Friday, October 21, 2011


First things first.....Happy Birthday to my wonderful hubby!!!!! Kaidence sang Happy Birthday to Mike this morning into the phone from the hospital and Mike said it made his birthday because he could actually hear her sing to him!

This is post is going to be sporadic. Today I feel discouraged. I think mainly because I am so tired. I don't think straight when I am tired. Hopefully tomorrow I will feel ready for all of this.

We are home. We still do not have many test results back. I do know that as of now her rejection is not completely gone but in control enough that she can be re-listed. That is a relief! We are awaiting the antibody test and will have those results on Thursday at cardio. Dr. E will present Miss K once again at the transplant meeting with the other transplant docs throughout the valley this Tuesday and Wednesday. This way you get many minds working together. She will be re-listed this Wednesday.....Big sighhhhh!

Kaidence looks and feels great. She is full of energy. Her appetite is incredible. Dr. D commented today that with how bad her coronary arteries are that he doesn't know how her pressures still look great and how her heart is still getting enough blood....but it is. I will take that as another blessing!

Thank you for checking in on us......

Thursday, October 20, 2011

What we know at the moment.........

I haven't spoken with Dr. E yet so I don't know too much. I do know that K's CAD is still pretty severe. They tried some different medications while in the heart cath hoping that it would relax the arteries. It didn't really make any difference. During the cath K's heart rate to slow from 130 to 70. This could be because of the medication or restricted blood flow from either the narrow artery or the catheter. They were planning on sending her to the CICU to watch and briefly talked about placing her on a pacemaker. Looks like our DisneyWorld trip is an hold for a long while.
As of late, her heart rate has stabilized. They will send her to the floor tonight to be watched.
UPDATE: Spoke with Dr. E and she seems to think that we need to re-list Kaidence. We shouldn't have a problem getting her listed for a new heart as long as her biopsy comes back 'clean'. If she has any rejection.......Kaidence cannot be listed until it's all cleared up. So we are praying that her heart tissue looks good and rejection free so that we can get her listed asap. They are changing her Rapamune back to Cellcept. These are antirejection drugs. Rapamune and wound healing do NOT go hand in hand. Therefore we will take her off that medication today and start back on the Cellcept. We are hoping that the surgeons will still allow Kaidence to be listed with that medication still in her system. The worry is that if she did get re-transplanted with this medication in her system her sternumotomy won't heal.
We still are waiting to meet with the surgeons & nutritionist. Wow!!!!
I will post more as we get test results. We are hoping for 1) Being rejection free 2)low antibodies (this will open up the donor pool). 3)Re-listing her ASAP 4) Her sweet little heart holds out long enough for her to get a new one.

Today seems like a dream. Not my favorite dream but a dream none the less. I cannot believe we are really doing this so soon. I have many mixed emotions about everything. I have grown so attached to our sweet donor family. No matter what happens, we will always be family. They have given us what no one else could. They have changed our lives for the better. I hope they know how grateful they are for what they have given to us and for the relationship that we have with them. They are wonderful people. I love that little angel heart that has been beating within her chest!

Ready To Rock!

They just took Miss K to the Cath Lab. It should take 2-3 hours. Dr. D is doing her cath and he is the one that did it 4 years ago to get her listed. He is a great guy and I have complete trust in him. Kaidence was so excited last night.....she couldn't sleep. She LOVES this place. She had asked if we could play 'Eye of the Tiger' for her as she went into the cath lab. That totally cracked me up. Well, I didn't have the song ready SO I had to sing it for her. Now that we are all pumped full of adrenaline......we are now ready to fight!
How I count my blessings that she loves her mission in life. I have already started to see Heavenly Fathers hand in many things. Those taking care of Kaidence will be guided and directed, I KNOW that will happen. Thank You for your prayers. Gotta run to all of our meetings now. I will post ASAP!!!!!

Tuesday, October 18, 2011

Bumping up the Heart Cath!

Modays appointment was bumped to today because of the stomach flu that I had. Kaidence's heart function still looks good but now her heart shows that she has another heart valve leaking. Her Aortic valve. One that has never leaked before. Dr. E doesn't seem to think that it is related to the CAD but her gut tells her to bump up Kaidence's heart cath to this week. We would have done the cath today but she just ate a banana while waiting for Dr. E ;( Her heart cath will be this Thursday!

I can't help but think this leaky heart valve is Heavenly Father's way of making sure the timing in things works out for Kaidence. I do not doubt that His hands are guiding things along. If she needs to be re-listed....lets get it done! If things are improving then what a blessing that will be!!!!

Who knows what they will find on Thursday. I have a feeling that it will be a big, busy day for us. If she is re-listed, it will be the same week that she was listed 4 years ago. Crazy huh? Maybe on Mike's Birthday (his bday is Friday). Am I ready to do this again? Not so sure but I guess I am as ready as I will ever be.

I do feel that Kaidence maybe does need a new heart. It's a hard thing to think about. This little heart within just keeps working and fighting hard for Kaidence and I have no doubt that it will do that for her until she is ready for a new one. It came from an amazing little boy. We feel peace and comfort. We are grateful for your many prayers in our behalf and would be so thankful if they would continue. Thank You for all the kindness you have shown. We really couldn't do it without you!