Pittsburgh transplant coordinator

Greetings everyone. I hope everyone is having a great holiday season and for those that I know are not because of sickness and/or bereavement, you are in my prayers.

I spoke with the transplant coordinator from Pittsburgh a few hours ago. She was calling to let us know that the doctors are looking at all of the records that were sent to them and she would give me another phone call “possibly” next week to schedule an evaluation date. She said “if” Kendall is a candidate. I asked her what that meant. She said they go through the doctors notes/records very carefully and if Kendall has had a lot of missed appointments, or if we weren’t giving her medications correctly at home over the years she would not qualify because taking all your medications on a specific schedule is key to having a successful transplant outcome.

If those are 2 of the top reasons to get disqualified we have nothing to worry about. You know that has been something we have mastered. Appointments and medications. lol

The coordinator couldn’t give us too many details until she got confirmation from the doctors but she said some of the standard things to expect for the evaluation in Pittsburgh is: 3-4 days of doctor appointments with (cardiologist, surgeon, infectious disease, hematologist, lung, and child life specialist(professional that will help explain to Kendall what is happening). Also the coordinator said she would help make arrangements for us to stay at the Ronald McDonald house for those days. We(me and Damon) are still undecided on how much we want her to know. Not trying to withhold anything from her but she really doesn’t understand much of what’s happening. I think because of the stroke years ago she really is unphased about any conversations about her heart or health. So at this point why tell her anything that will confuse her or make her scared? I just want to let her be the happy, unbothered child that she is. I know when we talk to the child life specialist she will help us out with all of this because this is their expertise.

Continuing to pray in faith for her life, health, strength and healing.

xoxoxoxoxoxoxo

Cewanda

#heartwarriorKT

#TeamKendallT

#girlpower09

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#PulmonaryAtresiaSubglotticStenosisTriscupidAtresia

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#BeKendallStrong