A Bigger Problem!

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.

Now you know why I am so CRAZY!

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.

CONS

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)

PROS

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.

Enough said.....
With all sincerity in my heart I Thank You for your continued prayers........

No Rejection, Baffeled Doctors and Going Home

*THIS POST IS FROM YESTERDAY. COULDN'T POST, BLOGGER WAS DOWN*

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 tummy......no 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.

Rejection...again?

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.

Good Night

Wow, last night was a great night! The original plan was to go home after surgery but when Kaidence stared having naughty O2 sats the plan changed. They then talked about her spending the night in post op to be watched over. Well, post op decided that they didn't want to take her because she was requiring more O2 than they were comfortable with. She did sound pretty darn crappy after the surgery. There is NO WAY I would have taken her home. Therefore, she was admitted to the floor. We happen to be neighbors with our heart buddy Mason. It's much funner to be neighbors up here than down in the CICU like the olden days.

Last night she did great. She really sounds good now and has perked up. Her cousin RyRy came to see her and she was so excited. They sat in her fancy bed together, made funny faces, ate slushies and got their toe nails painted. Kaidence LOVED having the visit!

She slept great last night. She was not a fan of the high flow O2. I think her throat must be so sore. She did very well without the oxygen. This is so exciting to me!!! Maybe we WILL get off all that dang oxygen and I could get rid of all the equipment! So far, it looks promising.

This morning, She woke up and said "good morning mom." She ate a little breakfast but not much. She looks pretty wasted at the moment. Her eyes have dark circles under them and her face is a little swollen. She just needs a really good nap....I wouldn't mind one too.

Hopefully we will come home later today when her probe study is all done. Thanks for checking in!

DONE!!!

DONE!!!!!! Two of the docs came out and gave report. Kaidence did great. We are still waiting to see her. GI's report was that she she does have irritation. They won't know the severity until we do the 24 hour study. The nasal tube was placed for that in the OR. It has a thing attached and I have to push different buttons every time she sits up, lays down, eats, stops eating etc. I may have a busy night! They will have biopsy results on Friday. Everything else with her stomach and intestine look good.

ENT Report- It turns out that the right vocal chord that we had always assumed to be the problem is not as bad as the left vocal chord. Kaidence's left vocal chord is paralyzed. This took place during her heart transplant. There is a nerve that goes around the heart and wraps around the Aorta. During transplant it was cut or damaged. Therefore, the vocal chord was paralyzed. He injected some plumping stuff into the vocal chord in hopes that it will bulk it up and give her voice some volume. It will also make her cough stronger to help protect her airway. This plumping stuff will wear off over time. If it works...we will do another procedure and thread a new nerve into the left vocal chord that is paralyzed. The right vocal chord has had some damage too it as well, but still is working....not perfectly, but working. He also took the extra tissue away from the left side of the airway.

Plan is to watch her for the next 24 hours. She will need some breathing treatments to help with the airway swelling. I am so glad they are not sending us home tonight. I would be a mess with worry. Mike just went back to see her. Here are some pics from earlier today. Thanks for your prayers. I will try to blog later but I may have my hands full.