A few new posts…
Children’s Day 3, 4 & 5
Saturday July 24 2010
Last night I left Katy and Mike with our cousin John who came up to visit (and got Katy the biggest Minnie balloon I have ever seen!!) and headed home to do some homework and try and get some good sleep since I had school all day today! It was so difficult leaving Katy girl even though she was in great hands.
Today was a long day, but I got through it. I had lunch with a great friend, and my Bay Path Girls got me through the day. I left a bit early to head up to see my girl. She had another great day. Auntie Mary came up to visit, which was lovely she too brought Katy balloons!! And treated Mike and I to dinner! Thanks Auntie!
We had another great nurse tonight…I tell you a great nurse makes all the difference. Katy is getting to be very popular on the floor and lots of nurses are sporting Katy bands!!!
Patrick had a fun filled day with Auntie Melissa and her crew… I miss him so much!!
Sunday July 25 2010
Mike and I both stayed at the hospital last night. I am amazed at how well Katy is handling this hospital she is really proving to be a little rock star. She is cooperative and loves making the team laugh… She has such a fun sense of humor for a two and a half year old. I love her use of sarcastic humor! I wonder we she gets that from?!
Auntie Krissie came up with balloons and lollypops adn Katy Girls favorite Blue Raspberry Coolatta… she is not spoiled, juts loved much. Kris took Katy to lunch and the playground while Mike and I snuck out to meet Patrick and the DeMarco’s at the Frog Pond!!
Then we ( all three of us) headed back to Children’s! Katy was so excited to see Patrick. They have the cutest little relationship. I love, love, love, watching them interact.
Then Papa, Tracy and Cole came up to visit! They brought Kate the most ADORABLE Build A Bear!!! Katy Bear with a heart that you can feel and hear beating. Very Cool!!
We ordered in The Cheesecake Factory (one of Katy’s favorites) and shared a yummy dinner with everyone in
our new dining room in the Children’s Hospital Cafe! Thanks Papa!!
The plan is still discharge for tomorrow and we are ready!!!
Monday July 26 2010
We are going HOME! With the NG tube….but still we are going home! We are going to give it a try and see how we do!!
Thanks for all the visits, cards, gifts etc.! They mean the world to us!!
Admission to Children’s
DAY 1 July 22 2010
Today we spent most of the morning cleaning and packing for our stay at Children’s and Patrick’s stay at Auntie Dars, and then Auntie Melissa’s ( So happy he is such a good boy)
We arrived at Children’s around 3:00…which was great timing since our room was ready and waiting and we were able to get the B side the inside bedspace in the shared room, which gives just a teeny tiny bit more room, because The Murphy’s aren’t light packers.
Mike got us all settled in, while I went to Parent coffee hour. Then it was time to insert the oh so lovely NG tube… Katy was given Ativan which always makes her a bit interesting. Then her and daddy were off to the treatment room.
I think its great that anytime they have a “procedure” to do ex. blood draw, feeding tube, etc. etc. they take them to a seperate room. That way her bed space is a safe and comfortable place. I had a super special surprise waiting on Katy’s bed when she came back with her new accerorie. We have a WHOLE HUGE bag of goodies, for our brave little princess. Let me tell you she DESERVES each and every trinket she gets. She just continues to prove to be a rock star!!!
Katy had a difficult time falling asleep…and didn’t end up falling asleep until 11:30 PM!! We were then disturbed at 4AM with an admission and Katy girl was up for the day!
Cuddling with her Daddy –O… Such a daddys girl!!
Day 2 July 23 2010
Katy tolorated her overnight feeds just fine. Her chest xray did show that she had some extra fluid in her lungs, which is not a great thing, but can easily be fixed with some adjustments to her lasix. So the team is working on that. As predicted she is not eating as much in the hospital as she does at home, but that is to be expected.
Mike and I met with the team and signed all the necessary paper work to list Katy… the plan is still that she will be listed this admission. Sureal.
Katy and I were both exhausted and took a good 2 hour nap snuggled in her crib…
Can you believe my baby by is 18 MONTHS old…
I know, I am long over due for an update on my little P Man!!! Oh, so much to say about what an amazing little man he is. Patrick has proved these last 18 months that there most certainly is a bigger plan. Let’s just say that surprised is an understatement, when I describe what I felt when we learned we were expecting Murphy Baby # 2 when Murphy Baby #1 was only 3 months old. Considering all we did to conceive Kathryn… once the intial shock wore of Mike and I were pretty proud of ourselves ;) This is a family blog, so that is all I am going to say about that.
Patrick at 18 Months
Still is a mamas boy the majority of the time
Although he does love his playtime and rough housing with his daddy
ADORES his big sister!! It is so fun to watch the two of the interact.
LOVES to eat!!! His current favorite food is: Cheese
He runs and climbs and reminds us everyday how different boys are from girls
He has a bit of stubborn streak…but a smile that can melt your heart
He LOVES books and loves to crawl in our laps to read books and has already has learned “1 More”
He is a HUGE fan of Elmo!
He gives the sweetest hugs!
He loves his blankie…that Auntie Krissie had made before he was born.
He likes to clean and tidy up his toys…loves to clean up his spills
He is a dancing machine!
Oh, and his belly laugh…he still has it and its cuter than ever!!
He weighs 24lbs which was surprising to me, since he eats so well, but as I said he is an active little man.
Patrick is a joy! He completes our family!!
Better than Expected
Today’s transplant appointment went much better than I had expected. There was no G tube fight. Basically both Mike and I misinterpreted the nurses message. Basically today was to tell us what was discussed at the meeting yesterday, and what needed to happen to get our little Rock Star listed and on to the next chapter.
So basically what happens at these meetings is each of the Transplant cardiologists presents their cases. So Dr. Blume presented Katy to all the other members of the team… surgeon, fellow cardiologists, nutrition, GI, Social work etc. etc. all those people that I told you we had previously had to meet with before listing. They then review Katy’s story… and based on numerous statistics they place her on the chart as to how successful transplant will be for her.
Basically there are two ends of the spectrum; on one end is the kids that bounce back quick, minimal complications, are off playing soccer within the year post transplant. Then there is the other end of the spectrum which is sadly the kids that don’t even make it out of the OR. I am happy to report that Katy is on the soccer playing end of the spectrum. Given her history, how well she is doing and responding to medicine, the fact that she has had NO previous surgery, kidneys are great, liver is great, developmentally she is great, she is well vaccinated, our lifestyle etc. makes her a lower risk therefore a great candidate for transplant.
Once that is decided they look to see if and when a transplant is needed and based on Katy’s non growth and the pressures and structure of her heart. Yes, a transplant is the best course of therapy and sooner rather than later is the way to go.
It was also decided that although we all seem to agree that Kathryn will not gain any significant weight until she gets her new heart, a few extra pounds wouldn’t hurt to help with her healing post transplant and to help keep her as healthy as possible while she waits for her gift.
So, it was agreed that we would admit Kathryn for 5 days to Children’s for an NG study. Using the NG tube to feed overnight to see if the added calories will increase Katy’s weight. If that does in fact work, we will then look at the G tube placement again once we have some data. During that admission we will do all the necessary paperwork to list Kathryn.
Thank you for your continued love and support! We could not do it without you. Admissions are hard on all of us, but they are becoming especially difficult for Kathryn.
Today is the day…
Well today is one of the days…Not THE day… (I’m trying to imagine what my blog post will be like when THE day arrives. I won’t know until then, since there is no way for me to imagine those kind of emotions. I imagine it will be similar to the day I delivered Katy girl… I don’t know… I’ll be sure to let you know)
Anyway today was the day that Kate’s case was being presented to the entire Transplant team…finally it seems likes its been months since we learned that she would need a new heart sooner than later and in reality its been just about a month, well 37 days…but who’s counting.
Anyway we spent the day with family, having fun with our cousins and splashing in the pool. ( More on that later) All the while I was waiting for the call…waiting to hear Katy’s kidney function results, waiting to hear what the team had to say, waiting, waiting, waiting…trying to act like I wasn’t preoccupied, willing the phone to ring, because I have learned that I prefer some news to no news (even if the news received is not the news I was hoping for). I am so not a fan of “no news is good news.” To me that’s denial.
I was able to keep my act up until 3pm then I started getting antsy…wondering why the nurse hadn’t called. Was something wrong?! Were the nurses drawing straws trying to decide who would be the one to call Mrs.. Murphy with the bad news? Should I call?! I don’t want to be a pest… Mike says wait… rest of the family has no opinion! I decide that I can’t wait, I beg Mike to call, if its bad news Mike will be able to listen and understand it better than me, and I always take the news better from Mike. (MY GOSH! What would I do without that man)
Finally Mike calls and gets through to the transplant coordinator, she is vague…says Dr. Blume wants a sit down to discuss where we go from here. I am instantly annoyed! I assume this is to discuss the feeding tube AGAIN. We have an appointment for tomorrow at 2pm.
Here, I sit both emotionally and physically drained. But, tomorrow I will be well rested and go in and listen to what the “team” has to say. FYI I am bringing my boxing gloves! I’ll update when we know something.
Well I had fully planned to give you just a normal Murphy Family non transplant update …you know the kind filled with pictures of us LOVING this life, I still plan to do that. I just wasn’t quick enough and now I am back logged on Transplant info and I feel that right now that is more important…than showing off my little firecrackers!!! For all of you interested in our little girl with her oh so special heart, and for my own documentation. I am thinking it may be time for me to start a traditional journal again, since it seems I never get on here as quickly as I would like.
So here goes…
Today was the final piece we needed to complete before Kate’s case would be presented to the Transplant
Gods team. It was a kidney function test, routine test to make sure that Katy’s kidneys are in good working order, since the meds she will need to take post transplant will be hard on her kidneys. Basically the test consists of them inserting two IVs one to administer a radioactive tracer,and another as a port to do multiple blood drawers ( total of 4) As you can imagine that all adds up to another LONG day at Children’s. Thankfully my mom had Patrick. (Thank You Nana)
We arrive at Children’s expecting to just spend the day killing time I mean how difficult can it be to get two IVs in and drawer blood every 2 hours. Well let me tell you… DIFFICULT. I can’t believe how hard it was to get Kate’s IV in. Finally I said enough was enough and demanded that they get the IV team down to do the IVs or we were DONE! MAMA bear was out in FULL force. After waiting 45 mins for the IV team to come she was able to get both IVs in, in about 3 mins. minimal tears for both Katy and Mama.
Live and learn, Kate is hard stick just like her mama and now I know to request the IV team to do any and all IV’s in the future.
Finally at 3:30PM we were all set and ready to roll…just in time to beat the afternoon traffic, which is always a good day.
We should have the results tomorrow and as it looks now, Kate is going to be presented to at the Transplant conference tomorrow AM which will most likely give us a date of when Katy will be listed for her new heart.
I really have no idea how I am supposed to feel… excited, scared, happy, relieved, we are dealing with a whole lot of emotions and I expect to continue on this emotional roller coaster for some time. Still adjusting to our new normal!
I don’t know how it happens, maybe we do too much, maybe I take too many pictures, maybe I take to long to upload and edit said pictures, maybe life is sometimes crazy and by the time I have a moment to do anything…all I want to do is sleep! Maybe its because I have picked up my knitting needles again and that takes up most of my free time.
More likely then not…it’s all of the above reasons!! We are too busy making memories, and that’s not a bad thing!
I am sure you can imagine… I am behind on my scrapbooking, to let you know just how far behind I am on the scrapbooks I am working on Katy’s First Year Album 2 working on her 1st 4th of July page…my goodness was she an American beauty (still is) So, yeah I’m behind. But, I have set a goal. I want her 1st year done before her transplant…so I am beating a clock, that I can’t see. I’ll let you know how that works out for me.
So regaradless of the reasons I am yet again working on the backblog… for my own santity I will be post dating them so when go back to look something up it makes sense to me. I will try to post a link, but your best bet might be to scroll back and see if there is anything new. Nothing before June!
Fireworks with my Little Firecrackers
After a wonderful beach day and afternoon naps (BONUS) we headed to Wakefield to watch the Fireworks with Papa, Tracy and Cole. We did that last year, so I guess you can call it a traditional. The town of Wakefield puts on a great show and its fairly local so makes for a good choice for a family.
Back before kiddos Mike and I have been know to head into the esplanade…sometimes in the rain. Or there was that one year we went to Hampton and sat in 4 hours of traffic to get home! All set with that!