Christopher's Brain Injury 10

Thursday, April 29, 2010, 10:00 pm Three hours ago, at around 7:00 pm, Christopher's ventilator was removed and he immediately began breathing on his own!  This morning they turned the ventilator way down so that they could observe how he responded.  During rounds, Dr. Newman said that she anticipated extubating him sometime today or tomorrow and when I asked her how she would know when the time was right, she simply said, "Well, Christopher will let me know."  I love watching this brilliant physician practice medicine.  This is a teaching hospital, so listening in on rounds is quite interesting and always a learning experience.  She told me one day that the legacy she wants to leave is not only that she "took care of patients," but that she "cared for them."  That is precisely what she is teaching these Residents and Fellows as they make their way around the PICU every day.  They are learning from the best and what they are learning cannot be read in a textbook.  Dr. Newman is teaching by example and is raising up a new generation of doctors who will truly know the meaning of the phrase "physician care."   As I sat in the PICU this morning, visiting with my dear friend Angela Mason around 11:30 am, I noticed that the Infectious Disease Dr.'s heading over to Christopher's bed were 'suiting up' in disposable scrubs and gloves.  Alarms went off in my head so I located his nurse, Lily and asked her what was going on.  It turns out that they suspect he has something called VRE...Vancomycin resistant enterococcus...which is hospital acquired (my friend Sharon who is a nurse brought me up to speed on this).  It is a concern in hospitals because it is resistant to many of the usual antibiotics (which is the case with Christopher) and therefore harder to treat when it causes infections and it can live on almost any surface for extended periods of time and so therefore is easily spread.  It appears that the infection is colonized, meaning that he has the bacteria in his system but shows no symptoms of illness.  Colonization is not usually treated, but the patient is isolated to protect the spread of the bacteria.  While they have not chosen to isolate Christopher, they did decide to take what they call "contact precautions."  This means that anyone who touches Christopher needs to wear a disposable gown and gloves and then upon leaving the PICU, they need to once again scrub their hands (which we do every time we enter).  I found it rather humorous as I watched them place "caution" tape on the floor around his bed (see above photo).  We have made the decision for now to limit visitors into the PICU to family members only.  As the days of this semi-isolation go by, we might decide that it is important for Christopher to begin seeing close friends, and we will be sure to let you know.  They anticipate this lasting approximately 10 days.  Christopher has been on several narcotics during the past 8 days and as they wean him off of them, they are giving him Methadone which is used as a pain reliever and as part of drug addiction detoxification.  With his ventilator and c-collar removed, we believe that he will be much more comfortable.   Back to the removal of Christopher's ventilator... Paul, Emily and I were fortunate to all be present for this momentous event (see photo).  Once it had been removed and his nurse, Autumn was settling him in, he said, "I'm cold!"  Yes...Christopher felt cold, thought what to say, and then said the words!!!  Everyone was celebrating!  He has since told us that he wants the sounds to stop (the alarms that constantly go off) and that he wants us to "let go" of his arms as we hold him down.  He is tethered to his bed because he desperately wants to pull out anything that is inserted or attached to his body.  He tries to sit up and drifts in and out of consciousness and has not been fully lucid yet (not even near!) but he is still mildly sedated.   My day is ending on a sweet note.  I am sitting here in my chair, about 15 feet away from Christopher's bed.  About 30 minutes ago, Autumn asked me to go over to him and help calm him down because he was pretty agitated.  As she walked away from his bed, I was left alone with him, holding both of his hands and leaning over the side rails.  He was thrashing from side-to-side and mumbling something which was not discernible.  I found myself transported back to the days when he was an infant and toddler when he would fight that ever-so-elusive sleep.  In those days, I knew that he was so very tired but just didn't want the day to end.  If I ran the palm of my hand gently down over his heavy eyelids, he would leave them closed longer and longer with each pass.  So there I stood tonight, with my 13-year-old Christopher, doing the same thing, so many years later and whispering, "shhhh...shhhh...shhhh..."  He slowly relaxed, giving in to the exhaustion that I know he must be feeling, and finally kept his eyelids shut.  I then placed the palm of my hand over his cheek and just left it there, which he used to love so much.  As I watched him drift off to sleep, the tears ran down my face and I thanked God that not only is my child alive tonight, eight VERY long days after his fall from that tree, but he is also showing clear signs of coming back as the beautiful, exuberant child I know and love so dearly.  I am overwhelmed with gratitude... Love, Laura