Difficult Decision

Last Thursday Kenzie went to her first appointment after being treated for rejection her echo looked a little better from when she got admitted in the hospital so that was a good sign that the medications are working.

She seen Dr. Everitt and asked me if we wanted to do her cath here in Utah and transfer all her care to PCMC or go back to Colorado, and keep doing what we have been doing and have both hospitals care for her.

My thoughts were that it is nice to have both hospitals to co manage her care and of course we love The Children's Hospital in Colorado, not to mention Dr. Campbell her surgeon who saved her life both times when she got her new heart and her pace maker.

Also Carrie her transplant coordinator who is amazing at what she does and knows how to comfort me when we lived down there multiple times when Tyler had to stay in Utah. I also trust her and every time PCMC wanted to do something sure enough I called her first before it happened.

So of course I talked to Dr. Everitt and she told me that her and Dr. Pietra thinks that times it can get confusing on both ends just because they do somethings different. Which I understand especially with all that Kenzie has gone through and we are hoping it gets better but who knows what the future holds. And Kenzie likes to keep us on our toes

So when we got home from her clinic Carrie called me to see how Kenzie was doing. Of course I asked what she thought about the whole Idea and she kind of gave me the same answer as Dr. Everit. She also told me that PCMC has came along ways in the last 4 years and the transplant organization is basically the same. She also said that she would be sad to not be part of Kenzie's care anymore, and that I wouldnt be able to call her for answers, but she would still be my friend and a support system if we choose to transfer care. And she knows how hard it is for our family to be away from Tyler for so long. Which I told her I love Tyler with all my heart and miss him dearly but I would rather have the best care for Makenzie.

So at the end of the week Tyler and I thought and prayed about it and we came to a conclusion that we would transfer her care to Utah. (Just writing this makes me sad to say it). Only because Makenzie has had so many issues with her new heart and we don't want to wait like last time she went into rejection and got life flighted to Colorado and went into Cardiac Arrest when PCMC could have started treatment instead of us waiting for hours to get her to Colorado to get treated.

Yes it is very hard for us to put her care soley into PCMC since The Childrens Hospital has been there since day one for her and knows everything about her, but both hospitals have there best interest in Makenzie and want the best care for her. We are surely going to miss everyone in Colorado and are so Thankful for all that they have done for Makenzie and all the amazing people we have met and became so close to (writing this is making me cry) They are certainly amazing people and I am glad we made friends out of all of this. And I sure hope we can still keep in contact with everyone.

I guess we will just have to go and visit every other year for a mini vacation. So we can visit everyone that has been a blessing in our lives.

The Cath

Friday morning Kenzie was set up for a Cath to get a biopsy done to see how severe the rejection was and to see if it shows what kind of rejection it was. 9 a.m it was her turn I was able to walk her down, seeing her scared and crying made me cry which didn't help her at all. But to help her they put on a CD which was of course none other than Hannah Montana.

About an hour later my pager went off and she was ready to go to the recovery room, but while walking to see her come out of the cath I saw the Dr. and he showed me the results and her pressures were high. It was a 20 which apparently is high. But did not find cellular rejection, but can't rule out vascular rejection. Which means it is a mild rejection but they are treating it as moderate.

They are treating her with steroids and IVIG which is an immunoglobulin. plus 7 other meds to help her heart and side effects which may be caused by some of the meds.

They also did an Echo again to see if there were any changes and it came back the same so it didn't get worse which is good, so the plan was to leave the hospital Monday, and finish treatment at home and be seen once a week for check ups.

And that is just what happened we got discharge Monday and boy was Kenzie and Braxton excited. Me on the other hand is always scared to leave the hospital when something like this happens.

Thank you all for the love, support and prayers you gave to Kenzie and my family. What a wonderful miracle kenzie is. I love you sweet girl.

Another trip to the Hospital

Wednesday night Kenzie was feeling her chest and asked "what is this" so I felt it and it was her heart beating super fast. So I grabbed the stethoscope and listened to her heart and it was going about 140 bpm which is unusual for kenzie but I figured it may have been because she was crying earlier and was still recovering from her tantrum.

So I put her to bed and about 30 mins later I went in and checked her heart again and it was still 140 bpm, so I new it wasn't from her crying so I called the transplant coordinator in Denver and Carrie called me back and told me to check it in another hour and if it is still fast to call in the morning and make an appointment and get her checked out. Of course I had her sleep in my bed so I could keep an eye on her and make sure she was still breathing through the night.

Well morning came and her heart was still beating fast so I called at 8 and talked to Emily and she told me that she would talk to Dr. Everitt and see what she thinks and call me back in a few hours. Well Hours went by so I called and she told me that i could take her to her pediatrician or bring her in if it makes me feel more comfortable. Well duh I always feel more comfortable when I know if she is ok or not.

So I took her in around 2p.m and right before we got there Carrie called me back and asked how she was doing and if we went in, I told her we were just walking in and she told me to have them check her pacemaker to see that was causing her high heart rate, something I didn't even think of. That's why we love her.

So we got checked in and Emily came in and checked her heart rate and it was beating 165 bpm so I asked if they were going to check her pacemaker and she said good idea so they came and checked it and found to be in atrial flutter, so they were able to override the arrhythmia with her pacemaker, and got her heart rate back to normal. They then took an Echo and that showed just a little bit of less function then normal but wasn't bad. So they admitted her to the hospital. To treat her for rejection. The amazing thing was that Kenzie was able to notice that something was wrong and let me know that her heart felt funny. What an amazing little girl I have.

My heart sake to the ground, last rejection was so horrible and sever that we almost lost her. I cant help to wonder what I am doing wrong, I try to keep her clean and healthy as possible. But this is her 3rd rejection in 4 years. I think its time for a bubble lol.