Saturday, December 15, 2012

Shannon Door Snoopy Party

At the last minute we thought it would be fun and a much needed day away to spend with our family up at the Shannon Door… it’s a long ride especially when you know you have to drive it back the same day.   Mike and I have done the round trip in one day, but never with the kids. It was OK… I wouldn’t love to do it…but it was well worth it…given the fantastic time that was had by all.  I am not a really great keeper of the secret so Auntie Nora knew we were coming…last time we tried to surprise and told Auntie Kathleen she blew our cover too…. I guess us Irish ladies can’t keep a secret.

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Katy & Patrick just adore their big cousins.  It’s a really wonderful thing to see the big ones interact and take care of the littles…and lets me honest it’s a nice break for Mike and I to just have a break…and some adult talk. 

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Santa even sent a helper to drop by and say hello and he brought lots of Snoopy gifts with him. 

It was worth the drive… to get to spend a few hours with some of our favorites.  So very lucky to have them in our life.

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and a little video:

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Friday, December 14, 2012

Newtown Tragedy

It has been a long time since I have updated this blog and I have lots of things to do and pictures to share.  But, I just haven't been able to find the words. There has been nothing worthy of more than a Facebook photo or an Instagram picture.

Today, I am not sure I have words… but I have feelings. I am overwhelmed with emotions as I try to comprehend and make sense of a completely incomprehensible  and senseless act.

Because I am friendly with a lot of families with medically complex children and specifically children with severe heart defects, I am more aware of and see first hand too many babies and young children taken from this earth much too soon.  Especially in this past year.  It seems the heart community has experienced a lot of loss and the loss of a child never gets easier and I will never ever find the words to say to a mama that has lost her baby. 

The events of today and the lives of the twenty young children lost today feel different to me. These children died because of a senseless act of violence.

The tragedy that took place in Newtown, Connecticut has made me feel a wave of emotions.  Emotions as a teacher, as a parent of a two young children, and also as a parent that has spent the last 3 years waiting for their daughter to receive a donor heart.

We have always said that we are not praying for something tragic to happen to a child, but that if tragedy were to strike,  we hope and pray that in a moment of such horrific sadness the parents will be able to make the decision to give the gift of life through organ donation.

As I was watching the news unfold this morning and I was watching in horror… I was not thinking about potential donors.  I was thankful to be hearing Katy & Patrick playing upstairs…putting on a puppet show. I was praying for those parents that were about to get the worst news of their life and wondering how they would move on from this day.  I was thinking about all the Christmas presents they probably had wrapped and ready for Christmas morning… did they have brothers and sisters.  How would they ever move on as a family. School should be a safe place…how many children are going to be afraid to go back to school on Monday.  How many parents are going to decide that homeschool is best.  What can we do to protect our children? 

Then it was said… Mike said: “You know Amiee if we get the call this weekend.  We’ll know where it came from.” Silence. What… I was shocked at the possibility and even more shocked that I didn’t think of it myself.  Then I had to wrestle with the whole idea of how do we explain to Katy that the only reason she has a new heart is because of this horrific event.

I am praying for the parents tonight as they cry themselves to sleep.

I found this on FB and wanted to share:

We pray for children
who sneak popsicles before supper,
who erase holes in math workbooks,
who can never find their shoes.
And we pray, for those
who stare at photographers from behind barbed wire,
who can't bound down the street in a new pair of sneakers,
who never "counted potatoes,

who are born in places where we wouldn't be caught dead,
who never go to the circus,
who live in an X-rated world.
We pray for children
who bring us sticky kisses and fistfuls of dandelions,
Who sleep with the cat and bury goldfish,
Who hug us in a hurry and forget their lunch money,
Who squeeze toothpaste all over the sink,


Who slurp their soup.
And we pray for those
who never get dessert,
who have no safe blanket to drag behind them,
who watch their parents watch them die,
who can't find any bread to steal,
who don't have any rooms to clean up,
whose pictures aren't on anybody's dresser,
whose monsters are real.


We pray for children
who spend all their allowance before Tuesday,
who throw tantrums in the grocery store and pick at their food,
who like ghost stories,
who shove dirty clothes under the bed,
and never rinse out the tub,
who get visits from the tooth fairy,
who don't like to be kissed in front of the carpool,
who squirm in church or temple and scream in the phone,
whose tears we sometimes laugh at
and whose smiles can make us cry.


And we pray for those
whose nightmares come in the daytime,
who will eat anything,
who have never seen a dentist,
who aren't spoiled by anybody,
who go to bed hungry and cry themselves to sleep,
who live and move, but have no being.
We pray for children
who want to be carried
and for those who must,
for those we never give up on
and for those who don't get a second chance.
For those we smother...
and for those who will grab the hand of anybody
kind enough to offer it.
We pray for children. Amen

 

Sunday, December 02, 2012

September… Really

I can’t believe that my last blog post was from September!  This happens occasionally and I never know how to deal with it.  Since I like to use this to keep you updated.  I also use this blog for us…as a way to document our life, remember all the little things. 

So although part of me wants to do a generally recap… I am going back and doing it post by post,

So be sure to scroll back to see pictures and life from October and November.  I will say they have been pretty uneventful and uneventful months are our favorites.

Thursday, November 22, 2012

November Blessings

Everyday we should remember our blessings… but sometimes it is easy to forget.  In November a lot of of us try to make it a point to post what we are thankful for daily on Facebook.  I think it’s a great idea… and I am seriously considering starting a gratitude journal in the new year.  I do think that even on my hardest days I can find something to be thankful for.

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Days of Gratitude 2012

Day 1 Today I am thankful that Katy's line was just clogged and didn't need to be replaced.

Day 2: Thankful for friends that know just what to say and a husband who is always there to pick me up and get me through the rough days!!

Day 3: I am so thankful to be a mommy! For so many years I feared I would never have the opportunity. Now I am blessed with two amazing babies. A boy & a girl perfection!

Day 4: I am thankful for my handy husband. There is nothing he can't do! My scrap room has new lights and an awesome peg board to help me organize!! It's the little things!

Day 5: Today I am thankful for Boston Children's Hospital! Thankful I live so close to the #1 hospital in the country!

Day 6: Today I am thankful for kind and generous friends!!

Day 7: (a little late) I am thankful for a warm home!

Day 8: Today I am thankful for pain relief! After 22 days of a pretty much constant headache... I am headache free and I feel like I can function.

Day 9: Today I am thankful to be planning Katy's 5th Birthday Party!! She is such a miracle...each and everyday and every child's birthday is special...but when you wonder each year if your child will make it to their next birthday... its HUGE!

Day 10: Today I am thankful for a fun filled day of girl talk, craftiness with my 2nd mama Kris love you and am so thankful you are a part of our life! XO

Day 11: Today I am thankful for my dad & Tracy for always being there... and doing whatever they can to help. It's nice to know that we can always depend on them. They are doting grandparents, and Katy & Patrick ADORE them.

Day 12: Today I am thankful to get the chance to talk to a friend... I have never met, but I feel like I have known forever. XO — with Tammy .

Day 13... Today I am thankful for sleep aids. I was reluctant to take anything for so long and now I know it is the only way I get any rest... I hope someday I won't need them but for now I am thankful I have them.

Day 14: Today I am thankful for my sensitive, funny, kind, handsome boy! I can't imagine my life or our family without Patrick! He keeps us laughing and always knows when his mama needs a hug! I love you sweet boy! XO

Day 15: Today I am thankful for my girl. She is sweet & sassy...has a smile that will melt your heart and strength like no other. She is funny, and smart. She is beautiful inside and out and I am so thankful to be her mommy.

Day 16: Today I am thankful for my husband. He does it all even on days when neither of us wants to do anything. He is the kindest, sweetest most caring man I have ever known. He is funny and intelligent and brings out the best in me. I am so thankful he is my husband of 10 plus years and the most amazing daddy to K & P. We are all very lucky

Day 17: Today I am thankful for Laughter... sometimes you just need a good dose of funny! Tonight on the way how Cole and I were saying yo mama jokes and it was funny to just laugh out loud with Cole, Dad and Tracy.

Day 18: Today I am thankful for quiet Mornings... everyone is still sleeping. I am cuddled up under a quilt sipping coffee and once I get off of FB I have pictures to upload.

Day 19: Today I am thankful for the generous gift from my dad & Tracy A reliable ridiculously awesome new (to us) Honda odyssey ... yes I know a minivan but for a minivan it is pretty kickass! (Actually, I love minivans and I can't imagine not having one... there I said it!)

Day 20: I am thankful for the town we live in. It is a great community that has embraced our family. We have met some amazing people... we love Kate's school...and dance studio! Great parks and of course the lake!

Day 21: I am thankful for Patrick's Preschool. It's such a great little school, with kindest teachers and staff. They have been such a blessing during this trying time...and knowing Patrick has a consistent, fun place to go.

Day 22: Today I am thankful for Boston Children's Hospital. There is not a day that goes by that I don't think of that hospital and the amazing team of doctors and nurses who have been such a huge part of our life for over 5 years. I am so thankful so close to the #1 Children's Hospital. I hate to name names because I risk missing someone but some need to be said... Dr. Marx who cared for Katy long before she was born and for the first three years of her life and is still an important part of her team. Dr. Blume and the amazing transplant team for guiding us and trusting us and allowing wait this wait at home. Our most beloved child life specialist Lauren the nursing staff on East 8 East and 8 South.

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Kathryn continues to be responding to the Milrinone fantastically well and we couldn’t be happier.  It is still so hard to believe that we have been waiting so long 857 DAYS at last count…it’s even more unbelievable that we get to wait at home.  I can’t imagine it any other way.  I seriously don’t know how we could survive a long term admission… although Katy is so very sick… she is living a pretty normal childhood and that is a huge gift.  To be able to give her the best of both worlds… the ability to keep her status so high on the list and doing just about anything an average almost FIVE year old would do is amazing.  It hasn’t always been easy… but we have a great team, and Mike is pretty amazing caretaker of the line and would make a great picc nurse/pharmacist so it has worked.  I know that it may not be the best choice for every family, but it was the best for our family.  I can say that without a doubt when I think back on all Katy has done since July, all we have done as a family, all the memories we have made. It was one of if not the best decision we have ever made regarding Katy’s medical care (other than the choice to continue our pregnancy which wasn’t really a choice…there was never a doubt.  I am still offended I was asked. ( Yes, I know it is there job…moving on)

Wednesday, October 31, 2012

October Musings

‎85 Days as a 1A & 710 days as a 1B for a grand total of 795 days on the transplant list! Life has stood still for us... it seems like everyone has moved on...we are yesterdays news and we are just stuck. Just as hard on day 795 as it was on day 1.

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We celebrated Papa’s Birthday!! The kids had fun making him a very special Build A Bear.

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Sunday, September 23, 2012

Sunday Fun Day

 

Welcome Fall… I love Fall.  Fall is my New Year (no I am not Jewish…just must have a teacher schedule forever embedded in my brain)

Fall means new routines, new shoes, new backpacks…oh and how can I forget new school supplies!! Ahhh how I love a fresh new pack of post it notes and new pens… current favorite: Paper Mates Ink Joy. I always seem to miss Spring cleaning so come Fall our house is more than ready for a reset… time to put away all the half packed beach bags… and light some yummy fall candles. 

Fall also means apple picking and I can tell you I am never happier to be a resident of New England than I am in September.  Apple picking is my favorite activity.  I love picking and tasting apples… I love pictures from the apple orchards and apple cider donuts!

We went Apple Picking at Honey Pot Hill  Orchards in Stow MA this weekend with a bunch of families from “ It’s My Heart”

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Saturday, September 22, 2012

Long Time No Blog

You know I am over due for a blog update when my husband reminds me I should really update the blog.

I know that I am overdue and its not from lack of trying I have a few entries started and I just couldn’t find the words.  Sometimes this process of documenting our life good and bad is very therapeutic for me, and I know it will be cherished years to come when this day to day life as a mama with a young family is just a distant memory.  What a gift it would be for me to have an opportunity to read what day to day life was like for my mom when she was busy  raising three kids.  Thankfully my mom was a big picture taker and I am the first born so lack of pictures are not the issue.  The issue is the story… what was my mama thinking as she experienced my first Christmas,  or when she was helping me blow out the candles at my first birthday?

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I know that I want the stories to go along with the pictures not only for myself, but for Katy & Patrick. I want them to know what life was like in our family.  What was important to us, what got us through the difficult times.  Who we spent our time with. 

At the same time I sometimes find it hard to find the words to write what I am feeling.  Or I just don’t feel like sharing another Debby Downer Post.  Because somewhere along this past year this blog has become less about The Murphy Family and more about medical updates on our Rock Star. Updates on Katy and her special heart are important and I definitely want/need that documented, but Katy’s heart doesn’t define our family, It doesn’t define Kate, it never has.  These days it appears to be more front and center in both our minds and day to day life.  Just like everything else in life I need to find  that balance. 

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Finding balance has been a struggle for me in many if not all areas of my life.  I wonder if its because of our unique situation of having a medically fragile child, mixed in with severe anxiety and depression due to having said medically fragile child.  I just find that lately I don’t bounce back as quickly from admissions and or procedures that Katy has to endure.  I don’t know if it is because they are happening more often thus the time in between is shorter and I don’t have time to rebound, or that her medical needs have changed so dramatically over the past six months that it is impossible to deny that Katy is very sick… that Katy is dependent on her Milrione pump which I hear every two minutes… and that the call that will change our lives is imminent.

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Well that was a long intro…

Katy girl is doing well.  We have had a few hiccups with her Picc line and have spent more time in the ER than we would have liked. (Still 1000X better than being impatient.) Thankfully since having her line replaced last week we have had no issues with her line.  Milrione has proved to be the miracle drug that has taken Katy from so so for transplant to should be a rock star through transplant and recovery.  She has FINALLY after two years and lots and lots of calories… gained significant weight.  Rumor has it she may even place on the growth chart less than 5% but on the growth chart and that is AMAZING!! She has grown so much (6 pounds and 1 inch in 8 weeks) that she required a whole new wardrobe.  She has finally outgrown her 12, 18 & 24 month clothing. There have been a few calls for possible hearts for Katy… in which she was #3 or 4 in line for…which is why the team thinks the call for the perfect new heart for Katy should be soon. 

It looks like Katy will be going back to school!!! A couple times a week for a few hours.  I am required to be in the building with her just in case something should happen to her line.  We are all very excited that she will have the opportunity to be back at the Dolbeare School.

Patrick is starting Pre K at Little Treasures this year… I can’t believe he is already moving up to an older classroom.  Little Treasures has been such a blessing for our family especially Patrick.  It’s his retreat from this crazy life!! He loves his friends , teachers and most of all outside time. 

DSC_0040DSC_0041           ( I wonder when Patrick will decide that doing dishes is no longer fun?)

As for Mike and I… oddly enough we are still madly in love! Getting each other through the good time and bad!

 

 

 

 

 

Wednesday, September 05, 2012

Some Days It’s Hard to not say “It’s Not Fair”

 

Today is one of those days.  I am writing through the tears, in hopes that getting it out will make me feel better so I can face another day.  Today is the first day of school in Wakefield.  Facebook is flooded with all the adorable First Day of School photos… there are no first day of school pictures for my girl.  Katy is at the Children’s Hospital ER with a not one bad line but two… which means she will be getting and new IV while the team decides what to do… it means more then likely she will be admitted and our family torn a part once again. 

My poor baby she has been through so much… and its so not fair.  I wish I could do it for her.  I wish she never had to see the inside of that damn hospital again.  I wish that this was not her normal….this is NOT normal.   I wish that she didn’t have to be  amazingly stronger than any child should have to be, stronger than most adults. 

I wish that my son… didn’t have to worry about his sister.  He has a concerned look that not 3 year old should have. 

I wish that Mike and I could go on a much needed vacation… oh how we dream of having our toes in the sand and a cold beer in our hands. 

I wonder what it would be like had I not lived the last 5 plus years in constant fear and uncertainty.  Would I be a better wife, mother, daughter, friend.  I wonder what it would feel like to sleep through the night… I wonder what it feels like to be rested. 

I worry about my husbands health… I worry that he is to busy taking care of us… that he is not taking care of himself.

I wonder if our marriage will survive the constant beating it has taken over the last 10 years. 

I wonder if we are being fair to Katy…. putting her through all this. Are we being selfish.  When is it to much intervention. 

Please keep my sweet wonderful girl in your thoughts and prayers today.  Please hug your sweet children a little tighter and thank god for their health.

Saturday, August 25, 2012

Hello…

Anyone still here?  I am sorry for the lack of posts…. I am even more sorry that there are no pictures to share (maybe I can try and steal some off of Instagram)

Well we are home… I still can’t believe it.  We have been home for two weeks! Two weeks at home on Milrione  with a Picc line and as a status 1A…I still can’t believe it myself. Katy has been a 1A for the past 6 weeks (although she does have some 1A time banked)

Other than a few minor glitches it has been a VERY good decision for our family.  A decision that wasn’t made lightly by anyone involved.  We all had our doubts and we all wondered if we would be successful… I will say It has not been as easy as I thought it world be.  It’s a big deal to have a child home on a potentially dangerous drug that is often used in a ICU environment in some hospital settings.  So we have learned to care for her line (better than the Visiting Nurses that were sent out and we have since parted way with)

Really I can not say enough things about how well Katy is responding to Mirlrione.  Had I had known that it would have been possible to do this at home I may have agreed to it a bit sooner. Especially when I can SEE the benefits now of Katy’s clothes fit… clothes that she has been wearing for the past 3 years. 

And the pressures that they measure through blood work was the lowest number it has ever been…when she was admitted  6  weeks ago the pressure was 264 today after just 6 weeks of Milrione  her number is 17.  This is the BNP that is used to measure the level of Heart Failure. This was amazing. 

I also, just wanted to take a moment to once again thank you for you cards letters emails gifts.  I try my hardest to give a personal thank you to each and every one of you, but inevitably something gets missed.  For instance someone sent the cutest little hair ribbons one is shaped like an elephant and a few others…and I wasn't;t there when it was opened…so thank you.  We love them.  We love everything… I can’t tell you how happy a pack of Hello Kitty Tattoos in the mail means to my girl.

Thank you! Thank from the bottom of our hearts. For the prayers the good thoughts, the words of encouragement and everything else our amazing “village” has done and provided for us during this unbelievable experience.  Looking forward to the day that this is all far behind us and we can start giving back.

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I also wanted to share with you that The Be A Rock 4 Katy Foundation was chosen as the recipient of this years Colin Classic.

Colin Charles Domanico was born on August 31st 2006.  Colin had a multitude of heart issues, and was a fighter through three open heart surgeries and many many hospital ions. Sadly on September 28th 2008 Colin passed a way.  One of his parents biggest fears was that he would be forgotten.  His Uncle Brian has made it his mission to make sure that those fears never come true.  That Colin will be remembered for his hard to get smiles, and his love for the Wiggles.  One of the ways he is doing that is by hosting a yearly golf tournament to raise money to help families like ours who a struggling during this difficult time. 

Unfortunately, Katy is not well enough to travel to CT. to take part in the Colin Classic.  However, if you are a golfer and are interested in helping keep Colin’s memory alive, and helping our family through this journey.  Please feel free to print off the sign up sheet or to contact Brian Domanico  bdomanico@charter.net

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Thursday, August 09, 2012

Big News… no not THAT Big News

 

This is an update I never expected to give you.  Mainly because up until 6 weeks ago I didn’t even know it was an option and up until 3 weeks ago I didn’t know that it would even be considered by the team at Boston Children's Hospital.

Katy is coming home, once again without her new heart!!!!

Let me explain.  This admission we knew or thought we knew would be THE admission, the admission that would be long and had no end in sight.  The admission that was going to get us that much closer to a new healthy heart for Katy.  The admission that would hopefully help Katy grow and gain good nutritional weight and combined with the miracle drug Milrinone work on reversing some of the damage being done to her lungs due to the extremely high pressures that they have been forced to work under for so long.  Her Cath clearly showed us we had no choice Katy needed to be on Milrione and we needed to protect her very fragile heart and get her moved up to a !A the highest you can be on the transplant list.  My need for Quality of Life for Katy & our family no longer mattered… it was time. I made peace with that decision even though it made my own heart hurt knowing that for the next x amount of time or family would be in turmoil.  I didn’t have any way to change this we needed to do what was medically best for Katy. 

Thus, far this admission has done all that we have wanted and oddly enough has been pretty smooth. Although,  Patrick is having a hard time, being passed around and is a bit clingy when he is finally is with us.  I am tolerating not having a full nest when I go to sleep at night.  I miss watching Katy & Patrick playing and chatting. 

Do you want to know what I miss the most… my amazing, strong, funny, playful, careful, comforting husband.  I miss being wrapped in his arms before I fall asleep. I even miss his snoring.  I just miss being together.  I miss all four of us cuddling in our bed on a Friday night or Sunday morning and watching a movie.

As we were approaching our 3rd week of hospital living… I was researching our options and trying to figure out if there was a way around us being stuck in the hospital. Why can’t we have the best of both worlds… if Katy is responding so well to this treatment while in the hospital, can you imagine how well she would be doing if we were home?

I researched, and researched, I called on my friends that have medically fragile children and asked  how they got things done…  The common response was to ask the team “What are you doing for Kate here, that we can’t do at home”  What are the risks of us taking her home with a Picc line and IV Mirlrione.  I was surprised to heart that Dr. Blume responded with it is something we can consider lets see how she does.  I was hopeful.  Then I went to see if anyone at other Transplant centers have been able to go home and keep their 1A Status.  The findings were disappointing… I found responses as the ones shown below:

On a Transplant board I asked:

“Has anyone gone home on Milrinone with Picc line and stayed a  status 1A? Any info would be much appreciated.”

“From our experience, 1A means you have to remain hospitalized as long as your listed. Cabell was on milrinone through a PICC and it took an act of Congress just to be able to take him down the hall to the hospital library!”

“My niece was 1A with PICC Milrinone and remained in the hospital ... They wouldn't release her to go home because of the status and Mil.”

“my daughter is on everything you listed, and we were told she wouldn't be able to leave the hospital”

“I'm with the rest on this. In order to remain a 1A status you must remain in hospital is what I was told.”

“We were told that if we even left the Cardiac ICU to go to another floor to visit we would get booted down the list from a 1A.”

Needless to say those responses were a bit heartbreaking and made me think that more than likely Katy would have to wait inpatient.  Although, we all know I don’t take a NO easy so I kept looking and that is when I found.

”Yes, my son was a 1A and on milrinone and we were at home when we got the call. We live about 2 hours away and he was on o2 and milrinone and he went hunting with his daddy 5 days before he got his new heart. I was changing the milronone every three days and a nurse came out to change the dressings for the pic and i flushed the pic line twice a day. Please feel free to ask any questions you have.”

That was all I needed to see…somewhere, someone went home on it and they lived 2 HOURS away we live 15-30 depending on traffic.  So I researched and researched and I found that although it is not common practice it can and has been done in both Stanford and Children’s Primary Hospital in Utah. 

We knew that doing this was not going to be easy.  After much discussion with the team about the risks, the details, etc. etc. we decided that the minimal additional risk (which really is almost non existent, considering we see no reason that Katy would go into cardiac arrest)  She has been monitored for three weeks on the Milrinone and is having no issues at all.  I know the chance of cardiac arrest sounds scary, and believe me it is. But, it has always been a risk since the day we brought her home. 

Although this transition to home will be a bit more complicated… lots of medical supplies, visiting nurses, flushing the Picc line, weekly clinic visits.  Mike and I both agree that this is what is best for our family. 

Quality of life has always been important to us, and when we looked at this option from all angles this option made the most sense.  No one knows how much time we have here and although we hope and pray a heart comes sooner than later and Katy goes on to live a wonderful full life, the very real reality is that she may not.  We have no idea how long we will have to continue to wait for a new heart, we also know that we don’t have another two years with this heart if it continues to deteriorate at this rate.

Knowing that information, we would prefer to have time together as a family while we wait, instead of being sleep deprived and separated from one another.  I feel that if something were to happen to Miss Kate, and we spent her last months on this earth in a cramped hospital room, spending the majority of her time in a hospital bed I will regret it.  That said if the team did not feel that this was a safe option for Kate… we would not even be discussing it.  If we had any doubt in our ability to care for Katy’s Picc line and new meds… we wouldn’t be doing it. 

Although, this has never been done at Boston Children’s with a child as young as Katy.  I am excited that Katy is once again paving the way.  Procedures are being put in place and maybe it will help another child get to wait at home.  I am not saying that this option is a safe option for everyone.  But, I do think it is something worth talking about.

That said the plan is to go home on Friday the 10th.  Plans can always change, but I don’t expect any surprises so I think it is safe to share this with all of you. 

Thank you for loving our girl, and supporting us, your encouraging words.  They mean the world to us.

Much Love,

The Murphy’s

In case you missed these on Instagram (click the link to follow me there)

Here is what we have been up to:

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Sunday, July 29, 2012

2 Years

Katy has been listed and waiting for a heart transplant for 2 years.
For two years our life has been a constant what if…. when… how? 
Should we do this? Should we not?  Do you have your cell phone?  What was Katy’s weight today?  I hope they don’t admit her this time.  We’re admitted, should we stay or should we go?
As hard as it has been, it has been equally wonderful.  We have lived life, as one might live knowing we were on borrowed time.  Living with that mindset does change how you see things and do things and I think it has been one of the best parts of this journey.  We live for today.  We do all we can to fill our days with happy memories.  Because the truth is no one knows what tomorrow will bring for any of us.  I am confident that Katy is going to come through transplant and be better than ever…but if she doesn’t I know that we have given her an amazing life.  She has been loved and she knows how loved she is.  She has changed every person that has ever met her and even the ones that just know her through our blog.  She has done amazing things and has brought awareness.  Here is a glimpse of what we have done is the two years we have had… the two years that we were able to squeak in with diligent care so she had the best chance at quality of life.

Friday, July 27, 2012

Processing…

This post is long over due, and although I have been giving small updates via Facebook.  (really mostly sharing pictures) I haven’t had the courage, strength or maybe the words.  I have had to process, and reprocess and accept all over again what we knew two years ago, really what we knew five years ago when Katy was safe inside me.  There have been tears, and sadness, anger, and nervous laughter. Decisions are being made and Mike and I are doing our best to keep life balanced.
Unfortunately Katy’s cath and MRI on last Tuesday (7.17.12) we learned that Katy’s heart is getting sicker and is much sicker than she lets on.  For the first time Katy had a rough time during her anesthesia and it was a bit scary in the cath lab with her sugar dipping dangerously low.  The cath also showed that Katy’s heart function is worse if not much worse then it was last year.  This was expected, but disheartening nonetheless. That said it made our choice to admit much easier. 
It took Katy a few days to recover from her little stint in the cath lab and we needed a picc line placed before we could start the Milrione which meant her being put back under.
A PICC line is, by definition and per its acronym, a peripherally inserted central catheter. It is long, small,flexible tube that  is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access. It is similar to other central lines as it terminates into a large vessel near the heart. However, unlike other central lines, its point of entry is from the periphery of the body � the extremities. And typically the upper arm is the area of choice. (http://picclinenursing.com/picc_why.html)
Thankfully, Katy has bounced back to her smiling self, and is loving being the Rock Star of 8 East.  She is responding well to the Milrione  (we know this because of her BNP in her blood work)  Given that Katy is never symptomatic it is nice to see the numbers via blood work.  We have increased her overnight feed and she is tolerating the increased volume.  The team expects (hopes) to see a weight increase within a month, as much as a pound.  Given that Katy hasn’t gained an ounce in 2 years a pound would be jaw dropping. 
We are all adjusting to hospital life and making the best of a really tough unimaginable situation.  Mike and I are at our best we we are advocating for our girl and we make a great team.  They say times like this make or break you and thankfully it has made our marriage stronger.  We both looking forward to the future and still have lots of hopes and dreams that we will make it through this and it will one day be a distant memory. 
Patrick has been amazing!  He is passed from grandparent to grandparent…hospital to home and is so easy going and just the sweetest, most kind hearted little man. 
So for now we wait.  Waiting is hard, the unknown is scary, and the fact that life goes on and laundry still needs to be done is daunting.  But, we’ll do it because what choice do we have? 
As always thank you for your prayers and kind words, you donations and gifts. We could not do this without our village that expands around the world.  You get us through our days.  We love you and are so thankful for each and every one of you. 

Disclaimer:  This was written at 11:30 pm I hope it makes sense.

Sunday, July 15, 2012

3 Days

I went to bed at 1 AM and it is now 5:15 AM, I guess I should be thankful for what little sleep I was able to get all snuggled up with my sweet, strong, amazing little girl.  I could stand a lot to learn from that little girl who is wise beyond her years.

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Yesterday was a rough day for both Mike and I .  We were both busy getting things done, trying to keep busy.  We could hardly look at one another, for the fear that once we did we would loose it.  Mike is always so strong, optimistic and it is no secret that he is the glue the keeps me together.  He has the ability to make me believe that we are going to get through this and be better for it.  But, even he has days when I can see it in his eyes…  I see the pain, sadness and fear in his eyes and it breaks me.  Because, I am not strong enough to comfort him. The bond that those two share is indescribable, from the moment she took her first breath he has been caring for and loving her every second of every day. He is the most hands on dedicated daddy I know.  

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Although Patrick knows Katy is going to have a sleep over,and he doesn’t understand what that really means.  He does know that it means he won’t have his best friend to play with… he knows that it means he will be passed around our family members and either missing his mommy or his daddy and most of all his Katy girl.  (He may be her younger brother…but he always has her back. ) when he does get to be home playing with his own toys and sleeping in his own bed. 

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I do think that a week from now… we will be settled into our new routine… we will have worked out the scheduling kinks.  We will be navigating our way through our new way of life.  I know we just need to get through this week.  I also so how hard that is going to be. 

Any prayers and good thoughts you can send our way our much appreciated.  I may not always reply, but trust me I am always comforted by your words. 

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