Cardiology Appointment 27

Madison's journey continues to be successful as she just had cardiology post transplant visit number 27.  (about 41 appointments since birth)  Sometimes I just have to laugh.. that is a lot of appointments!  Holy Cow!  But I am also grateful; there are other heart babies who have had a lot more visits.
Madison's appointment went well.  We were able to meet the new cardiologist.  I can't remember her name.  Has anyone met her yet?  She was nice, but I do miss Dr. Everitt.  I get so attached and don't like change, especially when it comes to doctors. 
Although Maddie's appointment went well, it was during this appointment that I realized... she's officially 2!  If there was a hidden camera in our room, someone was laughing pretty hard at us.  Madison was into everything!  I came prepared for her appointment.. I had a whole bag of toys, books and snacks packed just for her... she didn't want any of it.  Instead she wanted to rearrange all the baby hospital gowns.  Yes, the ones that are sanitized and folded very neatly in the exam table drawers.  Madison is also going through a phase of taking all of her clothes off, including her diaper.  She can undress herself faster than I can blink, so at one point, she was completely naked and rummaging through stuff.  She also wanted all the band aids and binkies.  For an entire hour,  I was guarding the exam table like it was a hot stove, trying to redirect her.  It was exhausting and all could think about was my diet coke sitting in my car.  No laughing.. we ended up coming home with three binkies and a handful of band aids.  I'm not even going to ask if we were charged for them.   
To give Madison some (small) credit.. we did have a 45 minute wait to see the doctor.  And her cardiology appointments are usually about 3 hours long. 
In addition to a busy two year old and a long appointment, the lab messed up on Madison's lab order.  Few things tick me off more than a lab tech that can't read doctors orders.  It was over an hour wait for the IV team, so I took a deep breath and let the lab tech draw Madison's blood work.  I even pointed to the exact vein that Madison prefers.  Again, she didn't cry.  It went well until they called Madison's name over the intercom at the hospital for us to return back to labs.  Upon returning, I was told that they forgot to get her Prograf and Cellcept levels.  What?  Were they kidding?  Those are the two most important levels for a transplant patient.  I explained to them that I already gave her meds to her and so we would need to redo her labs the next day.  And that is what we did.  Dang it.  I was ticked. 
Her labs have lead to more Prograf drama.  Nothing serious, just transplant drama.  Her Prograf level came back quite low.  I've decided that if drugs are a gender, than Prograf is definitely female.  Anyway since increasing her Prograf, she has broken out in a bumpy rash?  Has anyone seen this before?  It looks like goose-bumps.  They are white little bumps; not red, but it is spreading.  It started on her bum cheeks, thighs, stomach, upper and under arms.  Today her ankles were covered and she has a few bumps on her nose.  It's not very noticeable unless rubbing her skin, or looking for them.  Maybe it's eczema??  I did call the transplant coordinators and they said it sounded like something Prograf would do and they did increase her dosage quite a bit.  Maybe?  I hope she's not allergic to Prograf... I really have no idea.  They asked me to watch it and let them know if it gets worse.  We have a pedatrician appointment on Monday, maybe he'll know what it is..  The good news is that it doesn't seem to bother her. 

Let me know if you have any suggestions..

Green Light...

FINALLY... AN UPDATE! 

I know.. I know.  I'm in trouble with many of you for not updating Maddie's blog.  I apologize. I'm loving the blogging world and getting to know other families, but neglecting mine at the same time.  So here it goes.  It has been awhile, so if you will, please travel back to May/June timeframe with me.

I wanted to go back this far because this is when Madison finally hit a huge milestone...about two weeks before she turned two, Madison started walking!  Yeah!  I was so excited!  It completely amazes me how much Madison's broken heart affected her development.  (especially watching her development along side a twin.)  There is a huge difference.  Prior to transplant, her little body was too tired and weak to meet those much needed milestones.  I've learned that those milestones are important and actually must be met throughout development.  Post transplant, Madison has done amazing and is slowly catching up with her brother.  

Fast forward to June 10.  This was Cooper and Madison's birthday.  I was an emotional mess that day.  (since Madison's transplant, I can become an emotional mess at any moment... it's becoming embarrasing..)  Last year at this time, I had no idea just what our little family was heading for.  I had no idea that we were facing a hurricane...head on, BUT we made it!  

I loved Cooper and Madison's birthday.  Although we had a lot to celebrate, I didn't want to have a traditional birthday party this year.  I just wanted to spend the entire day with my little family.  Mark laughed at me as he would catch me tearing up every now and then.  I loved being a mom on that day.  I tried so hard to soak up every minute. 

Cooper and Madison at the Aquarium on their birthday.  June 10. 

Cupcakes! 

(dang, I didn't realize that I can clean highchairs so well.  Those are shiny!)

We do have blinds on our windows,

however Cooper insists that the blinds be raised each morning.

Madison had hearts on her cupcake. 

I am such a heart nerd.  It's embarrassing.  But I hope my nerdy phase never ends.

I'm still laughing... Cooper's cupcake is cute. 

I asked for monkeys on his cupcake.  I think those are monkeys??

I'm in love with this picture.  Madison is so beautiful. 

Dr. Everitt gave us the green light to travel outside of Utah. 

We quickly ran away to my parents cabin near Jackson Hole.  This picture was taken on their back porch.

  It is so beautiful and peaceful there.

I do remember thinking... I wonder where the nearest Cardiologist is?  That part was a little scary for me.   

My Big Boy.  He is absolutely adorable. 

For the most part, his personality is quiet and gentle.  Although his recent actions are beginning to create some stories.

Cooper knows every body part, including eye lashes and eye brows.

Madison is playing at the splash pad at Thanksgiving Point. 

At age two, she is modeling her 12-18 month swimming suit. 

 (Our heart babies are so small...)

Swimming Lessons! 

Cooper and Madison attended 4 weeks of 1-1 swimming lessons everyday.  I'm exhausted thinking about those 4 weeks, BUT I really feel like it helped with Madison's development.  I highly recommend this to parents.  (Cooper and Madison are the first two babies.. I mean toddlers.. nope babies sounds better.)

Madison is diving (sort of).  Once Madison hits the water, the instructor lets go of her.  Madison knows to roll on her back, put her hands behind her head, and float to the top.  This took awhile to learn, but she can do it now.

Captain Madison.

Fireworks on July 24.

8:00pm meds post transplant.  December 2009.

Can you believe this?  When Madison came home from transplant, she took 13 meds.  I administered (such a big word for a mom) meds every 2 hours from 8:00am-8:00pm. Madison would then have a break until her midnight dosage.  And then the game would start again the next morning. 

Madison's current 8:00pm meds.  July 2010.

Madison no longer takes meds every 2 hours.  In fact, after her 10:00am meds,she doens't have any until 4:00pm.  That big gap of time feels so weird.  I keep thinking that I'm forgetting something.  Madison currently takes 7 meds 6 times per day.  Piece of cake.

Not only has Madison's meds tappered off, but so have her Cardiology appointments.  Post transplant, Madison had Cardiology appointments two times per week.  As of our last appointment on July 8, Madison does not have to return for 6 weeks.  This is the longest timeframe between appointments that Madison has ever gone in her life.  So good...

more to come... 

Update in Progress...

Hi there...

I feel terrible (as I should) for waiting so long to update Maddie's blog.  But wait no more, an update is on its way.  I'm in the middle of a post and plan to finish it tomorrow...

(I just wanted to say hello..  I miss everyone) 

An Honorable Night (and an update)...

Tonight I find myself once again emotional as I'm completely amazed at how well Madison is doing.  I'm grateful and I'm humble.  I fall in love with her and Cooper more and more each day.  There are times, my love for them is so deep that I can taste it.  (I think every mom experiences that..)  I absolutely love being a mom.  They complete me.  And because of them.. because of my journey with Madison.. I'm beginning to understand the purpose of life a little more.  I'm thankful for that.

We finally had a Cardiology appointment today.  Because Madison's biopsy counted as 'seeing the doctor', we have not been to an actual clinic visit for 6 weeks.  Ahhh!  It has felt SO weird!  But.. we went today and now my life seems back to normal.  :)  Madison's appointment went well. 

Good News:  This afternoon I received a phone call from our Transplant Coordinator informing me that...For the first time EVER, Madison's Prograf level was perfect!  Timeout:  Remember how Madison switched from the generic form of Prograf (Tacrolimus) to the real stuff?  That did help and the switch was needed.  But her levels are always a little low.  Therefore, with each blood draw, we have had to continually increase her Prograf.  BUT NOT TODAY!!  This also means that Madison does not need any blood draws until our next appointment in 3 weeks.  Madison has had her blood taken every week since November 30.  That is a lot of pokes for my little girl!  And now she gets to go 3 weeks without any pokes!  HOO-RAH!
_______________________

An Honorable Night:

A couple months ago, I received a phone call from the American Heart Association.  They were wondering if I would be willing to speak at the American Heart Association Heart Ball.  The event was scheduled for Saturday, May 15.  As I said yes, the butterflies of being nervous began to arrive, along with heightened anticipation, combined with adrenalin.  Needless to say, I was very nervous.  

The sole purpose of the event was to raise money for the American Heart Association.  And with my permission, they incorporated Madison in every part of the evening in hopes that her heart story would entice people to donate.  They showed a video and then I spoke for about 10 minutes.  I simply told Madison's heart story and then introduced her (over the podium) to 350 people.  

Little did I know that it would be such an honorable night.  After I spoke, all 350 people wanted to see her.  Because they knew she was a transplant baby, they were polite in keeping their distance and not touching her too much.  As people walked past us, I could hear them say, "there's the miracle baby."  I loved that evening.  And it was fun. 

One of the attendees to the event was Elder Russell M. Nelson.  He was honored that night for his development of the Heart / Lung Machine ( or Bypass Machine).  A patient is put on the Heart / Lung Machine when undergoing extensive surgery (i.e. open heart surgery, transplants).  We were able to speak with him for a few minutes.  Speaking with him was the highlight of the night for me.  Spiritually and intellectually, he completely understood everything that Madison has been through.  It was such a privilege to speak with him.

Below are some pictures from the event.  We were so involved with everyone that evening that we forgot to take pictures.  And I was nervous.. a camera was the last thing on my mind.  :)  I'll post more pictures as I snag them from relatives who were also at the event.

Enjoy. 

/

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.

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.      

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!