Rejection

Once again that creepy little word snuck up on us again.  Kenzie was having palpitations in August so I took her into the ER. (it always happens at night, probably because that is when I listen to her the most). Any time I hear anything out of her normal I take her in just because you never no.
We arrived at the ER and they did tests and everything came back normal so they sent us home. A week later we are back in the ER and this time even though everything looks good except they did see irregular heart beats they admitted us because Kenzie was scared to go home. I love that her cardiologist listens and doesn't push us out the door just because her echo looked good.
The next day they decide to do a biopsy on her and it did show mild rejection which normal they said they wouldn't treat but did just because of her symptoms. Which means the lovely Prednisolone(Steroids) which leaves my sweet, happy, loving baby girl, into a fussy grumpy girl. It also lowers her immune system even more to wipe out the antibodies that are attacking her heart.
Makenzie has been having bad anxiety since she had her pace maker replaced in June so this rejection has caused more anxiety which probably doesn't help her heart. I am so thankful for her doctors and when I have concerns or Kenzie has concerns they try anything and everything to try and reassure us. This time around they had Makenzie put a 30 day event monitor on her to record when she is having symptoms. Thankfully her heart showed no serious signs but it did show rare extra beats from the upper chamber but certainly no sustained tachycardia or problems and they were pleased with the results. On the other hand I have been so uncertain and confused why she is still having these on going symptoms after getting off the rejections meds. I actually started crying at one of her clinic visits because they kept trying to reassure us that from their stand point ever thing looks good, but I couldn't except it I guess and was so freaked out that something terrible would happen if it didn't get better. Dr Everitt sat by me and asked me my concerns and tried so hard to tell me everything looks good and unfortunately they cant control everything but from medical stand point her heart looks perfect. I have come to hate the unknown and it terrifies me when things aren't looking or sounding normal for her. So they agreed we could come once a month, which that is what we have been doing since her transplant, she can never seem to go longer. Every time we do she ends up in the hospital. But I am ok with once a month it gives me peace and comfort that she is being watched closely and if there is anything hiding hopefully they would catch it.
Fast forwarding all through Sept and Oct she has been still having palpitations, but her echo's all continue to look good at clinic.
Finally November came around and I haven't heard any funny beats and she hasn't felt anything either. I still get very anxious at night when I listen to her because we have learned you have to live one day at a time and with these heart kiddos things can go from awesomeness to hospitalization with in matters of minutes. It does make me feel a lot more at ease now that her heart is beating like we like it to. Prayers that it continues this way and she will have an amazing winter.