April 14, 2022

Greetings. So it looks like the heart catheter is no longer necessary since she had one last summer. If she has not had the transplant 1 yr from the last catheter, then she will get one at that time.

At the present time we are waiting to hear back from the hospital regarding the MRI(they said they are waiting on insurance to approve it). Which I totally don’t understand because when the transplant evaluation was approved the first time, any other tests associated with it should’ve been approved also (is what I was told).

So I have been back and forth on the phone every day with the insurance company and the transplant coordinator in Pittsburgh asking why there is a lack of communication between the two of them. So frustrating.!!! She will also have an ENT consult while she is there and an anesthesiologist will come to meet her when they give her medicine for the MRI.

Got her dental clearance last week so we can check that off the list(mouth has to be free of cavities and infections prior to surgery). If not, an infection in her mouth could cause a major infection in the body after transplant.

Yesterday we met her new adolescent pediatrician. (Her previous one retired that has know Kendall since day 1). She wasn’t affiliated with CHM but this new doctor is part of CHM so now at least everyone has access to the same records. She did receive 2 vaccines. I think I mentioned that in the last post that the infectious disease doctor wanted her to have them. The HPV vaccine to help prevent any cancer that could develop later from having a donor organ and the pneumonia vaccine to boost her immune system.

She did tell the doctor yesterday that she wanted to start talking to a therapist so they are setting that up for us.

Still waiting to hear from PT/OT and the neurology department so that she can get started with the recommendations per Pittsburgh.

So we will be making a trip back to Pittsburgh but dates are unknown right now but it should only be for a day or two when we do go.

It seems like I am forgetting to tell you something but I can’t remember right now. It may or may not come to me later. lol

xoxoxoxoxoxoxoxoxo

Cewanda

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