ER- UPDATE!

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.

IN THE ER!!!

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.

HOME!

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'.

POST SURGERY!

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.

OFF TO SURGERY!!!

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.

A 'BIG GIRL' MONTH FOR MISS K

I have started another post telling you about all the fun things that we did this summer, BUT it will still be awhile before I get it done. In the meantime I will give a quick Kaidence healthy update. Kaidence has done AWESOME this month. She has honestly grown so much this month. At the end of July we took her ff Singulair and baby aspirin and all of a sudden I have an EATER. Yes, you read that right. Kaidence seems to have found that food is pretty darn good after all. We honestly went from not taking a sippy cup of milk for the last 2.5 months toooooo "mama eat, eat mama". It honestly happened overnight. Also, the same day that the eating started Kaidence decided to potty train herself. She just woke up one morning and refused to wear a diaper (as I thought to myself, yeah right). But, Kaidence always has a surprise for us and I am pretty confident in saying that she is potty trained. She has only had 4 accidents since the first of August.

Also, Kaidence now sleeps in a 'big girl' bed. Ok, it is just her crib with the side off on her new bedding that has been sitting in the closet. BUT, she thinks that she is as big as her brothers now. I am a little concerned that all this 'big girl' behavior will be no more after her surgery next week. But, oh well!!!!

Currently Miss K has had some fevers. Her chest xray looks fine but cardiology just called to let us know that she most likely has a bacterial infection brewing. CRP and white count (bands and neuts) are elevated. We have the lovely cultures looking to grow something, so we will just wait.

By the way, Kaidence was not pleased with her multiple IV attempts today from our IV team buddies. She tried hiding her arms today once she IV team. Now that she cries"no mommy" "Hurts" "All done" and "Go Home" as she is being poked, my heart breaks more and more. Luckily, kids are very forgiving (we should all learn form them) and once she got her shirt on and felt safe, we were all friends again.

We are hoping that Miss K gets better so that we can proceed with the surgery!!!!

THE LONG AWAITED GENETICS APPOINTMENT!

Well today was one of those long awaited days. The day that you think you will get all the answers even though you know deep down inside that they will never have an answer. After 7 months of having our genetics appointment and 1 1/2 years post transplant we met with those that ran all of the test over the past 2 years. I can't believe that this month it will be 2 years since Kaidence got sick. Many of you know that we never received answers as to what really caused Kaidence's heart Failure. It is between a virus that we all caught or a glycogen storage disease. Now the glycogen storage disease was never in the picture until Kaidence received the "Berlin Heart." It was at that time that they took a piece of her heart and biopsied it and found glycogen. It was then that they took her off the transplant list (almost for good). After further biopsy of her leg muscle it was found that yes, there was glycogen. To explain about the glycogen storage disease, they range in types and severity. They can cause cardiomyopathy or serious muscle degeneration, however Kaidence tested negative for all of these forms. They sent off her heart after it was ex-planted but nothing stood out from what they already knew (it was huge and completely stretched out and just plain sick).

So we met with genetics today to try and figure out what happened and what are the chances of it happening again to any other children. Well, we don't have anymore information then we did back at the beginning. All genetic testing (glycogen related and other genetic testing) has been negative (which we are so very grateful for). However, they tell us that Kaidence may still have glycogen in her body and that if she does it is a glycogen disease that has not yet been discovered. The doctor told me that he spent the weekend going over Kaidence's chart and then he asked me if I had ANY idea how BIG her chart was? He said it took him the weekend to read through it. Then one of the interns said that the part she read was over 300 pages!!! He then proceeded to tell me that after reading K's chart he was very surprised that she looked as great as she does. He just kept saying that over and over, He said that he is VERY pleased and that things look very promising because she is developing so well and normally with the glycogen disease, she should be getting worse.

He said that IF she does have a glycogen storage disease that we had a 25% chance that it could pass on to other children. He seemed to think the 25% was the worst cases scenario but after seeing her today he is leaning more towards the virus attacking her heart but nothing can be ruled out for sure! However, at this point everything is pointing back to the virus. Mike, myself and the doctors have always felt that this is what caused her heart failure in the first place. So we will continue on with assuming it was a virus unless Kaidence takes a turn for the worse, but we aren't planning on that happening!!!

They will continue watching for more research to find a non-invasive way to test Kaidence to get answers as to what happened but that those answers will likely be years in the future. He will go over her chart again this week and then discuss her in the genetics meeting with all the other doctors. If anything comes up as a concern or to test for they will give us a call. Other than that as long as Kaidence is still growing and doing well we don't have to go back. Becaue they are so hard to get into, they did make an appointment for an optional follow up for February 2011 (who's is going to remind me of that one?)

I am very happy to let you know that the fact that K is in the 47th percentile was a HUGE plus for them today. That's right, as of the last week of May, K was barely in the 5th percentile. She weighed about 28.2 lbs (Thanks to her g-tube)but that was with her pants on. Her shirt was off because she threw up in the car on the way. I am usually good at catching the vomit while I am driving but I could not get over fast enough and had to empty the markers out of the crayon box because somebody took the puke bowl out of my car. What were they thinking!?! Needless to say she was half naked for our appointment, but she doesn't care. She is proud her her scars.

We have been so blessed and feel so humbled as to how well Kaidence has done. Everyday I am in awe at the fact that she is still here. I can't believe the miracle that Kaidence has beating in her chest and that because of her donor heart she IS living a very happy and normal life. She acts like any other toddler. I often wondered what life after transplant would be like. I have been afraid of her future for almost her whole life. I think I will always have a fear deep down in my heart but I am embracing the present. It is a beautiful time in Kaidence's life. A time for her to laugh, learn, love and grow. A time for us to truly know her. We have been blessed with this precious gift and we thank our Father in Heaven for this time we have been given to embrace Kaidence and her two big brothers! We love them with all of our hearts!!!