Jan is going home again this weekend! After a thorough conference with Jan, the nurse practitioner and the SW were satisfied that Jan indeed wanted to come home again. They have encouraged her to make her own decisions in things like visits, and sometimes in whether she takes some medications or not. This gives her a sense of more control on what is happening in her life right now. In every other aspect, the institution decides for her. Freedom seems so illusory for her now, yet, in a paradoxical way, she enjoys some of the structure and sense of protection this institutionalization brings, like having a bed with side railings or having regular schedules.
She is happy with the idea and has mentioned a few activities she would like to do.
We are planning a quiet Friday night probably watching a movie or listening to music. She will probably be asleep by 9PM.
Saturday will be a visit day. The family will probably come around noon. Everyone else is welcome in the afternoon. Keep in mind that the room capacity of our living room is 178 people standing... if you are the 179th visitor, you may have to wait in the back deck. If you are planning to visit, bring your guitar or violin or flute. We have a piano, so there is no need for you to bring your own. Jan usually goes to sleep around 8:30PM.
On Sunday, we may go out for lunch. We have to be back at the hospital by 4PM.
Please let me now if you wish to join us in any of these activities in advance so we know what to expect.
This weekend will be a good preparation for Jan's move to the Bridgepoint Rehab Centre where she will be moving on Tuesday or Wednesday. Martha has a very good friend there and last night was telling me that that would be the best option. Thank you for your prayers, Jan is going to the right place!
We know that Jan's Easter will have a resurrection in many levels. Blessings,
-Fede
Thursday, March 30, 2006
Rehabilitation
Bravo!!!!
The Social Worker and the nurse both confirmed this morning that there is a place for Jan at Bridgepoint (end of the DVP and Gardiner) in the Riverdale area. She will be moving sometime Tuesday or Wednesday.
Jan was very happy to hear the news. She is looking foward to more intense training (yeah, that's right, she is the same...)
Pray that we can connect with Martha's friend.
Keep checking in this blog for more details.
The Social Worker and the nurse both confirmed this morning that there is a place for Jan at Bridgepoint (end of the DVP and Gardiner) in the Riverdale area. She will be moving sometime Tuesday or Wednesday.
Jan was very happy to hear the news. She is looking foward to more intense training (yeah, that's right, she is the same...)
Pray that we can connect with Martha's friend.
Keep checking in this blog for more details.
Wednesday, March 29, 2006
Serenade at D57
Tonight, Jan got a serenade by the Symmetry Singers of Saint RUC of the Fields. This is the group Jan has led before, now they came to share with us beautiful music and lots of happy smiles. Jan was thrilled, her joy was overflowing. Everyone was enveloped by the magic of the music and the misterious bonds that music can develop between people.
At some point, Jan was marking the rythm and laughing because the musicians were not in step!
What a gift tos ee Jan so happy.
Thanks to the singers, the players and the one who didn't do much but were present to enjoy the moment.
-Fede
At some point, Jan was marking the rythm and laughing because the musicians were not in step!
What a gift tos ee Jan so happy.
Thanks to the singers, the players and the one who didn't do much but were present to enjoy the moment.
-Fede
Aphasia
The day a small piece in Jan's vascular system broke it was like Alice's fall in a hole that landed her in Wonderland. There, not everything is what it seems. Words could mean something or nothing, and any path you choose will take you nowhere if you don't know where you are going. Maddening, frustrating, surprising, and sometimes plainly clear. Jan has been in the Wonderland of her injured brain where she knows what she wants to say but the tongue, and the lips and the teeth will just not cooperate. In the same land, she knows how to move the right hand and her brain knows what the right hand is supposed to do to play a guitar, but the fingers and the wrist will just refuse to follow any commands and prefer to go on sleeping. Aaagghh! Never mind!
Today, the Speech Language Pathologist spent a long time with Louise, Donna and I, describing the forms of Aphasia that Jan has as a result of the Aneurysm. Aphasia is "the breakdown of receptive and/or expressive language functions", it is the result of trauma to the brain (in Jan's case from a genetic neurological disease). It afects, to varying degrees, a person's ability to:
* understand what is said (auditory comprehension)
*get the right words out. construct an accurate message (verbal expression)
*understand printed material (reading comprehension)
*spell and organize words into a sentence, or draw (written expression)
*do numerical computations (e.g. money matters, telling time, using the phone, scheduling)
*understand or use gestures.
To get out of that Wonderland Jan doesn't need to follow a white rabbit, instead she needs all kinds of rehabilitation therapies to rebuild the broken communication pathways between her brain and the various parts of her mouth. This is why her name is on the waiting lists of three rehab institutions in Toronto: one in Riverdale, one in downtown and one in the Weston/401 area. aS soon as a bed becomes available there, she will be transfered. This could happen at any time.
Given the fact that communication pathways are broken in Jan's brain, the first question for those who visit Jan often is: What can I do to help Jan? More detailed information will be posted in the links in this blog so you can enjoy the time to visit with Jan and in an unstructured way, you also can help her repair what is broken in her communication.
Jan's progress is awesome by any standards. I can see the satisfaction on the face of the physicians when they come to see her. I see the encouragement n the nursing staff. I see the happy smiles from the support staff and the cheering from other fellow patients. Today, Jan expressed with a great deal of clarity her agreements and disagreements with the speech expert's methods. It was wonderful to see her filing her complaints in a logical and precise manner. Some words were missings, but the gaps did not stopped her from getting her message accross. Donna was an excellent "translator" when there was a breakdown. It was just amazing the level of conversation happening in her room for about an hour.
Consider this:
DAY 14 -Feb 24, in the ICU, Jan was unable to speak or sit, her communication was limited ot smiling and holding hands
DAY 18 -Feb 28, I found Jan sitting (slouched) in a chair for the first time. That day the Physio had her standing holding a table for a few minutes -she cried. Later in the day she was moved to a ward.
DAY 20 -March 2, Jan pulls out the NG, IV and catheter. 24-hour sitters are assigned to Jan. Her communication is still facial gestures and hand movements only.
DAY 21 -March 3, Jan starts moving her lips as if forming words but she can only produce small whispers.
DAY 23 -March 5, Jan types in a laptop: Hi and is without any tubes for the first time. Latter that day, she scribbled some words (Please, who) on the log book.
DAY 25 -March 7. Jan says "Hi", and "stop talking, Louise!". Jan is bale to go for Wheelchair rides.
DAY 28 -March 10, Jan is talking more: "I tried the orange juice -tastes awful!" then some garbled words...
DAY 35 -March 15, Jan walked for the first time with the help of a walker. Her speech continues to improve. Her swallowing is almost restored.
DAY 38 -March 18. Jan starts walking with only the help of a hand.
DAY 44 -March 24. Jan gets a weekend pass. Her speech is clearer. goes for a walk outdoors. She is very happy to be outdoors.
DAY 48 -March 28. She has a discussion with the Speech Pathologist...Some words are still missing but there us a dramatic improvement in the last 10 days.
-Fede
Today, the Speech Language Pathologist spent a long time with Louise, Donna and I, describing the forms of Aphasia that Jan has as a result of the Aneurysm. Aphasia is "the breakdown of receptive and/or expressive language functions", it is the result of trauma to the brain (in Jan's case from a genetic neurological disease). It afects, to varying degrees, a person's ability to:
* understand what is said (auditory comprehension)
*get the right words out. construct an accurate message (verbal expression)
*understand printed material (reading comprehension)
*spell and organize words into a sentence, or draw (written expression)
*do numerical computations (e.g. money matters, telling time, using the phone, scheduling)
*understand or use gestures.
To get out of that Wonderland Jan doesn't need to follow a white rabbit, instead she needs all kinds of rehabilitation therapies to rebuild the broken communication pathways between her brain and the various parts of her mouth. This is why her name is on the waiting lists of three rehab institutions in Toronto: one in Riverdale, one in downtown and one in the Weston/401 area. aS soon as a bed becomes available there, she will be transfered. This could happen at any time.
Given the fact that communication pathways are broken in Jan's brain, the first question for those who visit Jan often is: What can I do to help Jan? More detailed information will be posted in the links in this blog so you can enjoy the time to visit with Jan and in an unstructured way, you also can help her repair what is broken in her communication.
Jan's progress is awesome by any standards. I can see the satisfaction on the face of the physicians when they come to see her. I see the encouragement n the nursing staff. I see the happy smiles from the support staff and the cheering from other fellow patients. Today, Jan expressed with a great deal of clarity her agreements and disagreements with the speech expert's methods. It was wonderful to see her filing her complaints in a logical and precise manner. Some words were missings, but the gaps did not stopped her from getting her message accross. Donna was an excellent "translator" when there was a breakdown. It was just amazing the level of conversation happening in her room for about an hour.
Consider this:
DAY 14 -Feb 24, in the ICU, Jan was unable to speak or sit, her communication was limited ot smiling and holding hands
DAY 18 -Feb 28, I found Jan sitting (slouched) in a chair for the first time. That day the Physio had her standing holding a table for a few minutes -she cried. Later in the day she was moved to a ward.
DAY 20 -March 2, Jan pulls out the NG, IV and catheter. 24-hour sitters are assigned to Jan. Her communication is still facial gestures and hand movements only.
DAY 21 -March 3, Jan starts moving her lips as if forming words but she can only produce small whispers.
DAY 23 -March 5, Jan types in a laptop: Hi and is without any tubes for the first time. Latter that day, she scribbled some words (Please, who) on the log book.
DAY 25 -March 7. Jan says "Hi", and "stop talking, Louise!". Jan is bale to go for Wheelchair rides.
DAY 28 -March 10, Jan is talking more: "I tried the orange juice -tastes awful!" then some garbled words...
DAY 35 -March 15, Jan walked for the first time with the help of a walker. Her speech continues to improve. Her swallowing is almost restored.
DAY 38 -March 18. Jan starts walking with only the help of a hand.
DAY 44 -March 24. Jan gets a weekend pass. Her speech is clearer. goes for a walk outdoors. She is very happy to be outdoors.
DAY 48 -March 28. She has a discussion with the Speech Pathologist...Some words are still missing but there us a dramatic improvement in the last 10 days.
-Fede
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