Hello everyone. Hope you all are well. Thanks for all of your continued support especially this month by wearing Red and wearing your Beautifully Scarred shirts on Thursday the day of her appointment!!!
First update: Kendall’s lung doctor(in Detroit) ordered a sleep study because her oxygen levels have been in the 80s the past few appointments and she wanted to see what her levels were when she was sleeping. Oxygen levels were mid to low 80s while sleeping so the doctor wanted her to have low dose oxygen at home. Primarily at night but also during the day if she feels tired, short of breath or oxygen level is 80s. Since we have to check her oxygen level 3 times a day now, she is actually as high as 94% during the day. Before she goes to be if it’s in the 90s I don’t put the oxygen on her because the cardiologist doesn’t want it above 95%. Oxygen levels too low or above 95% are not good for her condition. It’s basically a balancing act!!!
We have been going this for about a month now.
For a few different reasons we have decided to have her listed in 2 hospitals at the same time. She is being evaluated at U of M Motts children’s hospital to see if they will accept her as a patient. The evaluation consists of meeting with all specialists (heart, lung, liver, stomach, surgeon etc..) also having an MRI an a cardiac catheter. They will do the same tests she had in Pittsburgh but each hospital has to do their own tests because they may or may not agree on the same plan of care. The only reason U of M would say that she is not a candidate for their transplant team is because of her lungs. In their evaluation if they decide she needs a lung transplant also and/or feel she is too high risk, then Pittsburgh will be the only hospital she will be listed at (reason being is U of M does not do heart/lung transplants) and Pittsburgh does if it was necessary.
The process takes several months to get all of her tests done in Ann Arbor so in the mean time she will continue to see the doctors in Pittsburgh and also at Detroit Children’s Hospital for any checkups needed in between visits. I know this probably waaaaaayyyy too confusing to everyone but I hope it makes sense.
When U of M completes their evaluation and she is accepted she will then have a dual listing and her chances of getting a new heart will be increased. Which ever hospital gets the call for a donor heart for her, she will be transplanted at that hospital.
We are still believing God for another miracle and so thankful that she is well enough to be at home while she waits.
Thank you all again for going through this journey with us. It means the world to us
#TeamKendall
#heartwarrior