Improvement!

I only have a second but today was another cardiology appt. Since it was also the first day of school Kaidence sported her new school clothes to cardio since she cannot go to school right now. Miss K has been praying every night that "my soldiers will get bigger and the my heart wont be in rejection." She then goes on to ask the "Dr. E and Dr. J will tell me that my heart is better when my mom calls them in the morning so that I can have my sleep over with Ry Ry."

Apparently, K's prayers are being heard. Today's echo showed some signs of improvement. The heart function on her left side is looking better. Her tricuspid valve is still a mess but still not our main concern. Overall the echo just looked better. They also did an ECG and the voltage on the looked much stronger as well. When Dr. E was shouting with joy when listening to Kaidence's heart today. The gallop in her heart rhythm was gone as last. These are all signs that the medications are working. Dr.E seems to think that we have a good handle on things. Also, Miss K's white count is holding stable. We will continue to plan on K's vocal chord surgery (3rd times the charm, right?) September 9th. We will be on house arrest at least until then.

We feel so grateful for the good news that we did get today. I don't ever expect things to be perfect but I do love things to be heading in the right direction......

Another Echo

Here is a quick update as to the happenings of Kaidence. Yesterday cardiology called and asked if we could bring K in for another echo today. Dr. E was a little concerned about the gallop she heard at the last appt and wanted to make sure her heart was not getting sicker.

Today I hauled all four kids to cardiology.....enough said. K's echo still looks the same. At least it's not any worse. Dr. E said that she doesn't expect an improvement in her echo YET. It will take more time. Bummer part was to hear that she has a slight decrease in heart function on the left side. This is a first for this side of her heart. However, it could just be the rejection and it's not a big decrease. It's still functioning within normal range, just not as 'snappy' as it was. The gallop that was heard on Friday, has improved. It's still there but not as frequent. This and the decrease in HR at night is a good sign that we are heading in the right direction. If all continues to go well, we can treat this episode at home. If things don't clear up then we will go in for IV steroids. We will have an appt Monday and see how things are looking. Oh how I would love to hear that her echo shows signs of improvement. That would be WONDERFUL! It just seems like ever since last August...the road has been a little bumpy. Never getting back to where we were before the rejection. Not complaining at all, but I would love for that smooth sailing we had going on for awhile there. Loved it!

Kaidence otherwise is doing well. These steroids put the spunk in her. They make her crazy happy. Crazy like she is on something that she shouldn't be. She is bouncing off the walls, teasing her brothers, running around. She thinks everything is hilarious. She is somewhat of a handful. She will sure miss her brothers when they go back to school Monday. I think I'll be playing a lot of Barbie's.

We will keep you posted. Thank You for all you do for our family. We are grateful for YOU!

An Army of Soldiers!

We have soldiers people! According to cardiology TOO MANY soldiers but that wont last too long. Kaidence's bone marrow really kicked into gear with those shots and we feel very reassured by that. We don't have the results from the virus' we are checking for but K does have some sores in her mouth. They are thinking this may all be linked to a virus and then the 2 big doses of IV steroids from the hospital stay. We will take it!

Onto the heart. We cannot wait any longer to start treating her rejection. Today Kaidence's heart beat has a gallop in it. This is an irregular sort of beat that can go hand in hand with rejection. A sign that maybe the rejection is now making itself more obvious. She did not have this on Friday. We feel extremely blessed in the timing of this today. White count up = we can now treat her heart for rejection. We feel so grateful that we don't have to wait a single day longer to start treating her heart. I was concerned that if things with the white count did not improve so quickly, her heart would get sicker and sicker and we would not be able to do a single thing about it. I feel great relief and peace.

Today we will start back on the steroids and other fun rejection meds. She will continue house arrest. House arrest for the boys has been lifted. They can go to a friends house (as long as everyone is healthy) but no friends over here unless they play outside. The boys will be happy to get OUT! We will do the steroid burst at home with oral steroids. Hopefully this will take care of it all. We are still keeping fingers crossed for blood results but are grateful for what we do know.

We will do labs and an echo on Friday. We will know more then.

This morning before we left, Mike gave Kaidence a blessing. I have felt such peace. I wasn't even sick to my tummy this morning. Thank You for your prayers. They have been felt immensely. They have brought peace to my mind, heart (and stomach). I have felt great comfort over the last few days. Therefore, I have not been placed in the 'funny farm'.....yet! Thank You, Thank You and Thank You. We are grateful to you for taking the time to pray for our Kaidence. They were heard and felt.

Our Weekend

We have spent the weekend at home cleaning to keep Kaidence germ free for the next few days or however long. I have stayed busy trying to keep my mind free from wandering to the "what if" part of it all. Today I have been sewing some masks for Kaidence to wear to the hospital since she has outgrown all the old ones. I made these ones pink of course.

Kaidence is doing well and has not had any fevers. She has done great with her shots. All she asks for is a cute bandaid and a sucker. Her appetite today has not been so great, but that's ok. Her heart rate is a little higher than normal but we cannot do anything about that until we take care of her white count. Energy level is great and she seems happy.

I try to find a blessing in all things. Sometimes it may seem a bit of a stretch to come up with something and other times I realize that its been starring me in the face the whole time. I just hadn't looked for it. I have been trying to find blessings from all this the last few days. Here is what stands out to me.

* Kaidence's appt was moved up 2 weeks. If that had not happened we NEVER would have known that she had no white count/immune system. Therefore, she would have spent the weekend camping at Heart Camp and swimming with a bunch of other kids. She would have gone to church (germ fest) as well. She would also have been starting preschool. All along taking the extremely high chance that she would pick up on something that could possibly kill her. We wouldn't even have known that there was a problem until it was too late. This could have been life threatening to her.

By thinking this way it helps me remember that Heavenly Father continues to watch over Kaidence. He loves her and has not forgotten her. The prayers have been felt. I still get nervous when I start thinking too much about things but for the most part I have found great peace. I have tried not to dwell on the unknown and my mind is staying calmer than I thought it would. I know this is because of all the prayers. I have NO DOUBT!

Tomorrow will be a big day for labs. Likely we will only get the white count back tomorrow and not the others. Whats a few more days of worry? I hope that things will settle on their own. I am hoping that this is all from something that won't have adverse consequences for Kaidence in the future. That her heart will stay strong and calm until the white count is resolved so that we can treat the rejection safely.

Thank You again for all your love and prayers. We will see what tomorrow will bring. Hugs to you all!

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