No heart camp tonight :(
Cardiology today was blahhhh! K has a little cold and ear infection still. Her echo still looks the same. Dr. E thinks that Kaidence is in mild rejection. Today a bigger problem presented itself. Kaidence's bone marrow has stopped making white cells. White Cells (AKA soldiers in our house) fight off the infections (Bad guys). Kaidence has ZERO soldiers. Why? We are not sure. Could be meds she is on, a handful of virus' or Post transplant Lymphoma. We are focusing on looking into meds or virus' being the issue. If that doesn't resolve the white count then we will move onto the Lymphoma part with the oncologist. I am trying not to cross that bridge unless I am forced to.
Today we removed her from the antibiotic for her ear infections & decreased her Prevacid. She has started shots that will hopefully stimulate her bone marrow into making white cells. Mike will give her shots daily. We will check back in with cardiology on Monday and run a lot of labs to check for those virus's and the other.
Back to the rejection. It would be far to unsafe to start treating it now without her bone marrow not producing white cells. So we wait for her count to come up and then treat the rejection. Its not ideal, but we have no other choice. The good news is that her heart and body are still handling things from the heart standpoint.
PLEASE stay away from us if you have been around anyone sick. Kaidence is in a very dangerous situation at the moment. She is not at the hospital only because she would be more likely to pick up on infection there than at home. She has nothing to fight any illness at the moment. So please help us out for the next little bit with that request. We have been told to keep the boys home as well until this resolves.
As always your prayers are felt and keep us going. Some days I feel like I am saying a constant prayer in my heart because that's when I feel the most peace. We would be so grateful if you would keep Kaidencce in your prayers. Our hearts all already forever grateful for all the many prayers said in our families behalf. Love to you all.
Friday, August 12, 2011
No heart camp tonight :(
Posted by Kaidence's Mommy at 1:32 PM
Monday, August 8, 2011
Really, I feel like I am going crazy. The ups and downs seem constant the last few months. We had the crazy radiologist a month or so ago sending us to the hospital in heart failure and it really wasn't anything (Don't get me wrong....SOOOO grateful) and then this last week at a routine clinic visit being told that she likely was in rejection and hospitalized, then no rejection (sent home and on vacation )and now they think it may be rejection after all. We did get to leave from the hospital and go on our scheduled vacation to Midway. That was wonderful but now after today's news my emotions are tired, no better way to put it.
Today I talked with cardiology and they are still concerned. Kaidence's main cardiologist was out of town when Kaidence was in the hospital and today was her first day back. After looking over all of Kaidence's info, labs, echo, heart cath......she is concerned. We have bumped up our cardiology appt from 2 weeks to this Friday. Pathology seems to think that the tissue from her heart looks suspicious for both vascular and cellular rejection cells. Not sure why this looks different from the main biopsy rejection test they did last week. I will ask more about that on Friday. She also seems concerned over her tricuspid valve leakage being worse. We are still awaiting the results of the test they did that checks for the number of different antibodies that fight against her heart. She may have none or she may have a bunch. This number may determine if they decide to start treating her.
1. Echo looks worse: slightly decreased heart function and right heart is bigger.
2. Low voltage on ECG (seen often with rejection)
3. Suspicious cells may be present according to pathologist.
4. Tricuspid valve is very leaky (sign of rejection or need of a new valve)
5. Seriously big neck veins (sign of rejection)
1. Kaidence looks GREAT!
2. Eating well, no upset stomach
3. Heart Cath pressures looked good
4. Has a lot of energy
5. Heart rate has been nice and low
6. BNP is down from February (lower is better)
7. Her parents love her, she has awesome brothers that have incredible Faith and she has many people praying for her!
So we will wait and see what cardiology decides to do. I should know more on Friday. Did I mention my anxiety level is on the rise?
Today we went and registered Kaidence for preschool. Something so normal that I wondered if this day would ever come. Oh how I hope she gets to go. She is so stinkin excited. We got all her school shopping done and she is already counting down the days. If she does need to be treated for rejection it will put a damper on that.
I will trust as I try so hard to do. Sometimes its harder than others. I am tired of the ups and downs. The roller coaster of emotions becomes a bit much at times. However, I will try to keep my chin up, count my blessings and keep moving forward. Today Paul Cardall posted this thought on FB and I LOVED it the moment I read it
We have no right to ask when sorrow comes, "Why did this happen to me?" unless we ask the same question for every moment of happiness that comes our way.
With all sincerity in my heart I Thank You for your continued prayers........
Posted by Kaidence's Mommy at 6:59 PM