First of all I apologize for not updating my blog during this last week. Normally, I keep it updated with things going on but I didn't have time to grab my laptop before I took K to the hospital Friday. I PROMISE that when we get a heart it will be posted here as well as FB!
Kaidence had a blessing back in Sept that talked about the doctors timing be precise! I feel like over the last week we have seen that promise starting to unfold.
Friday Kaidence woke up crying that her chest hurt. This is a first for her. I listened to her heart and it seemed to be beating faster than usual. I called cardiology and took her right in. We looked a little rough since we didn't take the time to get ready for the day but some things you don't mess around with. Kaidence's echo looked the same, her ECG showed lower voltages. Last time the lower voltages were a sign of Kaidence's rejection. They did labs on her, all of which came back within appropriate limits. After the ECG cardio decided to get Kaidence in to the cath lab that same day. Mike wasn't at the hospital yet and he really wanted Kaidence to have a blessing so I went and found Eric one of Kaidence's NP's that took care of her with her first heat. He graciously agreed to come and give her a blessing. It was beautiful. About 4:00pm she was taken into the cath lab. She was so excited to be at the hospital. She was grabbing nurses, hugging their legs saying "I get to stay here with you." She was at peace but I was worried because last time her heart didn't behave so well. However, this time she did great!
A big fear of ours and cardiology was that Kaidence was in rejection and we would have to deactivate her from the transplant list for a few weeks until the rejection cleared. This became a greater concern as we learned how truly sick Kaidence's heart is. She has arteries within the heart that have totally disappeared! Things are looking a little scary in there and Dr. D had a hard time finding any healthy tissue to biopsy. Her heart is that sick!
The results showed that K was NOT in rejection (BIG sigh) but inflamed. If arrhythmia's or chest pains continue, cardio will talk about a pacemaker. However, they seem to think we will have a heart sooner than later and we hope that she can hold out.
We have been blessed with tender Mercies from our Heavenly Father this week. How grateful I am that things happened they way they did this weekend. Although it rocked our boat big time, we were blessed. For the first time in 7 months I knew without a doubt that Kaidence really needed a new heart. Comparing how sick she looked last time to how she looked this time it was hard for me to process that her heart was "that" sick. Monday cardio and I had discussed the possibility that maybe we could wait a little longer to get her a new heart. Waiting until more symptoms pronounced themselves. Of course they would cath her to be sure. The plan was to discuss this more in 5 weeks. Now I was even more torn! However, we are now on the same page, knowing that this little girl needs a new heart SOON. Although I found this frustrating that she looked so good that I could no longer be sure what to do I had to remind myself that my prayers had been answered for Kaidence. When we found out that she needed a new heart I pleaded with the Lord to not let her health and quality of life deteriorate like it did last time. All I wanted was for her to get the chance to live like a healthy little girl and for the most part, that has happened. With dance and preschool twice a week she has kept busy. She loves jumping on the trampoline, riding her bike, swimming and playing.
Friday was the day that I was supposed to take Kaidence to the Kindergarten Orientation........KINDERGARTEN! She was so excited to go but instead we ended up going to the hospital. However, on Saturday as K was wondering her room, guess who walked out of the room next to us.....her kindergarten teacher for next year. She was as shocked to see us as we were to see her. K was excited to see her.
Saturday late afternoon we were discharged form the hospital. From that point on K has not felt well at all. She is fatigued, sick to her stomach and refuses to eat and drink. I haven't used her G-tube in about a year but had to so she would stay hydrated. Vomiting and fast poopies seem to have made the problems worse. We have been in very close contact with cardio. I think our biggest concern is this illness is a result of her heart getting sicker. However, Camden started throwing up last night and Carden has fast poopies too. I feel a little better about things but we will go and see cardio in the morning.
We are taking it easy around here. Dr. E is out of town and Dr. K her surgeon is also out of town. Hoping that everyone gets back and settled before this heart comes.
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