Thursday, November 26, 2009

Feelings of Gratitude on Thanksgiving

It has now been a little over a month since Madison was listed for a Heart Transplant. It has been quite a humbling experience. I've never felt so 'blind-folded' in my life. I literally have no idea what is ahead. Yes, we have been educated on Heart Transplants, but every individual is different. And every situation is different. Although our medical team has a specific direction or path that they are following; quite often patients are off the path as they try and meet the specific needs of each patient. I never thought or imagined we would be going through something like this. It's a very surreal feeling. Our prayers are definitely more meaningful than ever.

Another humbling experience is the amount of support we are receiving. It is unbelievable! There are so many good, good people out there. From the moment we found out that Madison would need a transplant, so many have wanted to help. Thank you. Because of your help, we are in the process of setting up a Trust Fund for Madison. This fund will be used specifically for her medical expenses.

A special thanks to Diamond Rental and the employees of Diamond Rental. Each employee has gone above and beyond for our little girl. Again, thank you. It's people like you and a business that truely cares.. that make situations such as ours, a little easier.

we can do this...

Wednesday, November 18, 2009

October 15, 2009.. Meeting the Transplant Team

(Only a couple more entries and then this blog will be up to date..yeah!)

I still find myself stunned and in shock that our family is going through this. For real? I couldn't believe that I was about to meet with the Heart Transplant team at Primary Children' s Hospital. Was I really there for my own daughter?

Mark and I prepared ourselves both spiritually and mentally. We knew we needed to be strong and make it through this appointment. This was 'The Talk' and we were first reminded by Dr. Everitt that a discussion or appointment such as this one only occurs when there are no other options available. We had no idea just how educated on Heart Transplants we would become. We had our list of questions with us, but we didn't have to ask any of them. They were all addressed and in a lot more detail than I imagined.

Our appointment began at about 11:00am and continued for the entire day. Yes, the entire day. Mark and I walked out of the clinic room at 6:00pm. The clinic was closed. We had just spent all day in the Cardiology Clinic. Our appointments consisted of first meeting with the Financial / Insurance Rep., Social Worker, Pharmacist, Surgeon, Transplant Coordinators, and finally Dr. Everitt. Each person spent 45 min. to 2 hours with us. We were completely exhausted by the end. Here is what they all had to say.

The Transplant Coordinators (Michelle and Emily) attended our appointment off and on all afternoon. During one of their 'pop-ins', they explained to us the protocol for being on the transplant list, and / or receiving a heart when one becomes available. First, Madison cannot be sick. (no pressure on me..I now demand hand washing.) Aside from the fact that Madison's heart condition could worsen if she gets sick; they simply will not do the procedure if she is sick at all. She can't even have a cold - nothing. It's too risky and they won't do it. Second, we must always be within 2 hours of the hospital. Following Madison's transplant we will need to stay just as close to the hospital for about a year. Needless to say, we're not leaving Utah anytime soon.

Financial / Insurance Rep: Are you ready for this? Our health insurance is one of the many who don't cover transplant surgeries in Utah. Their reason is political and only has to do with dollars. A transplant is one of the most expensive medical procedures. Because of this, our insurance company has hand-picked certain hospitals within the US that are approved and contracted with them. Denver is the closest contracted hospital for us. (remind me to send our insurance company a Christmas card..) I have contacted our insurance company and they informed me the choice of hospital was based on fatality rate and cost per surgery. Denver can do it cheaper than Primary Children's. K-remember the rules above.. we have to live within 2 hours of the hospital and have to remain just as close for up to a year following Madison's surgery. It became obvious very fast that our family would have to re-locate to Denver. OR Madison and I would move to Denver for, who knows how long, and our famiy would be seperated.

Knowing this was Plan A, I tearfully asked if there was a Plan B available. I was so scared that this was our only option. I couldn't imagine how we were going to coordinate this. Were we really being asked to seperate our family? The Financial / Insurance person explained that Plan B would be applying for Medicaid for Madison. We applied. Madison's heart diagnosis qualified as a disability and Medicaid now serves as her secondary insurance. Medicaid has only approved coverage until her surgery. Once Madison receives her new heart, she won't have her disabilty anymore and Medicaid won't cover her. This is 100% ok with me. I am relieved and thankful that our family is able to stay together. Now we are definitely not leaving Utah for any reason!

Pharmacist: Following Madison's transplant, she could be taking 7-12 different medications. Half of these medications consist of steriods, blood thinners, rejection medication, and antibiotics. The other half of the medications are given to treat the side affects from the first half.

Surgeon: After an exhausting day, we had the opportunity to meet Dr. AK. I would meet with him again and again and again. He is brilliant and confident in the surgery he performs. He made Mark and I feel so much better. The feeling I felt while meeting with him, confirmed that Madison will be ok. She's in good hands. Dr. AK described in great detail the process of what happens from one life to another. He explained that in most cases, once the new heart touches warmth, it begins to beat on it's own, without any assistance from modern medicine. Dr. AK said, "God created the heart to beat and it simply knows what to do." As I have read other blogs, he was right. Many hearts simply start beating on their own. It is absolutely amazing. Dr. AK said it's a miracle and he has been given the privilege to witness it numerous times over. As he contined to explain this process of what happens between one life to another, I remember thinking how in-tune all medical staff must be when a transplant takes place. I thank him for his time that day and I'm thankful for the opportunity I had to meet him.

we can do this...

Sunday, November 15, 2009

October 8, 2009... The Phone Call

I look back to this day and I'm still 'taken back' by the phone call. This was a phone call that every parent, every mom, prays to never receive. It was Dr. Everitt; I was excited that she was calling. It never crossed my mind that she might be calling for a reason. I definitely wasn't expecting the news she was about to tell me.

To back up a little bit, Madison had just seen Dr. Everitt the day before (October 7). It was a routine appointment with the typical tests administered (Echo, EKG, blood work). Overall, our appointment went well. There was one small red flag... Madison still wasn't gaining weight. This did worry Dr. Everitt, but we both concluded that things were going well. Madison wasn't showing any other major 'heart failure symptoms'. Dr. Everitt said she didn't need to see Madison until December. I was thrilled... December! Really? This was going to be the longest time between appointments we had ever gone.

The next morning I received 'the phone call' from Dr. Everitt. She explained to me that Madison's 'heart failure symptom' of not gaining weight was nagging at her. She had a feeling that something more might be going on with Madison's heart. So, upon coming to work, Dr. Everitt took some time to study Madison's echos. Instead of comparing each echo from month to month, she decided to only look at her current echo (the one she had on October 7) and compare it to an echo in March. She then explained to me that when looking at the echos with an 8 month gap between them, it was obvious there had been a dramatic decrease in her heart function. Her heart is working too hard and her valves have started to leak. As I cried, Dr. Everitt kept saying, "I'm so sorry to have to tell this to you over the phone." She then informed me that it was time to list Madison for a heart transplant.

Dr. Everitt and I continued talking for about 20 minutes. Actually, I think I just cried and she talked. I remember asking Dr. Everitt if she had the right patient. I know that sounds silly to ask, but Madison looks so good. I understand that she has a heart problem, but is it bad enough for a transplant? The answer is yes. Dr. Everitt reviewed the 'heart failure symptoms' that Madison is currently showing..

1. Slow (very slow) weight gain.
2. Overall development is slower than an infant/toddler her age.
3. Madison experiences moments of sweating. (I think these are moments when her little heart is working too hard, or is tired..)
4. Overall size of her heart is too big and is putting pressure on her lungs. (X-rays will be taken often to ensure there isn't any fluid build up in the lungs or around her heart.)

Dr. Everitt explained to me that her symptoms could get worse and there are other symptoms we should watch for. Her condition will definitely worsen if she gets sick. We then made an appointment to meet with the Heart Transplant team for October 15 at 10:30am.

Following my phone call with Dr. Everitt, my emotions became stronger as I now needed to call Mark to inform him of the news. Mark ended up coming home early from work. We sat on living room floor and played with our kiddos. Emotions ran high as we both found ourselves crying off and on that day. We had just received the worst news ever and have no idea what's ahead. We are so scared, but will do whatever we need to for our little girl. The cute part of the story was that Madison was so happy; she had no idea what had just happened.

October 8 was also our 10-year wedding anniversary. Happy Anniversary, Mark. I love you. (we can do this..)

Madison's Heart History

I thought I would have an entry just on Madison's heart history. This will kind of explain why we are sitting on a Transplant List. As I think about the events that have happened from the time she was born until now, it gives me goose-bumps. There are so many moments that were answers to our prayers and stepping stones to the next event. I had no idea until looking back.

We live in Provo; Cooper and Madison were born at the University of Utah Hospital. How lucky was I to have delivered my babies at a hospital where all the speciality doctors were located. Litte did I know, I would need them!

Cooper and Madison were born 9 weeks early. This resulted in us living in the NICU for 7 weeks. Living? Yes, we lived there as we spent 10-12 hours each day "coaching" our babies on how to suck, swallow, and breath on their own. Once they accomplished this, they were ready to come home. (this is typical for preemie babies) Mark and I showed up everyday with our whistles and referee outfits on. We wanted our babies home as soon as possible.

While in the NICU, all babies are hooked up to every monitor possible. It is because of the monitors that her first heart episode was noticed. At about 2 weeks old, alarms went off and doctors immediately ran over to our little girl. Madison had gone into SVT (Supraventricular Tachycardia). This was caused by abnormal Cardiac Arrhythmias and resulted in a diagnosis of WPW (Wolfe-Parkinson White Syndrome). Over the next several weeks, Madison managed to have 3 episodes of SVT while in the NICU. Each episode would last about 15-20 minutes and her little heart would beat at 230-250 beats per minute. (average newborn heart beats at 100-160 beats per minute.) I now look back and think.. if Madison was a full term baby, would her abnormal arrhythmias have been noticed? I don't think think so, simply because she wouldn't have been monitored so closely. I then find myself thankful (??) for our NICU experience.

Madison now takes medication (Atenolol) to control her arrhythmias. She is also monitored periodically via a heart monitor and we listen to her heart daily with a stethoscope. To our knowledge, she hasn't had any SVT episodes. It is difficult to notice when an infant experiences SVT as they don't normally show outward symptoms.

Because of Madison's WPW diagnosis, her cardiologist (Dr. Gray) ordered additional tests (EKG, Echo (heart ultrasound), CT scan, and an MRI) to rule out any other diagnoses. It was during these tests that he discovered that her heart muscle was too thick. Madison was then diagnosed with Hypertrophic Cardiomyopathy in addition to Wolfe-Parkinson White Syndrome. Dr. Gray then referred us to Dr. Everitt.

We have now seen Dr. Everitt for about a year. Our appointments with her include routine Echo's, EKG's, heart monitors, blood work, and simply monitoring Madison's condition. Things were going well until October 8, 2009.

Friday, November 13, 2009

Purpose of Blog..

Dear Friends and Family,

Mark and I have decided to blog Madison's journey of her heart transplant. You are welcome to join us; in fact, please join us! Although there are many families who have gone through this before, I feel like we are treading in an uncharted territory.

Madison has been on the list for about 3 weeks and already we have received so much love and support from everyone. Thank you!

My goal is to update her blog over the weekend and then continue from there.