Thanks for the Coverage

After a business stop in Nogales, I was able to spend the weekend in Tucson with Kellen and Megan. I went with them to the USC vs. U of A game and got to sit in the student section. The Wildcats held USC to 10 points well into the fourth quarter but lost in the final minutes. Had a great time and I wanted to thank everyone who came to visit Kathy in my absence.

Plodding Along

Sunday and Monday were slow days for Kathy. Her rehabilitation people were concerned about her progress combined with her not feeling well. I went early today, to view if she was improving, especially after her weekend procedure. Her speech therapy was moving slowly but she is moving along with him! Her voice is still weak and she still cannot pass her swallow test. They are trying to get her to pass it in her room so when they take her to the hospital, her success rate should be high. I tried to get the therapist to realize she can talk if you get close up to hear and she needs to focus from her left side on his word association tests.

Occupational therapy and physical therapy both went better today than yesterday. In fact her occupational therapist remarked it was Kathy’s best day since she got to Sharp! She was answering basic questions and handling good all of the duties she was tested on. Physically, they have Kathy strapped into her wheel chair because she inadvertently tries to stand up. I guess this is progress.!! Again, Kathy is rolling along slowly but ever so solidly forward. At times I wonder if she will take 3 weeks or 3 months to get back to some form of normality. We love you and hurry up!!

New Look

It's time for a look change! Don't Panic!

Spinal Tap

Saturday the Doctors inserted a needle into Kathy’s back and removed excess fluid from her spine. They hope this proceedure will make it unnecessary to operate on Kathy and insert a line into Kathy’s skull to drain excess fluid. (More hair removal and insertion of a line similar to the one she had a Scripps!)

The doctors hurriedly did the proceedure on Saturday in hopes of improved physical therapy progress this week. Kathy had a great day on Saturday spending the afternoon outside in the sun and listening to music. I will update you on her physical rehabilitation progress this week! Thanks for the prayers, flowers and cards-Kathy really enjoys them!

Help!

I'm going out of town on Thursday evening and hope someone is able to visit with Kathy on Friday or Saturday. The best times to visit are from 10:00 AM to 3:00 PM, during her rehabilitation and 6:00 PM to 9:00 PM.

In the morning she is more alert and happy. You can accompany her to her rehabilitation classes or wait until her return. From 3:00 until 6:00 she is doing her personal thing, so after 6:00 is a great time to visit. Any help would be appreciated. HINT-If she doesn't talk, put your ear close to her face and she will try to talk back! Good Luck and THANKS!

He's Back!

Today was an interesting day. First I missed Kathy’s doctor’s conference because I thought it was tomorrow. Just a bad job of reading dates! I talked to Kathy’s case manager and she gave me the following recap. Kathy is still a moderate to maximum assist patient. She has to be assisted in all activities from personal care to therapy sessions. Her team is concerned that over the last two weeks, Kathy has not improved as much as they desired. They acknowledged she’s had a few set-backs (they also admitted they are less experienced with rehabilitating brain abscesses) but they want an outside medical opinion to see if a medical problem is slowing her rehabilitation progress.

Guess who shows up this evening, but none other than Dr. Kureshi himself, her neurosurgeon from Scripps? We had a good talk and he has decided to recommend the following to Kathy’s team; Kathy has slightly inflamed ventricles that have shown up on her recent CT scans. He noted this is not un-normal in someone recovering from Ventricilitus and could have built up over the weeks. He feels reducing pressure either by removing excess fluid from her spine or inserting another brain drain could give the ventricles time to shrink and heal. This would lessen the brain pressure and lower inflammation. I am waiting for the two teams to decide on the best route. Not this again!

Officially Dr. Johan, her MD, is preparing her for the necessary steps for future home care. The inside opinion by staff is that, Kathy is still four to six weeks away from going home. Again, I want to thank the staff of the Sharp Hospital Rehabilitation for a wonderful top drawer job they are doing. I just cannot compliment them enough!

Walking Tall

I spent time today with Kathy during her occupational therapy and physical therapy. Due to my schedule, I seem to miss the daily physical therapy sessions. It's been almost ten days! It was extremely painful to watch the first time but today she was moving extremely well compared to her first day. She could stand straight with little assistance, except for balancing. She can move her left leg and foot smoothly when walking as well as everything on the left side. The right is still giving her problems but moves much better after therapy. I feel confident that within weeks she will be walking without assistance.

Dr. Kureshi (Kathy’s neurologist) was planning to stop by Sharp Hospital today to review his star patient. Tomorrow, I hope to hear positive news from the staff about his visit? Kathy still has this unique ability to talk on the phone but NADA in person. Totally frustrating! I was researching ways to communicate with brain injurie patients and came up with theses suggestions.

In some instances, the person with brain injury will be unable to adapt or compensate for her communication weaknesses. Therefore, people in the environment may want to consider what they can do to make the communication easier. Questions people in the environment might ask in order to help a person adapt their behaviors include:

1.) Did this person understand what I said?

2.) Was my rate of presentation slow enough?

3.) Did I give clear, step-by-step directions?

4.) Did I use puns or humors that were not understood?

5.) Can I help the person understand better by using pictures or writing the steps?

6.) Am I distracting this person with too many gestures, too loud a voice and/or too many pauses in my speaking?

7.) Is the environment too loud, congested, bright and/or confusing?

8.) Can I simplify this communication by speaking in shorter, clearer sentences?

9.) Can I provide a more organized explanation of what I expect to be done?

10.) Are there others in this situation that can help?

What Condition your Condition is In

An overall condition check on Kathy from August 31st through today (Her Sharp Hospital Stay)

Brain Swelling: Recovery has been steady. The doctors have ordered recent CT scans and MRI tests. Her progress seems to be acceptable to her neurologist.

Infection and Blood infection: Kathy is on a 24 hour antibiotic intravenously and will be so until the first week of October. All activity appears to be in recession.

Eating and Nutrition: Still receiving 2500 calories a day intravenously but not eating solid foods. For some reason Kathy cannot pass her swallow test? She needs to pass to move on and begin eating normally and resolve her stomach issues.

Right Side: Kathy is getting strong, especially with her upper body. Her shaking is controllable and her overall control is incrementally improving.

Speech: Can converse normally on the phone but with a weak voice. It is very difficult to get Kathy to communicate when directly in her presence. She uses eyes, facial and hand communication instead of voice to communicate. She did muster out two comical sentences to me yesterday! (Still has that sense of humor) Kathy has acknowledged she feels awkward trying to talk face to face. (The phone for some reason is automatic)

Walking: Kathy is improving slowly but still has a long way to go to come home or use a walker. She has good upper body strength but seems challenged with her legs and feet.

Brain/Emotional functions: Seems at times to be 90% or better understanding but other times seems confused when given choices. Still shows some indifference and lack of attention skills as one’s visit stretches out. Emotionally seems to be in a much improved state of mind this week.

Overall: Most of Kathy’s physical aliments seem under control except her ability to eat solid foods. She is still unable to function normally walking or talking. This could be the direct result of the abscess damage to the brain. I feel she's going to be OK with continued intensive rehabilitation. We are encouraged. Thanks for your prayers and thoughts!!!

Speak no Evil

Kathy is involved in a long process of rehabilitation. I am not updating the site as much because Kathy’s condition is stable and her progress during rehabilitating is more incremental. Medically, Kathy is doing well with no new flare ups and all her vital signs positive.

Today Kathy looks great with her wavy blonde hair flowing over the pillows. She is taking on the phone and seems very communicative and lucid with each caller. JUST AMAZING! For some reason Kathy is not comfortable in front of people taking yet? (I will have to talk with her doctors on this one-again) On the phone she is doing amazing. Her answers are structured and complex with good tone. (Almost normal) Her voice level is low but she can speak up when needed.

Her physical therapy is progressing OK. She admits it is very difficult and this is her biggest roadblock in getting out of the rehabilitation. She is working with her therapist twice a day and improving. I hope that next week she will be able to start moving around in a walker.

Feelings

The small things went well this weekend. Kathy had a good mix of friends and family visiting and ramped up her emotions accordingly. She did better at smiling, winking, hand motions and being aware of her visitors. A few hours in the sun, you could see Kathy enjoying every moment. You can really see her communication feedback revolves around her emotional feelings at the time of contact.

On Monday morning the doctors moved her feeding tube from her nose to her stomach. Kathy looks beautiful as ever, without that damm tube in her nose. She was drowsy this afternoon and her rehabilitation people let her rest. She’s rearing to go tomorrow!

At times, it’s frustrating visiting Kathy because she shows such little interest in her visitors. I have asked the doctors why she acts this way and they suggested some reading material to help me out.

“What the Patient May Be Feeling”

“Perhaps the most disturbing to survivors who have sustained a brain injury is the loss of identity. Many of us take for granted the things with which we identify ourselves; our job, our relationships and roles. Imagine all of a sudden not being able to go to work, drive a car, cook a meal, play a game, help your children, go for a walk or even hug your family. Not only that, but you require assistance from others for even the most basic skills. Brain-injury survivors must come to terms with the new limitations, new roles, new sense of who they are, and where the fit it. The person she knew before the injury has been replaced by someone who is, in essence, a stranger. This can be more difficult to deal with than the physical limitations.

Many times, an individual who has suffered a brain injury will experience feelings that others would consider natural, such as frustration, disappointment and depression. However, injured individuals may also experience feelings that come as a surprise to family members and loved ones. Without the ability to care for herself, the patient may begin to feel useless and helpless. Having to rely on someone else to take care of one’s basic needs can make the patient feel like a burden, no matter how good the caregiver is at assuring the patient she isn’t.

One of the issues that brain-injury survivors frequently encounter is that they do not appear physically disabled. In fact, their disability may be solely cognitive in nature. Without the physical reminders, others may not be aware of the patient’s limitations and can act intolerant, causing the patient further embarrassment and frustration.

The patient may or may not express these feelings. Putting yourself in her shoes, and putting inside aside your own issues and wants, will help you really understand what the patients needs.”

Let the Sunshine In

Friday we had a good day with Kathy. Alecia came down with me to visit and I picked up Kellen at the airport. For Kathy, this seemed a good combination and she reacted much more with her voice, actions and expressions. It became clear as the other kids showed up that Kathy’s lack of speech and emotion revolves around her emotional state at the time. Being the fourth major surgery with difficult recovery, Kathy is probably mentally distraught about her condition and what lays ahead. She feels badly about herself, her recovery is long and arduous and she is unsure of her health.

I talked to her doctor and her MRI came out neutral/positive. This means that there could be some swelling but the neurologist needs to compare the last MRI to the current. If this is a problem, they will transfer her back to Scripps for more tests. Is this crazy? Well, I hope it isn’t a problem.

We had an interesting time with Kathy and her physical rehabilitation team. Kathy had to walk three times. She was totally unable to walk without full assistance. It was quite painful to watch her being helped just to move one foot forward and then the other. She did pull herself up on the parallel bars and stand up on her own. She did other exercises and her team is so supportive and professional. I salute them.

Her physical side looks to be a long way off. I can see now why she is scheduled to be in the facility for 5 weeks or more. The highlight of the day was being able to spend a half and hour outside with Kathy. This was the first time she has spent time in the sun and open skies in 30 days. She had a blast.

Everyone's Opinion in 15 minutes

Today was the first big conference with her staff. They had a whole time allotment of 15 minutes for discuss Kathy's condition. (I guess they have a lot of patients) Just doesn't seem right? I left the notes at work so these are from memory:

1.) First her medical doctor commented that she was progressing acceptably with all of her antibiotics and tube feeding. He was concerned about her speech progress and lack of communication. He wanted to address every level so medically he ordered a MRI taken this afternoon. He also decided, to reduce her pain medication so that was not a factor in her being less alert and talkative.
2.) Her physical therapists and Nursing reported that Kathy was able to perform only 20% of normal day to day activities and needed assistance 24/7.
3.) The speech therapist commented Kathy did not pass her swallow test Tuesday and he wanted to have the gastrologist move her tube from her nose to her side and enter directly into the stomach. This was safer and more humane he felt. In addition this would be better for Kathy because she no longer would have to be feed through her nose which numbs some of her senses. He is concerned of the lack of daily interface and speaking.
4.) Her psychologist has not started his evaluation but will do so today. He will review her physical damage to see how it relates to the way she is acting today.

The room contained over (9) doctors, nurses and therapists assigned to Kathy to address the different levels of medical care. They all admitted they had not had sufficient time to evaluate Kathy due her late arrival last week and the holidays. The staff was surprised to hear that she communicated so well over the phone and had no expert explanation for me. They commented this week Kathy should get more out of her 3 to 4 hour a day of physical, breathing, speech and occupational therapy. I was a little stunned when later, I talked to her case manager, who has been in the business for 25 years, and her evaluation of Kathy has her spending much more time in rehabilitation than 5 weeks! I don’t know if Kathy or I can take it that long.

It’s nice to report that everyone at Sharp is extremely professional and most important, pleasant to deal with. The pace of the unit is much slower and peaceful than at Mercy. Overall, at this moment, I am very happy that Kathy is at the Sharp Hospital facility.

Pedal to the Metal

Everyone is back from the holiday and the Sharp parking lot is full. I was able to spend some time this afternoon with Kathy during physical rehabilitation, which was pretty interesting. She is starting to be tested on her coordination and strength She has a long way to go but she is trying hard.

I found out she failed the swallow test this morning, so she is going to have to wait to have the tube removed. The feeding tube doesn’t come out for 3 days after you are cleared so it looks like another 5 to 6 days at least. FUSTRATING! If Kathy can get going physically, everything is going to come together, especially when she builds up enough strength to get in and out of bed.

She is stangely playing “mute" and it is almost impossible to get her to talk to you when you are in the room. If you have a moment and want to talk to Kathy, you are going to be more successful attempting to call the room and hope the nurse picks up the phone and hands it to Kathy. Weirdly enough she can stay engaged for some time on the phone. I asked the nurse why? Both said that they had patients in the past like Kathy and they turned out fine. They could not give me a medical answer but made me at least feel better.

Kathy’s daily rehabilitation schedule goes like this:

7:30-8:00 Respiratory therapy
9:00-9:30 Occupational therapy
11:15-12:15 Physical therapy
3:15-3:45 Speech therapy

They seem to run a loose ship, so times may not be exact. So if you are trying to visit or call, she could be anywhere. The best time to visit, based on my experience is around noon until 3:00 PM because Kathy is the most alert. Again, thanks for your prayers and support.

Laboring to Understand

Kathy’s in the hospital on Labor Day, a kind of special weekend for our family because we have two major birthdays (Plus her Fathers) during this holiday. Alyssa turned 17 and Trevor turned 26. Kathy always found this time to be so busy with kids going back to school and the two big birthdays. (Kathy loved to go out and buy the kids to many gifts) She wanted to be such a big part of Alyssa’s senior year because this would be our last child in high school.

Well, we had a wonderful birthday party with Kathy in her room on Sunday. I, Alyssa, Trevor and Jennifer spent the afternoon opening presents in front of Kathy. We had a "no candle" light birthday cake for Trevor because Sunday was his special day. The nurse looked the other way so we could give Kathy some cake and milk. (Not allowed on her chart) The weekend was busy with Alyssa having a big party at our house on Friday, enjoying her main gift, taking 12 friends to the Padres game on Saturday, meeting up with family for Sunday brunch and enjoying a surprise dinner for Trevor at Dave and Busters in San Diego Sunday evening.

Kathy’s overall condition: She is still medically restricted because of her feeding tubes and antibiotic tubes. Her pneumonia is still present but in recession. We hope by the middle of the week, Kathy will get off tube and be allowed to eat. She will be fitted with a portable IV tube for her rehabilitation classes. Overall Kathy looks good and you can tell she is getting a little stronger. She sits in a wickedly cool wheel chair (I want one) during the day and starting next week will start into her full rehabilitation schedule.

Mentally Kathy seems running in the sand. She has her moments during the day but most of the day she is either staring straight ahead or sleeping. For me, this is very frustrating because I want her to get mentally better like her physical side. She can communicate with you through her hands and eye movements but that’s about it. Her voice is still very weak and I have not heard more than a few words out of her mouth. She has been on the mend for about a week now but she has not made any big breakthroughs. When it comes to taking (or using her right side), reasoning, problem solving Kathy has a long way to go to do simple interfacing. I thought it was quite a stretch when people told me that Kathy looked like she was a candidate to spend 5 weeks in rehabilitation. Now I concur with their assessment and only hope that the program staff can get her mind moving quickly. I have a meeting with her team of doctors on Wednesday to review where Kathy is today, what her program will be, what to expect and how long it will take. Maybe I’ll feel better on Wednesday? Off to the Sharp Rehabilitation BBQ ............

Look at Me Now Mom!

Now going into 4 weeks of recovery, some of us who visit weekly have forgotten how good Kathy looked. I thought this would be a refresher picture not only how she looked but the way she she's going to look when we get her out of rehabilitation.

(The picture was taken at the National Park in Uruapan, Michochan Mexico during Alyssa's spring school break in April 2006)

Wake Up Little Sunshine

It was Kathy's first complete day at Sharp. Everyone seems eager to get to know Kathy and details about her condition. Her doctor on the floor is Dr. John Jahan. His specialty is rehabilitation therapy and is the chief doctor. I reviewed the schedule and Kathy has a well designed and structured program, especially Mondays through Fridays. She starts with occupational therapy in the morning, speech therapy around noon and in the early afternoon, physical therapy. Today she got around 1.5 hours of work which will grow to 3 hours by Monday.

Kathy is still being fed through a nose tube that empties into her upper intestine. She just seems unable to handle the speed of water when she swallows. Next Tuesday they plan to administer a barium upper GI to check for problems. On Wednesday or Thursday of next week I will attend a conference with the various doctors to review Kathy's current condition. Questions like what is going to be done, her schedule and how much time to expect Kathy to take for recovery will be discussed.

Sharp Hospital conducts (3) events a week for family's education. This covers areas of interest such as relationships, communications, how the brain works, mobility, family caregiver advice and community resources. They handed out, an interesting book called "The Journey Toward Recovery. I will enclose a quote:

"Brain injury strikes 1.5 million people per year. That's one injury every 20 seconds. Approximately 500,000 of those injuries hospitalizinglization and close to 75,000 result in death. Between 70,000 and 90,000 survivors sustain injuries that are long term or permanent. There are currently 5 million Americans living with disabilities resulting from brain injury. Although these figures are discouraging, they may help caregivers and friends realize that they are not alone."