Wednesday, August 17, 2011

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!

Monday, August 15, 2011

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.

Sunday, August 14, 2011

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!