Wonderful news! As of today (I think -- it may have been yesterday), no more need to don mask, gloves and gown to visit Jan. Wonderful because it means whatever infection she had is now gone. It's great to be able to touch Jan's hands and face skin-to-skin again. She clearly did not like being touched by my gloved hands any more than I liked wearing the gloves.
On another note -- one that we find alarming at the moment -- Jan has been moved out of B5 ICU to a semi-private room in a normal patient care unit. This would be terrific news if it had come as the result of a neurological assessment that she no longer needed to be in ICU. But the decision was made, not by neurology, but by the ICU resident who 'needed the bed'. While I understand the principle of triage -- prioritize the expending of limited medical resources by need --, Fede and I are not at all sure it is safe for Jan to be in a semi-private room without a nurse always present. She still cannot swallow and has no gag reflex to protect her airway.
Jan's new nurses tried to reassure us that it is not unusual for patients in Jan's condition to be in their area. At the same time, they listened to our concerns (thank you!), made some inquiries, and told us how to contact the resident who made the decision earlier today. Part of our concern is that the hospital did not contact either Fede or me before moving Jan, in spite of our being told we would be informed first. We had no chance to express our concerns and have them addressed at the time. We will be following up with the resident, as well as with Jan's neurosurgeon.
Jan appeared very tired this evening, which of course is still to be expected. When she wasn't sleeping, she was, as Fede says below, paying careful attention to what was being said. By her responses, she fully understood what she was hearing.
She is even communicating a little with her hands. At one point, we asked if she wanted to look at some pictures. She nodded 'yes'. Then we got distracted by what we were saying, and a minute later she held up and shook the back of her hand at us in a gesture that was crystal clear to me: "Come on you guys! Where are the pictures you promised?" At another time, she held up her hand and made the universal "yak yak yak" gesture - we were talking too much!
I never thought I would be so delighted to be chastised by Jan!
Where is Jan? D5 Patient Care Unit, room 49.
How do I get there? Take the main elevators we've been using all along up to the fifth floor. Walk down the corridor past B5 ICU and keep walking as the corridor takes you out of B wing, into C wing, and then into D wing. The "Patient Care Unit" sign is large and easy to see.
In other news of Jan's progress, the physiotherapist had Jan standing (!) for a time today, while holding on to a table. Sometimes, my overwhelming desire for Jan to speak to me keeps me from noticing that she is indeed making great progress at a very respectable pace.
I'll end this overly long post with the word that I stared with: Wonderful!
-Steve
Tuesday, February 28, 2006
Monday, February 27, 2006
Jan is getting well
One step at a time Jan is getting better. This evening she was interested in my invitation to come home to her own bed instead of this uncomfortable hospital bed. She nodded and smiled, then rolled her eyes saying "dream on"...
She is very active, too active for the likes of the day nurse. She was wearing a restraining coat (untied) to keep her in bed. She seems to be planning already a get away. Whe trying to sleep, she turned and tossed blankets, arranged and re-arranged those infernal wires and tubes. The nurse told Louise that Jan took the IV off, so they switched it to the left arm, because she cannot use the right arm yet...
Upset, frustrated, sad, depressed, tired, overwhelmed and more is what she must be feeling. She appreciates our love and often reciprocates.
Bring your happiness and hopefulness. She sees that in your face and will lighten her days at the ICU.
Thanks on behalf of my wife for your unquestionable love,
-Fede
She is very active, too active for the likes of the day nurse. She was wearing a restraining coat (untied) to keep her in bed. She seems to be planning already a get away. Whe trying to sleep, she turned and tossed blankets, arranged and re-arranged those infernal wires and tubes. The nurse told Louise that Jan took the IV off, so they switched it to the left arm, because she cannot use the right arm yet...
Upset, frustrated, sad, depressed, tired, overwhelmed and more is what she must be feeling. She appreciates our love and often reciprocates.
Bring your happiness and hopefulness. She sees that in your face and will lighten her days at the ICU.
Thanks on behalf of my wife for your unquestionable love,
-Fede
A hopeful note on progress
Jan is improving, and this is more than the optimistic view of her husband. There have been sightings of smiles, patting on the shoulder, skillfully flipping pages of picture albums, reading greeting cards, clear indications to the nurse of being cold or hot, of wanting another blanket, of sitting on her bed, of stubbornly keep trying to take the tube off her nose, etc. When Jan looks into your eyes what you see is not a blank stare of someone who is not aware of her surroundings or of people, instead, what you see is a penetrating look that is trying to focus or recognize who on earth is this visitor. So, given so many witnesses who can corroborate this, I must declare that Jan is getting better all the time.
This evening, I asked her if she was confortable in this hospital bed, she answered with her head a clear NO!. I asked her if she wanted to come home and sleep in her own bed, she nodded in affirmation, smiled and then rolled her eyes, as if saying: dream on!
A physiological mark of improvement is that the swelling of the brain seems to have receded. Instead of the bulky left part of her head, she now has a noticeable indentation. This is exactly what the neurosurgeon had indicated as a simpton of improvement. Now what follows is that Jan needs to recover her swallowing reflex and slowly recover her beautiful voice.
It is tough to see her frustrated and sad because she cannot communicate with all. But it is indisputable that she is recovering one step at a time. I hope to be talking to Her soon whether it is in Spanish, French, Portuguese or any other language she may choose,
-Fede
This evening, I asked her if she was confortable in this hospital bed, she answered with her head a clear NO!. I asked her if she wanted to come home and sleep in her own bed, she nodded in affirmation, smiled and then rolled her eyes, as if saying: dream on!
A physiological mark of improvement is that the swelling of the brain seems to have receded. Instead of the bulky left part of her head, she now has a noticeable indentation. This is exactly what the neurosurgeon had indicated as a simpton of improvement. Now what follows is that Jan needs to recover her swallowing reflex and slowly recover her beautiful voice.
It is tough to see her frustrated and sad because she cannot communicate with all. But it is indisputable that she is recovering one step at a time. I hope to be talking to Her soon whether it is in Spanish, French, Portuguese or any other language she may choose,
-Fede
Visiting
A quick note to better navigate and plan your visits to Jan. To get a quiet visit and plenty of time, plan to visit during the weekdays (those who can). Mornings and early afternoons are best.
Understandably, Saturday and Sundays are really busy times. These are the only times most people have to visit loved ones at the hospital. In this crowd, some have gone home without seeing Jan or have felt pressured to leave too soon to make room for others to visit. My apologies, if you have been in this situation.
Keep in mind that anyone visiting Jan does it out of love for her. Don't give up visiting and or blogging. She will need your support more in the days to come.
-Fede
Understandably, Saturday and Sundays are really busy times. These are the only times most people have to visit loved ones at the hospital. In this crowd, some have gone home without seeing Jan or have felt pressured to leave too soon to make room for others to visit. My apologies, if you have been in this situation.
Keep in mind that anyone visiting Jan does it out of love for her. Don't give up visiting and or blogging. She will need your support more in the days to come.
-Fede
Right side, left side
Right side of the brain controls left side of the body.
By now I am sure most of you are familiar with the functioning of the brain, and the clinical description of a Sub-Arachnial Hemorrhage (SAH) in the Sylvian Fisure. The aneurysm occurred in the left side of Jan's brain. The left side of her body was mostly untouched, as soon as she began moving, she could handle with the left hand most tasks, and use her left foot to make her points very clear.
Well, Jan's right side is beginning to come back! She began moveng her right leg a couple of days ago and there is some movement in the right arm, but no fine movement in her right hand yet. She is also still looking in her brain for the gag reflex necessary to swallow. How much we can take for granted when we have these functions in our body. Because of not been able to swallow, she is fed by a tube, which she really dislikes. Several times she has taken the tube out of her nose and struggle with the nurse to keep it out. With no other options, her left hand was restrained (tied) to the side of the bed. Today, Sunday, the nurse told me Jan had "negotiated" with her not to take the tube if the nurse did not tape the tube to her cheek, instead, the tube was taped to her chin... When I saw Jan, she gave me a grin and a look as if to say "Oh, well, what do you expect..."
Several people came to see her and she was very responsive. She smiled and touched them. She responded to their questions with nods and smiles. At some point I showed her cards from her colleagues, she took them with her left hand. opened them and swept with her eyes from left to right each line...and smiled very pleased... was she reading? Did she understand? Only she could tell. I am caught between the doctor's parsimonious response that she doesn't know people and probably won't understand what is going on for the next two to threeweeks, and the wild hope that comes after seeing her do all these complex things. I decided to err on Jan's side, and believe that probaly she knows me when she smiles.
Today, her friends from the Sanctuary came and sang and prayed in the chapel. On Wedensday, Jan's friends from RUC will meet at 7PM to pray and sing. Please come and enjoy the mutual support of caring people.
Right now, in the ICU there is one nurse for 2 beds, qhen jan goes to the "floor" or the general area, there will be one nurse for every six beds. Today a fine lady offered the support of helping when Jan is moved to the general section to keep her company and make sure she is getting the care she needs. If you wish to plan to do something practical for Jan, please let us know and we will share with you the privilege of loving Jan by heling her in practical ways.
Keep bloging, and sending your love.
-Fede
By now I am sure most of you are familiar with the functioning of the brain, and the clinical description of a Sub-Arachnial Hemorrhage (SAH) in the Sylvian Fisure. The aneurysm occurred in the left side of Jan's brain. The left side of her body was mostly untouched, as soon as she began moving, she could handle with the left hand most tasks, and use her left foot to make her points very clear.
Well, Jan's right side is beginning to come back! She began moveng her right leg a couple of days ago and there is some movement in the right arm, but no fine movement in her right hand yet. She is also still looking in her brain for the gag reflex necessary to swallow. How much we can take for granted when we have these functions in our body. Because of not been able to swallow, she is fed by a tube, which she really dislikes. Several times she has taken the tube out of her nose and struggle with the nurse to keep it out. With no other options, her left hand was restrained (tied) to the side of the bed. Today, Sunday, the nurse told me Jan had "negotiated" with her not to take the tube if the nurse did not tape the tube to her cheek, instead, the tube was taped to her chin... When I saw Jan, she gave me a grin and a look as if to say "Oh, well, what do you expect..."
Several people came to see her and she was very responsive. She smiled and touched them. She responded to their questions with nods and smiles. At some point I showed her cards from her colleagues, she took them with her left hand. opened them and swept with her eyes from left to right each line...and smiled very pleased... was she reading? Did she understand? Only she could tell. I am caught between the doctor's parsimonious response that she doesn't know people and probably won't understand what is going on for the next two to threeweeks, and the wild hope that comes after seeing her do all these complex things. I decided to err on Jan's side, and believe that probaly she knows me when she smiles.
Today, her friends from the Sanctuary came and sang and prayed in the chapel. On Wedensday, Jan's friends from RUC will meet at 7PM to pray and sing. Please come and enjoy the mutual support of caring people.
Right now, in the ICU there is one nurse for 2 beds, qhen jan goes to the "floor" or the general area, there will be one nurse for every six beds. Today a fine lady offered the support of helping when Jan is moved to the general section to keep her company and make sure she is getting the care she needs. If you wish to plan to do something practical for Jan, please let us know and we will share with you the privilege of loving Jan by heling her in practical ways.
Keep bloging, and sending your love.
-Fede
Friday, February 24, 2006
Two weeks
I was visiting Jan this evening. It was 6:05PM. I was trying to make eye contact with Jan, when I realized that it was exactly 2 weeks ago when the aneurysm burst. In slow motion my mind played back again the scene two weeks ago that landed us where we are today:
5:15 We were getting ready to go to a Valentine's party in O-----.
5:50 A last minute touch up to the make up.
5:54 She collapses in pain. I call 911
6:01 The ambulance arives, Ask her a number so questions and convince her to walk down the stairs with them. Omar is arriving from work and meets her in the front lawn.
6:05 They put her on a strecher and she loses conciousness.
6:20 I meet her at the emergency entrace. She opens her eyes, I see fear or extreme pain. "Oh God..."
6:25 The ER staff run an ECG and find nothing.
6:45 Another doctor orders a CT scan
7:25 the CT Scan reveal the hemorrage and they start a frantic search for a neurologist and arrange her transfer to S--------. They give her some drugs. They put her in a respirator. I ask Omar to call Steve
9:25 She is prepared to be transferred with all the equipment
9:55 I go to the parking lot and find that I have no money or wallet to pay for parking! I call Dad and ask him to call everyone else.
10:30 I arrive at S-------.
11:05 The family starts to arrive.
11:30 One of the Neurosurgery residents comes to talk to us about what is happening and to ask for our consent.
1:00am Jan goes into the OR for a three-hour operation.
The rest is the history we have written here at S------- Hospital.
Sleepless nights, anger, frustration, tears, prayers, anguish, questions, impatience, tender love from friends and family, we have seen them all in these two weeks. We have felt hopeful and seen in a fraction of a second our hopes dashed by rational explanations of the risks and the seriousness of the situation.
We also have seen Jan in a deep sleep for days (in a coma) and then, we have witnessed how she opened her eyes, began moving parts of her body, began expressing feelings and questions with her eyes and hands. We have agonized for her lack of speech, we know this type of healing takes time, but we don't want to wait, we want to see her well now and listen to her voice again now! As time passes she is making progress, and in some way family and friends also are taking some steps towards patience and perspective.
All this in just two weeks!
To all of you who have been touched by Jan and have prayed for her recovery, I say: thank you. I hope you continue praying for Jan until she heals and returns home.
5:15 We were getting ready to go to a Valentine's party in O-----.
5:50 A last minute touch up to the make up.
5:54 She collapses in pain. I call 911
6:01 The ambulance arives, Ask her a number so questions and convince her to walk down the stairs with them. Omar is arriving from work and meets her in the front lawn.
6:05 They put her on a strecher and she loses conciousness.
6:20 I meet her at the emergency entrace. She opens her eyes, I see fear or extreme pain. "Oh God..."
6:25 The ER staff run an ECG and find nothing.
6:45 Another doctor orders a CT scan
7:25 the CT Scan reveal the hemorrage and they start a frantic search for a neurologist and arrange her transfer to S--------. They give her some drugs. They put her in a respirator. I ask Omar to call Steve
9:25 She is prepared to be transferred with all the equipment
9:55 I go to the parking lot and find that I have no money or wallet to pay for parking! I call Dad and ask him to call everyone else.
10:30 I arrive at S-------.
11:05 The family starts to arrive.
11:30 One of the Neurosurgery residents comes to talk to us about what is happening and to ask for our consent.
1:00am Jan goes into the OR for a three-hour operation.
The rest is the history we have written here at S------- Hospital.
Sleepless nights, anger, frustration, tears, prayers, anguish, questions, impatience, tender love from friends and family, we have seen them all in these two weeks. We have felt hopeful and seen in a fraction of a second our hopes dashed by rational explanations of the risks and the seriousness of the situation.
We also have seen Jan in a deep sleep for days (in a coma) and then, we have witnessed how she opened her eyes, began moving parts of her body, began expressing feelings and questions with her eyes and hands. We have agonized for her lack of speech, we know this type of healing takes time, but we don't want to wait, we want to see her well now and listen to her voice again now! As time passes she is making progress, and in some way family and friends also are taking some steps towards patience and perspective.
All this in just two weeks!
To all of you who have been touched by Jan and have prayed for her recovery, I say: thank you. I hope you continue praying for Jan until she heals and returns home.
Information on SAH
When Jan's aneurysm ruptured, it resulted in bleeding known medically as a sub-arachnoid hemorrhage, or SAH.
The following website contains excellent information on what SAH is, how it occurs, how it is treated, and -- most importantly for us now -- what to expect in terms of recovery.
The SAH Home Page, by Salford Royal Hospitals in Great Britain:
http://www.srht.nhs.uk/sah/default.htm
In particular, the site's page on Personal Experiences is useful in understanding the range of experiences and challenges that might lie ahead for Jan. The link is in the navigation area on the left side of the Home Page. By reading the individual experience pages, you will see that individual outcomes vary greatly from person to person.
-Steve
The following website contains excellent information on what SAH is, how it occurs, how it is treated, and -- most importantly for us now -- what to expect in terms of recovery.
The SAH Home Page, by Salford Royal Hospitals in Great Britain:
http://www.srht.nhs.uk/sah/default.htm
In particular, the site's page on Personal Experiences is useful in understanding the range of experiences and challenges that might lie ahead for Jan. The link is in the navigation area on the left side of the Home Page. By reading the individual experience pages, you will see that individual outcomes vary greatly from person to person.
-Steve
Thursday, February 23, 2006
support
Dear all,
Jan is undergoing a massive re-adaptation to reality after a very serious illness. Few people have a brain operation and survive to tell it. I continue to pray that Jan is one of them. Jan's brain and body are struggling with all their strength to get well. This is an incredible battle that includes the effort of every part of her body, her mind and her soul. Sue noted accurately that physically Jan is exhausted after an hour of physiotherapy. The effort is equivalent to a double marathon for Jan. But the effort includes emotions, and this means that Jan is experiencing emotional exhaustion as well as Steve pointed out. Keep this in mind.
The doctor said that this is an expected stage in her recovery. As a matter of fact, the surgeon noted today that Jan is making progress. She still has to be able to swallow, get rid of an infection, and start regaining some of her main functions. Jan will be struggling, sad, angry, depressed, tired, confused, as part of hear healing which could take anywhere between 3 weeks and 4 months or more. There is no calendar because everything depends on Jan's brain ability to heal. Easier said than done, particularly for the family and friends who have to sit on the sidelines unable to help Jan even in a small way.
So, it seems that we all need some form of healing or participation in this process. I invite you to consider creative ways to pull our collective strength together and help each other so we can help Jan. Let us know. Blog your ideas. For example, someone proposed to meet in a group at the chapel of the hospital to pray for Jan and to share feelings or songs. Think and let us know.
We need you in the long haul, in particular in those times when Jan is going though dark valleys.
My gratitude and love to all of you for loving my wife.
-Fede
Jan is undergoing a massive re-adaptation to reality after a very serious illness. Few people have a brain operation and survive to tell it. I continue to pray that Jan is one of them. Jan's brain and body are struggling with all their strength to get well. This is an incredible battle that includes the effort of every part of her body, her mind and her soul. Sue noted accurately that physically Jan is exhausted after an hour of physiotherapy. The effort is equivalent to a double marathon for Jan. But the effort includes emotions, and this means that Jan is experiencing emotional exhaustion as well as Steve pointed out. Keep this in mind.
The doctor said that this is an expected stage in her recovery. As a matter of fact, the surgeon noted today that Jan is making progress. She still has to be able to swallow, get rid of an infection, and start regaining some of her main functions. Jan will be struggling, sad, angry, depressed, tired, confused, as part of hear healing which could take anywhere between 3 weeks and 4 months or more. There is no calendar because everything depends on Jan's brain ability to heal. Easier said than done, particularly for the family and friends who have to sit on the sidelines unable to help Jan even in a small way.
So, it seems that we all need some form of healing or participation in this process. I invite you to consider creative ways to pull our collective strength together and help each other so we can help Jan. Let us know. Blog your ideas. For example, someone proposed to meet in a group at the chapel of the hospital to pray for Jan and to share feelings or songs. Think and let us know.
We need you in the long haul, in particular in those times when Jan is going though dark valleys.
My gratitude and love to all of you for loving my wife.
-Fede
Visits
Echoing what has been said by Sue, at this time please,
-keep your visits short
-postpone your plans to visit if you have a cold or other contagious illness
-be prepared to not be able to see Jan, in emergencies the nurses have to close the unit to visitors for hours at a time.
-wear your mask, gloves and gown
-do not bring flowers for Jan (not yet) or toys, there is limited space. If you really want to bring something, it is best to bring a card.
-be genuine, we don't know if she understands.
-don't talk over her or around her, include her in your conversations
-remember that if she does not have her glasses, she won't see your face at 3 feet, but she may recognize your voice.
-the doctor encourages visits, but the nurses sometimes are of a different opinion, be ready to be caught in between,
-visit hours are from 9am to 9pm with some breaks.
-Try to visit with the family, they need the support too.
Thank you, thank you, thank you for loving Jan so much.
-Fede
-keep your visits short
-postpone your plans to visit if you have a cold or other contagious illness
-be prepared to not be able to see Jan, in emergencies the nurses have to close the unit to visitors for hours at a time.
-wear your mask, gloves and gown
-do not bring flowers for Jan (not yet) or toys, there is limited space. If you really want to bring something, it is best to bring a card.
-be genuine, we don't know if she understands.
-don't talk over her or around her, include her in your conversations
-remember that if she does not have her glasses, she won't see your face at 3 feet, but she may recognize your voice.
-the doctor encourages visits, but the nurses sometimes are of a different opinion, be ready to be caught in between,
-visit hours are from 9am to 9pm with some breaks.
-Try to visit with the family, they need the support too.
Thank you, thank you, thank you for loving Jan so much.
-Fede
A comment on Sue's entry below
The entry Sue (my wife and Jan's sister-in-law) made below really reflects the difficulty some of us are having with how Jan is and appears right now. Sue's sad tone in the entry is an expression of Sue's reaction to Jan's current appearance.
However, it is important for you, Jan's faithful, to know that Jan's neurosurgeon is happy with her progress to date. He tells us that her current apparent depression is completely understandable and expected. Her own situation must be frustrating and disheartening to her beyond comprehension. Who among us would not be feeling depressed in her place? As well, the brain is the seat of our emotions, and Jan's brain -- even the parts not directly damaged by the bleed -- is still not functioning normally yet. In other words, this depression is, at least in part, a symptom of the current state of her brain.
-Steve
However, it is important for you, Jan's faithful, to know that Jan's neurosurgeon is happy with her progress to date. He tells us that her current apparent depression is completely understandable and expected. Her own situation must be frustrating and disheartening to her beyond comprehension. Who among us would not be feeling depressed in her place? As well, the brain is the seat of our emotions, and Jan's brain -- even the parts not directly damaged by the bleed -- is still not functioning normally yet. In other words, this depression is, at least in part, a symptom of the current state of her brain.
-Steve
Jan's Progress from Sue
Jan's progress is a very slow process. Fede has seen her shoo people away, but I have not observed this yet. I have seen her flutter her hand in a way that lets you know she does not want to hold your hand, and tiny mostly one-sided smiles; and Steve saw a tiny smile with both sides of her mouth. She has shrugged her shoulders and given a wave of the hand, as if to say "I don't know" or "I don't care", but these are usually brief moments when Jan seems to be lucid.
She seems to be quite depressed right now and is mostly unresponsive.
The family is grieving for the Jan that we all knew, full of energy and effervescence. Right now, that bubbly person that we have all grown to know just gives us a blank stare most of the time.
Thank you again for all of your get well postings, prayers, comfort food, short visits and calls. We are becoming exhausted so our prayer is that we do not become ill.
She still has an infection and we are now asked to wear a mask before seeing Jan. This is for her protection and ours.
I have shed many tears for her but never in her presence. In her presence, I think it is important to remain upbeat and cheerful even if you don't get a response from Jan.
My heart aches for you Jannie and I wish that I could understand what you want or need but right now I feel dumb.
I ask that you continue to pray for Jan's recovery. Every person's recovery path is different. We really don't know what hers is at the moment. The next 10 days will tell the tale.
Those of you that are visiting Jan, please be aware that she will be particularly tired following her sessions with the physiotherapist. Please continue to keep your visitation times short.
God bless, In Him,
Sue
She seems to be quite depressed right now and is mostly unresponsive.
The family is grieving for the Jan that we all knew, full of energy and effervescence. Right now, that bubbly person that we have all grown to know just gives us a blank stare most of the time.
Thank you again for all of your get well postings, prayers, comfort food, short visits and calls. We are becoming exhausted so our prayer is that we do not become ill.
She still has an infection and we are now asked to wear a mask before seeing Jan. This is for her protection and ours.
I have shed many tears for her but never in her presence. In her presence, I think it is important to remain upbeat and cheerful even if you don't get a response from Jan.
My heart aches for you Jannie and I wish that I could understand what you want or need but right now I feel dumb.
I ask that you continue to pray for Jan's recovery. Every person's recovery path is different. We really don't know what hers is at the moment. The next 10 days will tell the tale.
Those of you that are visiting Jan, please be aware that she will be particularly tired following her sessions with the physiotherapist. Please continue to keep your visitation times short.
God bless, In Him,
Sue
Wednesday, February 22, 2006
Jan had an angyogram
Today could have been just another day in Jan's recovery. We could have celerated one less day for Jan's stay at the hospital. But today the neurologists decided to do an angyogram(?) on Jan. The procedure is frightening but in the opinion of the doctors is low risk. She had some dye injected into her blood stream so they could get a picture of the blood vesels in her brain. The procedure was successful, they had a good view of her brain, what was alarming from what they saw is that there is vaso-constriction (some narroing of the blood vesels) that could cause another series of strokes.
Jan is still in the woods, in our enthusiasm we tend to forget that the doctors did mentioned at the beginning that the difficult stage would be the first 15 to 20 days.
She came back a exhausted and somehow depressed and irritable. When I asked her if she wanted to switch places with me, she just ignored me.
She is using her glasses, which she puts on by herself. I showed her some pictures, for a while, she looked at them carefully. The pictures are familiar faces and familiar places. She smiled at some of them. She was flipping the pages by herself. I tried speaking with her using ASL. She saw my signs but refused to engage.
It is very frustating not to be able to understand what she needs. I imagine it is like being in solitary confinment, both sides unable to communicate with the other.
She is also listening to music. She has a CD player and earphones which she puts on by herself. She is becoming very independent! However, in this situation all this signs of independence and progress can mean nothing when a complication arises.
We need a double dose of support. Thanks you for responding to our petitions so generously.
We'll keep you posted, hopefully with more cheerful news about this extraodinary journey Jan is taking. Remember that she is still very ill.
-Fede
Jan is still in the woods, in our enthusiasm we tend to forget that the doctors did mentioned at the beginning that the difficult stage would be the first 15 to 20 days.
She came back a exhausted and somehow depressed and irritable. When I asked her if she wanted to switch places with me, she just ignored me.
She is using her glasses, which she puts on by herself. I showed her some pictures, for a while, she looked at them carefully. The pictures are familiar faces and familiar places. She smiled at some of them. She was flipping the pages by herself. I tried speaking with her using ASL. She saw my signs but refused to engage.
It is very frustating not to be able to understand what she needs. I imagine it is like being in solitary confinment, both sides unable to communicate with the other.
She is also listening to music. She has a CD player and earphones which she puts on by herself. She is becoming very independent! However, in this situation all this signs of independence and progress can mean nothing when a complication arises.
We need a double dose of support. Thanks you for responding to our petitions so generously.
We'll keep you posted, hopefully with more cheerful news about this extraodinary journey Jan is taking. Remember that she is still very ill.
-Fede
Life in Intensive Care
Awake
Jan is more awake and aware of her condition. The physiotherapist asked her to sit at the side of the bed. She did that precariously for a minute. Jan is becoming more expressive with hands and face. She can clearly shoo us away when she has had enough or express irony and frustration at the reality of her condition.
In spite of these wonderful improvements, she is still very ill. She faces important challenges in the days ahead, for example:
-she can't swallow by herself, so she is not able to eat. This means that she is still fed through a tube.
-she still has an infection, so they keep her with antibiotics
-her coughing is improving, but still weak.
-she has not pronounced a word yet... but she moves her lips sometimes as if she wanted to form words. Steve reports hearing a guttural sound yesterday when talking to her.
-One of the residents told me yesterday that in the next 10 days, or so she will recuperate 80% of the functions that were not affected by the aneurysm, the other 20% will come back through various therapies in the months ahead.
We have big questions on this item and a lot of anticipation. Everyone wants to know what can she do and what she will not be able to do. Some of you, like my Dad or some people from our community at RUC, do not see the world only in medical or strictly physiological terms, they have a strong faith (conviction of the things not yet seen, certainty of what is expected) an prefer to wait in The Lord that Jan will be restored totally and will get back all of her abilities. I am glad to be surrounded by such people, and I am sure Jan is glad as well.
However, the waiting time takes it's toll on us. I know that, if you take the time to read this blog, you are in the long haul with us. We are so fortunate to be supported this way. I am amazed at how many people Jan knows and how much she is loved. Please help Jan and us by doing the following:
-reminding us that life has to be lived moment by moment, day by day with an attitude of gratefulness.
-reminding us to be thankful for each day Jan conquers.
-reminding us to be supportive of Jan and encourage her to choose life.
-reminding us about restoration and healing.
-reminding us who we are, and for those who can see it, how this is part of a larger plan that is "making all things new".
- reminding us that it is Jan who is ill, and that she is the one who needs comfort and support now.
-reminding us not to focus too much on ourselves or feel sorry for ourselves, but intead to see Jan and see The Lord working hand in hand.
-reminding us that we have a wonderful community that will be there tomorrow the day after, the week after, the month after...
A new chapter begins for Jan at the ICU. Come, join us in your thoughs, prayers, blogs, emails and cards to let Jan know we love her and are waiting to see her back among us.
Remember we print your notes and add them to a binder so Jan can read them.
Until the next,
-Fede
Jan is more awake and aware of her condition. The physiotherapist asked her to sit at the side of the bed. She did that precariously for a minute. Jan is becoming more expressive with hands and face. She can clearly shoo us away when she has had enough or express irony and frustration at the reality of her condition.
In spite of these wonderful improvements, she is still very ill. She faces important challenges in the days ahead, for example:
-she can't swallow by herself, so she is not able to eat. This means that she is still fed through a tube.
-she still has an infection, so they keep her with antibiotics
-her coughing is improving, but still weak.
-she has not pronounced a word yet... but she moves her lips sometimes as if she wanted to form words. Steve reports hearing a guttural sound yesterday when talking to her.
-One of the residents told me yesterday that in the next 10 days, or so she will recuperate 80% of the functions that were not affected by the aneurysm, the other 20% will come back through various therapies in the months ahead.
We have big questions on this item and a lot of anticipation. Everyone wants to know what can she do and what she will not be able to do. Some of you, like my Dad or some people from our community at RUC, do not see the world only in medical or strictly physiological terms, they have a strong faith (conviction of the things not yet seen, certainty of what is expected) an prefer to wait in The Lord that Jan will be restored totally and will get back all of her abilities. I am glad to be surrounded by such people, and I am sure Jan is glad as well.
However, the waiting time takes it's toll on us. I know that, if you take the time to read this blog, you are in the long haul with us. We are so fortunate to be supported this way. I am amazed at how many people Jan knows and how much she is loved. Please help Jan and us by doing the following:
-reminding us that life has to be lived moment by moment, day by day with an attitude of gratefulness.
-reminding us to be thankful for each day Jan conquers.
-reminding us to be supportive of Jan and encourage her to choose life.
-reminding us about restoration and healing.
-reminding us who we are, and for those who can see it, how this is part of a larger plan that is "making all things new".
- reminding us that it is Jan who is ill, and that she is the one who needs comfort and support now.
-reminding us not to focus too much on ourselves or feel sorry for ourselves, but intead to see Jan and see The Lord working hand in hand.
-reminding us that we have a wonderful community that will be there tomorrow the day after, the week after, the month after...
A new chapter begins for Jan at the ICU. Come, join us in your thoughs, prayers, blogs, emails and cards to let Jan know we love her and are waiting to see her back among us.
Remember we print your notes and add them to a binder so Jan can read them.
Until the next,
-Fede
Tuesday, February 21, 2006
Midday Update
Jan spent an uneventful first night in her new home in B5 ICU.
She continues to run a fever, and the team has been stymied so far in discovering where the infection is. They are continuing to investigate. We are continuing to pray.
We've been told that Jan will be checked today to see if she is able to swallow properly yet. If she is (and she may not be), they will try giving her something by mouth.
More later.
-Steve
She continues to run a fever, and the team has been stymied so far in discovering where the infection is. They are continuing to investigate. We are continuing to pray.
We've been told that Jan will be checked today to see if she is able to swallow properly yet. If she is (and she may not be), they will try giving her something by mouth.
More later.
-Steve
Monday, February 20, 2006
From ICU to Intensive Care
Jan has a new address!!! she moved this evening to the intensive care unit where she shares a large area with 10 or 12 other patients. The pace is a lot slower that in the critical care area. There is no sense of urgency and the nurse was very kind.
She responds clearly to what she wants and what she does not want. She didn't seem bothered about the change. Her vitals were normal, her temperature just a bit high. She seemed somewhat tired, she would focus for about 5 minutes and then dose off for a few minutes. She needs a lot of rest. The nurse reminded us of the importance of giving her a chance to recuperate.
My Dad and I went in to talk to her. She was very awake and kept looking at us very carefully, like studying our faces. When Dad talked to her she smiled and nodded. Made motions with her lips as if she wanted to form words but no sound came out. Dad prayed close to her ear, her eyes clearly got moist with tears. Did she know who my dad was? Was she praying along? All facts indicate that she was understanding what was happening.
Her cheeks had a nice peach colour, her hand was untied (the nurse asked her not to take her tubes out or else, she would tie her hand). She ran slowly her finger along the stiches and then moved her mouth to one side of her face, like saying: oh well...it could be worse! I told her she looked beautiful, she smiled.
Tonight, I saw Jan the warrior again. I remember her words: I was born to fly! And fly she will! She has a note on her desk at home with a quote from Isaiah 40:30 "they will raise up as an eagle in teh sky.."
Thank you for all your prayers and efforts of love. They are yielding a wonderful fruit.
She responds clearly to what she wants and what she does not want. She didn't seem bothered about the change. Her vitals were normal, her temperature just a bit high. She seemed somewhat tired, she would focus for about 5 minutes and then dose off for a few minutes. She needs a lot of rest. The nurse reminded us of the importance of giving her a chance to recuperate.
My Dad and I went in to talk to her. She was very awake and kept looking at us very carefully, like studying our faces. When Dad talked to her she smiled and nodded. Made motions with her lips as if she wanted to form words but no sound came out. Dad prayed close to her ear, her eyes clearly got moist with tears. Did she know who my dad was? Was she praying along? All facts indicate that she was understanding what was happening.
Her cheeks had a nice peach colour, her hand was untied (the nurse asked her not to take her tubes out or else, she would tie her hand). She ran slowly her finger along the stiches and then moved her mouth to one side of her face, like saying: oh well...it could be worse! I told her she looked beautiful, she smiled.
Tonight, I saw Jan the warrior again. I remember her words: I was born to fly! And fly she will! She has a note on her desk at home with a quote from Isaiah 40:30 "they will raise up as an eagle in teh sky.."
Thank you for all your prayers and efforts of love. They are yielding a wonderful fruit.
Change of Address. . . .
Well, not really a change of address, just of apartment number.
This afternoon, they moved Jan from Critical Care to a unit one step down, called B5 ICU. This is a sign that the medical team thinks Jan is a little more stable than she has been, so we take it as hopeful.
With this move, we have 'taken down our tent' and packed up Camp Jan in the corner of the CrCU Visitors' Lounge that we have occupied since all this started.
Jan still has her own nurse in this new unit and will be monitored very closely. Her nurse this evening told us they may try to get Jan out of bed a little tomorrow. Frankly, I am surprised at this -- I would not have expected it so soon. Please pray for strength and control on Jan's right side, where there has still been very little movement.
Jan's reactions today, like yesterday's, have been somewhat hit or miss. Sometimes she seems to respond directly to what is said, by a tiny smile or a hand squeeze, and other times she seems not to understand or respond at all. We have been told (again) that this is to be expected.
Please also pray for the recovery of Jan's ability to speak. She has not said a word yet, and this may be a sign that she will have to relearn how to make speech. We don't know yet.
This is day post-10 for Jan. It has been ten days since the aneurysm burst and she had the initial surgery. We are in the period of highest risk for spasms in the blood vessels of her brain -- something the medical team will be watching for very closely. And another specific thing to pray about.
Visits in the new unit are more restricted than in Critical Care. Visiting hours are 9:00 am to 9:00 pm, and are generally restricted to a total of only 10 minutes each hour. Right now, visits are still limited to family members.
For those of you who choose to come to the hospital to be with us and support us there, the Visitors' Lounge for B5 ICU is, naturally enough, on the fifth floor of B-wing. Take the same elevators you've been taking, but to floor 5 instead of 2. Then follow the corridor until you see the tiny ICU Visitors' Lounge on your left.
We will no longer have someone from the family there all the time -- in fact, in the last couple of days we have had gaps and have missed a few of you who made the trip in. Thank you for coming! We were truly sorry to have missed you. And thanks as well to those who brought or sent food and drink to Camp Jan. We put your gifts to good use!
Thank you all so much for your wonderful and faithful support of Jan and of us in her family.
-Steve
This afternoon, they moved Jan from Critical Care to a unit one step down, called B5 ICU. This is a sign that the medical team thinks Jan is a little more stable than she has been, so we take it as hopeful.
With this move, we have 'taken down our tent' and packed up Camp Jan in the corner of the CrCU Visitors' Lounge that we have occupied since all this started.
Jan still has her own nurse in this new unit and will be monitored very closely. Her nurse this evening told us they may try to get Jan out of bed a little tomorrow. Frankly, I am surprised at this -- I would not have expected it so soon. Please pray for strength and control on Jan's right side, where there has still been very little movement.
Jan's reactions today, like yesterday's, have been somewhat hit or miss. Sometimes she seems to respond directly to what is said, by a tiny smile or a hand squeeze, and other times she seems not to understand or respond at all. We have been told (again) that this is to be expected.
Please also pray for the recovery of Jan's ability to speak. She has not said a word yet, and this may be a sign that she will have to relearn how to make speech. We don't know yet.
This is day post-10 for Jan. It has been ten days since the aneurysm burst and she had the initial surgery. We are in the period of highest risk for spasms in the blood vessels of her brain -- something the medical team will be watching for very closely. And another specific thing to pray about.
Visits in the new unit are more restricted than in Critical Care. Visiting hours are 9:00 am to 9:00 pm, and are generally restricted to a total of only 10 minutes each hour. Right now, visits are still limited to family members.
For those of you who choose to come to the hospital to be with us and support us there, the Visitors' Lounge for B5 ICU is, naturally enough, on the fifth floor of B-wing. Take the same elevators you've been taking, but to floor 5 instead of 2. Then follow the corridor until you see the tiny ICU Visitors' Lounge on your left.
We will no longer have someone from the family there all the time -- in fact, in the last couple of days we have had gaps and have missed a few of you who made the trip in. Thank you for coming! We were truly sorry to have missed you. And thanks as well to those who brought or sent food and drink to Camp Jan. We put your gifts to good use!
Thank you all so much for your wonderful and faithful support of Jan and of us in her family.
-Steve
Sunday, February 19, 2006
Three pieces of good news!
Please don't let the signs of progress in Jan's though recovery make you stop your support for her, whichever form it takes: prayers, songs, thougts of love, moral support, practical support, etc. I hope soon she will be happy to hear from all her friends and coleagues, so keep sending emails or blogging. The real need for your support will come later. Right now join Steve's invitation to celebrate even these small signs of recovery in Jan.
All of you are a true inspiration to us. As a family we feel supported and benefit in the rebound from the love you pour for Jan.
Many thanks from the bottom of my heart,
Fede
All of you are a true inspiration to us. As a family we feel supported and benefit in the rebound from the love you pour for Jan.
Many thanks from the bottom of my heart,
Fede
Power of many
Jan Get Well!
Could you pass the prayer request to your communties of faith? The power of many voices is a thought that keeps coming to my mind.
Fede
Could you pass the prayer request to your communties of faith? The power of many voices is a thought that keeps coming to my mind.
Fede
Three pieces of good news!
Jan is now sprouting two tubes fewer than she was this morning!
(1) The pressure from swelling in her brain has fallen low enough that they removed the tube that was monitoring it earlier today. Hooray!
(2) And, more importantly, Jan had her breathing tube taken out this afternoon! (For you medical types, or medical-TV-show-watching types, she was extubated.) How great to see that much more of her face, and to know she no longer has the irritation and pneumonia-risk of the tube going into her lungs.
(3) This afternoon, Jan moved her right arm from her side to her tummy! It's the first significant right-side movement, beyond a little toe-wiggling, that I'm aware of.
Let me interrupt your cheering and prayers of thanks with a word of caution: the doctors have said it is quite common in situations like Jan's that the breathing tube might have to go back in at some point. If that happens, we will be a little disappointed, but not disheartened.
Jan has 'stuff' accumulated in her lungs, and the nurses are encouraging her to try hard to cough on her own, so far without much success. I can only imagine (ok, I can't imagine) how sore her mouth and throat must feel right now.
The nurses have also been encouraging Jan to try to speak -- even to say her own name --, but so far she has not.
We still have to be very conscious of the delicacy of Jan's condition. The medical staff 'chastised' us a little for having too many visitors in to see Jan yesterday, in spite of what seems to us to be a very small number of visitors. She got really tired, and her progress seemed to take a small step backward.
Specific things I ask you to pray for now:
(1) The pressure from swelling in her brain has fallen low enough that they removed the tube that was monitoring it earlier today. Hooray!
(2) And, more importantly, Jan had her breathing tube taken out this afternoon! (For you medical types, or medical-TV-show-watching types, she was extubated.) How great to see that much more of her face, and to know she no longer has the irritation and pneumonia-risk of the tube going into her lungs.
(3) This afternoon, Jan moved her right arm from her side to her tummy! It's the first significant right-side movement, beyond a little toe-wiggling, that I'm aware of.
Let me interrupt your cheering and prayers of thanks with a word of caution: the doctors have said it is quite common in situations like Jan's that the breathing tube might have to go back in at some point. If that happens, we will be a little disappointed, but not disheartened.
Jan has 'stuff' accumulated in her lungs, and the nurses are encouraging her to try hard to cough on her own, so far without much success. I can only imagine (ok, I can't imagine) how sore her mouth and throat must feel right now.
The nurses have also been encouraging Jan to try to speak -- even to say her own name --, but so far she has not.
We still have to be very conscious of the delicacy of Jan's condition. The medical staff 'chastised' us a little for having too many visitors in to see Jan yesterday, in spite of what seems to us to be a very small number of visitors. She got really tired, and her progress seemed to take a small step backward.
Specific things I ask you to pray for now:
- That Jan comprehends as much as possible what is going on around her and what we and the medical staff are doing to her. We are unsure how much she really grasps the situation and, without understanding, will necessarily be very frightened, confused and frustrated by it all.
- That the family receives the strength, health, rest and peace we need, as fatigue starts to take its toll on us. We've been running a sprint, and now need to change pace to something suitable for a marathon.
- That we get consistent direction from the nursing staff. It seems there are many points of view among the nurses and doctors on what things are good or bad for Jan right now. The family has found this aspect frustrating, as we never know from one nursing shift to the next what we are expected/allowed/encouraged/ discouraged/forbidden to do. It is our only complaint about the otherwise wonderful treatment Jan has received at this hospital.
Thank you all for your continued prayers and support for Jan. All your emails to jan_get_well@yahoo.ca (jan_get_well) are wonderful. I have been printing them all, and keeping them in a binder at the hospital. God willing, she will soon be strong enough for us to start reading them all to her. Even though I have not responded individually to your emails, please know that they are being received and are worth their weight in gold to us, and will eventually be so to Jan.
-Steve
Saturday, February 18, 2006
Saturday morning (Feb. 18)
How wonderful to see Jan looking out at me, after a whole week! Her right eye is opening at bit now in addition to her left. She is doing her best to smile from time to time, although it is difficult with all the tubes.
This morning, she was a little subdued compared to yesterday, but no one is surprised by this. There is still a long way to go, and there are still serious risks, but we are so grateful for the progress to date.
We are entering a period of decision making for the medical team: when to take the breathing tube out, when to move Jan from CrCU to the Neurology ICU, whether and when to give Jan sedation so she rests more, etc.
Please pray that God will continue to heal Jan's brain and protect her from the risks that remain. Please pray that God will guide the medical team to make the right decisions.
-Steve
This morning, she was a little subdued compared to yesterday, but no one is surprised by this. There is still a long way to go, and there are still serious risks, but we are so grateful for the progress to date.
We are entering a period of decision making for the medical team: when to take the breathing tube out, when to move Jan from CrCU to the Neurology ICU, whether and when to give Jan sedation so she rests more, etc.
Please pray that God will continue to heal Jan's brain and protect her from the risks that remain. Please pray that God will guide the medical team to make the right decisions.
-Steve
From Jan's sister-law Sue
My wife, Jan's sister-in-law, asked my to post the following:
This is Sue. Most of our immediate family have now by God's grace been able to see Jan open at least one eye, and even smile!
We are grateful for all of you that have brought food to the CrCU visitors' lounge at the hospital. It helps us to eat when we would rather not leave, just in case something should happen.
Thank you to those that are praying for Jan's recovery, and to those who have chosen other ways to give your support to Jan.
We are blessed with the miracles that we have seen so far.
Thank you so much for your emails and blog entries that have been so moving. We have been touched by your responses and thank you for your continued support.
Much love, in Him,
Sue
This is Sue. Most of our immediate family have now by God's grace been able to see Jan open at least one eye, and even smile!
We are grateful for all of you that have brought food to the CrCU visitors' lounge at the hospital. It helps us to eat when we would rather not leave, just in case something should happen.
Thank you to those that are praying for Jan's recovery, and to those who have chosen other ways to give your support to Jan.
We are blessed with the miracles that we have seen so far.
Thank you so much for your emails and blog entries that have been so moving. We have been touched by your responses and thank you for your continued support.
Much love, in Him,
Sue
Friday, February 17, 2006
Louise saw a smile
Friday 17. More good news!!
Speaking with Louise this morning, she reported that at the request of the nurse, Jan opened her eyes twice and moved her thumb. Louise saw something like a smile....
She needs all the support she can get to get well. These are the first steps of what we hope will be a road to recovery.
Thank you family and friends for your love, caring and prayers for Jan and all the family. Don't give up, she is not giving up..
Speaking with Louise this morning, she reported that at the request of the nurse, Jan opened her eyes twice and moved her thumb. Louise saw something like a smile....
She needs all the support she can get to get well. These are the first steps of what we hope will be a road to recovery.
Thank you family and friends for your love, caring and prayers for Jan and all the family. Don't give up, she is not giving up..
Hope in 2 seconds flat
My only true love: Today you filled my day with hope in two seconds flat. I asked you to open your eyes for me and you did. I felt seen like no other time in my life. Then, I asked you to hold my hand and you did. After five days of agony this was a refreshing rain on my soul.
You can't imagine the light you brought to so many of us. You see, your eyes have been closed to our world. You have not shared with us our gray days and cold nights. You have been travelling in those unknown places of your mind unavailable to us. Is it luminescent? Is there music? What have you seen? Who did you talked to? Where was your mind these past six days? You have been in conversation with Ma', with beings of light and love, and surely with God. You have walked in a different reality unbeknowst to us all. You are close and far away. I see your body living on that bed, I see all this machinery ready to help, but you hadn't until today opened your eyes.
Day after day, hour after hour, I kept repeating to myself your last words: Fede, my love, Oh my God..., and drew from there the confidence that you were well protected and in good hands. The days are long and we are just yearning dust weaved on the fabric of time. Your mind left, your body stayed. We stayed in this reality wondering where you had gone, sad for the silence imposed on your lips, heavy for the absence of the light in your eyes. We were left wanting to see ourselves reflected in your eyes, blanketed by your smiles, embraced with your words. But for six days all we got was silence and no light, until today...
Thank you, thank you for touching ever so briefly my world again. I know the doctors are intent on not building false hopes, but what I saw and experienced was no mirage: we were communicating! We had a silent conversation for a few seconds. You were right! communication is the channel of love, of life. A life and a love not expressed do not exist. How did I missed the point? You were telling me this for so many weeks and here I am. Looking at you in this hospital bed, hurting together with you, learning a lesson on life and death, remembering your very own words: Let's talk! And now I would give anything in the world and beyond just to keep talking to you!
You know, the hardest thing in this process is the wait, living, breathing, walking in an impasse. A crisis with a resolution extended over what it feels like an eternity. A couple of days ago the doctors asked us to be aware that this is a long process. That you are walking all this time at the edge of the abyss and that we may be following you too closely and building meanings and hopes that are not real. They said you could skip and fall into the unknown at any moment and I felt depressed, with the wind knocked out of me, I went with a heavy load in my heart, as if they would have left a sword hanging by a thread over my head. Where do we draw the line between fantasy and hope? How can I wait and for what if they want me not to build hope? Today, I know you saw me and this filled me with hope. I choose the light of hope to be able to walk through the roughness of these days.
Ah! life is so delicate, fragile, like the flame of a candle in a strong wind. you are walking so close to the edges of life and I watch you powerless, devoid of any answers, forced to wait, wondering where you've been. My dear friends touch me and support me with their hope, faith and love, but I kept feeling lonely, wanting to reach you wherever you are.
And then, today, you opened your eyes and gave me that beautiful look. What did you tell me in that second? It was a long discouse on the essential things of life. I told you I love you so deep that I don't know how to reach the bottom of its source. In your eyes I read a million words mixed with the calla-lillies of your wedding bouquet. That was all I needed to live to be able to go on with my day.
I love you Janita. I miss hearing your words and being touched by your intense gaze. Get well so we can continue this conversation about life, about the snow and the children in your classes, about the families and our dreams, or maybe, just about how bad my cooking tastes.
FC
You can't imagine the light you brought to so many of us. You see, your eyes have been closed to our world. You have not shared with us our gray days and cold nights. You have been travelling in those unknown places of your mind unavailable to us. Is it luminescent? Is there music? What have you seen? Who did you talked to? Where was your mind these past six days? You have been in conversation with Ma', with beings of light and love, and surely with God. You have walked in a different reality unbeknowst to us all. You are close and far away. I see your body living on that bed, I see all this machinery ready to help, but you hadn't until today opened your eyes.
Day after day, hour after hour, I kept repeating to myself your last words: Fede, my love, Oh my God..., and drew from there the confidence that you were well protected and in good hands. The days are long and we are just yearning dust weaved on the fabric of time. Your mind left, your body stayed. We stayed in this reality wondering where you had gone, sad for the silence imposed on your lips, heavy for the absence of the light in your eyes. We were left wanting to see ourselves reflected in your eyes, blanketed by your smiles, embraced with your words. But for six days all we got was silence and no light, until today...
Thank you, thank you for touching ever so briefly my world again. I know the doctors are intent on not building false hopes, but what I saw and experienced was no mirage: we were communicating! We had a silent conversation for a few seconds. You were right! communication is the channel of love, of life. A life and a love not expressed do not exist. How did I missed the point? You were telling me this for so many weeks and here I am. Looking at you in this hospital bed, hurting together with you, learning a lesson on life and death, remembering your very own words: Let's talk! And now I would give anything in the world and beyond just to keep talking to you!
You know, the hardest thing in this process is the wait, living, breathing, walking in an impasse. A crisis with a resolution extended over what it feels like an eternity. A couple of days ago the doctors asked us to be aware that this is a long process. That you are walking all this time at the edge of the abyss and that we may be following you too closely and building meanings and hopes that are not real. They said you could skip and fall into the unknown at any moment and I felt depressed, with the wind knocked out of me, I went with a heavy load in my heart, as if they would have left a sword hanging by a thread over my head. Where do we draw the line between fantasy and hope? How can I wait and for what if they want me not to build hope? Today, I know you saw me and this filled me with hope. I choose the light of hope to be able to walk through the roughness of these days.
Ah! life is so delicate, fragile, like the flame of a candle in a strong wind. you are walking so close to the edges of life and I watch you powerless, devoid of any answers, forced to wait, wondering where you've been. My dear friends touch me and support me with their hope, faith and love, but I kept feeling lonely, wanting to reach you wherever you are.
And then, today, you opened your eyes and gave me that beautiful look. What did you tell me in that second? It was a long discouse on the essential things of life. I told you I love you so deep that I don't know how to reach the bottom of its source. In your eyes I read a million words mixed with the calla-lillies of your wedding bouquet. That was all I needed to live to be able to go on with my day.
I love you Janita. I miss hearing your words and being touched by your intense gaze. Get well so we can continue this conversation about life, about the snow and the children in your classes, about the families and our dreams, or maybe, just about how bad my cooking tastes.
FC
Thursday, February 16, 2006
A sign of progress!
This morning, Jan twice responded to verbal commands, opening an eye and looking directly at the speaker! In the first case, the speaker was Fede. Imagine his delight!
Although the rest of the day passed uneventfully, this is the first sign we have seen of a conscious reaction from Jan, and we are so grateful for it.
We continue to be amazed and thankful for your overwhelming response and outpouring of caring and prayer. Thank you!
Please continue to pray for progress in Jan's condition, if it's God's will, and for continued strength and peace for the family.
-Steve
Although the rest of the day passed uneventfully, this is the first sign we have seen of a conscious reaction from Jan, and we are so grateful for it.
We continue to be amazed and thankful for your overwhelming response and outpouring of caring and prayer. Thank you!
Please continue to pray for progress in Jan's condition, if it's God's will, and for continued strength and peace for the family.
-Steve
Thursday morning (Feb 16 7am)
Jan had an uneventful night. The pressure in her brain is at an acceptable level, and her temperature is fairly steady - a little high still, but stable. The nurse removed Jan's cooling blanket for a couple of hours for some rest - she could tell it irratates Jan. Jan has always liked being very warm when she's sleeping!
Jan is still on Tylenol for the fever, and antibiotics for the infection, but is not sedated. Neurology needs her unsedated so they can keep a clear picture of her neurological functions.
The just asked me to leave so they could do x-rays -- we'll try to find out later what the results are.
-Steve
Jan is still on Tylenol for the fever, and antibiotics for the infection, but is not sedated. Neurology needs her unsedated so they can keep a clear picture of her neurological functions.
The just asked me to leave so they could do x-rays -- we'll try to find out later what the results are.
-Steve
Wednesday, February 15, 2006
Wednesday morning update (Feb. 15)
Jan's condition has worsened. In order to minimize stimulation to her brain, visitors to her beside have been restricted to only two names (family members) for the next three days. And we can only be there briefly, and must follow a strict No Talking, No Touching rule.
Jan came through a second surgery last night. The major concern is the continuing swelling in her brain, so they removed more of her skull to allow for the swelling. They have now inserted a catheter to monitor the swelling inside her brain. If it reaches a certain level, they must immediately decide whether to remove more bone or take other action.
Jan is also now fighting an infection. We are not yet clear on where the infection is.
Dear friends and family, please do not call the hospital to check on Jan at this time. These calls get forwarded to her nurse at her bedside. The number of calls from all Jan's loving friends is impacting the nurses' work, and is also causing a telephone to ring beside Jan -- more stimulation we are trying to avoid. Feel free to come visit the Critical Care visitor's lounge if you'd like to, to support the family and each other.
-Steve
Jan came through a second surgery last night. The major concern is the continuing swelling in her brain, so they removed more of her skull to allow for the swelling. They have now inserted a catheter to monitor the swelling inside her brain. If it reaches a certain level, they must immediately decide whether to remove more bone or take other action.
Jan is also now fighting an infection. We are not yet clear on where the infection is.
Dear friends and family, please do not call the hospital to check on Jan at this time. These calls get forwarded to her nurse at her bedside. The number of calls from all Jan's loving friends is impacting the nurses' work, and is also causing a telephone to ring beside Jan -- more stimulation we are trying to avoid. Feel free to come visit the Critical Care visitor's lounge if you'd like to, to support the family and each other.
-Steve
Tuesday, February 14, 2006
Jan's second surgery
I have just received word that they are taking Jan in for her second surgery shortly.
Thank you all for your prayers, kind thoughts and remembrances. They have been a comfort to us, and we have been printing them and reading them to Jan, even in her coma.
-Steve
Thank you all for your prayers, kind thoughts and remembrances. They have been a comfort to us, and we have been printing them and reading them to Jan, even in her coma.
-Steve
Tuesday Evening (Feb. 14)
I apologize for not updating until now. The website has not let me in for updates for almost two days.
For the most part, there is little change in Jan's condition. She remains unconscious and with little movement on her right side.
As of this evening, Jan had developed a fever, and the medical staff had taken samples from her lungs for analysis. Because she is still on the ventilator (although breathing on her own), there is a very real and serious risk of pneumonia. The ventilator is nevertheless necessary, until she is awake and able to clear her airway herself via coughing etc.
Also early this evening, Jan's surgeon determined that she needs more surgery. We don't know yet when that will happen. According to her current nurse, there is still some ongoing bleeding in her brain that needs to be looked after. However, we will wait until we hear something directly from the doctors. The nurses do a terrific job, but for questions like this one, they are only able to pass on to us second hand information.
The family had a meeting with two of the doctors yesterday afternoon, and what they had to say can be summed up in the doctor's opening words to us: "Jan is very, very, very sick." We are thankful that the doctors were open and forthright with us, but it was so difficult to hear all the serious risks that remain for Jan. She has only won the first of several battles so far.
On the other hand, we remain hopeful and faithful. You all know how strong and determined Jan is. And we all know God can give her a miracle, if it is his will.
-Steve
For the most part, there is little change in Jan's condition. She remains unconscious and with little movement on her right side.
As of this evening, Jan had developed a fever, and the medical staff had taken samples from her lungs for analysis. Because she is still on the ventilator (although breathing on her own), there is a very real and serious risk of pneumonia. The ventilator is nevertheless necessary, until she is awake and able to clear her airway herself via coughing etc.
Also early this evening, Jan's surgeon determined that she needs more surgery. We don't know yet when that will happen. According to her current nurse, there is still some ongoing bleeding in her brain that needs to be looked after. However, we will wait until we hear something directly from the doctors. The nurses do a terrific job, but for questions like this one, they are only able to pass on to us second hand information.
The family had a meeting with two of the doctors yesterday afternoon, and what they had to say can be summed up in the doctor's opening words to us: "Jan is very, very, very sick." We are thankful that the doctors were open and forthright with us, but it was so difficult to hear all the serious risks that remain for Jan. She has only won the first of several battles so far.
On the other hand, we remain hopeful and faithful. You all know how strong and determined Jan is. And we all know God can give her a miracle, if it is his will.
-Steve
Monday, February 13, 2006
Well wishes
Those who want to express get-well wishes, etc. can do so in two ways:
- Post comments to the entries here
- Send an email to jan_get_well@yahoo.ca (jan_get_well)
We will print your messages to Jan and read them to her: now, with the faith that she will hear them and be comforted, and later, when she is awake.
From Fede
Fede posted the following as a comment to the initial entry below. I am reproducing it here, for all to see easily (-Steve):
FC said...
Many thanks for all the love and prayers sent J's way. She needs them all in these critical hours.
She is a warrior and is not giving up. She has also a faith like an old oaktree, solid and deep. Hours before she was taken to the hospital she was reading in the book of Isaiah something she believes to be true 100% : "you are carved in the palm of my hand.." and this is the special relationship with the Lord that keeps her alive right now.
Some data on the aneurism:
FC said...
Many thanks for all the love and prayers sent J's way. She needs them all in these critical hours.
She is a warrior and is not giving up. She has also a faith like an old oaktree, solid and deep. Hours before she was taken to the hospital she was reading in the book of Isaiah something she believes to be true 100% : "you are carved in the palm of my hand.." and this is the special relationship with the Lord that keeps her alive right now.
Some data on the aneurism:
- It bursted at 6PM on Friday Feb 10.
- 15 minutes after the incident she lost consciousness.
- Her last words before loosing consciuosness were: Oh Lord, please help us!...
- The CT scan showed that the area affected is where the language centre is located (left side of the brain). What an irony! she loves most singing and talking.
- the operation lasted about 3 hours and successfully stopped the initial hemorrage.
- The operation created some extra bleeding in other areas and swelling on the left side.
- the left bone plate was kept detached to allow for some extra room for the swelling and to reduce pressure on the right side.
- The most critical time is the first 72 hours. As it was noted in the first blog: she already has beaten many odds, but she is not out of danger.
Specific things to pray for:
- +stop the swelling of her brain
- +that no other arteries seize-up because of the trauma of the operation.
- +that she is protected from any major long-term negative impacts.
- +peace and strength for the family.
- +that husband keeps things in perspective and trusts the Lord in the middle of this life-shattering experience.
- if you believe in miracles, she needs one right now.
- Our hope is that she will be able to read these blogs soon and know how much she is loved.
Keep praying and blogging!
10:34 PM
Sunday, February 12, 2006
Sunday night (Feb. 12)
Just got home from the hospital. There are no significant changes from before. The nurse said there is a tiny improvement neurologically, and a slight return of movement on the right side.
Jan's aneuryism occurred on the left side of her brain, which controls the right side of the body. The nurses have said that some paralysis on the right side is to be expected at this time, due to the continued swelling in the brain.
Her left eye area was quite swollen and bruised. This is expected as a result of the surgery. The swelling and discolouration in her left eye was somewhat reduced tonight from this morning.
Jan's aneuryism occurred on the left side of her brain, which controls the right side of the body. The nurses have said that some paralysis on the right side is to be expected at this time, due to the continued swelling in the brain.
Her left eye area was quite swollen and bruised. This is expected as a result of the surgery. The swelling and discolouration in her left eye was somewhat reduced tonight from this morning.
Sunday update
Jan remains in the Critical Care Unit of the hospital. She has not regained consciousness so far. The medical team tells us the length of time patients take to wake up in situations like this varies a great deal, so they cannot make any predictions. She is being monitored by equipment and a nurse 24 hours a day.
The next 48 hours are a particularly critical period for Jan. And even after that, she remains in serious danger of complications for about three weeks.
At this stage, please do not go to the hospital to visit -- visits are being restricted to immediate family until Jan is more stable.
Thank you all for your prayers and support during this time. Please continue to pray -- it's the best thing you can do for Jan now!
The next 48 hours are a particularly critical period for Jan. And even after that, she remains in serious danger of complications for about three weeks.
At this stage, please do not go to the hospital to visit -- visits are being restricted to immediate family until Jan is more stable.
Thank you all for your prayers and support during this time. Please continue to pray -- it's the best thing you can do for Jan now!
The beginning - Friday night/Saturday morning.
The rupture occurred without any warning. All she knew was that she had a sudden excrutiating pain in her head. She lost consciousness while being brought out to the ambulance.
Jan was rushed to hospital, and then to a second hospital, at a major trauma centre. The nature and extent of the bleeding in her brain led the doctors to perform emergency surgery, which lasted about four hours.
Jan survived the initial rupture, and survived the surgery, which puts her way ahead of 'the odds'.
Jan was rushed to hospital, and then to a second hospital, at a major trauma centre. The nature and extent of the bleeding in her brain led the doctors to perform emergency surgery, which lasted about four hours.
Jan survived the initial rupture, and survived the surgery, which puts her way ahead of 'the odds'.
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