Our broken hearts

I'm not even sure how to really say where we are on our road right now..  our hearts are hurting, we are trying desperately to process everything.
Madilyn had a sedated CT scan a few weeks ago to look for erythropoietin secreting tumors.  The whole experience was terrifying.  We went in expecting a simple sedated scan with contrast and apparently the contrast is different than the one used for MRI's or her feeding tube changes and she had a severe allergic reaction to it.  A, she couldn't breathe and covered in rash and hives, kind of reaction to it.  When she came out of the scan and was through the roof agitated they said they only brought her out because they needed me to help calm her down.  Her heart rate at this point was around 200, which even for her is crazy high.....  in the process of trying to soothe her they filled me in on her allergic reaction and the fact that on the CT scan it showed that her lungs are full of something... there's a spot in her right lung that they were unable to clearly determine if it is a nodule or mass of some type....her bronchial tubes are significantly smaller on one side... and her right lung is partially collapsed.... yes, epic mommy sobbing meltdown ensued following this news and many many times since.
We are scheduled now for a bronchoscopy for our pulmonary doctor to go in and get a really good look at what's going on in her lungs.... then they are going to flush her lungs with saline (aspirate her) and catch the backwash to be sent to the lab for testing.  They need to know if it's mucous, bacteria, whatever it is... then they are going to clean out her lungs via suctioning.  Yes, the whole thing is as horrible as it sounds and her recovery has the potential to be incredibly rough.... we are terrified... we have to know what is going on because her body is signaling via her blood that it is not getting enough oxygen to support it. 
We are experiencing episodes of extreme agitation and times where she literally stops what she's doing and puts her little hand on her chest and lets out this little noise that sounds like she's saying "ooh"... she will also take my hand and place it on her chest and scream at me... she's trying to tell me how much pain she's in and it's heartbreaking.
In the process of trying to absorb all of the reality with the lung issues her hematologist informed me of where we are at now..... papers are being submitted to insurance for approval for a specific genetic test.. it's the JAK2 Gene Mutation test.  Since there are no tumors emitting the high hormone levels there's one of two things driving it...  it's either the gene mutation or it's a problem with her bone marrow... neither one is a good option and the only treatments that we are aware of are not an option.  The only treatment is chemo and a stem-cell transplant which she would not survive and we will not put her through.  We do however have to determine the source in order to know timelines, comfort measures and therapeutic treatments. 
Madilyn's at triple the normal risk currently for heart attack, stroke and blood clots and that's before any of the lung issues are even figured out or included in that risk factor.
This is sooooo overwhelming for us to try and process.  We always knew that every day with Madilyn was a gift and that her life expectancy wasn't very long but to have come this far and now actually have a Doctor start talking comfort measures sucks the wind right out of your sails.  We may get several more years, the truth is we don't know.  What we do know is that her little body is under extreme stress and we are trying to figure out what to do to help her.
I'd love to end this with some catchy little upbeat phrase about those pink fucking shoes but at this moment in time all I've got is a broken heart and those pink fucking shoes....