A Night With The Rockettes

I was so excited when our family was invited to see The Radio City Music Hall Christmas Spectacular.  We were invited by Children’s Hospital and The Boston Celtics Shamrock Fund.


I knew it would be a fun night for our little dancer.  Especially since after she saw the Rockettes perform in the Thanksgiving Day Parade she told us she wanted to be a dancer.
We met up with another amazing heart family, The Kaiser Family.  They just so happened to be sitting in the same box as us which made for a fun time for the kids and gave Shannon & I a chance to chat.  Sometimes it is so nice to talk to someone who gets it.

Katy & Bridget got along so well.  Katy later told me her favorite part of the night was playing with her friend.

Patrick was memorized the entire time…

Katy Girl Update

Yesterday was a big day for Katy.  She had a Cardiac Cath.  The first one she has had since last year, when the results landed her on the transplant list.

Yesterdays cath brought GREAT news…

NO new damage to her heart or lungs!!! 

I was eerily calm heading into this surgery.  I usually (as you know if you have read any of this blog) a hot mess leading up to Katy’s appointments.  For whatever reason I wasn’t this time. I think I just knew that there was nothing that could be worse than last year! 

It was a long day (15 hours) but we avoided an admission!! Which is always a good day in my book.

Kate was supposed to be first case, but was bumped for a very sick baby from the CICU.  It’s hard to get upset about being bumped when you know the circumstances.  We are just thankful that Kate is well enough to be bumped.

She was handling the delay OK (considering she was probably starving) 

They finally took her back around 11:30 after giving her some loopy juice, Mike walked her back to the Cath Lab.  Once she was settled . Mike and I grabbed a bite to eat and went back to see her at  around 2pm.  Katy was very agitated and was having a difficult time coming out of the anesthesia.   Which was difficult since she needed to lay flat for 5 HOURS.  As a result of her being upset she kept lifting and thrashing her leg, and complaining that her incision was hurting (my boo-boo is hurting) she had disturbed the clot and was bleeding.  I came back from the bathroom as the nurse was calling for the fellow and for anesthesia.  There was a lot of blood (probably looked like more than it really was) They gave her more meds to relax her and they were able to stop the bleeding by applying pressure for about 30 minutes.  After that episode, amazingly Katy was able to lay flat and watch Disney movies for 5 HOURS.  I still can’t believe it.

She then needed to have a chest x ray and then we were released at 9:15pm.

It’s hard to believe that we are quickly approaching the 1 year mark since being listed. 

Thanks for your continued prayers and support.

 

Stream of Consciousness

I mentioned back here that we were noticing some subtle changes in Katy. For the past two weeks or so we have noticed Katy becoming increasingly more tired and cranky. When the changes are subtle it is so hard to know if it is heart related or just 3 year old related. To be cautious and to make sure that we weren’t unknowingly ignoring a sign of congestive heart failure, we called the team explained that Katy was requesting naps, ( where she had most recently just starting to get to the point of not needing a nap) more cuddle time on the couch and just a bit more cranky and demanding.

The team heard us, and agreed that it could be heart it could be a 3 year old. Lets wait and see. Ahh… my favorite response, wait and see, right up there with a “it’s a virus” diagnosis. They both mean there is NOTHING I can do… lets see were it goes!

So we went about our life… Mike and I had our first visit with the trainers at the YMCA, I started back to classes… just a few more sessions to go. We painted, and shopped, had bath time and folded, LOTS AND LOTS of LAUNDRY! ( I swear it multiplies by the time it comes back up from the laundry room. )I am sad to say that as much as I try… I can’t seem to get the laundry ( that is all folded and separated by family member) into the DRAWERS!!! Anyone else have that problem?!

OK. Back to Katy…

We did all that knowing and silently acknowledging to each other, that Kate wasn’t right and wondered what was going on, praying she would snap out of it and we would continue to wait for a new heart from the comfort of our home. ( We still might be doing that… We don’t know anything different as of right now)

So yesterday, we realized that in addition to Katy being lethargic, and cranky she had really no appetite and ZERO interest in eating. Still drinking and peeing ( which is a good thing) but, really ate NOTHING yesterday. That symptom alone would be enough to scare us, add that with the whole cranky tiredness we have going on and there really is no denying that this is more likely heart related… and not just a tired 3 year old.

So for the second time since we had the G tube placed back in August, I was happy to have it last night. With Kate refusing to eat we can be sure to know she is getting X amount of calories and vitamins, through her tube feeds. I would much prefer for her to eat her calories, but if she won’t then I know we can maintain her with feeds. For Kate to lose what little weight she has would be devastating.

So we called the team this morning and of course they agreed that the no eating was a concern and it was time for a full work up. So Monday we are headed in for blood work, EKG, Chest X-ray and an Echo. Hopefully, they all come back normal, or maybe her meds just need to be tweaked.

I’m Working On

( Blog Topic from Ali Edwards)

I’m working on organizing prints and ordering more prints in an effort to get scrapbooking and current on our family albums. Mike is helping with this process, and he so kindly pointed out to me, just how far behind I am. Which further validates my decision to do Katy & Patrick’s yearly albums digitally.

I’m working on making our house more like a home. We moved four mouths ago, and although the space is functional, it needs some reorganization and decorating. First room on the agenda is the kids bedroom, I want it to be a functional, fun & welcoming space.

I’m working on a new knitting project, after my crochet fiasco ( I just can’t get the hang of it) I casted on a cute knit sundress for Kate. It’s a bit out of my comfort zone, but definitely something I can handle.

I’m working on fundraising for the NSTAR walk for Children’s Hospital Boston! I am so very proud of everyone that has joined our team and is raising money for the hospital that has and continues to save my daughter’s life. I can’t wait to walk with all of you on June 12th.

I’m working on typing all of our favorite recipes. I HATE the mix matched recipes, some printed, some handwritten, some stained, assorted sizes. Looking to have them all neat and orderly, and I may even print them and put them in a BINDER!!! Don’t hold me to it.

I’m working on trying not to think about the fact that Kate has been on the transplant list for 7 MONTHS. I am trying to not watch the calendar pass us by, and all the dates that I in my head and said she would have a new healthy heart by, and this part of our story would be behind us. I know in my heart that the perfect heart for Kate will come when it is most needed, and I’m working on making peace with that.

Children’s NSTAR walk

How can we ever give back to the hospital that continues to save our daughter's life. We try and donate whenever we can, toiletries kits for the parents on 8 EAST, cookies at Christmas for the staff on 8 South, in that capacity we are only able to reach a handful of people.

Alone, we can't make a difference, but together I think we can. Together with 5000 other thankful people we can help raise over a MILLION dollars to give back to the hospital that has given us, and our sweet Katy Girl so much.

It is my hope, that you never need to know what a wonderful place Children's Hospital is. I know that before I learned of Katy's heart, I never knew just how lucky I was to live 15 minutes from one of the best, if not THE best Children's Hospital in the world. So together with our family and friends we hope to ROCK the WALK in honor of our ROCKSTAR Katy. Will you join us?!

To join Katy's Rockstars please go to: NSTAR WALK Sign Up sign up under Katy's Rockstars.

Can't walk but would like to help us give back, there are several ways to donate. You can donate directly at:Donate to NSTARs Katy's Rockstars Team, contact me to send a check, or use credit card/PayPal ChipIn!

If you have already joined our team or donated. THANK YOU!!! from the bottom of our hearts. THANK YOU for continuing to support our family as we embrace our journey. We love you and could not do it with our all of the ROCKSTARS that surround us.

Reminders

Sometimes, we all need reminders, gentle nudges to help put this into perspective.  Kate is home and on oral antibiotics to take care of what is brewing around that damn tube.  I’m sorry but I never wanted that damn tube, and it has been nothing but a headache since she got it.  Maybe it will be useful one day and I will be singing its praises but for now it is the damn tube.  ( which unfortunately, is how Katy sometimes refers to it as well… there are worse things she could be saying, ask me how I know)

Anyway, back to reminders… last night @ 11pm when I was changing Katy’s late night diaper ( sometimes she requires late night diaper changes, especially on her double diuretic days, especially on those nights I sneak her out of her bed to cuddle, or in this case see the little gift nana picked up for her while we were out shopping you know, the $2 princess compact that she just had to have and threw her very 1st (shopping with daddy) tantrum over.  Daddy held firm and didn’t give in.  So my mom and I went on search to find it at Target…just to see Katy’s sweet smile and hear her say “It’s just the one I wanted” . 

Remind me again where I was going with this… oh yes, so back to the diaper change that soaked through her onesie…which prompted complete pajama changing which gave me a good look at her g tube and I saw the dreaded drainage and redness,and Katy in her most convincing voice telling me “ Mama, my tube, I mean my button looks, good” Which she always says in hopes of me not further investigating or heaven forbid cleaning it.  And, I said Oh, Kate…and called for Mike with tears in my eyes, knowing what I was seeing and knowing that it most definitely meant a trip in to Children’s 1st thing in the morning, you know the morning when we were supposed to bake cookies, and make a last minute trip to Target for more Stocking stuffers, because you can never have enough Stocking Stuffers.

All I could do was hope and pray… that we caught it quick enough that oral antibiotics would be all our girl needed and that they would not admit her.  The thought of another Christmas at Children’s was way more than this mommy ( or daddy) could handle. 

So I waited patiently by the phone for updates from Mike, I rallied our prayer warriors and hoped and prayed for the best.  I bartered with God, that if he let this be simple, and let us have this Christmas at home, I would get out of my funk, stop being a Grinch and embrace the holiday spirit and focus on how very lucky we are.  Even though the one thing I want so badly, will not be under my tree.

It worked.  Katy’s G tube is infected, but we did catch it early. We are back on antibiotics, and Mike and Katy are on their way home.  When they arrive we will go back to our scheduled program of baking, and last minute trips to Target. 

The next couple of days will be busy, I am sure!  But, the good kind of busy.  Visiting with family and friends,  wrapping the last of the gifts, making a gingerbread house, reading fun Christmas stories,  watching K & P’s excitement Christmas morning, making memories!

I doubt I’ll have time to blog before the big day.  So just in case… I want to wish you and your family a very Merry Christmas from me and my crew.

Katy is headed to Children’s

Please please please send any prayers and good thoughts our way. Katy's G tube site (feeding tube) looks infected (AGAIN) Mike just brought her in to Children's. Please pray that we caught it early enough and that she is not admitted 2 days before Christmas.

I am most certain none of us could survive that. Its been a long emotional week and I am coming undone.

Having a bad day!

Well today is one of those days…one of those bad, bad days! I have no desire to do anything.  Katy and her special heart is weighing heavy in my mind.

This time of year is especially difficult for me, due to Kathryn’s birth. Although, being the best day of my life, and it was.  It was also a very traumatic day for me.   This year it is especially difficult, because I fully expected Katy would have her new heart by now.   We are approaching our 5th month of being listed.  Many of the heart babies I know that have been transplanted all seemed to have their new heart by the third month. 

The average wait time is 6-12 months, that said Katy’s doctor expected it by Christmas as well, purely based on her experience, since there is NO WAY to predict when a heart will become available.

Although, Kathryn continues to be stable and her medicines keep her healthy.  I know she is getting sicker, I know she is no where close to gaining the amount of weight that she needs to be gaining.  I know our days are numbered.  It’s a horrible feeling.  What’s worse is I know Mike is feeling all these same feelings, which makes it even scarier, since he is usually the optimistic… she’ll be fine member of this team.

I also know that there is not a damn thing I can do about any of this. Which makes it 10x worse.

I also feel like as much as our friends and family try to relate, try to understand, that they really have no idea just how sick our little girl is, and how sad and painful and tiring our day to day life is.  I try to put a brave face on… but our life is very difficult.  I am sick of it.  I am sick of pretending we have everything under control… when in all reality I have never felt so out of control in my life.

No one is sleeping…even though I take enough sleep meds that should put a horse down.  Mike is balancing everything… there are many days I am just useless.  It makes me so ANGRY!!!!  I want to know what its like to just be normal… I hate that I will never ever know what normal is.

Happy Birthday Sweet Baby Girl

Three years ago today, Miss Kathryn Marie Murphy entered this wonderful world at 1:47 pm with a sweet cry and a tuft of dirty blonde hair. On this day, Katy made me a mom.  I can honestly say that this was the BEST day of my life, a day I waited so very long for, and a day I will never forget.   I can’t remember what we did last week, but I can give you a play by play of Katy’s delivery.  It was a day filled with many emotions, and was most certainly unforgettable.

Since day one Katy has been a strong and amazing human being.  She has has made every. single. day. wonderful.  She is a joy to be around, and has a smile that lights up any room she is in.  I can not imagine a more kind and caring little girl.  

To say that Katy has been through a lot (medically) is a major understatement.  She has been through more than any child  should ever have to endure, and unfortunately has a long road ahead of her.  I am amazed at how well she handles her many doctors appointments, procedures, and daily medicine.   On my worst day, I think of Kate and how she handles all of this with such grace and I am reminded that if she can do this, so can I. 

All About Kate at 3 years old:

Weight: 23 pounds!!! Yup we have gained 3 pounds since June!

Height:  I’ll have to get back to you once she has her wellness visit, but judging from all her shirts which are turning into belly shirts, I’d say she sprouted up a bit.

Favorite Color:  Pink ( purple is a close second)

Favorite Store: Target

Favorite Restaurant: Outback

Favorite Toy: Minnie Mouse

Favorite Book:  Pinkalicious

Favorite Food: BBQ Chips

Katy,

I love you to the moon and back.    I love watching you love life.  I love your sweet voice, and having” I love you more”  wars.  I love how much you are a Daddy’s girl.  I love how caring you are towards your “baby” Patrick.  I love that you love to sing, and color and play.  I love that you love to be a girly girl. I love you to the moon and back.  I am so thankful for you, and can’t imagine my world without you   I know that you are going to do great things in this world. 

Love,

Mommy

Thankful Day 10

Today I am thankful for Children’s Hospital Boston, and Katy’s fabulous team of doctors. I always say that I wish I never had to know how wonderful Children’s is, but thankful it’s in my back yard. It’s really that whole love to hate, hate to love thing going on.

I’m thankful that it is 20 minutes away. I am thankful that the doctors are the best of the best. I am confident that Katy is getting the best care possible. That for the most part everyone works together as a team, and we all have Katy’s best interest in heart. I love that I feel that they are vested in Katy and her life as well as Mike, Patrick and I .

I love that even though Katy is poked and prodded she loves going and loves her Dr., B.

Back to reality… ahhh

We landed in Boston at 1:00 pm and we were in the Children’s Hospital ER within 24 hours… I know I didn’t believe it either.

Katy was very tired when we got home, to be expected. We all were. We were NON STOP all week in Disney.

Then she puked. ( I really have tried to find a better word for puke… there really isn’t one.) Still hopeful Mike and I decide that she probably is just overtired… then she puked again,and again and again. So now on top of all the vacation laundry we had puke laundry. LOVELY

We had a rough night and then the dry diapers started… never a good sign for a heart baby that takes 3 diuretics. I knew if I called, we were going in. I had no choice I called… they sent us in, and we prayed we weren’t going to be admitted.

It just made more sense for me to head in with Katy. So we did… we have a speed pass for the ER. (Only positive I can see to being on the transplant list)

O2 Stats were 99 …can’t beat that and she seemed OK just dehydrated which like I said due to her diuretic dosage is very easy for her to do.

Dr. Blume came down to see us and work with the ER doctor for a plan. Thought about admitting us, I begged her not to.

It was decided that we would stay for the next 4-6 hours and see how Katy tolerated Pedialyte through her tube, after she was given Zofran to stop the puking. Hmmm… maybe that damn tube is useful after all. It certainly in my opinion saved us from an admission this time.

Since she tolerated it fine… we came home and were able to run the Pedialyte through the tube to keep her hydrated.

I know at this point I shouldn’t be surprised at this… but really not even home 24 hours. I suppose it could have been worse… could have happened while we were at Disney!