Thursday, September 29, 2011

Picking up the Pieces

I am sorry to wait so long to post. I know that we have many wonderful people checking in on Miss K. Truth is that we really don't have much more info than we did before.

Today she finished her 6th dose of IV steroids. For the first time ever.....she wanted to come home. Normally, she cries when its time to leave her friends at the hospital. She was ready to get back and play with her brothers.

Kaidence is physically doing well. She has been pretty tired the last 2 days but cardio seems to think that the rejection may be catching up to her. Tonight, being home with her brothers seemed to lift her spirit and level of energy. She even ate a good dinner (Thanks to one of my MANY wonderful friends). In 2 weeks we will try to get back to her normal activities and let her live as normal of a life that we safely can.

We bumped her echo up a day earlier because of the fatigue. Her echo still looks great. When people have Coronary Artery Disease certain parts or walls of the heart don't have good movement but Kaidence's are moving well. Her heart just hasn't gotten the memo yet as to how sick her arteries are. I pray it stays that way!

The shock is still so raw but things are starting to set in a little more. We have talked with Kaidence and she will help us make the decision on whether or not we list her for a new heart. She knows that either way we will be ok. Now some may think that you cannot let a little 4 year old help make this decision BUT Kaidence is different. This little girls understanding in some areas is far beyond mine. She knows her heart is sick but she doesn't feel sorry for herself. She lives her life to the fullest. She is so happy despite all she goes through. Over the years we have talked about death when she has brought it up. She tells me what she thinks heaven will be like. When letting her know the other day that she could help us choose what we should do she said that when her heart got sick that she wanted to and be with Jesus. I told her ok and then we talked some more about what she thinks heaven will be like and who will be waiting for her. I don't ever want her to feel like she cannot move on because of how sad we will be. However, the next day she woke up out of bed and one of the first things out of that little girls mouth is "I want to get a new heart".

So as of now and if or when the time comes we will re-list her for a heart. She may change her mind and that is ok too. If she wants to fight to live, who am I to tell her she can't? I don't know what Heavenly Father has planned for my baby girl. I hope and pray that if she has to leave us for this time that it will be in a peaceful way and time. I don't want her to get that sick again. This little girl knows she is loved and treasured. Her spirit is precious. She has no idea of how many hearts and lives she has touched but one day she will know.

The boys are hanging in there as well. I have such amazing boys. I am so proud of them. We are trying to be honest as to what could happen but focus on the now while still keeping that communication open for them to express themselves. I don't want them to be afraid to talk to us or ask us questions. Kids are smart and they need honesty on their level.

Monday we will have another echo. If ANY changes are detected they will re-list Kaidence. Her next heart cath will be on October 27th. I hope and pray that somehow and someway this disease will no longer be or that it will lessen in severity and she can be safe. It shouldn't happen but I know it can happen, I just don't know if its part of Heavenly Fathers plan for her.

I want to thank you for the love and kindness you have shown. Your prayers are lifting me out of the torment that has had my heart for the last few days. I ask that you also please pray for her wonderful medical team. I pray that they will be in tune to promptings even if they may not understand the reasoning. Your prayers for our family are the greatest thing we could be given at time. Mike and I are still trying to figure it all out.

"Be not afraid, only believe" Mark 5:36 If Kaidence isn't afraid, why should I be?

Tuesday, September 27, 2011

The Post I Hoped to NEVER Post

WARNING: This post is not sugar coated. So if you are looking for a positive post....please stop by another day!

Yesterday's heart cath turned out to be a nightmare. I keep asking myself it it really happened the way it did. We left for the hopsital at 5:30am for our heart cath. I felt such great peace and had no worries at all about the outcome. I honestly felt that it was going to look great and that we wouldn't have to return for a whole year. My mom was going to meet us up at the hospital to plan out DisneyWorld trip for this November. Instead everything started falling apart.

E the transplant coordinator came out to get us instead of having the pager they give you alarm. I knew something must be wrong. When we got there the whole transplant team was awaiting us. They shared the news that Kaidence has Coronary Artery Disease. It was not seen on last years biopsy but it is rather obvious that it is there. They showed us last years pictures compared to this years.....the difference was obvious, even to the untrained eye. Cardiology talked about the possibility of re-listing Kaidence for a new heart. It would be harder for her to get a heart the second time around because she has developed antibodies against 65% of the population. That narrows the donor pool drastically. Or we could choose not to re list and just enjoy the time we have.

One thing about this disease is that at any given time she could have a heart attack or stroke. It was explained to me that they would likely be fatal. They said that if this did happen she would die quickly and painlessly. I cannot believe we even had that conversation. It terrifies me.

This disease is more common in transplant patients years down the road. Why she has one knows. It could be the rejection episodes or something else.

To top it all off, as Mike was getting the car to leave the hospital cardiology chased us down to tell us that Kaidence was also in rejection and that she needed to stay in the hospital for treatment. We should be here until Thursday. She will once again be on house arrest. So if you are know the drill by now (especially with winter coming.)

1. Medications- They are putting her on 2 new medications (for the disease and more for the rejection)in hopes that they will help slow down the disease. I asked how well they worked. The reply was "if they worked great, we would have all of our transplant patients on them." So I guess it sounds like a last ditch effort.

2. Watch and wait- Did I ever tell you how I LOVE waiting? We will treat the rejection and CAD. In about a month (right before we are supposed to leave to Disneyworld) she will have another heart cath to check if the disease is progressing. If it looks like it's still progressing then we will decide if we want to list Kaidence for another heart. I don't know what we will decide.

3. Frequent Appts- We will keep in close contact with cardiology. She will still get her echos and they will closely watch her heart function. At this point, her heart function is good and has not been affected. If things start to change, that would be another indication of that things are getting worse.

The crazy thing is that everyone thought that things were better than they have been in awhile. Her last few echos have looked great and shown improvement in function AND her leaky valve. How can all this be getting better but then we have this lurking in the background? It just doesn't make sense.

We are tired, heartbroken, uncertain and I am trying so hard to not be angry. I don't want to be. I cannot help but wonder why? I think I am still in shock and unsure of how I can do this again. How my family can do this again. I have great anxiety over her having a heart attack/stroke and me not being able to save her. I feel numb. How do you move forward with 'normal' life? These are just some of the nonstop things going through my mind. What we will do....I do not know.

I pray that I will start to feel the love and comfort of our Heavenly Father. I pray for guidance in the days to come, I pray for another miracle and I pray for peace. I pray that Heavenly Father still knows my heart, he knows I want what is meant for Kaidence. I pray that he will take care of everything and that I may be prepared for whatever comes our way.

I feel that I am always asking for prayers. I need them, Kaidence needs them...our whole family needs them. I am craving the comfort and peace they bring.

We are so grateful for the many wonderful years that we have been given by Devohn's family. The heart that is in her little chest has given us so much. It is because of them that I have had the opportunity to know my daughter, her personality, her love of life, her strength...her Faith. This is hard on them as well. Please remember them in your prayers.

I will post when I know more....