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 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....

21 comments:

Me said...

I have no words to express my heartache for you. I am so sorry you and your family have to go through this. It is every transplant moms nightmare. I pray for the peace that I know that Savior can give and I pray it will come soon. The hospital is a hard place to feel peace and direction but I know it comes and you know also. We love you so very much. I hope it is ok with you if I ask my family to fast and pray for Kaidance and your family. Hold on sweet lady.

Clemments Family said...

I am at a lost for words, my heart is broken for you and your family. I know how much you love Kaidence and I remember talking to you and thinking the world of you. A miracle has happened once, so we'll pray for another one. My prayers are always with you and will continue to be.

Abby said...

Oh my gosh, shauntelle, I am so sorry to hear this. Sweet kaidence, you, and your family are in our prayers and thoughts.

Jenn said...

I could just leave your blog open and listen to the music all day. It brings such fond memories of the comfort and peace of being surrounded by people who cared for us and understood the pain we were feeling. You are certainly one of those people, and my heart aches that you are going through this now. I wish I was next door and could try to offer the strength you gave me. We love you so much and are asking for the power and peace of Heaven to be with you all.

cici said...

I will be Praying for a Miracle for your sweet baby girl. I know God will listen.

Kyle and Alli said...

My heart ACHES for you. I can't imagine hearing those words and no parent ever should have to go through this all over again. We will absolutely join with many others who love and care for you all in prayer. Surely there is one more miracle in store.

Mimi said...

Oh my heart! I am so sad. I will pray and pray and pray. She is so strong. So are you! Big hugs to you both.

Becca said...

I am so very sorry Shauntelle. I can't even imagine. We are praying for you all.

Djinni said...

It breaks my heart to hear what you are going through. Don't ever feel like you are asking too much for us to pray for you. Praying is the easiest thing to do and sometimes the only thing I can do. Please let us know if we can do anything else. I will pray for you and your whole family. Just hearing this tears me up inside, I can only imagine how sick you feel inside. Heart Hugs, Djinni

Emily@Little Forever Family said...

Wow. I am truly at a loss for words. I just see that sick little girl and than seeing her so strong and 100% better, and I am in just unbelief. Miracles happen. Sometimes the miracle is not what we had in mind, but through the pain, we grow. We are praying for our little heart buddy that things will work out and the coronary artery disease will be kept at bay. Love you guys.

Julianne said...

Oh, Shauntelle. I am so sad for you. I'm sure you hardly remember me, working at the front desk when Kaidence had her transplant, but I think of you both often. I will keep you in my prayers, of course. Life can be so so hard, but you can do hard things. With Heavenly Father, you can do ALL things. (I'm sure you know that, and it might not help so much to hear it right now, but I know you have faith and I know things will work out).

The Fam said...

I'm so sorry. I cannot even fathom your anguish with this news. My heart hurts! I will keep Kaidence and your family in our prayers. I'm certain this is part of our Father in Heaven's plan and that he will comfort you know matter the outcome. HUGS!

Angee and Thom said...

So sorry, what poopy news! We will pray for you ALL!

Melynda said...

We are praying for her and your family! Just seems like when life gets to good and normal things change to remind you to be thankful for all you have. Keep us updated

Heart hugs

Jackie said...

Shauntelle Ryan and I are shocked and in such disbelief after everything, this little girl has seen so many Miracles:( She truly is AMAZING and beautiful in so many way's.
We are blessed that we have had you and little Ms. K in our life, I will never forgot how much love we felt from you the day you came up to me in the PICU waiting room, it's even more difficult cause both of are sweet girls battled this rare virus which cause so much damage:( My Heart is broken and I shed so many tears tonight after reading your blog post, your a beautiful and courageous women and mother and I admire and Respect you more then you will ever know, If you need anything please let us know, My family has you in there prayers tonight. We love you and Little Ms. K with all Our Heart's.

Summer said...

Oh my dear Shauntelle......your FAITH is absolutely amazing!!!! Please know prayers are being said for your family all over the world. You have blessed the lives of so many by sharing your journey and also by lending your ear and shoulder to cry on.......it is our turn to be there for you! please let me know if there is ANYTHING I can do! Mason and I will be at PCMC tomorrow (Thursday) for his biopsy and Coronary Artery MRI so I will come find you and K to offer a big hug of support.

LOVES!!!

Miracle Mason and Mommy

Amy said...

I am so, so sorry that your family is going through this right now. I will be praying for wisdom and for complete healing.

Amy (HopeKids)

ang said...

Oh I am so sorry and so sad for you all. What tough news! Poor, sweet Kaidence. We will add our family's prayers to everyone else's and continue to put our faith in our Heavenly Father's plan. Hang in there, and let us know if there's anything we can do to help your family.

♥ Michele ♥ said...

I am so, so, sorry to hear this terrible news. Our family will keep sweet Kaidence in our prayers. Heartland is a roller coaster ride and hopefully your ride will get better soon. Try to hang in there, we'll be thinking of you!

Jen said...

My thoughts, prayers and tears are with you and your family- your extended family including your amazing medical team.

Jen said...

Shauntelle, my heart aches for what you and your family is going through right now. You will be in our prayers.
Jen, Luke's mama