My Head Is Spinning

I am currently writing this post @ 10:30 pm on Day 4 of our hospital stay… Day 3 got lost in the shuffle.  I will try and catch you up… Hold on…it’s a bumpy ride.

Day 3 Thurs. 10/28/11

8 am rounds… it is decided to start Katy on Zithromax just to be sure.

9 am Started the morning with a trip to x-ray to see how Katy’s lungs are looking.

IV went bad after only 2 days UGGGGHHHHHHHHHAAAAAHAHAHAH (do you hear my frustration)?

Fluid restriction increased Katy can now only have 400mil. by mouth.  For a child who can chug 200 mil in a couple sips and LOVES her Salt this is a really difficult task… lots and lots of distraction. 

11 am Patrick is at school…Mike comes up to take over I am a bit fried… go get coffee.

Wait 3+ hours for IV team to come and place a new IV.

Nana & George come up to visit… Bring a HUGE castle balloon that made Katy’s day.

It’s decided Nana will keep Patrick and I will go home to sleep once Katy is settled.

X ray is back and shows a bit of improvement.  Katy looks better.  Talk of weekend discharge?! ?! WHAT!!!!

IV Lasix is stopped… ( don’t want to dry her out too much)

6pm Dr. Blume comes to see Katy is thrilled with how well Katy looks… agrees with a possible discharge on Sunday?! !!

Katy is a bit sad and missing Patrick…so we open a Special Delivery from one of my friends and it is filled to the brim… Katy LOVED the distraction and all the goodies!

I decide I can’t leave…Mike and I both stay.  I did sleep better knowing Mike was on duty.

A little chest PT from our Awesome Night Nurse

Day 4

Dr. Blume is in to see us bright and early.  She is so pleased with how well Katy is looking.  Says… “ Looks like you will be Trick or Treating at home” Mike and I are both completely shocked… but we’ll take it. 

then…she takes a listen… a long listen…and says maybe not.

(see what I mean by the roller coaster this is all  in a 5 minute time span)

Still sounds way too squeaky… really thinks we should try the Milinrone to see if it works, and if Katy can tolerate.  We agree… and want to do what is best.  Dr. Blume is off to see if there is room for Katy in the ICU.

There is a bed and Katy will be moved around 4pm… in the meantime we have a revolving door of visitors WE love visitors.

Katy’s preschool teachers Miss Jordan and Miss Gentry(who is also my friend) came to visit and brought lots of goodies for Miss Katy.  Cards from all her friends… crafts… books so much fun stuff!!  They also delivered the most ADORABLE Tinkerbelle Build A Bear from her other teacher Ms. Roberto who couldn’t visit.  Jen also brought lots of goodies from the Stoneham Fire Department and a card signed by all the firemen…lucky lady!

Then Uncle Danny, Auntie Kim and Dawn came up with a HUGE Minnie Mouse and spent lots of time playing with Katy in the playroom!!!

The just before we were headed to the ICU… Uncle Johnny Boy came up to see Miss Kate…he always brings a smile to Katy’s face…and even played a game of Candy Land.

Then as we were getting settled….Papa arrived!!! Katy loves her Papa!

Unfortunately Patrick has a cold and couldn’t come up to visit.  This was very hard on both Katy & Mama

The Milrinone was started at 5:50 a very low does to see how she tolerates it… as long as she is handling it well (which as of now 11:15pm she is) her dose will go up around midnight and her status on the transplant will go from a 1B to a 1A which will make her 4 times more likely to get a heart.

Patrick is at Papa’s nursing his cold.  I hope my little man is better soon!

Oh, yeah and Boston is getting SLAMED with SNOW 6-8 inches in OCTOBER?!?! I guess it’s a good thing we will be Trick or Treating at the hospital.

Thanks for all your love, prayers and kind words.

Much love!

All the Murphy’s

 

October Admission Day 2 10-27-2011

written at 11:30 pm
We had a pretty relaxing day…lots of coloring, movies and playing Hi Ho Cherry Ho.  Around 5 pm we learned that the culture came back negative no Respiratory Infection.  Good News?!  I don’t know.  Since that means without a doubt all the fluid and pulling, and rapid breathing and tiredness are due to Katy’s heart failure. 
The plan is to continue with IV Lasix (diuretic) We are on strict fluid intake. (what goes in…must come out) As of right now the plan in to continue on this course of treatment and see if we can get the fluid off without the use of Milrinone. 
Papa, Nana Tracy and Patrick came up to visit and brought lots of goodies for Miss Kate.
Patrick and Daddy headed home… saying goodbye was hard. 
Thank you again for all your prayers and kind words and to Deb who has started the $1 Campaign on our family’s behalf.  You can read more about that here: $1 One Single Dollar

Once Upon A Time…
That’s how a fairy tale starts. Once upon a time a girl met a boy and fell in love, once upon a time a young man came to the big city with a dream, once upon a time…and the story ends happily ever after. Today isn’t happily ever after. It’s the beginning, yet again, of Once Upon A Time.
Katy was admitted today to Children's Hospital. She is in Congestive Heart Failure and needs a heart transplant. Katy is 4 years old.
If you haven’t had a chance to read Katy’s mom’s blog post today, read it here: http://murphy216.blogspot.com/2011/10/katy-girl-update.html
http://murphy216.blogspot.com/2011/10/october-2011-admission-day-1-10-26-2011.html
Excerpt: Katy’s chest x-ray showed that she has some fluid in her lungs i.e. she is in Congestive Heart Failure. Basically this was completely unexpected…but at the same time completely expected.
I saw Aimee last week. Katy’s mom. And she’s amazing. Brave. Strong. Fragile. Fighting. Human.
On facebook, on the news, we read stories that touch us, we care. They stay with us, then life moves along. With Amiee the story is everyday. Its not just about Katy’s heart, but also a story about Mike, Patrick, their family dynamic and what a toll any illness takes on a family. I thought I knew some of what they were going through then, mid conversation, Aimee shocked me.
“I wish I could buy a cup of coffee”
I started then looked left and right to gesture for the waitress. “I’m sure they still have coffee” I said, still looking around. Amiee made a noise and I looked at her. She was staring at the table... I saw a huge tear. “I don’t mean now” she whispered. “I mean, I wish I could, you know, BUY a cup of coffee.”
And I still didn’t get it.
Finally Amiee looked me in the face.
And embarrassed yet honest she told me their situation. Ending with “And I don’t know what I can get for it, but if I can get up the courage to sell it, we are going to.” Twisting her wedding ring on her finger.
“Deb” she said “We are barely paying the bills. Between rent, utilities, parking, gas, car repairs, I don’t think we can do it this month. Basically, we’ve been using the fund to get Katy to the hospital, for the parking, for gas, for one of our meals there. She needs new pajamas with snaps for the IV cords, Patrick is growing. I can’t work because I need to be with her, Mike is taking care of the house, of Patrick. He can’t work consistently. We are waitlisted for housing aid and we are just about at the end of everything. And now Katy is going in. And I don’t know how we are going to make it.”
And I had nothing to say to her. I had no words to comfort her, no ideas. Because honestly, I can't imagine for a minute what she is going through.
In my professional life I’ve planned huge events. In my personal life, I’ve rallied. I’ve pep talked. I have motivation galore. “Write to Ellen!” “Start a campaign” but I am stumped. Because frankly it's too big for me. I dont have a job to give, I dont have the means to provide child care, the resources to drive a meal into Boston. I have 3 small children of my own and a husband constantly working.
BUT! I have a dollar.
And a stamp.
And an idea.
I thought “If I could start a facebook viral request.... If everyone everywhere could send just a $1. If everyone only knew that this tiny four year old is in Congestive Heart Failure and her parents have hit bottom, wouldn’t they help?”
Would it work?
Could it work?
$1?
From every friend of every friend?
I’m not asking anyone to donate more. I'm not asking anyone to give give give. But yes, I'm flat out asking for money. Because it's the only thing I know they can use, and it's the only thing today that I can ask for that I think could be given. And its the only thing that Amiee doesn't have the courage to do on her own. If she can face Katy's doctors, I can face all of you.
$1.
If you can, if you would,please post to your facebook or share where possible my request.
Please send one single dollar to:
Be A Rock For Katy
The Savings Bank
357 Main Street
Wakefield, MA 01880
Thank you.
(and if you can't, your prayers are far more valuable. Please don't let this request turn you away from this support page)
INSTRUCTIONS BY PAYPAL | Existing Account Holders
You will need a Paypal account
Go to: www.Paypal.com
Log In with your username & password
Select tab: Send Money
Into the text field To(Email or Mobile Phone), type in: bearock4katy@gmail.com
Into the text field Amount type in: the dollar amount of your gift.
Ignore the drop down text field: USD - U.S. Dollars.
Underneath the text boxes Amount and USD - U.S. Dollars you will see two tabs, Purchase and Personal. Select: Personal
You will see the words: This money is being sent as a: with (5) choices.
Select: GIFT
Then hit: Continue
You will be directed to a Review your payment and send page.
BUT WAIT!!! (optional)
BEFORE you hit "Send Money" scroll down to the section that says: Email to recipient
In the Subject Line, please overwrite the prefilled You've got Money text and enter the words: Katy Rocks
In the Message field, please write in any message you'd like the family to know and Your First and Last name (Email optional)

October Admission Day 2 10-27-11

written @ 3pm

Katy had a good evening.  ( Once we got that screaming  infant out of our room)

Late night was a bit rough her…around 1AM her 02 stats kept dropping…at times in the low 80’s.  She had been sitting right around 96 and to be honest I wasn’t a fan my heart baby is always in the 98-100 range.  Clearly just another reminder that we are in a whole new ball game.

Doctors came and listened and an EKG was ordered and given at 2AM…UGGGGGGGGHHHHH.  They also gave her, her first ever neb treatment… the nurse was shocked that with her complex medical condition she has never had a neb.  As I have said in the past…she is writing the book.  Which up until this point has been great…since she has been much healthier than kids with her diagnosis… now it is just scary because we have no idea how this is going to play out.

Finally we both got some sleep…

During rounds there was some speculation that Katy could be dealing with a respiratory infection.  Which could be the cause for the extra fluid on board.  No one really thought that was the issue… but we need to check everything…so while we waited on the results of that culture we were placed on precautions as a precaution and earned ourselves the Pent House. (Huge Private room)

Daddy came up and Katy & I both took about a 2 hour nap.

 

October 2011 Admission Day 1 10-26-2011

WOW… It’s amazing I can catch my breath… at the rate things change around here.

I am writing this from the oh so comfortable  crappy bedside pullout bed.  Watching Katy’s monitor as she sleeps oh so comfortably.  She is really so amazing.  Amazing I have no other way to describe just how wonderful and strong and awesome she is.  I could not be more proud of her.  Every. single. day is a blessing.  Even the days we are stuck in Children’s!

If you have been following the blog… you may wonder what the heck happened or changed that landed us in good old CHB!

Well, really nothing changed… we all just had the night to reflect and as I was up pondering Kate’s fate and what the best course of action would be…so was Dr. Blume… As I was paging Dr. Blume to say I think we should come in sooner or later…she was looking up my number to say that Halloween is over rated and we really should come in sooner then later.  It has only taken us a year to get to this point when we are all on the same page at roughly the same time.  We all have a common goal we want what is best for Katy. 

So at 1pm…Blume told us to head to the ER to be admitted.   We packed, we called,we made sure Patrick was all set to set to stay with Papa & Nana Tracy and we were off….

4 hours later we were settled in a room.

Katy’s Potassium levels had dramatically increased to normal range.  No known reason… this makes treating her Congestive Heart Failure….since to treat that we need to up her diuretics which we were not able to do with the low potassium.  This is all great news and I can only speculate that it had something to do with the prayers and kind words that flooded our family today. 

It was so amazing  to know you were all “with” us today and loving our girl from all over the world.

Currently Katy is getting an IV dose of Lasix and is sleeping soundly…no coughing… stats look great!  

Not sure where we will go from here… will have to wait for rounds tomorrow!!

Katy's Facebook Page reached over 1000 fans!! WOOHOO!!! I can’t wait to tell her.  She loves to see her name in print so I think she will think it is cool to see her name & pictures flashed all over the computer. 

Katy Girl Update

Today we had clinic with Katy.  As we left Children’s Hospital I had a much different blog entry written in my head then the one I am about to write.  We left Children’s once again with the hope that we had cheated fate and would not be admitted long term until after Christmas.

Dr. Blume was a bit concerned that Katy might have a bit of fluid in her lungs due to some rapid breathing and bit of pulling, and ordered a chest xray to be sure.  Nothing a little increase of her diuretics couldn’t handle if need be. 

I left with a spring in my step and hope in my heart that once again my little miracle was proving  just how miraculous her special heart is.

Then my cell phone rang as I was sitting in traffic on the way home …and once again my  theory of “We make plans,and God laughs” ( OK not my quote…but a current favorite) was proved once again. 

Katy’s chest x-ray showed that she has some fluid in her lungs i.e.she is in Congestive Heart Failure.  Basically this was completely unexpected…but at the same time completely expected.  Meaning we know that this is how it goes, we know that it is miraculous that  this is her first bout with it.  Clearly up until this point she has been well regulated with an army of meds that are were doing exactly as they should.

Katy’s labs also showed that her potassium levels are dangerously low.  This is due to her current doses of diuretics.  Which unfortunately makes the plan to increase her dosage not an option.  So what do we do?? 

Well it was decided that Katy is stable… and we have the next few days to pump up her potassium levels through orange juice and bananas…. we are going in on Friday for labs and are planning a short term admission on Tuesday… to dry her out and give her heart a chance to rest (via IV meds.)

Any prayers or good thoughts you can offer our family (especially Miss Kate) are much appreciated.  I hope we can make it through the week… but, fully expected to trick or treat on 8 East!!

An Interview With Katy & Patrick

I had seen this idea all over the place, and I knew I wanted to do it once the  kids started school.  I think it will be such a fun thing for them and us to look back at.

I lucked out and found the perfect template at http://blog.bitsofeverything.com/2011/07/interview.html

No need to reinvent the wheel.

Catch Up! Catch All

What is normal? I keep asking that question. I have no idea… I don’t know what to expect as normal.  Normal for us seems to change in a split second.  Good or bad we never know what to expect.  I will say that my recovery time is much quicker and I have learned to roll with the punches.  What a week we have had… I almost am afraid to share since it seems so unbelievable.

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Katy & Patrick are both LOVING preschool.  It makes me so happy to hear Katy go on and on about her day, her teachers  friends, what they did and how she  can’t wait to go back. 

Patrick is still having a  semi rough drop off… but it lasts all of 2 seconds.  Other than that he loves it to. I think he has already stolen a few of his teachers hearts…(how could he not)

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We all got our flu shots and then we all promptly (minus Mike…he is an OX and thankfully never catches the nastiness) were down for the count with some sort of bug…fevers/sore throat/ runny nose…a bunch  of hot messes.  Just as I was getting over that on Thursday… Patrick dropped the heaviest pot we own on his toe.  We thought for sure it was broken and headed to the pedi office .  Thankfully much to everyone's surprise it was not broken.

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Friday we kept Patrick home from school (doctor’s recommendation) and spent the day puttering around the house… since it was in need of some TLC after the week I spent on the couch.  I was working on my all time favorite chore of swapping the summer/winter wardrobes upstairs between the two bedrooms…. When it happened… I fell… an uncontrollable UGLY fall… I mean I hit every inch of my body and was a mess… I thought for sure I had shattered my knee cap.

At this time it is 2:20 and we need to pick Katy up at 2:30 and Mike is trying to figure out ho w to calm me down enough to get me down the 2 flights of stairs.  Since there was no doubt… I needed to go to the ER… again never a dull moment.

Miraculously I am able to hobble my way out to the van as I watch my knee triple in size. 

I am happy  to say that NOTHING is broken but I did earn myself a knee immobilizer,  a set of crutches and a bunch of pain meds…and I also landed myself back on the couch for the weekend. 

Right now it is just…wait and see and will decide on Monday what the plan is with Ortho.

 

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Slowly we are gathering things for our stay at Children’s.  Many of you have asked what we need and what you can do.  I am in the process of making a list of our needs and will share it with you soon.

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Happy Sunday!

Patrick’s First day of Nursery School

Well today was Patrick’s first day of school at Little Treasures School.  Little Treasures is an adorable little preschool with an amazing, kind and generous staff.

I have worked in many preschools/daycares and let  me tell you… the things I witnessed scared the crap out of me. 

It was never our plan that our kids would go to daycare. It is just my personal opinion that kids should be home with their mama’s (or daddy’s) for their baby/toddler years.  I know that it is not always an option.  I do think that preschool is AWESOME for four year olds. 

So as excited as I was for my girl to head off to preschool… I was less then excited for my little man to go.

For Katy it was more optional and something she really, REALLY wanted to do.  So I was very happy that we were able to offer her that opportunity. 

For Patrick it was more of a necessity… Patrick living in the hospital with us was not really an option and I hated the idea of him being passed from person to person.  So when the generous offer was presented to us for childcare 3 days a week at a local preschool, that I happened to know the assistant director of ( I had her baby boy in Preschool…talk about full circle)  It really seemed like an answer to our prayers. 

Consistency for Patrick is going to be huge… and once I met the owner/director I knew it was going to be a great place for our little man.  To play,be loved and engaged while Mike and I are at the hospital with K.

That is not to say that I didn’t cry at drop off… it didn’t help that he did to.  Granted he stopped before we were to the car and his sweet teacher called to let us know all was well. 

It is nice knowing that he will be loved, and engaged and having fun. 

October 1st.

Today is October first.  It feels like fall… I LOVE FALL.  I am emotionally drained and I know it is only going to get worse as this month goes on.

I am torn between filling our days and enjoying every.single. moment.  because I know from that the next time I turn the page on our calendar our  life as we know it is over.  Good or bad… it will be changed. 

No matter what this admission brings for Katy… it is a HUGE change.

Katy will miss Preschool, Dance, play dates, trips to Target, snuggling in mommy & daddy’s bed, spending time with family, her brother.

Patrick will spend 3 days a week in daycare ( he did a 1/2 day on Friday and LOVED It) The rest of the time he will be passed back and fourth to family and friends.  He will spend more time then he should at a hospital visiting his sister.  He will most likely miss out on a lot of things himself. 

Mike & I will muddle through with the support of our family, friends and perfect strangers… and try to keep our home and life outside of children’s afloat… never mind our marriage.  Did you know that couples with sick children our 85 % more likely to divorce than those with out.  SCARY odds… that I know we will beat.

Then of course is the reason for this admission.  I see 3 possible outcomes.

1. We are admitted bumped up to a 1A status and Katy gets her heart within 6 weeks, and we embark on the next part of this journey.

2. The plan works and Katy starts to gain weight and we continue to wait in the hospital or home.  Where we wait at this point is unknown.  We won’t know until we know if this plan works.

3.  The plan fails… Katy does not gain weight and we turned her world upside down for 6 weeks for NOTHING.  We go home and continue to wait.

Regardless of what way it goes… it is happening.  And, I need to find a way to cope.