Mom and I came to visit Jan and had a good lunch (she ate half of my lunch and tried to share half of the hospital version of her lunch). Louise and Sara came later and when we were in the middle of the visit, Jan was moved to D5. We say the familiar hallway, familiar faces, and to our surprise, there we saw Renat, the wonderful social worker from this unit. She came right along to greet Jan and recall the weeks Jan was here last year after the major surgery. In total, Jan was at this hospital for about 6 weeks, so we got to know the nurses, social workers and therapists. It is a strange feeling to feel we are coming back to a familiar place, but at the same time acknowledge that this is the kind of place one would want to spend the least amount of time possible.
At lunch, I ran into the plastic surgeon in one of the hallways. He was very pleased with the operation and said that if she continues this rate of progress, she may be sent home as early as tomorrow.
Jan's right side is weaker than it was a few weeks ago. It may be the pills or just the effects of the surgery. Her face is becoming a bit swollen from all the fluids draining down from the head. The doctor said it would be a matter of days before everything goes back to normal.
Stay tuned,
Fede
Wednesday, September 26, 2007
Tuesday, September 25, 2007
The New Hairdo
Jan was in a lot better space today than yesterday. We arrived for the visit in the early afternoon. It was a scorching day out there! She called Mom and I to order for arriving late, indicating that she was feeling lonely all morning with no one to talk to because the nurses are all busy, and then, she settled into to a non-stop conversation mode for then next five hours.
I asked her if she had seen her new hairdo. I thought it was lovely. I said that she looks just like an independent teenager with an 'out of the box' fashion taste.
She said: No, these nurses and doctors are running all the time, they have no time to bring me a mirror. Mom didn't have one either, so I went to a nearby mall to find one. When I came back, Dad and Carol had arrived. So all of us had a great time seeing Jan check out her new hairdo. What do you think? Should she dye it pink or blue?
I asked her if she had seen her new hairdo. I thought it was lovely. I said that she looks just like an independent teenager with an 'out of the box' fashion taste.
She said: No, these nurses and doctors are running all the time, they have no time to bring me a mirror. Mom didn't have one either, so I went to a nearby mall to find one. When I came back, Dad and Carol had arrived. So all of us had a great time seeing Jan check out her new hairdo. What do you think? Should she dye it pink or blue?
Her progress has been amazing from one day to the next. Of course, I am comparing to last year's experience, when it was weeks before she was able to say a word and more weeks before she could walk. She is taking an antibiotic as a profilactic measure, to keep the wound from infections and keeps taking her regular pill for seizures. Otherwise, she is very alert and in a very good frame of mind.
During the time I was there, she decided to go to the bathroom; the nurse and I walked on either side holding her hands, but her walk was very steady. She began asking for solid food when the chart indicated only fluids. She called two or three nurses and told them that she was starving, that she wanted some real food! One male nurse obliged and placed a special order for her. By 7:00pm Jan was eating her supper with such glee that everyone celebrated.
As you notice in the pictures, her bandage was taken off this morning. She was looking at the hairdo with delight and at her scar with curiosity. they cut exactly along the same lines made in the first operation. If experience counts, her scar will become a fine line in a few weeks and hair will cover it, so it will be invisible.
Many, many thanks for your love and prayers. You were as important in this process as the surgeons themselves (it's no exageration).
Blessings,
Fede
Monday, September 24, 2007
Surgery results update
"God always does what he says, and is gracious in everything he does [...] God's there, listening for all who pray, for all who pray and mean it." Psalm 145:13,18
"O my soul bless God. From head to toe, I'll bless his holy name! O my soul bless God, don't forget a single blessing!" Psalm 103:1-2
Hurray! Jan is back!
The operation was a success! We didn't get a chance to talk to the surgeon, but his report through his colleagues was positive. The operation lasted about 3 hours and Jan was kept in the recuperation room for another 4.5 hours. Jan was awake when they moved her to the Intensive Care Unit at around 5pm today. She spoke to Mom and I as soon as she saw us. She was a bit dopey, but was able to manage a smile and also to give the nurse some instructions about the pain medication she prefers! 20 minutes after her arrival to the unit and she was already making sure everyone knew she was there...
She is looking beautiful! They shaved the front half of her head (about 2 inches above the hairline) and left the back half untouched, so she looks like a distinguished Chinese scholar from an ancient dynasty. She has a large patch covering the front half of her head, tubes and wires connect her to oxygen, an electronic monitor and an IV solution. We talked a few minutes and then left. She was tired and wanted to sleep. Sleep is the best medication for someone in recuperation. I think I am in recuperation as well because I am feeling quite sleepy.
She will remain in Intensive Care overnight, and probably, she will be transferred to a general ward tomorrow or the day after.
Thank you for your prayers and for strengthening our faith. We have learnt so much from this whole thing. In the months ahead we hope to have the time to share it with all of you. For now, join us in praising the Almighty! He has been good to Jan and me.
Fede
"O my soul bless God. From head to toe, I'll bless his holy name! O my soul bless God, don't forget a single blessing!" Psalm 103:1-2
Hurray! Jan is back!
The operation was a success! We didn't get a chance to talk to the surgeon, but his report through his colleagues was positive. The operation lasted about 3 hours and Jan was kept in the recuperation room for another 4.5 hours. Jan was awake when they moved her to the Intensive Care Unit at around 5pm today. She spoke to Mom and I as soon as she saw us. She was a bit dopey, but was able to manage a smile and also to give the nurse some instructions about the pain medication she prefers! 20 minutes after her arrival to the unit and she was already making sure everyone knew she was there...
She is looking beautiful! They shaved the front half of her head (about 2 inches above the hairline) and left the back half untouched, so she looks like a distinguished Chinese scholar from an ancient dynasty. She has a large patch covering the front half of her head, tubes and wires connect her to oxygen, an electronic monitor and an IV solution. We talked a few minutes and then left. She was tired and wanted to sleep. Sleep is the best medication for someone in recuperation. I think I am in recuperation as well because I am feeling quite sleepy.
She will remain in Intensive Care overnight, and probably, she will be transferred to a general ward tomorrow or the day after.
Thank you for your prayers and for strengthening our faith. We have learnt so much from this whole thing. In the months ahead we hope to have the time to share it with all of you. For now, join us in praising the Almighty! He has been good to Jan and me.
Fede
Jan is out!
1:50pm. The volunteer in charge of passing information in the waiting room, told us that the operation went allright. Jan is in the recuperation room (I assume it is next to the OR area). We are directed to go to the 5th floor to the Intensive care unit, where she will arrive. This is the same Unit Jan saw over a year ago after her first visit to this hospital. the one that a day after Jan was moved to a general ward, was flooded and closed for a few weeks while crews worked frantically to repair the damage.
Teh surgeon came to the visitor's area when we were at the cafeteria. So we went looking for him to his office. He is still operating, so Mom and I went to the waiting area in A148 to pick the bags with Jan's clothes. We also have a blanket that she forcefully insisted we bring. She knows that the hospital blankets are not warm enough for her. Mom and I look like two hikers looking for a place where to pitch our tents.
Wait, wait, wait. This is the main game in hospitals. I wonder if this is why the main clients are called "patients". You need the patience of Job in this place.
Mom and I migrated to the small waiting area in the 5th floor. We are told by the nurse at the reception desk to wait for about an hour because there are no beds available... So we can't see her yet... We'll keep you posted.
FC
Teh surgeon came to the visitor's area when we were at the cafeteria. So we went looking for him to his office. He is still operating, so Mom and I went to the waiting area in A148 to pick the bags with Jan's clothes. We also have a blanket that she forcefully insisted we bring. She knows that the hospital blankets are not warm enough for her. Mom and I look like two hikers looking for a place where to pitch our tents.
Wait, wait, wait. This is the main game in hospitals. I wonder if this is why the main clients are called "patients". You need the patience of Job in this place.
Mom and I migrated to the small waiting area in the 5th floor. We are told by the nurse at the reception desk to wait for about an hour because there are no beds available... So we can't see her yet... We'll keep you posted.
FC
"C" Day
Jan went into the OR at 10:15am.
She was calm and in a good spirit. A short nurse with a heavy accent came to take her from the patient waiting area in the 2nd floor OR section. She asked Jan a few standard questions about consent for the operation, recognition of her own signature, allergies. Jan joked that without her glasses she was practically blind, that she could not see the face of the nurse but trusted she worked for the hospital; the nurse did not catch the humour, but politely assured Jan that everything was fine. All we could she of her face behind the surgical mask and cap was a pair of dark eyes with very long eyelashes, she was probably in her early thirties. She checked Jan's bracelet and compared that to a card with Jan’s information to make sure this was the right patient. I could not help the thought that without these checks, probably in the past some patients were carried into the OR for illnesses they didn't have. From where we were, we could see the ORs, a series of rooms to the right of the hallway with sliding opaque glass doors. Right in front of us, a flat screen monitor with codes and info on each one of the ORs -just like the ones used at the airport for flight information- names flashing, numbers changing, nurses carrying people in and out of these rooms, people being wheeled-in, people being cut, people being put together, lives right on the line, some make it, others don’t. The nurse went into one of these rooms with Jan. This is as far as we were allowed to go. Mom and I picked up Jan’s bag’s of clothes and proceeded to the waiting area.
We started the day at 5:45am. I could not sleep, so I got out bed and went to the other room to do push-ups. Jan was half awake. At 6:15am we were all up, and left to the hospital at around 6:40am. There was hardly any traffic, so we made it to the hospital in a third of the regular time. Jan talked to Mom and as a co-pilot gave me instructions on every turn, every stop light and every movement the car made.
Upon arrival at 7:00am, we went to the day-surgery reception area in the G level, to check-in; where we waited for about 75 minutes for our turn. About 20 people sat there also waiting. At last an old black nurse came for Jan. About a half an hour later they asked Mom and I to join Jan. She was on one of this new sleek Patient Transfer Board (PTB)–in an adjacent area with about 10 cubicles separated by sliding curtains. This is where they ask the patient to strip of their street clothes and take off their jewellery, and are given one of these blue gowns with an opening on the back. This is where the social persona is left behind and everyone becomes a patient or the relatives of a patient. It’s like entering into a different country with different dress and behaviour codes. Illness is a great equalizer: no one can show off their expensive clothes or fashion shoes. People are united here by the fact that they all are suffering from one illness or another, wating to be cut and stapled together; their bodies are no more than delicate membranes filled with water. Everyone here is stripped naked, covered by the same thin humble robe, stripped of any delusion of self-importance and grandeour. It is clear that the only difference between one patient and the next is just the unique consciousness of an individual experience and the memory of it. We waited here for another 45 minutes and then we accompanied Jan to the second floor, to the waiting area just outside the ORs.
Mom had been reading aloud from a novel Jan likes. At times Jan laughed at the story. I heard the words, but could not attach any meaning to them, my mind was busy thinking about our presence here for the third time, about the last 19 months of our lives, about the lessons we have learned, about the profound changes in our personalities and faith.
At 10:15am We said goodbye, I love you, sweet dreams, and there she went, on that sleek new PTB, under the several covers because she was "freezing" all the time...
Mom and I went to the cafeteria to wait for the 3.5 to 4 hours the operation will take. Coincidentally, I bumped at about 11 am into Dr. Schwartz, the neurosurgeon, who was in line on the coffee shop. we had a brief talk about the clip jan ahs in her brain and he mentioned that he was "on call" in case they needed him for the operation (see recent blog!). But he was going into is office... hmmm.
FC
She was calm and in a good spirit. A short nurse with a heavy accent came to take her from the patient waiting area in the 2nd floor OR section. She asked Jan a few standard questions about consent for the operation, recognition of her own signature, allergies. Jan joked that without her glasses she was practically blind, that she could not see the face of the nurse but trusted she worked for the hospital; the nurse did not catch the humour, but politely assured Jan that everything was fine. All we could she of her face behind the surgical mask and cap was a pair of dark eyes with very long eyelashes, she was probably in her early thirties. She checked Jan's bracelet and compared that to a card with Jan’s information to make sure this was the right patient. I could not help the thought that without these checks, probably in the past some patients were carried into the OR for illnesses they didn't have. From where we were, we could see the ORs, a series of rooms to the right of the hallway with sliding opaque glass doors. Right in front of us, a flat screen monitor with codes and info on each one of the ORs -just like the ones used at the airport for flight information- names flashing, numbers changing, nurses carrying people in and out of these rooms, people being wheeled-in, people being cut, people being put together, lives right on the line, some make it, others don’t. The nurse went into one of these rooms with Jan. This is as far as we were allowed to go. Mom and I picked up Jan’s bag’s of clothes and proceeded to the waiting area.
We started the day at 5:45am. I could not sleep, so I got out bed and went to the other room to do push-ups. Jan was half awake. At 6:15am we were all up, and left to the hospital at around 6:40am. There was hardly any traffic, so we made it to the hospital in a third of the regular time. Jan talked to Mom and as a co-pilot gave me instructions on every turn, every stop light and every movement the car made.
Upon arrival at 7:00am, we went to the day-surgery reception area in the G level, to check-in; where we waited for about 75 minutes for our turn. About 20 people sat there also waiting. At last an old black nurse came for Jan. About a half an hour later they asked Mom and I to join Jan. She was on one of this new sleek Patient Transfer Board (PTB)–in an adjacent area with about 10 cubicles separated by sliding curtains. This is where they ask the patient to strip of their street clothes and take off their jewellery, and are given one of these blue gowns with an opening on the back. This is where the social persona is left behind and everyone becomes a patient or the relatives of a patient. It’s like entering into a different country with different dress and behaviour codes. Illness is a great equalizer: no one can show off their expensive clothes or fashion shoes. People are united here by the fact that they all are suffering from one illness or another, wating to be cut and stapled together; their bodies are no more than delicate membranes filled with water. Everyone here is stripped naked, covered by the same thin humble robe, stripped of any delusion of self-importance and grandeour. It is clear that the only difference between one patient and the next is just the unique consciousness of an individual experience and the memory of it. We waited here for another 45 minutes and then we accompanied Jan to the second floor, to the waiting area just outside the ORs.
Mom had been reading aloud from a novel Jan likes. At times Jan laughed at the story. I heard the words, but could not attach any meaning to them, my mind was busy thinking about our presence here for the third time, about the last 19 months of our lives, about the lessons we have learned, about the profound changes in our personalities and faith.
At 10:15am We said goodbye, I love you, sweet dreams, and there she went, on that sleek new PTB, under the several covers because she was "freezing" all the time...
Mom and I went to the cafeteria to wait for the 3.5 to 4 hours the operation will take. Coincidentally, I bumped at about 11 am into Dr. Schwartz, the neurosurgeon, who was in line on the coffee shop. we had a brief talk about the clip jan ahs in her brain and he mentioned that he was "on call" in case they needed him for the operation (see recent blog!). But he was going into is office... hmmm.
FC
Sunday, September 23, 2007
Surgery
The surgery will be Monday, September 24 at 9am.
Here is a picture of what they will "fix" in Jan's head, except that instead of the bone flap Jan will get a plate made of polymers:
Please join us with your prayers in this stressful time. Before, through and after science we trust that the maker of Jan's brain will protect her.
Fede
The preparation time has been emotionally draining for all. Jan is doing a lot better with the new medication, but still there are some side effects that Jan would like to get rid of.
I have learnt that neurology is more art than science, medicine knows still very little of how the brain works or heals and when a medication is prescribed, it is a hit and miss thing because each individual reacts to the chemicals in a different way!
But don't get me wrong, I still respect the efforts of the surgeons and specialists, even though their knowledge is so limited. They are courageous people to do what they do, knowing what they know.Here is a picture of what they will "fix" in Jan's head, except that instead of the bone flap Jan will get a plate made of polymers:
Please join us with your prayers in this stressful time. Before, through and after science we trust that the maker of Jan's brain will protect her.
Fede
Friday, September 21, 2007
The Friday before
The countdown has begun!
The time of the operation was moved earlier to 9:00am on Monday, 24-Sept-07. This means we will have to be there at 6:30am. I am feeling tempted to pitch a tent in the park across from the hospital to make sure we are on time.
This week has been particularly hard for Jan as she struggles with the 7th medication she tries for seizure control. The effects are just overwhelming and the difficulty to access the neurologyst on a short notice makes it more difficult. Her right side has been "emptied", as she describes it; there is little or no sensation, the right hand is totally limp most of the time, and there is a generalized feeling of unwellness all over. She says that her head "is out there" and indicates a point in front of her. She tires easily and is emotionally over-reactive. The quality of life is so low that we wonder what is best, to risk a seizure by not taking the medication or give up a normal life and live like a zombie.
I watched this afternoon struggle on the phone with the insurance company. In bits and pieces, she told them her frustration when she received this morning a letter from them rejecting her application for extended health because she had an aneurysm! We realized that now that she is down and needing coverage for medications, the underwriter let her know in no uncertain terms that she would not receive any coverage, which is the same as telling her that she is not welcomed to apply. Business logic? Discriminative action? At the end, it didn't matter. After talking with 8 people, she received the standard "we will call you later". She was loudly discouraged.
I wonder how could I (we) make her stronger so she goes to her operation rested and strong.
We are stressed even though we know it is a routine surgery.
I will print for her any emails you send. Make them short because she can't read more than 40 or 50 words at a time.
FC
The time of the operation was moved earlier to 9:00am on Monday, 24-Sept-07. This means we will have to be there at 6:30am. I am feeling tempted to pitch a tent in the park across from the hospital to make sure we are on time.
This week has been particularly hard for Jan as she struggles with the 7th medication she tries for seizure control. The effects are just overwhelming and the difficulty to access the neurologyst on a short notice makes it more difficult. Her right side has been "emptied", as she describes it; there is little or no sensation, the right hand is totally limp most of the time, and there is a generalized feeling of unwellness all over. She says that her head "is out there" and indicates a point in front of her. She tires easily and is emotionally over-reactive. The quality of life is so low that we wonder what is best, to risk a seizure by not taking the medication or give up a normal life and live like a zombie.
I watched this afternoon struggle on the phone with the insurance company. In bits and pieces, she told them her frustration when she received this morning a letter from them rejecting her application for extended health because she had an aneurysm! We realized that now that she is down and needing coverage for medications, the underwriter let her know in no uncertain terms that she would not receive any coverage, which is the same as telling her that she is not welcomed to apply. Business logic? Discriminative action? At the end, it didn't matter. After talking with 8 people, she received the standard "we will call you later". She was loudly discouraged.
I wonder how could I (we) make her stronger so she goes to her operation rested and strong.
We are stressed even though we know it is a routine surgery.
I will print for her any emails you send. Make them short because she can't read more than 40 or 50 words at a time.
FC
Thursday, September 20, 2007
Surgery number 4
It has been 19 months and 9 days since Jan was rushed to a hospital with a blood clot in the left side of her brain the size of a golf ball. In the first three days, she had two operations to stop the bleeding and to repair the damage caused by the aneurysm.
Almost four months later she had another operation to get the bone flaps replaced above her left ear, which had been kept out of head and in a freezer, to allow extra room in case of swelling of the brain. The operation was not a complete success, because the bones were already dead after all these weeks in a freezer. Jan came out of this surgery sporting a perfectly round head -only for a few weeks- and with the onset of seizures that still plague her until today.
Her body did not "recognize" this dead bone material and began to dissolve them slowly, leaving her head with a dent on her left temple. The neurosurgeon, in a consultation last November, agreed with Jan's request that the dent had to be fixed, and so the lengthy process to schedule an operation began.
10 months later, the neurosurgeon who fixed the aneurysm and the plastic surgeon who put the dead bone pieces, finally found time to fix this problem. A polymer plate has been "designed" to match the contour of Jan's head. It will be attached to her craneum with titanium screws after the old dead bones are cleaned out. According to both surgeons, this surgery is low risk, because they will not touch the brain again, they will just work over the "dura madre" (the hard membrane that covers the brain), place the plate and then close the skin again. All this will take about 4 hours. Yeah, there is no drive-in for this kind of surgery! Then, Jan will stay 3 or 4 days in the hospital for observation, to make sure everythis is allright.
The surgery is scheduled to take place on Monday, September 24, starting at 12 noon.
Why am I telling you all this? Because we need your prayers. Not to change God's plans, but to strengthen our faith and patience.
If you happen to feel that you want to send some love our way, we will welcome it with open arms.
How can you send love to us? Well, we will leave that to you. However, be assured that we will know and will be glad when we receive God's love through you.
If you want to keep updated, check the blog: http://jangetwell.blogspot.com
If you want to drop a line for Jan, write directly to her at: janitawalton@gmail.com
Thank you for being there for us all this time.
Fede and Jan
Almost four months later she had another operation to get the bone flaps replaced above her left ear, which had been kept out of head and in a freezer, to allow extra room in case of swelling of the brain. The operation was not a complete success, because the bones were already dead after all these weeks in a freezer. Jan came out of this surgery sporting a perfectly round head -only for a few weeks- and with the onset of seizures that still plague her until today.
Her body did not "recognize" this dead bone material and began to dissolve them slowly, leaving her head with a dent on her left temple. The neurosurgeon, in a consultation last November, agreed with Jan's request that the dent had to be fixed, and so the lengthy process to schedule an operation began.
10 months later, the neurosurgeon who fixed the aneurysm and the plastic surgeon who put the dead bone pieces, finally found time to fix this problem. A polymer plate has been "designed" to match the contour of Jan's head. It will be attached to her craneum with titanium screws after the old dead bones are cleaned out. According to both surgeons, this surgery is low risk, because they will not touch the brain again, they will just work over the "dura madre" (the hard membrane that covers the brain), place the plate and then close the skin again. All this will take about 4 hours. Yeah, there is no drive-in for this kind of surgery! Then, Jan will stay 3 or 4 days in the hospital for observation, to make sure everythis is allright.
The surgery is scheduled to take place on Monday, September 24, starting at 12 noon.
Why am I telling you all this? Because we need your prayers. Not to change God's plans, but to strengthen our faith and patience.
If you happen to feel that you want to send some love our way, we will welcome it with open arms.
How can you send love to us? Well, we will leave that to you. However, be assured that we will know and will be glad when we receive God's love through you.
If you want to keep updated, check the blog: http://jangetwell.blogspot.com
If you want to drop a line for Jan, write directly to her at: janitawalton@gmail.com
Thank you for being there for us all this time.
Fede and Jan
Tuesday, September 18, 2007
Reconstructing Jan
Hi all,
I know, I know, I didn't keep updating the updates more often. Strangely enough, I feel no remorse. So, here are the latest news:
Jan, Mom and I went to see the plastic surgeon today. He has scheduled Jan's head reconstruction for this coming Monday, Sept. 24, 2007 sometime in the early afternoon.
They got last week the polymer plate that will make Jan's head round again. Jan will be doing some pre-op tests to make sure everything is on order.
The operation is expected to last about 4 hours. the first part will be done by the same surgeon that clipped Jan's aneurysm, the second part will be done by the plastic surgeon.
After the operation she will go to the neurological ICU for the following 24 hours. Is she is doing well and there are no complications, she could be home in 3 to 4 days.
They showed us a picture (CTscan) of Jan's craneum and how it will look like after the operation. I must say it looked beautiful! So Jan is willing to go for a few weeks with a half- shaven head
This operation will cut only the skin and clean what's left of the flap bones. It will not cut the membrane covering the brain (dura madre), so the brain will be untouched. They hope not to bruise the brain.
Jan had a big sight of relief. This should be the last operation related to the aneurysm. I saw her very happy now that she will be growing her hair long again. She told me that she had not cut her hair short in all her life!. As you can see, her vanity is intact, perfectly undisturbed by the aneurysm. :)
Here is what you can do (if you are going to do anything):
1. Pray that the surgery may be successful in all ways, this will ensure that she will not have to go back in the future for more surgeries in her head.
2. Pray for the family, as this is an added stress in an already stressful time for several how are experiencing medical difficulties.
3. Check the blog for updates (I will try to post daily progress notes)
4. If you decide to visit Jan at the hospital, remember:
I know, I know, I didn't keep updating the updates more often. Strangely enough, I feel no remorse. So, here are the latest news:
Jan, Mom and I went to see the plastic surgeon today. He has scheduled Jan's head reconstruction for this coming Monday, Sept. 24, 2007 sometime in the early afternoon.
They got last week the polymer plate that will make Jan's head round again. Jan will be doing some pre-op tests to make sure everything is on order.
The operation is expected to last about 4 hours. the first part will be done by the same surgeon that clipped Jan's aneurysm, the second part will be done by the plastic surgeon.
After the operation she will go to the neurological ICU for the following 24 hours. Is she is doing well and there are no complications, she could be home in 3 to 4 days.
They showed us a picture (CTscan) of Jan's craneum and how it will look like after the operation. I must say it looked beautiful! So Jan is willing to go for a few weeks with a half- shaven head
This operation will cut only the skin and clean what's left of the flap bones. It will not cut the membrane covering the brain (dura madre), so the brain will be untouched. They hope not to bruise the brain.
Jan had a big sight of relief. This should be the last operation related to the aneurysm. I saw her very happy now that she will be growing her hair long again. She told me that she had not cut her hair short in all her life!. As you can see, her vanity is intact, perfectly undisturbed by the aneurysm. :)
Here is what you can do (if you are going to do anything):
1. Pray that the surgery may be successful in all ways, this will ensure that she will not have to go back in the future for more surgeries in her head.
2. Pray for the family, as this is an added stress in an already stressful time for several how are experiencing medical difficulties.
3. Check the blog for updates (I will try to post daily progress notes)
4. If you decide to visit Jan at the hospital, remember:
- that she loves your company, but she needs quiet and rest.
- that she needs you to bring positive energy to her, if you are not in a positive frame of mind, please don't come as this will only drain her energy.
- keep your visit short.
- she needs your touch, but do it ever so gently, as the medications have made her over-sensitive to touch. Remember that her right side is over-sensitive.
- When visiting and talking to her come to her left side as her vision on the right is limited.
- She loves your greeting cards better than stuffed animals or toiletries. You don't need to buy expensive cards, be creative and make your own! She loves original art, particularly if it comes from you.
- Bring a recent picture of you for her collage and write your name on it so she can practice repeating your name.
I found this very useful list in a wonderful book written by an MD who is an aneurysm survivor. It should give you a good perspective of what patients need. Of course, this surgery is not as instrusive as the one when they clipped Jan's aneurysm, and jan has already "graduated" deom many of these stages, but the list is still useful to make your interactions with Jan more satisfying for you and her.
40 Things I need the most
1. I am not stupid, I am wounded, Please respect me
2. Come close, speak slowly, and enunciate clearly.
3. Repeat yourself -assume I know nothing and start from the beginning over and over.
4. Be as patient with me the 20th time you teach me something, as you were the first.
5. Approach me with an open heart and slow your energy down. Take your time.
6. Be aware of what your body language and facial expressions are communicating to me.
7. Make eye contact with me. I am here –come find me, encourage me.
8. Please don’t raise your voice –I am not deaf. I’m wounded.
9. Touch me appropriately and connect with me.
10. Honor the healing power of sleep.
11. Protect my energy. No talk radio, TV or nervous visitors. Keep visitations brief (five minutes)
12. Stimulate my brain when I have the energy to learn something new, but know that a small amount will wear me out quickly.
13. Use age appropriate educational toys and books to teach me.
14. Introduce me to the world kinesthetically. Let me feel everything.
15. Teach me with monkey-see, monkey-do behavior.
16. Trust that I am trying –just not with your skill level or on your schedule.
17. Ask me multiple-choice questions. Avoid Yes/No questions.
18. Ask me questions with specific answers. Allow me time to hunt for an answer.
19. Do not assess my cognitive ability by how fast I can think.
20. Handle me gently, as you would a newborn.
21. Speak to me directly, not about me to others.
22. Cheer me on. Expect me to recover completely, even if it takes twenty years!
23. Trust that my brain can always continue to learn.
24. Break all actions down into smaller steps of action.
25. Look for what obstacles prevent me from succeeding on a task.
26. Clarify for me what the next level or step is so I know what I am working toward.
27. Remember that I have to be proficient at one level of function before I can move onto the next level.
28. Celebrate all of my little successes. They inspire me.
29. Please don’t finish my sentences for me or fill in words I can’t find. I need to work my brain.
30. If I can’t find an old file, make it a point to create a new one.
31. I may want you to think I understand more than I really do.
32. Focus on what I can do rather than bemoan what I cannot do.
33. Introduce me to my old life. Don’t assume that because I cannot play like I used to play that I won’t continue to enjoy music or an instrument, etc.
34. Remember that in the absence of some functions, I have gained other abilities.
35. Keep me familiar with my family, friends, and loving support. Build a collage wall of cards and photos that I can see. Label them so I can review them.
36. Call in the troops! Create a healing team for me. Send word out to everyone so the can send me love. Keep them abreast of my condition and ask them to do specific things to support me –like visualize me being able to swallow with ease or rocking my body up into a sitting position.
37. Love me for who I am today. Don’t hold me to being the person I was before. I have a different brain now.
38. Be protective of me but do not stand in the way of my progress.
39. Show me old video footage of me doing things to remind me about how I spoke, walked, and gestured.Remember that my medications probably make me feel tired, as well as mask my ablity to know what it feels like to be me.
(from Jill Taylor, My Stroke of Insight, 2006)
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