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!
Tuesday, November 28, 2006
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!
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