Friday, May 16, 2014

15 Months

Katy received her gift of life 15 months ago. 15 precious months… that by all most accounts via social media and this blog have been happy fabulous days filled with many firsts and many days to be thankful for.  Of course you have read and prayed over the updates that haven’t been so great…and we have gotten through those bumps that we knew were apart of this new journey. 

But, in an effort to protect you, and myself.  Those prayer requests and updates that were not full of sunshine were very much sugar coated… I made it look like no big deal… just a little hiccup and I drowned those not so positive updates… with tons of pictures of our little girl rocking life with her new heart. 

The reality is for the last 15 months our baby girl has been fighting for her life… harder than she ever did with her old heart. Katy’s cardiologist said… for the last 15 months Katy has been trying to die.

I disagree… Katy’s heart/body may have been trying to die… but Katy, Katy has been fighting to live.

The doctor’s words stung. They still sting. But she speaks the truth.  Katy has had so many complications since her heart transplant.  Complications we were told could happen, but usually don’t and according to the team they never see a child have this many complications of both rejection and infection, and so severe at that, and nobody knows why.

For the first time in all of this… and all of Kate’s life.  I am afraid she may die.

She is not bouncing back in typical Katy fashion. Her echo today showed no change… well that’s not very comforting. There is still a gallop when you listen to her heart. Her heart rate is down… but no big surprise since we are giving her a med to do that for her… I would be surprised to hear if it wasn’t down, and her weight is back up. Usually I can take all that medical stuff and stop and look at Katy and as long as Katy looks well and is doing clinically well… I can pacify myself… well when I look at Katy I see a girl that is white as a ghost… has puffy face… a belly that is distended and low energy…not very comforting. 

Mike and I are looking at Katy and giving each other the look… the look that tells the other she just isn’t right. All the while telling ourselves and each other that maybe she is tired she was up at 530 for clinic… she just got out of the hospital… that her heart was very sick and maybe she needs to relax.  All the while wondering if we are making excuses.

Please continue to pray for Katy’s healing. Please pray that the team can pinpoint what is the problem and why Katy is not responding as expected to the meds and treatment.  Please pray for peace for this mama who is scared out of her mind.  Pray that Mike and I can find a balance and rely on our gut to continue to help guide us in caring for our precious girl.

 

 

Saturday, May 10, 2014

Katy Rejection Take 2 May 2014

Synopsis:

Well the last 10 days have been exhausting, scary and emotionally draining for all 4 Murphy’s.  Thankfully Murphy #5 is safe and happy on the inside.

Really the last 15 months have been exhausting, scary and emotionally draining, that said hasn’t Katy’s entire life been exhausting, scary and emotionally draining?  It has been 6 plus years of worry, it has also been the best 6 years of our lives…and when we are not exhausted, scared and emotionally drained we are loving life with our miracle girl, and her pretty awesome little brother.

Katy is currently dealing with acute Grade 3 rejection.

What is rejection?

There are two types of rejection Cellular and Humoral and it appears Katy is presenting symptoms of both.  Therefore they need to treat for both. I mean this little girl of mine…she is always keeping the team on their toes.  It is not common that a transplant recipient would be dealing with acute rejection not once but twice in such a short period of time.  This in addition to the multiple infections Katy has dealt with… (CMV, EBV and the horrible blood infection she had to name a few) are all HUGE and put a great deal of stress on her new heart. 

Katy is being treated with high doses of steroids and also we added in IVIG treatments. Steroids to treat Humoral rejection and IVIG to treat Cellular.  Thankfully Katy has had a very quick response to the steroids and we have already seen increased function via echo.  However all of that is while her heart is still be very much supported with Milrinone and IV Lasix the true test will be when she is weaned from the Milrinone.

Day to Day Play by Play ( as much as I can remember)

Tuesday April 29th

Katy had a field trip at school.  It was cold and a bit drizzly on our walk.  Katy didn’t seem all that thrilled and a bit more tired than usual.  However, we weren’t worried give that this was her second day back to school since she had her tonsils out last month.

Wednesday April 30th

Katy had a great day at school.  Came home and was tired.  Said she was too tired to go to dance. Fell asleep on the couch.  Woke up with a belly ache was hungry had some soup and vomited.  Spent the afternoon early evening on the couch complaining her belly hurt.  Woke up at 7pm and appeared puffy. Puffy (fluid retention and vomiting reason to call the team) Called the team decided we should head in just to be safe… Mike and Katy head to the ER.

Initial labs come back fine… no infection at this time I am thinking it is rejection.  Weight is significantly increased from 2 weeks ago… chest x-ray confirms Katy has fluid on board. IV Lasix is started and it is decided she will be admitted.

Thursday May 1st

Katy’s echo is horrible… the team is very surprised at how poor her function is and how much has changed since her Echo 2 weeks ago. Katy needs to go to the cath lab to have a biopsy ASAP.  Katy is very unstable and everyone is on edge ( except for Katy) She had some funky beats in her EKG that has put everyone on high alert.  Katy’s heart is very sick and she is at an extremely high risk of cardiac arrest.

Katy is so fragile that it is decided that they will not intubate her for the Cath.  She is sedated. She will be admitted to the CICU after biopsy. While in the cath lab the team has a chance to see just how sick Katy is… without the biopsy results the decision is to treat aggressively her Grade 3 rejection.  She is started on Milrinone and high doses of Lasix and diuril… the hope is to let her heart rest.  Dr. Blume prepared us of the possibility that Katy may need Ecmo to help give her heart a break.  Hearing the word Ecmo is devastating to both Mike and I.

Thankfully in her true ROCK STAR fashion…Katy holds her own and we avoid Ecmo.  Katy has a quiet night.

Friday May 2nd.

Long day for us and Miss Katy....lines in...lines out. Steroids are making our sweet sometimes a bit sassy baby girl... A completely out of control monster.
Unfortunately the preliminary results of the biopsy didn't provide a lot of information. They weren’t good samples...so the team does not feel that they (the samples) in terms of grade of rejection can accurately put a number on rejection. The thought is based on her poor function via echo... Her high heart rate and her troublesome EKG we can assume it is a grade 3 rejection.
The plan is to keep trying to get the extra fluid off... Keep the milrinone on board to help support her sick heart and pray that it works continue with the super steroids.

Saturday May 3rd.

I thought the roid rage was rough yesterday!  Katy had me in tears today.  It breaks my heart to see my poor girl so miserable.  I miss my sweet and smiley lovey. The hospital gave us two tickets to the Red Sox game today and I am so excited for Mike and Patrick to have a great day together. Working towards getting moved to the floor today.  I think being out the the ICU will help improve Katy’s mood. 

We made it to the floor! Patrick and daddy had fun at the game and I am finally seeing Patrick I have missed him so much.  Patrick and I are headed to the hotel for a sleep over… ( I am OK leaving the hospital, knowing I am in the building next door)

Sunday May 4th.

It’s amazing what a hot shower and a good nights sleep can do for a person.  Spent the day together up and riding bikes… Katy appears to have turned the corner.  THANK YOU GOD!

Monday May 5th

It's a good morning! It appears Katy has turned the corner. She woke up at 5am ready to start her day with a smile on her face...some pink color on her cheeks...and a hungry belly. She spent most of the night peeing...which is great since we need to get that fluid off... And her face is back to normal. I suspect that her echo will show much improvement.

Echo does show improvement however the team is still being very cautious and has no plans to wean her Milrionone.  This is very discouraging to me.  We really need to be cautious and baby this heart.  I expect this admission and recovery to be much slower then usual.

Tuesday May 6th

Today Katy started her 1st dose of IVIG treatment. It looks like Katy also received a singular dose of IVIG during her last bout with rejection over the summer. I was wrong thinking this was her first dose.  It is unknown at this time if we will continue on with a long term treatment plan of IVIG.

Still no talk of lowering her Milrionone. 

Wednesday May 7th

The decision was made at rounds to lower Kate’s Milrinone to 5.0 down from 7.5.

Katy & Patrick had a great day today! Lots of laps on the bikes and games in the play room.  Katy is definitely back to her old self. Patrick has spent a lot of time at the hospital this admission.  He is that much older and mature that he can handle the long days.

To be continued…

Wanted to share what I have now… will update.