Wednesday, June 18, 2014

Life and Death keeps happening.

I was trying to figure out how to proceed yesterday.  Kid has been sick, cough, really bad cough, ache body, not out of bed.  I had a touch but with some ossillium and some long hours of sleep, I was able to knock it back.  Blessings of having a completely strong, healthy immune system. 

So she is not Emergency worthy. She should not be a Seattle Children's spreading this thing and is NOT that sick.  She has a cold.  So on day 5, I make an appointment with our family practice.  Nice new doctor.  She really is and it takes her a while to realize we aren't kidding when we start to say things. 

Yes, leukemia twice, Double cord blood transplant and menopause.  Port, blood clot history.. she feels the thyroid and says it feels fine.  We mention there is not working thyroid.  I am sure she thought we were (Secret Weird Patient).  So she suggests and X-ray, I think it is over kill but after a call to the SCCA they want one. We ask about going to Children's because it is close but no.  Then they ask if they took a nasal swab.  Of course they didn't.  They don't do that in real doctor world.  

So basically we failed to get the job done. I can see the call is coming today to go back to either Children's or SCCA and get swabbed for Strep and to snot in a cup and there will be cultures and more investigation.  Her heart rate is 122 and that tells them her lungs are working. I don't want to get too close to the hospital because we know what happens there....

So in one world I have a 21 year old with a cold.  Feels miserable, just home from college.  But because she has spent 10 years in Cancer World, I take a kid that clearly has a virus to see the Doctor.  

In Cancer World, it is serious.  It could be, pulmonary embolism, weird pneumonia and let me tell you.  They will culture and swab and image her to death.   So since we have one foot in and one foot out... today we make the calls and figure out what to do.  
She slept last night so I think she will be fine.  But then I am reminded how fragile these kids are and how a cold can take you down and not in a good way. 

So while I am whining about this stupid cold and how inconvenient all of this can be Momcology brings us Lulu.  A month ago she was going to prom, she was graduating she was spending time with her family. 

5 days ago she was sent to the ICU with high fever and poor lung stuff and she is so so sick.  This was her mom's post this morning.  

Lulu Ysarua Martinez Has Collapsed Lungs And crashed at 430..they now have her on stomach and adjusted ventilator to keep lungs open longer and less pounding on the lungs which is causing inflammation. .doctors said next hours critical. ..looks like to save her she will have to go on the ecmo machine. ..they told us she doesn't have the capabilities to heal on her own ...will update later.

I don't know these people, I will probably never ever meet them.  I will however remember that there are two paths on this road of life.  While I feel we have missed out on so much because our life has been stagnate and boring and complicated by this thing called Cancer and life has passed us by.  I will also remember Death has passed us by.....

Prayers/Chants/Rants/ for Lulu.... A lovely lovely young woman who wants to live her life like a normal person.... No on her stomach in a hospital bed surrounded by monitors and other such invasive things.  

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