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View Diary: Science Friday: The Breath of Life (138 comments)

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  •  My daughter-in-law has PAH (1+ / 0-)
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    My daughter-in-law was diagnosed with severe, chronic and sometimes acute PAH two years ago.  There is no known reason in her case of why she got the disease, she is 34 years old.  She was recently in the ICU for six weeks with sepsis, staph infection and a vegetative growth on her heart.  She almost died three times while she was there and was only released to go home when a qualified nurse was found that would go to her house every four hours.  It isn't a life of the living, it is a life of struggling to maintain life.  

    She has a fanny pack with Remodulin around her stomach that is fed through a catheter 24 hours a day.   Because she had the staph infection, which she got during another hospital stay, she is also on high doses of a potent antibiotic.  This has to be refrigerated, both have to be mixed carefully, it takes two to do most of it. She administers the antibiotic every six hours and will for a month.  She has a separate port to administer the antibiotic.  She also gives herself injections in her stomach twice a day.  She sleeps with a tank of oxygen breathing life into her.

    I have three beautiful grandchildren.  Mikayla is the oldest, she is a teenager, she is also confined to a wheelchair, she doesn't speak, she only walks with help and can't go far even with the assistance.  She doesn't feed herself, she is and always will be in diapers.  Her mother is a vital part of her life, she's often discontent, and restless when her mom isn't in the room.  

    My grandsons are 12 and 7 years of age.  Nothing is hidden from them, we are a family that belives children deserve to know the truth, no matter what that truth is.  It is not lost on them that their mother spends an inordinate amount of time each day trying to stay alive.

    The six of us just spent four days together when they all came up to visit me.  I live 2 hours away taking care of my father who has cancer.  Those days were exquisite, there were heartbreaking moments to be sure, but mostly there is this sense of being connected in a way that is hard to express.  Whether it be husband to wife, or brother to brother, or mother to daughter, or mother to son the one thing that overflows and is greater than anything else is the love between us all.

    I stayed at home with Mikayla for a few hours while the rest of my family went swimming.  We spent that time doing what Mikayla loves most, she would look at me and lean in, I would meet her face with mine and give hundreds of little kisses to her cheek, she would pull away smiling and then lean in for more.  

    That pretty much summed up for me how it goes with my family.  We're all just leaning in giving each other love and hoping for a miracle.  

    'Men, their rights, and nothing more; women, their rights, and nothing less.' Susan B. Anthony 'Cali, you kick 31 flavors of ass.' Eugene

    by caliberal on Fri Jul 21, 2006 at 10:50:01 AM PDT

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