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the unit, alex, nicholas and i went to the hospital yesterday to see Andrew. he's back on the sixth floor, Respirology. it was great to hear him complaining and swearing! {never thought i'd say that}
the medical social worker stopped by and we had a good talk with her. she said that after Andrew's first two episodes of hepatic encephalopathy {the liver's malfunctioning affecting the brain}, because they happened when he was NOT in the hospital, the doctors were very much concerned with external stimuli to possibly explain what had happened. however, since the third episode happened while he was IN the hospital, the focus is now on his medication. ok. you'll excuse me now while i make an "excited utterance" {this is a legal term. i heard it on nancy grace}. DUHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!
however, she did explain that Andrew's illness is manifesting in an atypical way, specifically, the unfortunate ease with which he can slip into a coma, even while being closely monitored in the Step Up unit, as happened on saturday. she said that the course that his illness has taken in the past month is NOT seen..
i pointed out the obvious, that Andrew wanted to come home and that everybody wanted him to come home, but that of course, we wanted him to be well enough to be at home. she said that the hospital is in no rush to discharge him, and that they are working to tweak his medication, specifically lactulose {which aids the body in dispelling toxins which the damaged liver is unable to process}.
on the subject of liver transplant, i know that it was necessary for her to advise us that it's possible that Andrew may not qualify.
but. he has to, so i'll move on.
the transplant team at toronto general hospital is well aware of Andrew and the severity of his illness. Andrew's gastroenterologist, who is such a hero to me, has been in contact with the team. i asked how long it can take for a person to be assessed and the social worker told me "weeks or months". Andrew was only told last month that he was being recommended for transplant, but hopefully, an assessment is imminent. if there is one good thing to come out of the horror of the past weeks, it's that because it's crystal clear how sick Andrew is, he will likely be assessed more quickly and end up further up on the transplant list.
he's lost so much weight. much of it had to be lost, because it was a life threatening pooling of fluid.
his beautiful brown eyes. that gaunt face. break my heart.
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Morphia....
I have been reading along on this thread as you add to it.
I just wanted you to know that although I have said nothing, does not mean I don't feel anything for you and Andrew and the family.
I have taken care of people all of my adult years, in nursing homes, group homes, assisted living facilities, private homes, and my own Adult Family Home. And now it's getting to the point where I am called for every one of my parents' medical appointments, and follow up on their care.
But how one does this, as you have done and are doing, is something nothing short of beautiful.
I do not know how well I could manage if it were my own child had severe health issues....
thank you for sharing this part of your life with us.
~touched...~
God bless.
Kelly
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thank you so very much for your kind words, Kelly ~tight hugs~ Lisa
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Morphia,
i just wanted you to know that i have been keeping you and Andrew in my daily
prayers. i know what you are going through as i have been there with my own
brother as you may know. i am hoping and praying that a liver is found soon and
your worries can stop.
Am sending you love and hugs even though you can't feel them, they are here
for you. Hold on brave woman, the Lord is at your back...
love, debra
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Offers you a healing hug, Morphia. Prayers continue for Andrew. My heart so goes out to him and you ~hugs~.
Love the one you're with 
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thank you so very much for your prayers and your continued support. i never forget people who are kind to me when things are tough
~tightest hugs~ db
thank you, ML, so very much
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i called the head of Respirology, but she is out of the hospital today. i was referred to dr. "s". i told her that i had questions and concerns. she interrupted me relentlessly at the beginning, which i hate. at one point, she said something like, we seem to be on the same page. i don't know what we're arguing about. well, i thought, if you would let me say more than three words at a time...i persisted in getting my points across and gradually, she seemed to realize that i was not retarded and she hypered down.
1. i told her that since Andrew was in a bout of encephalopathy at six am on tuesday, wandering in to other patients' rooms, i was very concerned that he might leave the hospital in a stupor and be grievously harmed. i asked how often Andrew was checked on. she told me that he was checked on when meds were given to him, etc. i told her that that was not enough, that he needed to be checked often. she told me that there was not enough staff to do that.
however, to my great relief, she called me back and told me that Andrew has been assigned a sitter, twenty-four hours a day, since tuesday, and that there was no plan in the foreseeable future to stop this practice.
2. i asked if all of the nurses assigned to Andrew were aware that he is prone to bouts of encephalopathy and if they knew what the symptoms were. she assured me in the positive to both questions.
3. i told her that when the unit was leaving the hospital on tuesday {Andrew had had another bout that morning}, one of the staff asked him, "Mr. Unit, would you please ask your son to behave?". i told her that this was a ridiculous thing to say, given the fact that Andrew is NOT responsible for what he says or does when his poor brain is being affected by the liver's malfunctioning. i said that such a statement were just as ridiculous as if said to someone in a psychosis, because encephalopathy is a neuro-psychiatric state. she agreed whole heartedly with me and said that no matter who had said this to the unit, that EVERYONE would be reminded that Andrew has no control over anything when he is having a bout of encephalopathy.
4. i said that when the unit arrived at the hospital on tuesday, he found Andrew LUCID and still restrained. she argued that because Andrew was being verbally abusive to the staff, that he was still encephalopathic.
she told me that it was great that i called with my concerns and said that lots of patients don't have family members stepping forward. and i thought, honey, i ain't going anywhere, so you TAKE GOOD CARE OF ANDREW.
i told her that i wanted to speak to the nurse manager and she gave me her number. i called "k" and had a much easier conversation with her. i went over the same points. she understood and agreed with my concerns about Andrew's safety when he was having an episode and assured me that for the foreseeable future, Andrew would have a sitter in his room twenty-four hours a day. she agreed that what was said to the unit, about asking Andrew to "behave" was grotesquely out of line and would be dealt with. in opposition to what dr. "s" had said, "k" said that when the unit arrived at the hospital on tuesday, Andrew was JUST coming out of his bout of encephalopathy. i told her that i thought it was horrible that a person who was lucid would still be restrained and she told me that the policy is of minimal restraint, only when absolutely necessary, and that Andrew was still restrained when the unit arrived because Andrew was just "coming to" at that point.
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| Please know that others do care about you and Andrew, hugs you tight, thoughts and prayers follow you both~
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| 'hugs on Morphia' Like Debbie said hon....we care very much about you,and think you are wonderful for the strength and love you have for your family...... I hope this chat with the Dr's ensures that Andrew is getting the right kind of care and with the respect he deserves 's'
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i hope things turn for the better real soon and that a donor is found and everything runs smoothly
i'm keeping you all in my thoughts and heart <3
love you my rollerblading buddy *smooch*
~~**~~
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