Saturday, October 29, 2011

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!

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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

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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 Smile WE love visitors.

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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.

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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

 

4 comments:

2ndheartmom said...

I have followed Katy's story on this blog for some time. I am sorry that she is in the hospital and you are having to deal with the seemingly inevitable roller coaster of a heart kid in the hospital! My daughter, Mackenzie, had a transplant just over two years ago (7/7/09) at 4 MO. I hope that Katy continues to look and seemingly feel so good as she waits - I know there is not a lot of fun stuff in the hospital, but it seems like you have a great support network, which is great! Katy and you and your family will be in my thoughts and prayers!

Anonymous said...

Sending more love and prayers your way. You and Mike are amazingly strong and Katy is too. Hope Patrick gets over his cold soon.

Love from The McDonagh Family

Anonymous said...

MamaJo from Scrapshare passed your blog to us. My daughter Paige who is 11 months old just received a heart transplant on September 30 and she thought maybe we could share our experience with you. I'll be happy to help in any way I can. We don't have a blog but I keep a carepages account: www.carepages.com/carepages/BabyPaige. If you'd like to chat, my email address is kellyekcunningham@hotmail.com.
In the meantime, we are putting Katy and your family on our prayer list. Take care,
Kellye Cunningham

OhSewCrafty said...

My partner and I are praying for Katy and your family everyday. We are holding a "Quilt for Katy" auction on our website. All of the proceeds will go to "Be A ROCK For Katy" fund. To anyone who sees this, please pass along this link. www.OhSewCrafty.com. Auction is for a Queen size handmade quilt and matching pillow cases. Let's show some support for Katy!