Saturday, August 29, 2009


Miss K was admitted to the 3rd floor tonight. They will keep an eye on things. She seems to be improving, although she still has fevers. They have a couple of theories as to what may have happened. They think that she may have had a seizure (I really don't think that this was the case) because of low O2 saturation's. The low sats could be caused most likely because of a combination of all of the following: Swelling from surgery, paralyzed vocal chord, cough, Spasms of the airway and some sort of viral infection that they have seen going around lately. We cannot check a respiratory panel because that would require suctioning which would be much too dangerous right now with the risk of bleeding. They think that because of her compromised immune system theses things all working against her may have set off this episode. It all happened so quickly. It was not like the choking episode back in March, it was completely different.

We will stay tonight and hopefully go home in the morning. We won't be coming around to visit any of our heart buddies while we are here because we would like to keep all of you healthy just in case she really does have something. So we hope that everyone is doing well and we will update tomorrow. Thanks for your thoughts and prayers.

Friday, August 28, 2009


Well, Miss K is still feeling pretty yucky. Her cough has been rough on her and because of her vocal chord cannot clear the mucous. I have talked to cardiology, ENT and her pediatrician because I have been worried about coughs and fevers.

Early this afternoon she she started crying and was laying on the floor next to me when all of a sudden she turned blue, her eyes rolled back and started to close and then she went limp. The Needless to say I called 911. While I was waiting for them to arrive, I put some O2 on her and the color came back to her face. She just laid on the couch, but could hardly keep her eyes open. The paramedics also noted the her left eye was a little more droopy than her right. I told them that at about 2:30 this morning that eye was watering and red. They said although it is no longer red, just droopy that it may be due to an infection or something more. She is also satting lower, but that seems to come and go depending on the congestion.

So needless to say, we are in the ER back at our house upon the hill. We aren't sure what they will do with her. I just don't want that to happen again. Everyone seems to think that the paralyzed vocal chord had a lot to due with what happened this afternoon. We will keep you all posted.

Wednesday, August 26, 2009


We came home this afternoon. K had a rough night last night and would not let me stray from her more than an inch (seriously). She still won't let me too far from her and she is still sick to her tummy. We used her g-tube to pull out a lot of clotted blood from her tummy and it has seemed to help a little. She spiked a fever in the middle of the night. They let us still take her home but are concerned about the fever because of her immunosuppression. We are to call if the fevers come back. WELL, the fevers are back. We have called cardiology and are waiting to see what happens with them. She is refusing to drink anything (so glad we have a G-tube). I am thinking that tonight may be a little rough, but that is fine with us. I am tired but so glad that we can do all this in our own house. After all, this is such a normal kid thing to have done and a walk in the park compared to all the other stuff. So for now, we will go on loving being 'normal'.

Tuesday, August 25, 2009


So the surgery was fast and went well. Kaidence is not feeling too great and was not happy afterwards. She is pretty sick to her tummy and keeps pointing to her mouth while crying. She is obsessed as always with her her oxygen bag. She refuses to let anyone take it from her. It was her favorite toy in the hospital while waiting for her heart. She has had many visitors of doctors, techs and nurses. It is like a great big family reunion.

The doctor said that K's adenoids were 80% obstructive and that they were much bigger than her tonsils. We are really hoping that this will be the key to getting her off her o2 at night.
Thanks for your thoughts and prayers.


Kaidence just went in for her surgery. It feels so different sitting in the waiting room this time around and knowing that we dont have to think about things like 'heart/lung bypass'. Not as much stress. I am still worried, because that is just what I do. The doctor said that she will be going to the PICU after, just as a precaution. He also said that he was afraid that he would get beaten up by the nurses if he didn't send her to the PICU. One of her PICU nurses came by to see her just as we were walking her to the OR. Kaidence was excited. I was worried that handing Miss K over to surgery wouldn't go so well. You see, Versed just doesn't cut it any longer for Kaidence and she was totally aware of everything going on around her. We walked to the doors and handed Kaidence over. She turned around and waved to us as he carried her through the doors. No tears....nothing. Mike and I looked at each other and said "I guess we weren't needed after all." In all honesty I am glad that she was happy to go with him. It made it so much easier.

My heart is overwhelmed every time I step into this hospital. We have so much to be grateful for. Sitting in the waiting room brings on so many emotions that are so close to the surface. My heart if full and I thank Heavenly Father everyday for the miracles that he has blessed us with and the sweet family that gave Kaidence her gift of a heart.