Wednesday, April 14, 2010

Heart Biopsy Results: Perfect

I'm pleased to announce that Madison's Biopsy went well. She continues to amaze me everyday! I have a permanent smile on my face and quite often... tears of happiness. It's been quite an emotional day as I've thought about her perfect, perfect journey...

We had the opportunity to visit with Dr. Gray as the anesthesiologist was preparing the Cath Lab for Madison. Dr. Gray was thorough as he went over exactly what the Biopsy would entail and other things he would be looking for. One thing that is looked at are the pressures in her heart. This can (sort of) be compared to an exact, pin-pointed blood pressure. Knowing the pressures within her heart can also determine whether or not rejection is taking place. Just like a typical blood pressure, one wouldn't want the pressures to be too high, or too low.

Once the Cath Lab was ready, I had the opportunity to carry Madison in and be with her until she fell asleep. Thank you to our anesthesiologist for allowing me to do this.

Following her procedure, Dr. Gray was again thorough in explaining the results. Madison's pressures within her heart were high. This could mean that rejection is beginning to take place, OR it's a new heart in a new environment and simply needs more time to relax and settle. So... only knowing this much information, Mark and I continued on with the day. Dr. Gray wouldn't know anymore information until the Biopsy results came back.

As soon as Maddie could drink and felt well enough, we headed to the Cardiology Department for an echo and then to X-Ray for a chest x-ray. This was all routine and part of having a Biopsy or Cath Lab visit. It was a very long day and I was exhausted when we got home.

Last night, we received a phone call from Emily, our transplant coordinator informing us that Madison's Biopsy came back without any rejection! Mark and I were thrilled. Her little heart just needs more time to relax and settle in. So... it's ok that her pressures were high (this time).

This afternoon, I received another phone call from Emily informing us that Madison's labs came back absolutely perfect. Emily then discontinued 3 medications! Madison came home from transplant on 13 medications and now only takes 7. We are very happy and pleased with all results. One of the medications that was discontinued was her steriods. This means that we were given the green light to participate in life again. Yeah! No more lock down! WE ARE FREE!

For those who don't know, Madison does continue to take immunosuppressant medications. Prograf is one of them. She will take these medications for life. She will always be more susceptible to getting sick compared to a typical child. I will always be the paranoid mom who carries sanitizer everywhere I go. However, with this in mind... life goes on and we just be extra careful. And I'm grateful for this.

With all of this good news, Mark and I had to celebrate! We gathered our small family.. this time, Madison included and went to Red Robin for milk shakes. And I proudly walked into the restaurant with my Clorox Wipes, hand sanitizer, and high chair cover in hand.

From here, Madison continues with routine Cardiology appointments every two weeks and labs every week. Her next Biopsy will be in 6 months. After that, she will have a Biopsy every year for life.

Thank you to our friends and family for your prayers and support. Thank you to our donor family. We love you.

Sunday, April 11, 2010

Heart Biopsy

I keep forgetting to post that Miss Madison has her FIRST HEART BIOPSY this Tuesday... April 13.  Yes, I'm fulfilling my roll of the typical nervous mom!  I don't like these procedures...I don't think anyone does.  The anticipation and the 'what if's' drive me crazy.  We have requested that Dr. Gray do the procedure.  We absolutely love Dr. Gray.  He is brilliant and one of the best doctor's in the Cardiology Department.

Heart Biopsy Education:
For those who don't know, a Heart Biopsy is completely normal and simply part of her transplant journey.  I think that if everything looks good, she will have a biopsy on a yearly basis.  But I'm not sure, I'll have to ask. 

The main purpose of the procedure is to check for any rejection.  I'm assuming that the doctor's will do an overall check of things as well.  To my knowledge, Madison hasn't had any signs of rejection.  Signs of rejection would include some of the same symptoms of Heart Failure (throwing up, lethargic, sweating, low energy, no appetite).  If rejection was occurring, her heart may sound different as well.  We listen to Madison heart everyday and it sounds the same each time.  One could also be experiencing rejection, but not show outward symptoms and that is one of the reasons why biopsies are done. 

The procedure is done in the Cath Lab.  (Madison has been to the Cath Lab one other time)  She will be put completely under and the doctor's will access her heart through her two main arteries.  This is called a Catherization.  One arterial location is in her neck and the other is upper thigh (groin area).  The procedure usually lasts about an hour and then we get to hang out in Out Patient Recovery for about four hours.

Don't worry.. I have the new jammies purchased.  Madison always gets new jammies, or comfy outfit for any surgical procedure.  And as her biggest supporter, Cooper gets a new pair of jammies as well.      

Friday, April 9, 2010

Cardiology Appointment OR Play Group

(yeah.. the picutres worked.  I'm so excited)
Madison continues to do absolutely AMAZING!  I stand in awe at her recovery every single day.  She is a completely different baby since receiving her new heart, full of energy and busy... very, very busy.  She even says, "busy, busy, busy."  I tell everyone that one of the happiest days was telling Cooper "no-no" to playing in the garbage can, only to find that it was Madison making the mess. 

Below are some pictures of our medical team in action.  I'm missing some medical staff, but I'll grab them for another post.  For the ones listed below, I just want to say thank you!  You always go the extra mile for Madison and I appreciate it.  Thank you for making our transplant journey enjoyable, or as enjoyable as it can be.  Madison absolutely loves coming to her appointments; she loves seeing everyone... unless you're running late and her nap time is interrupted.  Madison loves you.  Because of that.. I love having you as part of our "hospital family".  Thank you.

Just arrived at the hospital
Madison is watching Mickey Mouse and waiting patiently for Shawn.

Yeah, Shawn is working today!  This is Shawn and he is part of the IV Team.  If available, he always does Maddie's labs. 
Madison has never cried when Shawn draws her labs.

My Big Girl.  No tears..

She does look a little worried. 
 I think it's because I was playing photographer and not standing next to her.
Madison then demands that all pagers be handed over. 
It doesn't matter how many toys and books I bring for her,
by the end of her appointment she has demanded everyone's pager.

Next, Madison has her weight taken.  She now weighs 20 lbs. 12 oz.

Then she practices some yoga while having her echo.
This is my favorite picture.  After her echo is snack time. 
Doesn't it look like she is thinking, "Has anyone seen Dr. Everitt?"

This is Emily, Madison's Transplant Coordinator.  Madison loves Emily.  At each appointment, the two of them compare outfits.  They ooh and aah at each other.  This particular appointment, Madison did not approve of Emily's shirt and made her cover it up with her blanket.  I'm still laughing.  It was hillarious! 

Thursday, April 8, 2010

Some Thoughts...

Does anyone else become highly emotional every time they post?  I'm beginning to think that blogging has become my therapy.  The minute I begin to write a post, the tears start coming and I cry through the entire post.  Please tell me that this happens to other moms... (if not, just say it does.. then I'll feel better.)

During one of Madison's clinic appointments a couple weeks ago, I was visiting with another heart mom who mentioned that she feels as though she's going through some kind of Post Traumatic Stress.  Now that the war, OR Heart Transplant is over, the stress begins to release and your guard let's down.  And as this happens, the floods of emotion begin to come.  As a mom, one cannot believe what they themselves and their child have just gone through.  Sometimes, I even ask myself... "did we just go through a real heart transplant?" 

Because of the hussle and bussle of Cardiology Appointments, I didn't get a chance to thank this mom for talking with me.  It was so nice to hear that another mom was feeling the same way as me.  (yeah!  I'm not going must be normal..)  The words this mom said to me, were the exact words that I needed to hear.  Thank you.

This "Heart Transplant Journey" has been quite the journey.  I definitely have learned more about life, the purpose of life, and the Power of our Heavenly Father in the past year than any lesson has ever taught me.  This has definitely been a life changing experience.  I'm so grateful for the moms and kiddos whom I've met; they have changed my life.  They are Heros in my book. 

Of course, it's not over, but I do feel as though I'm at a Pit Stop.  I have time to stop and breath as things have slowed down a bit.  Thanks to Prograf levels, Madison's appointments are now every two weeks with blood draws every week.  That's not too bad... 

Below are some pictures of Madison at a couple appointments.  Her personality cracks me up.  I swear she thinks we are there for Social Hour, or better yet... Play Group.  Ugh!  I can't get the pictures to work.  I'll post again tomorrow, I promise.

Sunday, April 4, 2010

An Easter Miracle for Mason

Happy Easter to everyone.  

My heart is full and it's hard to control the emotions that I feel at this time.  A while ago, I posted  about a little heart kiddo who has become my Heart Hero.  His name is Mason and he is only a couple months older than Madison.  He has already endured quite a tough journey with his heart.  But he is a tough kid and today Mason is receiving a NEW HEART.  An Easter miracle is taking place for him and his family.  

Please keep Mason and his family in your prayers as he will be in surgery all day today.  This is so hard for a family to go through.  Mason's family will be updating his progress throughout the day on his blog.  You are welcome to click on his name (Miracle Mason) and read more about this cute little guy.     

Also, will you please keep the donor family in your thoughts and prayers today.  As a parent, I can't comprehend what a mom goes through as their baby passes away.  But because of this family's choice, a miracle is taking place today.

(I promise to give a Madison update later today..)