Apr 6, 2012

Flip Flop Rejection

Oh little Miss Mia.  Why do you have rejection so?  
We once again woke up crazy early after 2 hrs of sleep, and drove the canyon to PCMC.
Mia is quite the morning person.  She was chatty and must have not remembered her last experience.  I love this about Mia... she never protests when you would think she would.  She went through all her pre-ops perfectly. 

I must document that for the first time in the history of hospital admittances she was issued a pair of "gripper socks" that actually fit.  I am shocked.  I had no idea they made a kid size.
We have always had the two times too big ones. 

Once Mia took some Versed it was comedy central for JB and me.  Mia was doing bird calls in the waiting room.  We were trying to get her to be quiet, but she just kept making really unique noises and laughing at them.  Yes, we were the disruptive family... but we couldn't stop giggling at her antics.  I don't know why I always forget the video camera, but I would love to have all of her bird calls on video.  Then she started talking to us in complete jibberish.... it was a hoot!

Once we walked her down to the cath lab the anesthesiologist was even making bird calls to join in the fun.  I loved the pre-op entertainment, but am still debating if it was worth the side effects when she woke up.  The first hour after her cath was kind of a nightmare.  She just wanted milk and to "go bye bye."  Once we made it to the other side I thought we would be saved by the promise of a show...but the TV wasn't working.  Eventually we started a video and enjoyed a little quiet.  Once Mia started her voyage in the wagon she was pretty chill from then on.  She sure loves those wagons. 

Aunt Nats showed up to save the day.  She brought Mia this super cute little monkey and sat with her during her echo so I could go to my appointment.  I've said it once, and I'll say it again... WE LOVE AUNT NATS!  Everyone one... every heart baby at least, needs an Aunt Nats.  She spoils Mia, and has loved her like she was her own.

Mia also was given this adorable Minnie Mouse blanket today.  It is a perfect fit.  She is a huge fan of Mickey Mouse club house and has quiet the collection of Minnie things.  She did not have a Minnie blanket, so when they brought it into her it was the first time she smiled post cath.  The child life specialist nailed it!

Ok, results time.  When they paged me post cath they said her pressures were much better.  YAY!!  They went from a wedge: 11, RA 11, and PA 35/16  to a wedge 9, RA 7, and PA 18/9.  I was elated at this news... I figured that because her biopsy showed no rejection last time, that this pretty much gives us fabulous results across the board.  We took Mia to the cafeteria where we got to meet a young girl named Abby and her fabulous mom Michelle.  I love meeting older kids that have had transplants.  Although Abby is being poked and re poked due to line failure, she had a smile on her face and I just wanted to ask her all sorts of questions.  Miss Abby is a beautiful manifestation of Mia's future.  She gives me so much hope.  She is super cute and I just hope she gets to go home quickly.  Michelle and Abby it was fabulous to meet you.  Next time I won't forget to take a picture! :-)

Once we got home, and we both took a cozy nap, the transplant nurse practitioner called.  She said that the results from the biopsy were back and that they showed a stage 1R rejection.  WHAT?????  HUH??? Seriously?  After just having a clean one?  She explained that rejection is patchy, which we knew, but I just thought with the pressures improving so much we would for sure have a clean biopsy.  She said that it is possible that they just collected healthy tissue last time, and now we are getting true results.  They are thinking that her heart just needs a little time and that with the pressure improving they think she is recovering from the rejection.  It does make me nervous that her biopsy is showed 1R, and we are discontinuing all the meds, but I completely trust the team.  They said she will have to repeat a biopsy down the road.  We will be checking her CBC in a few days, and we will try at get a good level of immuno-suppression now that she is switching to a different drug.  I'm a little unsure, but we are off the meds for now. 

Ok, here is the diagram for what is going on with my heart.  Basically... you can read it but, the pulmonary valve graft (donor valve) looks great.  My Aortic root is dilated.  It is at a 4.5... last time it measured at a 4.7.  She said her measurements are at about 4.6.   That is good.  It is not growing like it was.  The issue or "bad news" I guess is because of the leaking valve I have a dilated left ventricle.  So basically the blood leaking is causing my "pumping chamber" to be enlarged since it is having to work harder.  So we will start back up on a the lisinopril.  I just loathe medicine taking... in any form.  I am pleased with the visit, I am glad the root isn't more dilated.  An enlarged heart is not ideal, but we'll see if it changes at the next appointment.  She said if it keeps dilating, then I will have to have surgery.  The heart can "spring back" once the valve doesn't leak, but if it goes too long and too enlarged it can be permanently damaged. No thank you.

I wore my heart mom shirt today. I love all the words on it. You can't quite make them out, but it just says all of the things heart moms are.  Heart moms are my hero's.  I think being a heart mom is a million times more difficult than being the patient.  I know we had some bad news today, but I just feel so blessed.  I know it could be so much worse.

On a lighter note, when we got home we noticed they were filming a movie on main street.  We decided to take a walk up there and meet some celebrities. We did not meet any celebrities, but we did meet some friendly film crew.  We sat and watched for a minute the filming of the12 dogs of Christmas 2.   It was their last night here, so we barely made it.

There were a few cool cars out front.  Ellie wanted to stay and watch the filming for a long time. One of the guys told me that they wanted to film in Utah for the snow, and they get here and there is no snow.  I am amazed at how much equipment they had in front of Lethe's old home.  I heard from a friend that Johnny Depp is in town for filming.  Boy would I have loved to meet him!  Hey Johnny, next time you are filming in Midway, I know some super cute kids that want to meet a real live pirate!  Their mom wouldn't mind being there as well! :-)


Felt Family said...

Hi! I've been following your blog for several weeks now and thought I'd say hi since yesterday at the hospital I made the leap from blog follower to stalker. My husband and I were there with our son for his biopsy and at one point in the day my husband said, "I just saw Mia and her mom over by those elevators." He recognized you from your blog. So I hurried to try and find you but you were gone. Yep...stalkers! :) Anyway, our son had his transplant in December so we're still trying to get the hang of things. He's doing well though and his biopsy yesterday went well. I'm sorry to hear that cute little Mia has hit a little bump. Sending prayers for all of you! We'll keep our eyes out for you at clinic. :) And thanks for your fun, positive blog!

Nancy (Spencer's mom)

Angee and Thom said...

MEEMS Auntie Nat is a dark haired YOU!!! I hope you didn't forget to lift your arms above your head and say WEEEEEE! while you are on this rollercoster

Mimi said...

Nancy- I am so sad I missed you! I would have loved to meet you. LOVED IT! Yes, yes... let's plan a clinic date.

Ang, he he. I know, we totally look alike huh? Amen to the roller coaster!

Brimaca said...

Oh Little Mia. This was definately a roller coaster of a few weeks. You are amazing. Seriusly Mimi, I know you are humble and probably don't want to hear it, but you are an inspiration. To watch your sweet baby endure so much and then still life the rest of us up and make us laugh to boot. I was so impressed this summer watching you parent. I could use a little more time with you to learn from you! See you this summer. :)