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 it.....no 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 sick......you know the drill by now (especially with winter coming.)

THE PLAN
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....