the highs and lows of post transplant life

I don't even know where to begin. Two and a half years ago, I wrote on Facebook that I needed help, that I needed prayers. And I am asking for that again, right here.

Matilda has had a chronic cold and persistent cough for about six months now. I have voiced concerns, she has been put on antibiotics, but it always comes right back - nothing seems to help. So our pediatrician suggested that we see an ENT to get her adenoids removed. Only, there isn't an ENT in the area. So we waited to see if we could get into one in NYC, but they wouldn't see her because they don't accept our insurance.

Then, at her appointment with the transplant team a bomb was dropped. The ENT we end up seeing will need to take tissue samples to test for Epstein-Barr virus - a common virus that most people acquire immunity to, but can be life-threatening to immunosuppressed people (like Matilda).

My heart is weary, my soul tired, and my mind frustrated.

I have spent countless hours on the phone going back and forth and leaving messages hoping to get Matilda into an ENT in Syracuse as soon as possible. It could be nothing, she might just need her adenoids out. But I would like know and know as soon as possible what we are up against.

Everything else looked great. Her labs are all perfect as usual. Or almost perfect - her phosphate alkaline levels are off the charts high - but they have seen that before and think it will adjust itself. Matilda also saw a kidney specialist to revisit the high blood pressure issue and complete some other annual tests to check on a few things.

We didn't have much down time in the city, but we were able to make it to the zoo in Central Park which was a highlight for all of us. Both kids are at a fun age for animal watching, and their excitement and joy was exactly what my heart needed.

Above everything else that I do, I am their mom. They are my biggest priority, my greatest adventure, and my happy place. So here I am, asking for prayers. Asking that Matilda be okay. Asking that my heart be calmed. Asking that everything will be okay.

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