Annual Heart Cath Results October 2010

Yesterday went well with Kaidence's heart cath. The cath lab was running a couple of hours behind because of some sick kiddos. We totally understood because I know for a fact that we have bumped others a time or two as well. Just grateful that we weren't the ones needing to be 'fit in'. That's never a good sign. Kaidence did fine with it and only asked for something to drink twice. When it did come time for her cath she knew exactly what she wanted and how she wanted it. She literally danced her way into the cath lab. She danced and did princess twirls until she was standing next to the surgical table. She then asked someone to lift her onto it. She had already told the anesthesiologist that she wanted an IV in her foot, a root beer flavored mask (for the sleepy gas) and that she wanted "bear bear" to have a mask as well. She then proceeded to ask for a PINK oxygen mask, she had to settle for a yellow one. Thankfully she used her big girl manners when requesting it all. She was very polite. Once she was sitting on the table the anesthesiologist handed her the root bear flavored O2 mask. She said "hold on, I need to lay down first". Once she layed herself down, she took the mask and held it to her face until she was to loopy to do so on her own.

Recovery went well and she ate like a horse after. Seriously.......she ate and ate!

Her results came back today. Her pressures are looking a little better. Her AMR is still 'suspicious' but the other areas came back with pretty good grades. We are also waiting for the results of her specific antibody test, those should be back next week. Although we are not where we were before the rejection episode in August, Dr. E seems pleased with the direction we are going. The truth is that things may never get back to how her heart was. However, rejection is something that we want to completely resolve. Its just taking a little more time. With Dr. E feeling that Kaidence is progressing we will discontinue the IVIG (YEAH!!!!!!!!). I am not a big fan of IVIG and the whole process, but glad we have it just in case. Hoping that we NEVER need it again. No IVIG means that tonight she was able to get her flu shot (so happy). We will continue her steroids for one more month and hopefully decrease her prograf range to where it was before she became sick in August. Also we were able to stop her Lasiks (water pill). This means no more accidents while standing in front of the potty. Poor girl would get so upset when she couldn't make it fast enough. That basically sums up the day.

I am grateful that we are making progress, even if its slow. Its such a blessing to be heading in the 'right' direction. Thank you for all the many prayers.

Also, Carden gave me a wonderful birthday gift.......sleeping through the night for the last 3 nights. I must add that I am VERY grateful for that as well.

A FRIENDLY REQUEST
So here is our friendly request to our dear friends, neighbors and family. PLEASE, lets us know if you or your kiddos have been sick and will be having contact with Kaidence. That way we can make a decision on whether we need to change our plans and stay home.
If you have spent time with her recently and end up getting sick, let us know as well. We understand that you may feel well one day and sick the next. This is in no way to make someone feel bad, but it helps give us an idea of what it could be if she does end up sick. For a regular kiddo, no biggie. But for Kaidence this will save her multiple blood draws (and tears) as they run labs to figure out what type of illness she has. So think of it as doing Kaidence a favor and Please just give us a heads up.
Also, if you happened to get the FLU MIST and will be in contact with Kaidence please let us know so we can stay away for a couple weeks. We have received a letter from cardiology stating that because the Flu Mist is a LIVE vaccine it could be contagious to Kaidence. Therefore, we are to stay away from those that have received the mist and ask those that will be in contact with her to get the SHOT instead.
Thanks for always being so so good about all of this. We hate asking this of others but we know of the major impact this could have on Kaidence's health and in all honesty her life.