

Monday was a normal day… well normal as far as days in the hospital go.  Katy was in the ICU to try a big gun Beta Blocker in hopes of bringing down her heart rate… after 24 hours and reaching maximum dose and no improvement.  It was decided that she would go back to the cath lab on Tuesday and they would see about finding a hot spot and ablating it and hopefully that would do the trick and no pace maker would be needed.

Katy was having her typical hospital 7pm snooze and Mike and I both thought she would be down for the night since she had an early day.  Change of shift happened… Night nurse was preparing 8pm meds and Mike was headed across the street to pick us up some dinner. Katy woke up to take her meds… said she had a belly ache, I thought she may have to poop.  Was putting her crocs on when I noticed her face/lips looked very purple/gray… looked at her a second later and her eyes were rolling back in her head… I screamed for the nurse (who thankfully was bedside with us) she looked at Katy and went to push the code button… I ran to the hallway and screamed help…within 30 seconds 30 people were in Katy’s tiny bed space.  They bagged her and immediately started chest compressions… within 3 minutes the decision was made that she needed ECMO… the team worked flawlessly, nurses, doctors, everyone knew their role and did it effortlessly. 

I of course was losing my mind… and begging God and anyone who would listen to save my girl. An amazing fellow ICU parent who was walking down the hall at the time picked me up and held me and told me it would be OK.  He was so kind… I will never forget the kindness he showed me in that moment.  Then my poor husband could hear my screams from the hallway and knew it was Katy… I can’t imagine what was going through his head as he walked through those double doors… I do know that the strength and courage he showed while watching the team work on his baby girl was remarkable.  He watched the entire time as they performed CPR for what seemed like hours.  Holding me and giving me updates as he thought I could handle them.  Pointing out the good things… only stepping away once she was on ECMO to call my parents.

It is nothing short of a miracle that Katy is alive today.  One of the nurses who was performing CPR (there were two and they switched off) came to see us last night and he said that he felt it was divine intervention in that room that night because it was bad.  Her heart just completely stopped and her lungs filled with blood. 

Because of pressure in her lungs once she was on ECMO she had to go to the cath lab immediately to relieve the pressure in her heart.  They did this by making a hole between the ventricles. Now we wait… we are approaching the 48 hour mark and Katy is doing as well as anyone can hope on ECMO… There appears to be no damage to her other organs, her lungs which took the hardest hit are already showing improvement.  Her CT scan did show a small brain bleed… nothing concerning at this time and certainty not unexpected.

The plan as of now is to begin warming Katy up overnight… and lift her sedation just enough to ask her to squeeze our hand… and move her feet in the morning.  This will also give them the opportunity to assess her heart rate as she warms. If the heart rate rises as she warms they will still have to resolve this problem which means a trip to the cath lab for ablation. She would probably go to the cath lab while still on ECMO to put as less stress as possible on her healing heart and lungs.  This procedure could result in the need for a pacemaker. We will just have to wait and see one day at a time.

I just want to see her beautiful blue eyes…and eventually that gorgeous smile that can light up a room.  Everyone is hopeful that Katy will bounce back and make a full recovery… I am trying to latch on to the positive thoughts of those around me.  I know that my girl is a fighter and she has THE BEST team possible working together to get her back to her sweet & sassy self. 

Thank you for your calls, texts, emails etc.  I am sorry if I haven’t responded…it’s just been too hard. Please know that they mean the world to Mike and I and hopefully one day Katy when she is old enough and I can share with her how she has touched the hearts of so many. 

 

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:

Lots of i-spy books and laps with daddy!

Lots of visits to Au Bon Puke Pan

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

Perfecting our Uno Skills… Katy is a card shark!

Lots of time for mindless knitting

and naps

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…

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…

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

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.

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.

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.

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.

    

Looking forward to next year!!