I have been waiting for some good-solid progress before I've reported. Kathy visited Dr. Kureshi two weeks ago for her post surgery check-up. He was extremely happy with the overall appearance of Kathy’s incision. He commented, everything looked great with no signs of redness or infection. Kathy was greatly relieved when he removed the surgery staples.
Kathy’s feet are another story. She has been an absolutely disaster after her Achilles surgery and the effects of her foot nerve damage. Her local physical therapists were just not helpful. Ladonna, Kathy’s sister was extremely helpful. Ladonna posse’s extensive Chiropractic knowledge in these areas and got proper treatment into gear. Ladonna ordered in house treatments, special walking braces and assisted walking. Kathy was much improved in just a few days. Why can’t we get the same level of help from the orthopedic surgeons?
We applied to get her back into Sharp's out-patient therapy for longer term therapy. We feel Sharp is the best option for her long term rehabilitation professional care.
Overall, Kathy’s shunt operation is much improved over the last week. She seems to get fewer headaches and other complications. Unfortunately, some days, she still gets bad headaches which are extremely difficult to manage. With the daily assistance of her visiting parents, things have gone much smoother. WE hope on her next appointment with Dr. Kureshi, he can adjust her shunt to optimize its performance and eliminate the headaches. I will post you up over the next few weeks with new information. To To Lo!
Wednesday, March 21, 2007
Sunday, March 04, 2007
New Shunt Report Card
Were at the one week anniversary date of Kathy’s shunt revision surgery. How is she doing?
The Good:
No earaches
Good appetite
Sometimes light headache
Sleeping OK
The Bad:
Head pain from the incision
Some very strong headaches
Dizzyness
Feels weird at times
Overall, Kathy’s Medtronic Shunt makes a difference. She has lost some painful side effects but regained new ones. It’s also confusing if the surgery incision is producing referred pain or is it her ventricles. Were visiting Dr. Kureshi this week and he plans to remove her surgery staples. (They are absolutely a major pain) This week we hope things just even out. Wish us luck!
The Good:
No earaches
Good appetite
Sometimes light headache
Sleeping OK
The Bad:
Head pain from the incision
Some very strong headaches
Dizzyness
Feels weird at times
Overall, Kathy’s Medtronic Shunt makes a difference. She has lost some painful side effects but regained new ones. It’s also confusing if the surgery incision is producing referred pain or is it her ventricles. Were visiting Dr. Kureshi this week and he plans to remove her surgery staples. (They are absolutely a major pain) This week we hope things just even out. Wish us luck!
Tuesday, February 27, 2007
The Waiting Game
Kathy’s progress is too difficult to chart at the moment. We went from Thursday’s high of the surgery to the low of Friday’s complications. Saturday we went from the excitement of being released from the hospital to a mixed up Sunday at home. So what’s going on?
This morning Kathy’s surgery incision is slightly raised and giving her lots of pain in the back of her head. She has a headache but we are not sure of if its source. The good news is Kathy is not experiencing earaches or ear discomfort after the shunt revision.
As time goes on, we can only measure against her earlier surgery. We are praying for no new problems. The big fear is the infection of the shunt and we defiantly do not want that! I guess were playing the waiting game.
This morning Kathy’s surgery incision is slightly raised and giving her lots of pain in the back of her head. She has a headache but we are not sure of if its source. The good news is Kathy is not experiencing earaches or ear discomfort after the shunt revision.
As time goes on, we can only measure against her earlier surgery. We are praying for no new problems. The big fear is the infection of the shunt and we defiantly do not want that! I guess were playing the waiting game.
Friday, February 23, 2007
The Big Easy
Well, I guess everything went too easy yesterday. (A quick surgery, good prognosis and a short hospital stay) Kathy had a rough night and morning. Her surgical dressing bled heavy and her headaches were so strong she vomited continually. I guess this is the famous two steps forward and one step back saying in action.
Doctor Kureshi visited this morning and ordered a CT scan of the brain to determine if everything was OK. He also ordered the nurses to redress her incision and have the staff pharmacist analyze the pain and nausea situation. The bottom line is Kathy will not go home today.
The doctor wants to get the head pain and bleeding under control before Kathy is to go home. We of course are all disappointed with the news. Hopefully things will get better soon.
Doctor Kureshi visited this morning and ordered a CT scan of the brain to determine if everything was OK. He also ordered the nurses to redress her incision and have the staff pharmacist analyze the pain and nausea situation. The bottom line is Kathy will not go home today.
The doctor wants to get the head pain and bleeding under control before Kathy is to go home. We of course are all disappointed with the news. Hopefully things will get better soon.
Thursday, February 22, 2007
Fits Like a Glove!
Kathy had her surgery today and it went about as well as could be expected. She started at 5:30 A.M. with her pre-surgery preparations and went into surgery around 7:00 A.M. We waited until 9:30 A.M. when Dr. Kureshi came downstairs and gave us his post surgery update.
Dr. Kureshi commented everything went extremely well. He had to make an extra long incision to get everything fitted correctly but that was the only unpredictable event. He installed an adjustable shunt for the fine tuning features, which is set at a lesser flow to slow down the movement of excess CSF. (Over draining was the problem with Kathy's older shunt) Also, he installed a gravity cut off feed which allows Kathy to move her head up and down without as much head pain. Everything this afternoon went as planned with Kathy being probably released tomorrow.
Kathy's ROOM number is #803-1 on the 8th floor of Sharp Mercy Hospital. You can call the front desk at (858) 939-3960 and ask for her room. She has no direct dial number.
Again thanks for the prayers and the wonderful visits.
Dr. Kureshi commented everything went extremely well. He had to make an extra long incision to get everything fitted correctly but that was the only unpredictable event. He installed an adjustable shunt for the fine tuning features, which is set at a lesser flow to slow down the movement of excess CSF. (Over draining was the problem with Kathy's older shunt) Also, he installed a gravity cut off feed which allows Kathy to move her head up and down without as much head pain. Everything this afternoon went as planned with Kathy being probably released tomorrow.
Kathy's ROOM number is #803-1 on the 8th floor of Sharp Mercy Hospital. You can call the front desk at (858) 939-3960 and ask for her room. She has no direct dial number.
Again thanks for the prayers and the wonderful visits.
Tuesday, February 20, 2007
Kathy to Have Surgery February the 22nd!
Kathy will have shunt revision surgery this Thursday at Sharp Memorial Hospital. Her surgery is scheduled at 7:20 AM. I expect the surgery to take just a few hours. She should go right into post surgery ICU for the afternoon. I am told she will be in the hospital for only a few days and get released for the weekend.
The surgery is very straight forward. The plan to insert a new adjustable shunt valve in place of the fixed valve which is over-draining. After the valve placed they will hook up both the siphon end and the displacement end tubes without changing. This is the way its supposed to happen. Kathy should then have the comfort of having a valve that a Doctor can fine tune to assist Kathy's comfort levels. Let's keep our fingers crossed!
The surgery is very straight forward. The plan to insert a new adjustable shunt valve in place of the fixed valve which is over-draining. After the valve placed they will hook up both the siphon end and the displacement end tubes without changing. This is the way its supposed to happen. Kathy should then have the comfort of having a valve that a Doctor can fine tune to assist Kathy's comfort levels. Let's keep our fingers crossed!
Monday, February 12, 2007
Surgery On My Mind
Today was a big day for Kathy. She visited with her new Neurologist, Dr. Shen Ye Wang and her Neurosurgeon, Dr. Sohaib Kureshi. Hard names to remember but both unforgettable doctors. Kathy’s morning visit was with Dr. Wang for the continued ear ache pain.
Kathy needs a permanent Neurologist besides a Neurosurgeon and visiting Dr. Wang seemed a good choice. He gave Kathy a round of testing but could not diagnose any problem with her inner ear or identify the referred pain source. His opinion was since the inner ear and brain are in such close proximity with both intertwined in function; her source of pain could very well be the low-pressure level in her brain. He portrayed “were there’s smoke, there’s fire”. He also gave us interesting alternative viewpoints of what issues are going on internally in Kathy’s brain and suggested she move forward on her shunt revision. If her ear aches did not go away after the revision we could eliminate that as a source and proceed on alternate treatments. One down one more to go!
In the afternoon we meet with her longtime Neurosurgeon, Dr. Kureshi. The purpose of the visit was to exorcise, face to face, some of the bewildering questions towards her shunt revision. Dr. Kureshi was awesome in taking time to answer each question in a layman’s approach with true compassion and emotion. I summarize their conversation below:
He suggested since Kathy has severe symptoms like headaches and neck pain 100% of the time, it is worth the surgery risk for the potential upside of less pain. (Kathy has a condition where her shunt is overdraining her CSF fluid in her brain cavity) Nothing ventured, nothing gained and nothing guaranteed. He is a smart doctor, he continues not to issues any guarantees except these comments "most of my patients I have performed shunt revisions on, have shown some improvement".
What are the major risks in shunt revision (replace the fixed valve with a adjustable magnetic valve)? As in all surgeries, this carries an infection and internal bleeding complication factor around 1%.
The surgery will be a Sharp Hospital (the same spot as her rehabilitation hospital) as soon as it can be scheduled. We will let you know ASAP.
The operation should take less than an hour without any complications. He will cut into the area of the original shunt, cut back the scar tissue, disconnect the siphon tube from her brain to the shunt and drainage tube to her stomach from the shunt, remove the old shunt and insert the calibrated adjustable shunt in its place. Once everything is working he will hook up the two ends to the new shunt and stitch up the incision.
Kathy will stay in the hospital for one or two day at the most. He wants her home as quickly as possible to minimize any hospital borne infections. If Kathy were to get an infection later, it most likely originating during the actual surgery itself. We don’t even want to go there-It would require a 3-4 week hospitalization and be a major bummer.
Over a period of three weeks to a month Kathy should progress to point-possibley further along than where she is today. We hope this includes less headaches and ear aches! She should easily make her son’s Wedding in May without any hitches-His words not mine.
Kathy asked about her constant inability to speak words she was thinking but could not quite roll out into her conversations. He described this condition in a Latin term and is associated with the damage her abscess created in the speech area. He is still extremely pleased in the fact that Kathy can speak and write as well as she does and not to worry because this will improve over time.
Kathy asked about her short term memory loss after her accident. She stated she could not remember much of anything over the last two years. He reminded Kathy the brain takes a long time to store away short-term memory and if you have an accident, the brain has not properly preserved the items into long term storage yet. It’s like your hard drive crashed but the data is still intact. He suggests a cognitive recognition program that was being taught at UCSD as a possible start to finding and remembering her recent memories.
Kathy asked about her inability to remember daily comments from people around her. He stated that her brain after the injury is not as attentive and trying to get to recover to optimum performance. (He reminded Kathy it has only been six months since her surgery and it takes up to five years to get everything back that’s coming back) He told her to concentrate when someone talks to her similar to the way she was listening to him. (Because he said he was going operate on her head so she better listen) She would need to work on her concentration and over time she would regain these abilities.
Finally Kathy told him of her tiredness, frustration an embarrassment of her condition. He stood up and lectured Kathy on the miracle she is and reminded her of her close brush with death or extreme retardation. He told her everyone else should be embarrassed around her that cannot appreciate what she has gone through to survive today. She should be proud that she has recovered 95% of here abilities and above all, got that second chance so many people don’t get. A great deal of recovery will be driven by her desire to fulfill her destiny.
He was very inspirational and even I wanted to go out and run through a wall for him and Kathy after his uplifting speech. As we sit here tonight Kathy is still scarred and confused. The operations, the hospital, mistakes, pain and the uncertainty-Should she go forward or not? I guess we’ll find out sooner or later? Keep you posted on the surgery date and the outcome!
Love and Prayers
Kathy needs a permanent Neurologist besides a Neurosurgeon and visiting Dr. Wang seemed a good choice. He gave Kathy a round of testing but could not diagnose any problem with her inner ear or identify the referred pain source. His opinion was since the inner ear and brain are in such close proximity with both intertwined in function; her source of pain could very well be the low-pressure level in her brain. He portrayed “were there’s smoke, there’s fire”. He also gave us interesting alternative viewpoints of what issues are going on internally in Kathy’s brain and suggested she move forward on her shunt revision. If her ear aches did not go away after the revision we could eliminate that as a source and proceed on alternate treatments. One down one more to go!
In the afternoon we meet with her longtime Neurosurgeon, Dr. Kureshi. The purpose of the visit was to exorcise, face to face, some of the bewildering questions towards her shunt revision. Dr. Kureshi was awesome in taking time to answer each question in a layman’s approach with true compassion and emotion. I summarize their conversation below:
He suggested since Kathy has severe symptoms like headaches and neck pain 100% of the time, it is worth the surgery risk for the potential upside of less pain. (Kathy has a condition where her shunt is overdraining her CSF fluid in her brain cavity) Nothing ventured, nothing gained and nothing guaranteed. He is a smart doctor, he continues not to issues any guarantees except these comments "most of my patients I have performed shunt revisions on, have shown some improvement".
What are the major risks in shunt revision (replace the fixed valve with a adjustable magnetic valve)? As in all surgeries, this carries an infection and internal bleeding complication factor around 1%.
The surgery will be a Sharp Hospital (the same spot as her rehabilitation hospital) as soon as it can be scheduled. We will let you know ASAP.
The operation should take less than an hour without any complications. He will cut into the area of the original shunt, cut back the scar tissue, disconnect the siphon tube from her brain to the shunt and drainage tube to her stomach from the shunt, remove the old shunt and insert the calibrated adjustable shunt in its place. Once everything is working he will hook up the two ends to the new shunt and stitch up the incision.
Kathy will stay in the hospital for one or two day at the most. He wants her home as quickly as possible to minimize any hospital borne infections. If Kathy were to get an infection later, it most likely originating during the actual surgery itself. We don’t even want to go there-It would require a 3-4 week hospitalization and be a major bummer.
Over a period of three weeks to a month Kathy should progress to point-possibley further along than where she is today. We hope this includes less headaches and ear aches! She should easily make her son’s Wedding in May without any hitches-His words not mine.
Kathy asked about her constant inability to speak words she was thinking but could not quite roll out into her conversations. He described this condition in a Latin term and is associated with the damage her abscess created in the speech area. He is still extremely pleased in the fact that Kathy can speak and write as well as she does and not to worry because this will improve over time.
Kathy asked about her short term memory loss after her accident. She stated she could not remember much of anything over the last two years. He reminded Kathy the brain takes a long time to store away short-term memory and if you have an accident, the brain has not properly preserved the items into long term storage yet. It’s like your hard drive crashed but the data is still intact. He suggests a cognitive recognition program that was being taught at UCSD as a possible start to finding and remembering her recent memories.
Kathy asked about her inability to remember daily comments from people around her. He stated that her brain after the injury is not as attentive and trying to get to recover to optimum performance. (He reminded Kathy it has only been six months since her surgery and it takes up to five years to get everything back that’s coming back) He told her to concentrate when someone talks to her similar to the way she was listening to him. (Because he said he was going operate on her head so she better listen) She would need to work on her concentration and over time she would regain these abilities.
Finally Kathy told him of her tiredness, frustration an embarrassment of her condition. He stood up and lectured Kathy on the miracle she is and reminded her of her close brush with death or extreme retardation. He told her everyone else should be embarrassed around her that cannot appreciate what she has gone through to survive today. She should be proud that she has recovered 95% of here abilities and above all, got that second chance so many people don’t get. A great deal of recovery will be driven by her desire to fulfill her destiny.
He was very inspirational and even I wanted to go out and run through a wall for him and Kathy after his uplifting speech. As we sit here tonight Kathy is still scarred and confused. The operations, the hospital, mistakes, pain and the uncertainty-Should she go forward or not? I guess we’ll find out sooner or later? Keep you posted on the surgery date and the outcome!
Love and Prayers
Sunday, February 04, 2007
A Super Bowl-Kathy Progress Report
We are back! Many people have asked why I haven’t keep posting the blog. Busy, busy and busier. I wish I could report life has gone back to normal and everything is fine but I can’t. Kathy has made great progress in many areas but still has significant problems with her shunt. What is wrong with her shunt?
Kathy’s shunt valve is still overflowing CSF fluid out of her brain. When you look at the CT scans, her ventricles are little thin slits instead of normal canals. We have learned that most surgeons install shunts with the aim of overflow for obvious reason vs. under flowing. The big issue is how the patient “adjusts” to the “under” pressure in the cranial area. Headaches, neck aches, nausea and vomiting are all extreme reactions to overflowing shunt valve.
Kathy has mostly recurring head aches and neck aces but are not considered major shunt failure symptoms. Dr. Kureshi has given Kathy the choice; live with your side effects or have surgery and get an adjustable shunt valve installed. Seems like an easy choice but you have to consider surgery risks, pain, hospitalization, complications, infections and will the revised valve work better. A true risk versus reward dilemma!
What else is going on with Kathy? Well, she has a constant ear ache. It started around Christmas time and got progressively worse towards New Year. We went to a new ENT doctor for a diagnosis before New Year’s Day. She saw nothing and advised us to go to a TMJ jaw specialist for referred ear pain. During the time we saw her and the most recent doctor, Kathy has seen eight doctors for ear pain; the dentist, the neurosurgeon, the practitioner, the new practitioner, another ENT, an inner ear specialist and finally the TMJ doctor. The TMJ doctor found a ball of cotton in Kathy’s ear but bruised up her inner ear canals getting it out! Oh what a mess! Who knows anything?
Kathy is still suffering from her ear ache! We can only guess it might be her shunt or lingering pressure in the brain but these symptoms are not consistent with shunt or pressure symptoms. So far it’s a real mystery and a great disappointment in the medical profession. Let’s move on-
The good news is about everything else is going good. Kathy has a good appetite and her current weight is excellent. She can take care of herself during the day and carry out all of her personal grooming requirements. She's walking without the assistance of a walker and currently using a cane. Kathy’s Achilles tendon surgery was successful and she seems to be walking better each week. She will start physical therapy to build strength in the feet to assist in her balance which is a little off. Her overall physical condition below her head seems great!
Kathy’s brain besides the head aches and ear aches is working well. All her measurable cognitive skills have improved immensely. She fully understands all actions, communicates well, writes well and has even started to email her family. She still lacks self confidence at times and is confused when events get busy. This will all improve with time. So, we are in search of the ultimate ear ache solution. Will Kathy go forward with her shunt revision? These are all things hopefully God will help decide soon.
Again Kathy cannot express all of her intense feelings for the wonderful family and friends that got her through the difficult times. She just wants to say thank you, over and over and love to you and your families.
Kathy’s shunt valve is still overflowing CSF fluid out of her brain. When you look at the CT scans, her ventricles are little thin slits instead of normal canals. We have learned that most surgeons install shunts with the aim of overflow for obvious reason vs. under flowing. The big issue is how the patient “adjusts” to the “under” pressure in the cranial area. Headaches, neck aches, nausea and vomiting are all extreme reactions to overflowing shunt valve.
Kathy has mostly recurring head aches and neck aces but are not considered major shunt failure symptoms. Dr. Kureshi has given Kathy the choice; live with your side effects or have surgery and get an adjustable shunt valve installed. Seems like an easy choice but you have to consider surgery risks, pain, hospitalization, complications, infections and will the revised valve work better. A true risk versus reward dilemma!
What else is going on with Kathy? Well, she has a constant ear ache. It started around Christmas time and got progressively worse towards New Year. We went to a new ENT doctor for a diagnosis before New Year’s Day. She saw nothing and advised us to go to a TMJ jaw specialist for referred ear pain. During the time we saw her and the most recent doctor, Kathy has seen eight doctors for ear pain; the dentist, the neurosurgeon, the practitioner, the new practitioner, another ENT, an inner ear specialist and finally the TMJ doctor. The TMJ doctor found a ball of cotton in Kathy’s ear but bruised up her inner ear canals getting it out! Oh what a mess! Who knows anything?
Kathy is still suffering from her ear ache! We can only guess it might be her shunt or lingering pressure in the brain but these symptoms are not consistent with shunt or pressure symptoms. So far it’s a real mystery and a great disappointment in the medical profession. Let’s move on-
The good news is about everything else is going good. Kathy has a good appetite and her current weight is excellent. She can take care of herself during the day and carry out all of her personal grooming requirements. She's walking without the assistance of a walker and currently using a cane. Kathy’s Achilles tendon surgery was successful and she seems to be walking better each week. She will start physical therapy to build strength in the feet to assist in her balance which is a little off. Her overall physical condition below her head seems great!
Kathy’s brain besides the head aches and ear aches is working well. All her measurable cognitive skills have improved immensely. She fully understands all actions, communicates well, writes well and has even started to email her family. She still lacks self confidence at times and is confused when events get busy. This will all improve with time. So, we are in search of the ultimate ear ache solution. Will Kathy go forward with her shunt revision? These are all things hopefully God will help decide soon.
Again Kathy cannot express all of her intense feelings for the wonderful family and friends that got her through the difficult times. She just wants to say thank you, over and over and love to you and your families.
Thursday, December 07, 2006
Steady as She Goes
For those who depend on my blog for information, I’m sorry. I post only when a significant event occurs or a change in diagnosis or condition. At the moment Kathy and I are trying to get back into a semi-regular weekly regime and is more difficult than it seems. Kathy’s medical issues, the children, work and stress of daily life can get quite complicated. Mix everything up and top it off with the holiday season and it’s a formula to freak out!
The good news is Kathy’s condition. She is slowly “pressurizing” (I think?) and every day seems to improve slightly. Her headaches remain but are of less intensity and duration. Her nausea and low energy symptoms still persist and we are trying to find solutions. Dr. Kureshi plans to see her after Christmas and it appears she has made enough progress to warrant a good report card.
Kathy's getting adjusted to her new camber boots and walking easier. The great news is the boot can come off and go back on for showering and rest. Kathy has taken the boot off and tested her pain level-it hurts! Walking without the boot is extremely painful to her Achilles. Her right foot also wants to curl as before the surgery, so physical therapy might be needed. A nurse at Kathy’s foot doctor told us he had similar surgery and it took him almost 4 months to get back. (He loves to play soccer though)
The Christmas season is upon us and a special time of the year for families. I thank God this special time will include Kathy presence and warmth. Family activities and Christmas spirit have always been a favorite of hers. We thank you all for the amazing love and support you have given our family through the crisis and wish you a wonderful time leading up to Christmas.
The good news is Kathy’s condition. She is slowly “pressurizing” (I think?) and every day seems to improve slightly. Her headaches remain but are of less intensity and duration. Her nausea and low energy symptoms still persist and we are trying to find solutions. Dr. Kureshi plans to see her after Christmas and it appears she has made enough progress to warrant a good report card.
Kathy's getting adjusted to her new camber boots and walking easier. The great news is the boot can come off and go back on for showering and rest. Kathy has taken the boot off and tested her pain level-it hurts! Walking without the boot is extremely painful to her Achilles. Her right foot also wants to curl as before the surgery, so physical therapy might be needed. A nurse at Kathy’s foot doctor told us he had similar surgery and it took him almost 4 months to get back. (He loves to play soccer though)
The Christmas season is upon us and a special time of the year for families. I thank God this special time will include Kathy presence and warmth. Family activities and Christmas spirit have always been a favorite of hers. We thank you all for the amazing love and support you have given our family through the crisis and wish you a wonderful time leading up to Christmas.
Tuesday, November 28, 2006
Damm Headaches
Well, things went better with Kathy today. We got her medication organized so she could keep ahead of daily events. It seems to be working. When she is sitting or lying down the headaches have been manageable. But as soon as she gets up or moves an extremely strong pain grabs her. It seems as long as she holds a position she is OK?
We are in the process of deciding what to do with her shunt. As described above the shunt is not working as expected. She shows all signs of low pressure-headaches and nausea. But is it? It could be the difference in atmospheric pressure between her head and her drain in the stomach? The shunt may be malfunctioning? Is the valve type and design making a difference? Why me?
We went over the options today and Kathy is thinking she might wait out the surgery until she gets more information. What kind of shunt does she now have? What kind of shunt is Dr. Kureshi going to implant? How much, if any improvement is it going to make? Can her brain get “pressurized” at its current state and she starts feeling better? How does she minimize the complications? All good questions! We hope to get the answers before Kathy makes the next step.
Tomorrow Kathy has appointments with her infectious disease doctor and foot doctor. Her appointment with the infectious disease doctor is a final out patient visit to go over and get his suggestions to keep Kathy safe. Her foot doctor should remove and replace her casts with smaller ones. She can’t wait.
Hopefully everything will go great tomorrow and build up her confidence and strength. As each day goes by successfully we can build a baseline for her daily condition and be able to monitor it more accurately over time. We just hope Kathy is in the group of people who make up the largest group of shunt recipients, happy customers. Keep up your prayers please; we got a lot of time on this movie before it’s over!
We are in the process of deciding what to do with her shunt. As described above the shunt is not working as expected. She shows all signs of low pressure-headaches and nausea. But is it? It could be the difference in atmospheric pressure between her head and her drain in the stomach? The shunt may be malfunctioning? Is the valve type and design making a difference? Why me?
We went over the options today and Kathy is thinking she might wait out the surgery until she gets more information. What kind of shunt does she now have? What kind of shunt is Dr. Kureshi going to implant? How much, if any improvement is it going to make? Can her brain get “pressurized” at its current state and she starts feeling better? How does she minimize the complications? All good questions! We hope to get the answers before Kathy makes the next step.
Tomorrow Kathy has appointments with her infectious disease doctor and foot doctor. Her appointment with the infectious disease doctor is a final out patient visit to go over and get his suggestions to keep Kathy safe. Her foot doctor should remove and replace her casts with smaller ones. She can’t wait.
Hopefully everything will go great tomorrow and build up her confidence and strength. As each day goes by successfully we can build a baseline for her daily condition and be able to monitor it more accurately over time. We just hope Kathy is in the group of people who make up the largest group of shunt recipients, happy customers. Keep up your prayers please; we got a lot of time on this movie before it’s over!
Wednesday, November 22, 2006
A Thanksgiving Prayer
It has been a rough patch of road for Kathy. Since last week her headaches have increased and gotten stronger. In fact it got so bad last Saturday we had to rush her off to Sharp Emergency in San Diego. The doctors viewed her CT scans and stabilized her most extreme aches and pains. Everything pointed to her earlier diagnosis, overdraining. After 6 hours in emergency, she was ready to come home and hope for a better Sunday. Monday, Tuesday and Wednesday were like an up and down elevator, headaches, nausea and earaches came and went without warning. What's going on with this picture?
With a future of daily headaches, Kathy has decided the following. If she doesn't show marked improvement over the the weekend, we will move forward and have her valve replacement surgery as soon as possible. What will this entail? Dr. Kureshi will go in and reopen the incision in Kathy's head and replace the current valve with a new valve. The new valve will allow for less drainage, allowing Kathy's brain to regain its normal fluid and pressure level. Her many symtoms should go away, including deliberating headaches. Let's cross our fingers!
Even with mini-disasters daily we are so grateful for just having Kathy at home. Her parents have spent the last two weeks with us and have supported her and the family greatly. She is such a strong trooper and fights daily with little complaint.
Thanksgiving is a time to thank everyone for the love, support and prayers for Kathy's recovery. It is impossible to comprehend how important all of you have been to our family! A Thanksgiving poem for you:
Autumn leaves are falling, pretty colors everywhere.
With a future of daily headaches, Kathy has decided the following. If she doesn't show marked improvement over the the weekend, we will move forward and have her valve replacement surgery as soon as possible. What will this entail? Dr. Kureshi will go in and reopen the incision in Kathy's head and replace the current valve with a new valve. The new valve will allow for less drainage, allowing Kathy's brain to regain its normal fluid and pressure level. Her many symtoms should go away, including deliberating headaches. Let's cross our fingers!
Even with mini-disasters daily we are so grateful for just having Kathy at home. Her parents have spent the last two weeks with us and have supported her and the family greatly. She is such a strong trooper and fights daily with little complaint.
Thanksgiving is a time to thank everyone for the love, support and prayers for Kathy's recovery. It is impossible to comprehend how important all of you have been to our family! A Thanksgiving poem for you:
Autumn leaves are falling, pretty colors everywhere.
Thanksgiving day is almost here, another day that we may share.
The things we take for granted are blessings from above.
The things we take for granted are blessings from above.
The needs He has provided, were given to us in love.
Let's give thanks for what we have, bow our heads and together pray.
Let's give thanks for what we have, bow our heads and together pray.
As we join our friends and family, on this Thanksgiving Day.
Friday, November 17, 2006
Low Pressure Alert
Well, how did Kathy’s neurology check-up go? We left early on Wednesday to Mercy Hospital for her CT scan. It was a good experience, quick and easy. The hard part was waiting around for 5 hours until she could meet with Dr. Kureshi. We filed out the appropriate paperwork and finally got into see her neurosurgeon. Immediately Dr. Kureshi diagnosed her CT scan. He felt it was possibly a case of the shunt over-draining. Her symptoms were consistent with low pressure in the ventricles. This was a very disappointing diagnosis.
What’s next? He suggested Kathy take it easy so as to allow her brain to adjust to the low pressure. Her shunt has a fixed valve and cannot be adjusted without surgery. He suggested she try to adjust to her headaches and other symptoms for as long possible (4-6 weeks). He explained the brain is a amazing organ and can adjust to thousands of variables. If things still did not improve, Kathy will hav to have surgery to replace the valve inside of the shunt. What a major pain in the backside!
Overall Doctor Kureshi was impressed just to see Kathy. He told her on numerous occasions he thought death was at her doorstep and a goner for shure. But thanks to the love, prayers and support from all of you Kathy is alive and fighting back.
I have not posted until I could give more news about Kathy’s adjustments this week. She started out as the perfect patient coming home from Sharp. Energetic and excited about every thing! (No more hospitals!) Lately the strain of the headaches and the symptoms of low pressure are taking their toll. It is distressing because Kathy started off so strong and seems so much weaker today. I hope it is just the old two steps forward and one step backward routine that has been the story of her recovery.
Bottom line Kathy is having difficulty adjusting to her shunts over-drainage. Low pressure has it’s dregs as does high pressure. We need to find a way to make her more comfortable during this adjustment process and find the right combination of pressure. If not, it going to be a tough six weeks! Please keep us in your prayers and thoughts!
What’s next? He suggested Kathy take it easy so as to allow her brain to adjust to the low pressure. Her shunt has a fixed valve and cannot be adjusted without surgery. He suggested she try to adjust to her headaches and other symptoms for as long possible (4-6 weeks). He explained the brain is a amazing organ and can adjust to thousands of variables. If things still did not improve, Kathy will hav to have surgery to replace the valve inside of the shunt. What a major pain in the backside!
Overall Doctor Kureshi was impressed just to see Kathy. He told her on numerous occasions he thought death was at her doorstep and a goner for shure. But thanks to the love, prayers and support from all of you Kathy is alive and fighting back.
I have not posted until I could give more news about Kathy’s adjustments this week. She started out as the perfect patient coming home from Sharp. Energetic and excited about every thing! (No more hospitals!) Lately the strain of the headaches and the symptoms of low pressure are taking their toll. It is distressing because Kathy started off so strong and seems so much weaker today. I hope it is just the old two steps forward and one step backward routine that has been the story of her recovery.
Bottom line Kathy is having difficulty adjusting to her shunts over-drainage. Low pressure has it’s dregs as does high pressure. We need to find a way to make her more comfortable during this adjustment process and find the right combination of pressure. If not, it going to be a tough six weeks! Please keep us in your prayers and thoughts!
Sunday, November 12, 2006
Eating Gilbert Grape
Kathy is having her headaches on and off this week. (Mostly later in the day or when she is laying down) We finally got the CT scan appointment with Dr. Kureshi for Wednesday at 8:30 A.M. Hopefully he will have an answer to her headaches.
Kathy continues to eat well and enjoy herself at home. She’s really eating like never before! She has breakfast everyday of toast, oatmeal, eggs and fruit. At lunch she has soup, a sandwich and fruit snacks. At dinner she has everything and anything. She is really enjoying eating for the first time in her life. Over the last five years, Kathy’s medicine has always affected her desire to eat. (Nausea-pain) I wondered how she lived on breadsticks and water for so long!
Kathy started therapy in Fallbrook this week. First was Occupational therapy. Her therapist decided Kathy does not need further assistance in adjusting to home life. She suggested Kathy needs more speech therapy. Speech therapy focuses on the cognitive aspects of her mental training. She suggested Kathy focus more on reading and mental development games. This should improve her self-confidence in moving forward from her injury.
I will post the blog Wednesday with Dr. Kureshi’s report. We both feel it has something to do with her shunt valve. Hopefully he can do some adjustments to the device to reduce her side affects and headaches. Get back to you….soon
Kathy continues to eat well and enjoy herself at home. She’s really eating like never before! She has breakfast everyday of toast, oatmeal, eggs and fruit. At lunch she has soup, a sandwich and fruit snacks. At dinner she has everything and anything. She is really enjoying eating for the first time in her life. Over the last five years, Kathy’s medicine has always affected her desire to eat. (Nausea-pain) I wondered how she lived on breadsticks and water for so long!
Kathy started therapy in Fallbrook this week. First was Occupational therapy. Her therapist decided Kathy does not need further assistance in adjusting to home life. She suggested Kathy needs more speech therapy. Speech therapy focuses on the cognitive aspects of her mental training. She suggested Kathy focus more on reading and mental development games. This should improve her self-confidence in moving forward from her injury.
I will post the blog Wednesday with Dr. Kureshi’s report. We both feel it has something to do with her shunt valve. Hopefully he can do some adjustments to the device to reduce her side affects and headaches. Get back to you….soon
Thursday, November 09, 2006
It's a Wonderful Week-Opps!
It’s been great to have Kathy home for almost a week now. She has really enjoyed every small detail of home life. We both thought it would be more difficult to integrate back into home life. Kathy has done extremely well on every count. She does her own upkeep with little assistance, looks forward to and enjoys three meals a day and of course has stayed religious to her physical therapy. She of course is unhappy with her ungainly boots and shoes but for another 6 weeks, she has little choice.
Physiologically her only hesitation is her self confidence and the constant fear of what the future will bring. I’m sure all patients who have gone over the falls like Kathy must feel this way. I keep telling her daily everything takes time and the pieces of the puzzle will to come together faster than you think. Relax your doing great!
Yesterday Kathy came down with a strong headache which lasted through today and so we called Dr. Kureshi this afternoon. After reaching him, he has decided to have her take another CT scan to make sure everything is ok. This evening Kathy feels slightly better with over-the-counter headache medication. I will keep you posted about the results tomorrow! Again, thanks for all the wonderful prayers and thoughts for Kathy’s recovery. She can’t remark enough on how much support and love got her through!
Physiologically her only hesitation is her self confidence and the constant fear of what the future will bring. I’m sure all patients who have gone over the falls like Kathy must feel this way. I keep telling her daily everything takes time and the pieces of the puzzle will to come together faster than you think. Relax your doing great!
Yesterday Kathy came down with a strong headache which lasted through today and so we called Dr. Kureshi this afternoon. After reaching him, he has decided to have her take another CT scan to make sure everything is ok. This evening Kathy feels slightly better with over-the-counter headache medication. I will keep you posted about the results tomorrow! Again, thanks for all the wonderful prayers and thoughts for Kathy’s recovery. She can’t remark enough on how much support and love got her through!
Sunday, October 29, 2006
Standing by the Dock of the Bay
Sunday, seven of us meet Kathy at Sharps Hospital. Kathy was officially checked out for the afternoon. We got her in the car and headed to downtown San Diego. Kathy wanted to visit the Fish Market to have her favorite, red snapper. She commented it would be great, especially without being cut into a thousand pieces like the hospital. We easily navigated to the harbor and parked. We wheeled Kathy into the restaurant and were seated with a perfect view of San Diego bay and the aircraft carriers. It was perfect San Diego weather, 75 degrees and clear. Kathy loved it. We continued to have long lunch until Kathy tired. We headed back to the hospital around 4:00PM and she was ready to lie down. Overall it was a great adventure after three months inside the confines of a hospital. I told Kathy next weekend not to expect such royal treatment. She looked worried. I continued and told her she would be home to make her decisions. She nodded in agreement.
Mexico -Way down here you need a reason to move
I have put off my trip to Mexico for as long as possible. Kathy is doing great with Sharp’s round the clock care and physical therapy. It seems like a good time to get our loose ends finished before she comes home and needs some real assistance. I will be gone Monday morning till Thursday night. If anyone can visit with Kathy it would be helpful. With Kathy being more or less normal now, she gets awfully bored with the long days in the hospital. She especially finds the afternoons and dinnertimes especially long. So, if you have the time Kathy needs the support. We thank all of you for the prayers and well wishes.
Cheesebugers in Paradise
Every day Kathy is progressing remarkably well. On my visit yesterday Kathy was being tested on every meal for consumption. She needs to eat at least 75% of each meal 3 times per day to get off her tube feeding. She needs to do this at least 3 days in a row. We ended up having a little confusion yesterday because we had planned dinner around a special cheeseburger from In-N-Out Burger. I brought in the burgers and shakes and noticed she was just starring down at this big dinner. We worked together and everything got done. (You know what I mean) She passed and got to go last night, for the first time, without the tube.
Today is a special event day-her recreational therapist is allowing her to leave the hospital for 4 hours. The family is going to pick her up and take her to the San Diego Bay. If she feels good enough, we are going to attempt to take her to the Fish Market Restaurant to get some of her favorites. Could you have ever imagined last Saturday, after double Achilles surgery, we would be going out on the town today?
Kathy will go to her therapy conference Tuesday and probably be issued a release date. I anticipate the date to be at the end of this week or no later than one week more. It’s pretty exciting times-Kathy is at the point where everything’s going her way!
Today is a special event day-her recreational therapist is allowing her to leave the hospital for 4 hours. The family is going to pick her up and take her to the San Diego Bay. If she feels good enough, we are going to attempt to take her to the Fish Market Restaurant to get some of her favorites. Could you have ever imagined last Saturday, after double Achilles surgery, we would be going out on the town today?
Kathy will go to her therapy conference Tuesday and probably be issued a release date. I anticipate the date to be at the end of this week or no later than one week more. It’s pretty exciting times-Kathy is at the point where everything’s going her way!
Thursday, October 26, 2006
The Salt Mine
Kathy's enjoying her first supper tonight with Alyssa. Not really, she thought the food was very salty. Alyssa was'nt. If you want to bring outside food, it should not be spicy or salty. She cannot have any veggies like salads. Her menu does have many surprising options!
Everything needs to be in small amounts because Kathy is building up her capacity. Maybe call her at 858-939-4729 to converse these gastronomic issues directly to her.
Soul Food
Kathy scores another great day at Sharp. She took her swallow and eating test today and passed with flying colors. All the nurses and techs were jumping with joy when Kathy returned. She ordered chicken pot pie and pasta for lunch. Dinner she even ordered a Salisbury steak! The doctors will leave the feeding mechanism in her until Kathy shows she can eat the correct amount of daily nutrition. Kathy is so excited to have little things like milk. Her taste buds are very tender from the layoff but it’s just another step in her recovery.
Her daily rehabilitation team has her working hard. Liz today had her walk all around the facility inside and outside. She had her going up and down ramps and even up stairs. Between the 3-4 hours of therapy a day, Kathy is coming along very rapidly. The rumor is on Tuesday, during her patient conference, she will be assigned a discharge date. (I will bet money it's going to be on Friday the 3rd of November!)
Her shunt continues to operate well and she comments every day that things are clearer. She talked for hours with Alyssa tonight but was smart enough not to want to vote her absentee ballot. Except for minor things I would say Kathy’s recovery process is pretty clear.
Her daily rehabilitation team has her working hard. Liz today had her walk all around the facility inside and outside. She had her going up and down ramps and even up stairs. Between the 3-4 hours of therapy a day, Kathy is coming along very rapidly. The rumor is on Tuesday, during her patient conference, she will be assigned a discharge date. (I will bet money it's going to be on Friday the 3rd of November!)
Her shunt continues to operate well and she comments every day that things are clearer. She talked for hours with Alyssa tonight but was smart enough not to want to vote her absentee ballot. Except for minor things I would say Kathy’s recovery process is pretty clear.
Prada Watch Out!
As you can see my boots are in my favorite color. What a difference they make. I guess walking is a lot easier when your not trying to be a ballerina. I'm off and away!
Subscribe to:
Posts (Atom)