Friday, August 5, 2011

No Rejection, Baffeled Doctors and Going Home


Well once again Kaidence has the doctors a little baffled as well as her parents. Despite the echo and EKG her heart biopsy looks good. Good enough that we are out of here. The dr's said they just aren't sure what to watch for on her. Heart rate seems the safest thing to watch. She just walks around with rejection symptoms and isn't necessarily in rejection. Her echo today still looked the same because that valve is worse but her heart and body seem to be handling it just fine. Cardiology will speak with the cardio surgeon and discuss at what point that heart valve will need replacing. Likely, that will not be for years. The good thing is that now cardio knows that if her echo looks this way that her pressure and body are handling it just fine. Sorta a new baseline.

Kaidence is a little grumpy from all the steroids they have given her thinking she was in rejection and from the drugs today but that's ok because we. are. outta. here.

Such relief, so much gratitude......Thank You for the prayers

Cath Lab.....and done.

I woke up this morning with the hospital more explanation needed.

Kaidence is in cath lab. She went in like she was going to a party. I will post the pics soon. She left on time and we are super excited to know that Dr. P is her drug doc this morning. He knows Miss K very well and I totally trust him. Dr. D is doing her heart cath today....So it should be a good one. We may not be making it for our out of town getaway to the Homestead in Midway. We were supposed to leave today at noon........oh well. Thats not imprtant.

***UDATE*** I didn't even get to finish the post and my pager went off. Kaidence is all done. Her numbers look good, we don't have the biopsy results yet and will not until this afternoon. Her pressures are good and so we count our blessings for what we do know and hold our breath for the rest. She is back in her room and already had a pink slushy and a thing of milk. Now she wants food but is still pretty loopy.

Sorry I wasn't a very good blogger today. Everything moved so darn fast that I didn't have time to really update. I will post again when I talk to cardiology. Thank You for remembering my Kaidence in your prayers.

Thursday, August 4, 2011


Seriously? Was it not a year ago to the date that Kaidence was admitted for rejection? Well yes it was and guess where we are tonight.....yep, and for the same thing. Next year our family will be skipping this week on our calendar.

Today was a normal clinic visit and she looks great, but her echo didn't. Her heart valve is leaking more, her EKG showed low voltage. Both signs of rejection. Her BNP is a little high but not as bad as last year.

The plan is to do another heart biopsy at 7:30 AM tomorrow. This will let us know if she has rejection, what types and how bad. We don't think it will be as bad as last year. I pray it is not, I keep recalling her suddenly being so sick, all the panic from the doctors and nurses and thinking I was losing her. I don't want to be told that I need to go and talk with my daughter by her bedside in a moment that they would normally kick a parent out of the room because she was so sick. However, I am forever grateful that they gave me that opportunity....just in case.

The other thing that this heart issue could be from is a her leaky tricuspid valve. Remember the valve that was damaged a few years back? Well, it's been getting worse and may need replacing sooner than later. We may know more info on that tomorrow as well. So for tonight we wait, prayand count our blessings. Tonight she is getting IV steroids and we will pray that tomorrow goes smoothly.

Thank You for all your love and prayers. If you need us we are in room 3084 at the house on the hill.