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.

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.

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.

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!

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

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.