Thursday, November 19, 2009

Some GREAT news and a little not so great news!

Well, first I must give the good news first........NO REJECTION. Zero's all the way across the board. Part of me still can't believe it. Her AMR also looked better than last time. We are overwhelmed with happiness from that news.

Next part, I noticed that Kaidence was not really moving her right arm much after the cath. She also would say "owie" if I touched it. Didn't think much of it because she also had the blood pressure cuff on it. However, as the day went on she was still not moving it. I went to give her a sippy and noticed that she could not grasp her cup. She cant bend her arm. Almost like her muscles aren't working. She can twist her wrist and move her arm at the shoulder, but cannot bend her arm. It just hangs straight. We aren't sure what happened. She has no other symptoms of stroke or blood clot at the time. Dr Gray said it is very rare (should be my first sign) but sometimes patients can get what is called a brachial plexis (sp?) injury. Basically because in the cath lab they have their arms raised above their head for a long amount of time (today was longer then expected) it stretches the nerves and damages them. Most patients will recover their arm function, but it may take awhile and therapy. If she has not regained more function on Monday, Cardiology will schedule an appointment with neurology. Kaidence would not be Kaidence without some sort of drama thrown into the groove of things. Hopefully she will tolerate her arm issue ok. Right now I can tell that she gets frustrated at times. She can't climb onto things any longer, catch herself when she falls, get herself her sippy to her mouth, sit herself up from laying or do her sign language. We are praying that this will resolve itself in a timely manner before she gets into the habit of not using that arm at all. She is a happy little stinker tonight just to be home. In fact she talked and sang to herself the whole way home.
We are trying to focus on the amazing news from her biopsy. We have been so blessed and the Lord will continue to bless Kaidence and find a way to provide for her what is needed. Monday we will have results as to whether a stint needs to be placed and we will maybe have a better idea of what her arm will do. Thank you for all of your prayers. I will update if anything changes.


Kaidence is finished. Everything looked great except for the LPA. It is not narrowing , but kinked instead. It is most likely because of how her heart is sitting in her chest. We will be back on Monday for a CT or MRI and that will tell us how much blood is getting through to her left lung. It is obvious that the LPA is much smaller than the RPA. In fact, it is about half the size. However, everything still looks as though it was caught early enough to fix.

I have not spoken with transplant team yet, but Dr. Gray said that besides the kink in the LPA that her heart looked PERFECT! Not a day goes by that I am not amazed by the journey that we have had and that somebody gave us this amazing chance at life. It is amazing to see pictures of this heart that beats within my daughter. When they transplanted Kaidence, they hooked up her new heart and it started beating on its own without needing to be shocked or anything. I truly believe that is at home within Kaidence for this time.

We will keep you posted on the biopsy results and all the other many numbers that they look for. Thank You for your prayers. We are so grateful for such an amazing support group.

Cath Update #2

We still have not heard anymore. This 2-3 hour cath has just hit the 4 hour mark. I am starting to freak out a little. I keep thinking that maybe my pager is broken, even though I know it is not. I always thought as well when she was waiting for her heart. I am trying to keep myself busy, but my mind has a different agenda. I cant stop wondering what is going on and if everything has gone ok with the ballooning of the artery. I keep thinking that I should hear from them any moment. Just thought that I would update.

Update to cath #1

Kaidence's cardiologist just came by to let us know that Kaidence is dong well. They think that there is narrowing of the Left Pulmonary Artery (LPA). However, we have had this discussion before. In fact 6 months after tx, we sent Kaidence to the cath with the idea that a stint would be placed at that time. Dr. Cowley felt that it was just the angle of her artery and that blood flow was fine and therefore found no need to place the stint. Dr. Gray was wanting to place a stint after getting a look at things this morning. They will balloon her artery in the cath and see what happens. If things look stable at the point Kaidence's cardiologist wants to wait and do a MRI of her lungs and heart that will show the blood flow to both. If this looks bad, then we will go into another cath to have the stint placed. It would be one more cath, but better than having something placed that is not needed.

(FYI - a stint opens up the artery and allows more blood flow. If the artery goes without the appropriate amount of flow then the vessels of that artery will die off and cause serious problems).

She still is not finished and we are anxious to see her. Still keeping a prayer in our hearts.


We officially made it into the cath lab around 7:30. She woke up with a little cough this morning, but they feel that she sounds and looks pretty good. Kaidence was a little unsure of things, but she insisted on walking herself into the Cath lab and went and stood right next to the table. Everybody seemed surprised at how big she had gotten. She chose bubble gum for her flavor of sleepy juice, but was a little unsure as to why she didn't get a 'real' piece of gum. They let me stay in the room with her as they put her to sleep. I was able to help hold her and just talk with her as she drifted off to sleep. She only cried for a minute before she was snoring away.

They told us to expect 3 hours because they were doing a full cath on her. I don't ever recall her having a full cath since her initial 6 month post transplant. They will use both legs as access to a artery and a vein. They will take the biopsies and then inject dye into the coronary arteries to look for disease and narrowing. I am a little worried as to how the coronaries will look due to the fact that last cath she came back showing AMR antibodies. They seem to think that being positive for the AMR antibodies leads to a higher chance of disease of the arteries. Time will tell and I am trying to not worry over things I cannot control. Please keep my little lady in your prayers today. I will update again as soon as I get any info.

Wednesday, November 18, 2009

Cath Lab - take 3!

So about 4:30 this afternoon the cath lab called to cancel Kaidence's appointment for the 1st of December. They had another heart kiddo that needed the spot. I told them I understood because I am sure that we have caused others to reschedule in the past when Kaidence needed things done.

Well after trying to find another date to reschedule, she said that they could do her cath tomorrow morning. I asked her to double and triple check with same day surgery to be sure that they were really ok with it. She called and they told her that 4 weeks post H1N1 was only for those that had the illness severely enough to be hospitalized. So we are apparently good to go for the morning, first case.

Please keep Kaidence and the doctors in your prayers. I have been a little more paranoid about her airway holding up after the tonsil episode, but I think that was an isolated episode due to the swelling, cough and too much Lortab.

I am also worried about her heart valves after the other cath. Once you have one bad cath experience it seems to make you a little more paranoid for the others. I am sure that all will be well. She knows that she gets to go to the hospital in the morning. she just tilted her head and said "Oh no" in her soft, raspy voice. We look forward to checking this off our Holiday list of 'things to do'.

Thank You for your prayers. They bring so much comfort, peace and guidance.