monday update

First, let me say that we are the LUCKIEST people in the world to have such a loving and helpful network surrounding us throughout this journey.  THANK YOU for your prayers and THANK YOU to everyone who helped us last week – by being there and/or just saying a little prayer.

We met with Oncology Friday morning and the doctor was great.  VERY chill, very nice, and I was very open with him about how it was nice to meet him but I hope I never see him again :).

I’m sure he gets that a lot.

He examined Bea, looked at her labs, her history, etc and at this time does NOT think this is a PTLD (post transplant lymphoma disorder) situation.  He thinks her lymph nodes are swelling because of what is going on in her LUNGS not because of the EBV. That was good to hear.  He also said that he won’t know for sure until we get some of these results back from the bronchoscopy.

After that appointment we headed up to same-day surgery for the bronchoscopy.  Bea was great.  She hadn’t had anything to eat or drink since 5pm Thursday night and she finally went back for the bronch at 1pm.  It was a long time to go without but she was a trooper.  It was really hard taking her back for anesthesia because she was pulling on me and screaming for me but I had to stay focused and remind myself that this hardship was going to help us find answers.

Procedure took about 30 minutes and when they called us back she was going crazy.  Ugh.  Her eyes were closed but she was screaming and thrashing and by the time they said we could go, I couldn’t even get clothing on her so I had to walk her through the hospital and to the car with just a diaper while she was screaming with her eyes closed.

Awful.

She settled into bed and was chill the rest of the day.  We had left at 8am for the hospital and got home at 4pm so it was a long one but I was SO thankful the week of doc appointments was finally over.

The results.

Results are trickling in.  They identified that she has a TON of mucus and puss in her lungs.  What is causing it?  Well that’s what they are trying to figure out  – is it EBV related or just something viral or bacterial that is causing her lungs and lymphnodes to act up?

So far, the things that tested positive were rhino virus (a cold) and she has bronchitis.  Good news they found something but WHAT is causing it?  There has to be something else.

So that’s where we are.  We are still waiting on results.

Bea is happy happy happy and acting totally normal.  No fever, no fussiness, appetite is great, etc.  From the outside, she looks healthier than ever.

We are just hoping they can figure out her insides.  Waiting on some direction today and will keep you all posted.  THANK YOU, again, for your love and support.

[Waiting for the bronch.  :)]

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[Finally home…and with a life size mermaid thanks to Jordan & The Spotted Goose.]

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#BEAstrong

Hillary

 

 

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