Tuesday, August 29, 2006

 

It has been a week of numerous doctor appointments. Nick seems to be caught in a vicious cycle

where he uses a body wash to prevent the reoccurrence of the staph infection but then it increases

his eczema which makes him more susceptible to staph infection. Other than that, he has had a

good week. He continues to ride the stationary bike most days and now walks with a walker that

does not have a seperate support for his left forearm, he holds on with boths hands. He also uses

the parallel bars, again using his left hand instead of a forearm support. We are trying to get the

walking in everyday but with doctor appointments, bio feed back sessions, standing frame and

riding the bike, there just isn't enough time in the day to always get it all done. It takes him

awhile to get showered and dressed in the morning then eat breakfast. Nick worked so hard all

week that by Friday he fell asleep around 5 PM and we couldn't get him awake all evening. 

Nick has a doctor appointment this afternoon for a Botox treatment. He is very tight, which is

very painful for him, probably due to the last Botox injections wearing off. They can only be

done every 3 months. Nick wants to get his knee worked on so we will be asking for a referal to

the orthapedic suergon to determine the best way to go about it. The knee is now holding back

his progress toward walking. 

One exciting bit of news to report;, Nick's friend and mentor Lynne is making great progress at

Barrow Neuro Rehab. When he visited her recently she was talking to him and was very alert

and smiling. Although they are both in wheelchairs, they were able to give each other a hug

before leaving. Strangely, she was assigned to the same room Nick had when he was there!

 

Tuesday, August 22, 2006

 

Nick had a rash around his most recent incisions that we feared was a staph infection. He saw a

dermatologist yesterday and he didn't think it was staph, he will see an infectious disease

specialist on Friday to be sure. He continues to work very hard; riding the stationary bike, using

the walkers and standing frame. 

Even though Nick has a long way to go to achieve his goal of walking and leading a "normal"

life he has made a lot of progress. To put it into perspective, a year ago he had to go in the

hospital to have a feeding tube reinserted because he couldn't swallow without aspirating. He

needed assistance to get in and out of his wheelchair everywhere he went. He now eats regular

food using utensils, even using his left hand when cutting food. He transfers himself in and out

of his wheelchair without any assistance, including onto the standing frame and bike. When he

needs to use the restroom while out in public, as long as it has a handrail he does not need any

help anymore. He gets a little testy when he has to wait for the stall and someone comes out who

is not handicapped. He showers himself, dresses, brushes his teeth and shaves without much

assistance. 

He does all this with very little use of the left side of his body.

 

Sunday, August 13, 2006

 

This has been a very exciting week. Nick seems on the threshold of a big break through,

hopefully this time nothing will come up to stop his progress as has been the case so many times

in the past. 

While still awkward and limited, he is gaining more control of his left hand. He uses it to hold

himself up in situations where he is using handrails and holding a fork while cutting food with a

knife with his right hand. We now "bump" and do "thumbs up" with the left hand. His walking

with the use of aids is getting better all the time, his gate is becomming more like a normal step.

He has began using the stationary bike and rides it for 20 minuites at a time with his left foot on

the pedal. Friday he showed us something he had been working on, he was standing up next to

the hand rail in the bathroom without holding on doing knee bends. I do not want to sound like

Nick is ready to go out and play basketball, he still has a long way to go, but he is doing much

better and is very modivated. The timing of this improvement with the removal of the pump is

interesting to say the least.

The experience he had with the power wheelchair on vacation led us to renting one while

insurance decides what they will do for him. We were told it could take 2 to 6 months for them

to decide. It is so much more comfortable for him. 

Nick is again looking into going back to school. He plans to get into a graphic design program,

probably throught ASU. One of the major problems with him attending class was how

uncomfotrble his wheelchair was. With the power chair he can sit in it longer which may make it

more possible.

 

Monday, August 7, 2006

 

Nick has made a lot of progress this week. His spasms have relaxed a lot now that the infection is

gone and the pump is out. He is on additional medication to be sure that the he is OK without the

pump but they make him very drowsy. We were actually able to travel to Nick's cousin John and

Laura's wedding in Redmond, WA. Nick did well flying and to make things easier for all we

rented a power wheel chair for him to use. It was much more comfortable than his manual chair

and he really enjoyed the extra independence it gave him. We are waiting for insurance to

determine if they will pay for part of a power chair, if not we will get one anyway, he was so

much more comfortable in it. Problem is we also will need to get a vehicle with a lift to transport

it, it weighs 300 pounds.

He met with a new doctor last week who has expertise in pain management of people with

dystonia and spasms, this is a rare combination for a doctor to have as we have found out. He

was appalled at the amount of medication Nick is on. We are now backing off on some of them

but it has to be done slowly and be monitored closely. He also had a x-ray taken of Nick's left

wrist to determine if there is some physical problem that is causing some of the pain and not just

nerve pain from the tightness. He said that it just didn't feel right to him. In a year and a half no

doctor has even suggested this. He has an appointment on Aug. 14 to go over the x-ray and put a

plan together to further reduce the meds. 

He had an appointment with the infectious disease doctor today and he said that Nick's infections

that he got during his last hospital stay which resulted in the removal of the pump, are cleared up

now.

 

Monday, July 24, 2006

 

Nick's symptoms got much worse on Friday night. He was sweating profusely, broke out in a

rash and was tighter than ever in his left arm. The infectious disease doctor determined that he

was having an adverse reaction to the oral antibiotics and he told us to stop giving all of them.

He is feeling so much better. today. His last set of labs came back good so we are hopeful he is

on the way to recovery. 

It has been really hot (118) here. Nick felt well enough by yesterday afternoon to spend a little

time floating in the pool. He actually gets quite a lot of relief from his cramping when he is in the

pool.

We have good news to report. Nick's sister Krista got engaged to her long time boyfriend Matt.

We are very happy for them and will look forward to their wedding in March.

 

Friday, July 21, 2006

 

It's been a long hard week. Nicks IV antibiotic's had to be administered every 12 hours. They ran

for about two hours morning and night and then the tubes had to be flushed. The pick line was

taken out yesterday and now he is on oral antibiotics. His labs have indicated he has a very

resistant strain of staph infection. Nick has been having a terrible time trying to sleep. The

cramping in his left arm is relentless and more painful than ever. The new antibiotic he started

taking today is making him sweat and shake. I seems like if it's not one thing it's another. 

Nick is hopeful he will feel well enough to attend his cousin John and Laura's wedding next

week. He just needs some relief from all the cramping. Home therapies have started again and

hopefully with more movement and stretching it will improve. 

 

Friday, July 14th, 2006

 

Nick's birthday wish came true and he was discharged around noon on Thursday, July 13th, his

23rd birthday. He didn't have much of a celebration but felt grateful to have a steak dinner and be

at home in his own bed. He will continue on IV antibiotics from home for the next 8 days and

then on oral antibiotics. 

When we left the hospital we were told a home health nurse would come twice a day and help us

administer his IV meds. At about 9:30 last night the nurse came in, brought all the supplies, ran

through it with us and said someone would call in a few days! After being at the hospital for the

past 11 days, and feeling completely exhausted, this was just too overwhelming. We called the

supervisor this morning and they agreed to send someone out again this morning to make sure

we were doing things correctly. I guess we are on our own for tonight. 

Unfortunately, since Nick was still in the hospital on Thursday morning he was not able to attend

the presentation of the Liberty Mutual Hero Award given to Scott Brady for saving Nick's life.

Nick's dad and sister attended and want Scott and his family to know how grateful we are that he

took the time to stop and get involved. He is our hero! 

 

Tuesday, July 11, 2006

 

Nick is now in the new part of the hospital, he spent just one night in ICU. The room is spacious

and there is a hide-a-bed couch which is much more comfortable when spending the night. 

More complications have occured. He has developed a hematoma in the area that the pump was

removed and yet another infection has set in. The fluid will be drained and examined later today,

then if necessary, it will be opened up and cleaned out. Another surgery! He will be in the

hospital for at least a few more days. He really wants to get out of there and go home, but it is

necesary to keep him until the infections are fully understood and under control.

 

Saturday, July 8, 2006

 

11:00pm

Nick spent last night in ICU after his surgery. The doctors felt he did well but are monitoring

him closely because he will not only be recovering from surgery but also going through

withdrawal from the baclofen, which they feel could be severe. So far he is heavily sedated with

valium and morphine so we can't see much difference, as far as the spasms are concerned. He

just had a pica line inserted tonight. The IV antibiotics that he has to take are so strong that his

smaller veins just can't withstand it. Although he is in some pain, especially at the surgical sites

on his abdomen and back, he is feeling quite a bit better today His white blood cell count has

dropped from 35,000 to 12,500 in the past few days so the antibiotics appear to be working. Now

our prayer is that the antibiotics themselves don't cause any lasting negative side effects.

We are looking forward to tomorrow. Nick's floor will be the first to be moved to the brand new

Barrow Neuroscience Tower. The rooms are suppose to be spacious and much more family

friendly.

 

.Friday, July 7, 2006

Nick's surgery to remove the pump and catheter is scheduled for some time after noon today. It's

hard to believe, a year ago today, Nick was discharged from Barrow Rehab Hospital to come

home. He has made some great progress over the past year but continues to have trouble with the

spasms on his left side. We're wearing our orange wristbands today. If you can find yours, please

wear it and join us in keeping a prayer vigil for Nick's safe return home once again. He was

feeling much better yesterday after several days on IV antibiotics and wanted us to thank you all

for your prayers and support.

 

Wednesday, July 5, 2006

 

10:00 PM

The tests came back this afternoon positive for a bacterial infection in Nick's spinal fluid and a

staff infection in his blood. Both were a result of his surgery last Friday. He is scheduled for

surgery this Friday to remove the pump, tubes and catheter. There are no options to removing the

pump and tubes because they can not be cleaned of the infection. The doctors said that he will

have to remain in the hospital for two weeks while they treat the withdrawl symptoms that are

expected from the stoppage of the baclofen flow into his system and the infections. 

Wednesday, July 5, 2006

 

Nick is still in the hospital, he slept well last night. He got his own room around 4 PM. The

cultures of the spinal fluid are checked daily but it takes 48 to 72 hours to determine if there is

any infection and 5 days to complete the tests. He will stay in the hospital unitl this is resolved. If

there is an infection in the spinal fluid, the pump, chatheter, and everthing will have to be

removed. 

 

Tuesday, July 4, 2006

 

9:30 AM

The doctors came in and woke Nick up for evaluations. We were informed that he will need to

stay at the hospital at least until tomorrow while they attempt to find the source of his infection

and treat it.

 

8:30 AM

Nick spent the night in the hospital again. Actually he spent night in a holding area in the

emergency department because there weren't any rooms available. When he went to see his

doctor to get the pump revised yesterday she recommended that he go to emergency for tests of

his spinal fluid for infection because he became very sick, vomiting, shakes, high fever, and

headaches

After sitting around in the waiting area for several hours, all the time getting sick and very

uncomfortable he was finally taken in for testing. His spinal fluid test came back negative, so far,

but his white blood count was 35,000, which is extremely high verifying an infection

somewhere. The doctors have not been able to determine the source of the infection and he is

being treated with a "super dose" of antibiotics and morphine for pain.

Because of the surgery on his back it is very difficult for him to get comfortable, especially in the

holding area beds. He finally got a regular hospital bed with an air mattress on top for additional

cushioning. He got to sleep around 3:00AM and as of now, 8:30 AM he is sleeping soundly. We

are waiting for the doctors to determine what to do next. 

 

Sunday, July 2, 2006

 

I guess it was too much to hope that things were going well. Nick woke up this morning with a

temperature over 101, felt sick to his stomach, and had a severe headache. He started shaking

and was in a lot of pain. The doctor on call told us to take him back to the hospital. It appears he

was most likely suffering from under dose from the baclofen. It had been reduced from 700 mg a

day to 200mg after the catheter was revised. We met the doctor at the hospital and she raised the

pump level to 300mg. He'll go up another 100 mg tomorrow. He still looks and feels terrible but

at least he isn't shaking as much and he's able to keep food down (at least so far.) If raising the

baclofen level doesn't help they will start testing him for spinal menengitis! Let's hope and pray

this takes care of the problem.  

 

Saturday, July 1, 2006

 

Nick was required to check into the hospital at 8am yesterday but didn't get called back to

surgery until almost noon. Since he wasn't allowed to eat or drink anything up to that point, he

wasn't too happy about the wait. The surgery took about an hour and he was in recovery until

about 6pm. The Dr. said everything went well and we can hope that this will be the one that

works. 

The tube or catheter that connects to the baclofen pump was revised to a location higher on his

spinal cord. Unfortunately the catheter that was taken out didn't show any obvious signs of why

it wasn't producing results. If the new location and catheter does not make a difference then a

different type of medication will be used in the pump either in place of the baclofen or in

addition to it. 

Nick (and Mom) had trouble sleeping in the hospital last night. The room was over air

conditioned and no amount requests to fix it ,or thin hospital blankets seemed to help. He was

discharged around 11:00am today and is doing pretty well today, although his back his sore

where the incision was made. It will be a few weeks before we can really tell if the surgery was

successful. 

Have a fun and safe 4th of July! Looks like we will be laying low.  

 

Saturday, June 24, 2006

 

Nick had a busy week filled with numerous doctor appointments and his home therapy routine.

He was given Botox injections on Tuesday which we are hopeful might help his severe

cramping. Nick has been studying trigger point therapy with the help of his massage therapist

and he gave his doctor or a pretty hard time about where to put his injections. One thing his brain

injury has done is make him less flexible in his thinking. When he makes up his mind that

something should be a certain way, he doesn't budge. He decided to give the baclofen pump one

more try. He is scheduled for surgery on Friday, June 30, to replace the catheter. If only it would

work. It could make a huge difference in helping prevent his muscle spasms. 

 

Friday, June 16, 2006

 

Since it has been so hot, Nick has been able to use the swimming pool for some relaxation. We

have a lift that lowers him in the pool and then we use "noodles" to help him float and relax. He

has really been enjoying it. Nick's Botox treatments are due next week and he has really been

tight, especially in his left wrist and arm. Although the Botox doesn't have any real dramatic

effect, he sure notices it when it's time to be done again. This time he will get shots in his trigger

points in his neck, pec minor, wrist and hamstrings. Fortunately the needle doesn't bother him. It

's huge! 

Nick started his music lessons and picked right up on it. He's hoping to play the keyboard one

handed. Nick had an appointment with his neuro-opthimologist yesterday and he was pleased

with the progress he is making. Although he still has some double vision, it is getting much

better. He feels this is directly related to the brain injury in his basil ganglia and has shown some

good signs of healing. The basil ganglia also controls his movements which cause the spasms.

We are still praying that his healing will continue and with time the spasms will subside. 

We're headed out now to get Dad a father's day gift. It's about 107 today; wish us luck!! 

 

Thursday, June 1, 2006

 

Today was another milestone in Nick's recovery. He was discharged from Barrow

Outpatient Rehabilitation today. Since he started in February, he has learned to do many

things right sided. He has become much stronger and is able to transfer by himself in and out of

his wheelchair. Although he still isn't walking, (due to the dystonia,) except for very short

distances and with a lot of support, he is getting around much better. He's learning how to live

with his pain and take care of his personal needs with minimal assistance. He was very glad to

finish today just because it is so hot (106 today) and the van transportation was uncomfortable

and running late most of the time. He will really miss his therapists who were absolutely

wonderful, knowledgeable, and caring people. Now the real work begins, as Nick will need to

practice all that he has been taught and apply it to his daily living. Nick has a great caregiver,

Clark, who will be helping with his home therapy routine.

Nick felt especially good today because Barrow has been displaying his art at the center for the

past two weeks and they asked him if they could extend the show because of the great feedback

they were getting from patients and their families. 

Nick's friend Lynne is now awake and although she isn't talking much, it does appear she

remembers him. She is experiencing many of the same stages that Nick went through. Lynne

gave Nick a shirt once that said, "1% chance." We decided yesterday that she needs a shirt that

says ".00001% chance." 

Nick is excited to begin some music lessons tomorrow. He is trying to learn how to play the

keyboard one handed since he can no longer play his guitar as it requires both hands. We were

told that learning new things is good for the brain instead of always trying to relearn what you

used to know. 

 

Sunday, May 21, 2006

 

Dear friends and family,

Sorry we haven't made any entries for awhile. Although Nick is making good progress, the

reality is that it is a long slow road to recovery. We are all getting tired. Nick is working as hard

as he can and yet his cramps and the dystonia persist, making life difficult every minute of the

day. Sometimes it looks like his bones are going to break the cramps are so severe. 

Nick had a special visitor today, (his guardian angel) Scott Brady. Scott was home visiting his

parents from Las Vegas where he is a firefighter. Scott will be receiving an award from Liberty

Mutual for saving Nick that night when he was off duty. He invited us to be there when he

accepts it. We are forever grateful for his willingness to stop and revive Nick when he saw him

laying in the street.

Nick's friend Lynn is finally coming out of the coma she has been in for the past seven weeks.

Nick saw her last week and the nurses felt she was responding to him. Since Nick was a part of

her short term memory, we are really hoping she remembers him. She was such a plosive

influence his his life. 

It's been very hot here already, almost to 105 in the afternoon. This is creating some new

challenges with the wheel chair. Since it has a lot of black vinyl on it, it absorbs the heat very

quickly and is actually too hot to touch. We're working on getting some sheepskin covers made

for the arms to help alleviate the problem. 

 

Thursday. May 11, 2006

 

Hello everyone this is Nick,

I've been doing a lot more by myself. My therapy at Barrows out-patient is going well. I'm

having another art show there starting tomorrow; it will last for a month. After that, my

speech therapist said I could show my art where she works part time.

Peace to all,

Nick  

 

Thursday, May 4, 2006

 

The new medication Nick tried (Aratane) didn't work out. It didn't help at all and he started

having adverse side effects so it was stopped. The higher dose of Baclofen has helped his

cramping but is making him more drowsy, making it hard for him to concentrate on his therapies

and homework. For now, he'll stay on it just to get some relief from the cramps. One new

treatment we are using on Nick is called a compression sleeve. It is used several times a day for

12 minutes each. It is a sleeve that his arm fits in and it blows up with air to 80 pounds of

pressure. Since he has been using it, he is begining to get some use of his left hand and arm for

the first time since his accident. Strangely, when the sleeve is pressureized his arm relaxes and

we can move it out to the side or above his head. For the past year, his arm has been so tight it is

extremely hard to move away from his body. This is a very positive change so we are really

hoping it continues. The year has been so long and we are all getting weary, so little positive

changes are really encouraging. 

Nick was asked to display his art work at Barrow Neurological Outpatient facility starting next

week through mid June. Nick's mentor Lynne McClure was responsible for setting up his first

show and she really motivated him to keep drawing. Lynne is still in the hospital in a coma from

an accident on March 19. Please say a prayer for her too. 

 

Wednesday, April 26, 2006

 

The appointment with the new doctor (formerly from the Cleveland Clinic) went well. He had a

lot of good information but unfortunately nothing really promising to help with the dystonia. For

now, the deep brain stimulation surgery is something he feels is too risky and not proven for

dystonia caused by injury. He did start him on some new medications and a higher dose of oral

baclofen. So far it seems to be helping a little. Another thing we are trying is massage therapy.

Nick's massage therapist is trained in working with dystonia and is she also doing cranial

massage on him. It is very relaxing for Nick and he really looks forward to it. 

Nick has been able to get out for short excursions over the past couple of weeks. Besides going

to church we took him to watch some of the ASU vs Uof A lacrosse game. He also did several

laps (in his wheelchair) for the Relay for Life cancer walk with his mom in memory of his cousin

Michael and also to raise money for the cure in honor of his Aunt Joanne and Uncle Terry. Nick

has also visited Lynne several times in the hospital. Unfortunately she is still in coma but she is

beginning to have a lot more movement. We are hopeful she will wake up any day now. 

Nick's therapies are going real well, and although he still relies on the wheel chair, he is learning

to use a hemi walker for short distances. Nick's dad came up with the idea of using army boots,

with his heel lift and an ankle split to help him walk. It really has helped give him the added

support he needs.

 

Tuesday, April 18, 2006

 

We hope you all had a wonderful Easter weekend. This time last year we were praying that Nick

would wake up. Our prayers were eventually answered and now our hope is that Nick will

somehow over come the dystonia and cramping that is preventing him from walking and causing

him a great deal of pain. Although his progress seems very slow, when you look at the big

picture, Nick has made huge strides and continues to get stronger and more independent every

day. 

Our meeting with Nick's therapists went well. They feel he is making good progress toward his

goals. Nick's doctor changed one of his his medications last week from neurontin to a different

new type of nerve pain reliever that is suppose to have less negative side effects. The neurontin

makes his speech slurred and he is difficult to understand. The doctor reviewed his brain MRI

with us and determined that the areas of the brain most affected were in the areas that control

speech and coordinated movement. The dilema is, if you treat the cramping by using muscle

relaxants, it weakens the tongue muscle and affects his speech. Since the botox and the baclofen

pump are having little positive effect, we are now considering other options.

Tomorrow we have an appointment with a Neurologist who specializes in movement disorders

who just came to Barrows from the Cleveland Clinic, one of the leaders in brain research and

treatment. We are hopeful he can give us some new insights and possibilities for controlling the

dystonia. We'll be finding out more about deep brain stimulation and whether it might be

appropriate for Nick's type of injury.

Nick was finally able to visit his friend Lynne who is still in a coma. She was moved to St. Jo

last week from Texas. When Nick spoke to her, she definitely had a response to his voice. We

are hopeful she will wake up soon. We will be visiting her again tomorrow after Nick's doctor

appointment. Nick told her all the things she always told him to inspire him to keep trying. 

 

Sunday, April 9, 2006

 

Another week and Nick continues to work very hard. With the aid of his walker and various

ankle and arm supports, he walked 65 feet in 12 minutes. The main reason he has to stop is that

his ankle tightens and twists so much that even with the supports he can't put his weight on it. He

stands in a standing aid for 30 minutes, putting weight equally on both feet twice a day, usually.

He does this without the aid of the lifts that are in his walking shoes, (modified army boots) the

idea is to let his weight stretch out the ankle and work against the dystonia. His physical therapist

is working with him to stand using only his right hand on a "hemi walker", a frame that looks

much like a small step stool without steps. His balance is improving greatly which makes all

activities easier.

There is another meeting with his therapy team and the family Monday. We will get a progress

report and plan for what he will be working on next. At the last meeting we were told that his

treatment would most likely go into May. We are exploring what our options are after he is

discharged from Barrow.

The wheelchair modifications have given little if any relief to his discomfort. Because he can't sit

in it for long, he is very limited as to what he can do and go see. Even taking the dogs to the park

reaches the limits of his ability to sit in the chair. We do think that the person now working with

Nick on the chair modifications will eventually make it as comfortable as possible for him. 

 

Sunday, April 2, 2006

 

Nick finally got some needed relief from the cramping in his wrist. The therapists recommended

a new splint called a Dyna Splint "Flexie." It is put together with tension springs and although it's

somewhat flexible it keeps his hand and wrist from curling in without breaking down his skin

when the spasms occur. The Botox has not had a huge effect. We notice his spasms seems to be

somewhat less but this splint has really helped him during his rehab exercises. He has made

some personal best records this week. He was able to use his walker with very little assistance

and walk 46 feet. It took him almost 25 minutes to do it but he felt really good about it. He was

also able to get dressed without any assistance; things we take for granted but are big milestones

for Nick. Nick is definitely getting stronger and has resolved to get on with life even if he has

little use of his left side. We have an excellent team of therapists at Barrow Outpatient and they

have really helped him see steady progress. 

Another bit of good news came this week when Nick finally got a wheelchair evaluation from a

man named Jack who really seems to understand the problems he is having and can do

something about it. He is working on some custom cushions and various things to help Nick feel

more comfortable in his wheel chair. As it is, Nick is really uncomfortable sitting for any length

of time. Hopefully by Wednesday, he'll get to try out some of the new parts. 

Many of you have asked about Lynne McClure's condition. She is still in a level 6 coma and will

have surgery on her hip tomorrow. She has been stabilized and is no longer in ICU. Her husband

Pat is with her in San Antonio and her son visits on weekends. We continue to pray for her

healing. She is a very strong woman, so we know she is fighting hard. Nick is dealing with this

through his drawing which seems to help him cope. 

 

Saturday, March 25, 2006

 

It has been a week of mixed emotions. On Monday we received tragic news that Lynne McClure,

our friend and Nick's mentor was involved in a very serious car accident while at a conference in

Texas. Ironically she received injuries to her brain and broken bones on the right side of her

body. She is unconscious but stable at this time in the ICU at University hospital in San Antonio

Texas. Only two weeks ago, the local news ran a story about Lynne and Nick because Lynne had

suffered a brain injury at age 15 and went on to be a successful author and business woman. She

has been very inspirational to Nick. Our hearts and prayers go out to Lynne and her family.

On a positive note, Nick's grandparents have been visiting from Missouri this week. They hadn't

seen him since May so they were pleased to see how much he had improved. Unfortunately the

Botox has not had much, if any effect yet, but Nick is working hard at natural strategies to

overcome the painful spasms. On Friday night, Nick was able to attend the wedding of his good

friend Tim. He saw many old friends which always lifts his spirits. 

 

Thursday, March 23, 2006

 

The Arizona Republic ran an article today about Nick and his art exhibit. See it here.

 

Thursday, March 16, 2006

 

We have been waiting to put an update on, thinking that we could tell you that the Botox worked

and Nick finally got some relief in his arm and wrist but that unfortunately isn't the case. They

said it could take about ten days to see any effects, so far we have seen none! We just keep

hoping and praying that something will work. Nick has come to the realization that the only

thing that does work, is just working hard!. He is making some great gains in physical and

occupational therapy in spite of the cramps, pain, and stiffness on his left side. He also saw his

neuro opthimologist this week and he said he was really pleased with the progress his eyes are

making. His double vision has been reduced a lot. We think the neuro bio-feedback is really

helping in this area.

Nick was interviewed by the Az Republic on Tuesday. They are doing a small write up on his art

exhibit that is supposed to be in the Arts and Entertainment section on 3-23. 

 

Friday, March 10, 2006

 

Hello everyone, this is Nick,

Today is the one-year anniversary of when I was hit. Tonight I celebrated being alive by

going out for Italian food with my family. Even Suzanne was here from Seattle. This past

week on Tuesday I finally got the botox in my left wrist, (which only took 2 months to get

approved, but what are you gonna do?) It hasn't shown any effects yet, but the doctors say

it can take up to 10 days to work. I fought the devil and won and I am ALIVE! Thanks to

everyone for all of your support.

Nick

 

We had a family meeting today with Nick's therapists at Barrow. They had Nick run the meeting

by formally introducing all of us and then a report was given by each therapist on his goals and

progress. We were so impressed, first by Nick's presentation. His speech was very "crisp and

clear" and he had obviously practiced his role. His therapists and social worker are all excellent.

We are so happy to have them working with us. Sometimes we forget just how far Nick has

come over the past year. Suzanne hadn't seen Nick since last June and she was astounded at his

progress. We had a nice dinner to celebrate Nick's hard work, accomplishments and life itself.

On the way home we happened to come upon an accident scene and there in the road was what

appeared to be a young man who had been hit by a car lying in the road surrounded by

paramedics and flashing lights. It hit too close to home and was a chilling reminder of a horrific

time in our lives. We continue to be thankful to God and all of you who have given us strength.

 

Sunday, March 5, 2006

 

First of all, I would like to thank everyone for coming to my art reception. The owners said

that was the most people they had seen on an opening night. They also said it was the most

pretty girls they had seen at one time. Thats what I call a good opening night! I want to

thank my friend and mentor Lynne McClure for arranging this exhibit for me. She

continues to give me hope and inspiration. I would also like to thank the owners of Gold

Bar for letting me have this experience!

Nick

There will be pictures of Nick's work and of the evening at the Gold Bar soon. We will attempt

to put a link to the news broadcast also.

 

Thursday, March 2, 2006

 

The taping for Nick's segment on Chn 5 news went well today. It will air at approximately 6:13

am on Friday March 3. It may also be on the evening news at 5:30pm. He had a lot of fun with

Nichole Creitz, the interviewer who is quite attractive. You know how Nick likes pretty girls!

Nick is really looking forward to his art show this Saturday, March 4. We hope you can join us

from 7:00pm -8:30pm for his reception. He named the exhibit "The Awakening." Opening night

will be March 4. Nick will be at the Gold Bar Espresso in Tempe to meet and greet all who

come. He has been very excited to share his work which will include pieces from before his

accident as well as his recent drawings. He has used art and poetry throughout his recovery to

express his feelings and deal with his situation. Considering he could not even hold his head up

or use his right hand at all eight months ago, it's amazing to see the progression. Please join us,

as we celebrate with Nick. There will be live entertainment and refreshments. 

The Gold Bar is located at 3141 South McClintock, Tempe AZ. in the NE quadrant between

Blockbuster and Basha's.

 

Wednesday, March 1, 2006

 

Nick's baptism went well on Sunday. There were a few glitches getting him in and out of the

water using the Hoyer lift,but all in all it was a great day! On Monday we met with the neuro-

surgeon to discuss the prospect of yet another surgery to replace the shunt from his baclofen

pump into his spinal cord. His feeling is that we really should do it one more time to make sure

that it has been given the best possible chance to work. We are also looking at the possibility of

deep brain stimulation surgery. We are considering both it but we will be seeking a second

opinion before any decisions are made. He recommended the Cleveland Clinic in Ohio. There is

a new doctor on staff at Barrow who came from there, so before we head to Cleveland we will

meet with him. 

Nick's botox treatments were finally approved. It is inhumane how long it has taken, but

hopefully things will move more quickly now. As soon as the botox arrives, the doctor will get

him in to do the treatment which should help reduce the painful cramping in his wrist and

hamstring. Nick's therapy sessions at Barrow are going great. He loves the therapists and seems

to be making some good progress walking with a walker and doing things more independently. 

Channel 5 News is coming to do a follow-up story on Nick tomorrow. As the anniversary of his

accident (3-10) approaches, the fact that the driver that hit him as never been found is still news. 

 

Wednesday, Feb. 22, 2006

 

Hello everyone this is Nick.

I'm pleased to announce that I am going to get baptized this Sunday. I believe I was saved

by God that gloomy night and He healed my brain to survive the accident, helped me wake

up from the coma, and continues to heal me today.  

I've been spending my time preparing for my art exhibit and have been going to out patient

therapy at Barrow Neuro Rehab in Phoenix. I get a ride from a medical van. Today the van

didn't show up and I missed all my therapies. Even though we had confirmed the trip, they

messed up on the scheduling. I'm still waiting to hear about my botox injections. My

cramps were really bad today. I don't know why it is taking so long! Tomorrow I have an

MRI of my brain. Hopefully they will be able to tell what is causing me all these problems.

God Bless

Nick

You're all invited! A date has been set for Nick's art exhibit. He named it "The Awakening."

Opening night will be March 4. Nick will be at the Gold Bar Espresso in Tempe to meet and

greet all who come from 7 to 8:30pm. He has been very excited to share his work which will

include pieces from before his accident as well as his recent works. He has used art and poetry

throughout his recovery to express his feelings and deal with his situation. Considering he could

not even hold his head up or use his right hand at all six months ago, it's amazing to see the

progression. Please join us on March 4th, as we celebrate with Nick. The Gold Bar is located at

3141 South McClintock, Tempe AZ. in the NE quadrant between Blockbuster and Basha's.

 

Wednesday, February 15, 2006

 

10:30pm

Today was a pretty good day for Nick. He has been having sessions using bio-feedback

technology for about a month, two or three times a week. The technician administrating the

sessions has been saying all along that he thought Nick was doing very well and saw

improvement. Relaxation of the spasms is the primary focus of the treatment, improved vision is

another goal. On Monday Nick's spasms were very relaxed during the entire session, about an

hour. That may not sound like a long time, but when the left side of his body is in a constant

cramp, an hour of non drug induced relief is huge. After the session was over the cramps

returned. Today he remained relaxed after the treatment for more than an hour which carried

over into his in-home occupational therapy session. He felt very good about the progress and

worked on his art and was very talkative all evening. He also is now able to read normal print in

books and the newspaper. He still has some problem with double vision but even that has shown

signs of improvement.

On Tuesday he had appointments with two neurological specialists to determine where to go

from here. His baclofen pump is not giving him relief and the dosage is being adjusted

continually. A third surgery to reposition the catheter in his spine is an option. Nick is scheduled

to see the surgeon on Friday 2/24 to again to test the effectiveness of baclofen injected into the

spine. If it shows definite relief, the assumption would be that something is wrong with the

caterer and the decision will have to be made whether to do a third surgery.

Other options were discussed, one being deep brain stimulus, implanting electrodes into base of

the brain, and a laser surgery procedure that was popular prior to the deep brain stimulus

technology being developed. We will be doing alot of research on these, and other options,

before making any decisions.

Nick began his out-patient therapy at Barrow Neurogloical Institute on Monday. He is getting

speech, physical and occupitional therapy each day, one hour each. We are very happy with all

three of his therapist. This week he was only scehuded for Monday and Thursday, but they

indicated that it would go to three times a week next week. A medical transport van will take him

and Clark, his caregiver, to and from BNI.

His doctors are still waiting for authorization from insurance for the Botox. His wheelchair

adjustments are also held up by insurance.

 

Saturday, February 11, 2006

 

Sorry we haven't been updating as much, but it seems like we have the same news to report.

Nicks cramps are still quite bad. The doctor decided to reverse the baclofen in the pump and is

now taking it down. They have increased the oral meds again which means he is a lot more

groggy but it does help with the pain. At this point it seems that is all we can do. The insurance

companies still haven't authorized Nick's botox treatment which is the one thing we know helps.

Next week should be better as he finally will be starting his therapy program at Barrow

Outpatient. If he could get the botox it would really help him with his therapy. 

You're all invited! A date has been set for Nick's art exhibit. He named it "The Awakening."

Opening night will be March 4. Nick will be at the Gold Bar Espresso in Tempe to meet and

greet all who come from 7 to 9pm. He has been very excited to share his work which will include

pieces from before his accident as well as his recent works. He has used art and poetry

throughout his recovery to express his feelings and deal with his situation. Considering he could

not even hold his head up or use his right hand at all six months ago, it's amazing to see the

progression. Please join us on March 4th, as we celebrate with Nick.

The Gold Bar is located at 3141 South McClintock, Tempe AZ. in the NE quadrant between

Blockbuster and Basha's.

 

Sunday, February 5, 2006

 

On Monday last week Nick's baclofen pump was adjusted up to 1250 mg but by Friday when he

had his next appointment the verdict was that it just isn't working . His cramps and stiffening

were worse than ever. The thought is that there may be a kink in the line that goes from the pump

into the spinal chord . The solution suggested was another surgery. Nick said he'll do whatever it

takes, but going in for a third time to do the same thing (that hasn't worked yet), seems so

questionable! He has an appointment with his neurologist on the 14th. We'll probably wait until

then to make a decision. 

On a positive note we have been enjoying beautiful SW weather for the past two months. It has

been sunny and 75 for the past week. We set up Nick's easel outside yesterday so he could paint.

He's preparing to show some of his work in March, at the Gold Bar coffee shop in Tempe. 

Go Seahawks!

 

Tuesday, January 31, 2006

 

The past week was very busy for Nick, going to classes, numerous doctor appointments and an

evaluation at Barrow Outpatient Therapy for the new program he will be starting next week. The

doctor is still trying to figure out what to do to help the spasms, which seem to be getting worse

instead of better. Another round of Botox has been ordered but is on hold due to pending

authorization from insurance. The Botox actually helped his spasms more than anything else has

so far. This time they plan to put a majority of it in his wrist where most of his pain is centered.

After much thought and input from Nick's therapists and doctors, Nick has decided not to

continue at ASU at this time. The reality is that the high doses of medication to relax his spasms

and the intensity of the spasms were making it very difficult for him to concentrate during class

and on homework. He will instead put all of his efforts into his physical, speech and occupational

therapy. His goal is still to get back to school next semester. 

Nick has used art as a form of expression throughout his rehab. Today he wrote a poem and drew

a picture entitled "Brainwash" that is quite telling.

Stimulate the fog

that molds inside your brain

and you shall be set free

for eternity

 

Monday, January 23, 2006

 

7:15am

Nick attended class at ASU on Thursday. He was having one of his very groggy days and

struggled to stay awake. He decided that he would rather be in pain and deal with the spasms

than be so "out of it" all the time. His baclofen is being reduced as are some other meds. Over the

weekend he was much more alert and the pain and spasms seemed about the same. 

Outpatient therapy at Barrows begins today. The first day will be evaluation then we should find

out what therapy and how often. 

Nick got glasses Saturday. He didn't want to have to wear glasses but when he put them on he

did admit that they did help. They help him see distance more clearly but do nothing for the

double vision. 

 

Thursday, January 19, 2006

 

7:30am

Nick was not able to attend class at ASU on Tuesday due to a respiratory infection. He was very

tired and groggy, cramping severally. Fortunately, it turned out not to be pneumonia. On Monday

the doctors decided, at Nick's insistence, that they would try reducing the baclofen dosage

supplied by his pump. He feels that he is getting worse. The plan is to see happens as the dosage

is adjusted. 

We learned yesterday that Nick will begin outpatient therapy at Barrow next week. This is great

news. It will consist of one hour of physical and one hour of occupational therapy twice a week.

He is getting nothing now because insurance denied the in home visits. Insurance will not

authorize speech therapy. 

Today Nick will be going to his class at ASU for the first time. We hope it all goes well, it means

so much to him. Friday he will be going in for neurological testing. It will take most of the day

and intended to determine what the extent of his brain damage is. 

 

Saturday, January 14, 2006

 

8:30am

The cramping that Nick is experiencing has been worse than ever. It consumes him and makes it

difficult to do his physical therapy. He had put such high hopes on the baclofen pump which

seems not to be effective with his problem at all; in fact for the past week he thinks it is making

it worse. The doctors came up with nothing in their research and seem to be giving up. We are

desperately trying to find other sources for information or treatment. If any of you know anyone

who has ever dealt with brain injury and the resulting dystonia, please ask them if they know of

anyone who has expertise in this field. We're committed to doing whatever it takes to help Nick

get past this. Amazingly he still has his sense of humor and rarely complains. He's been drawing

to express himself, which has helped.  

Nick is suppose to start at class at ASU next Tuesday. He wants so badly to get back into life,

hopefully the cramping won't prevent this. His mentor Lynn, and his caregiver Clark, will both

be assisting him on campus. It means so much to him, we're going to let him try it. We're hoping

the college environment will give him more to think about and will distract him from his painful

cramps. One can only hope!

 

Saturday, January 7, 2006

 

10:30AM

Results of the hospital visit yesterday showed that Nick's baclofen pump is working properly and

the tubes are not plugged and are in the correct position in his spine. Preliminary results of the

MRI taken Thursday showed nothing out of the ordinary, as did a CAT scan done Friday. Blood

and spinal fluid was sent to the lab for tests for infection, we will find out those results Tuesday.

All that said, then why isn't he getting any relief from the baclofen? His doctors will be doing

some "homework" over the weekend and we will discuss what's next at his Tuesday

appointment. He is sleeping in this morning as that is the only time he has any relief. The knee

surgery that had been scheduled for Friday, Jan 6, was postponed again due to the infection in his

body. 

 

Friday, January 6, 2006

 

10:45am

It has been a week of pain and frustration for Nick. The infection in his body has not yet been

identified. He had an MRI on Thursday to see if the pain in his back is related to the high white

blood count. The hospital just called and we are admitting him around noon today for another

pump flow study and more labs. He just can't seem to get any relief short of being so medicated

that he is asleep. Please keep him in your prayers.

 

Sunday, January 1, 2006

 

11:00am

HAPPY NEW YEAR! We wish you all health and happiness in 2006! Nick is certainly

looking forward to 2006 with optimism and hope for a great year.  

Nick's trip to ASU went well. He was able to get his class book and see the classroom and

wheelchair ramps etc. We could sense his disappointment , however, as reality hit him that he

won't be walking to class (yet!) and he still requires a lot of help. In his mind he was so sure he

would be walking and living on his own by now. Each time we think he is finally going in the

right direction something happens. On Thursday, the doctor called and said the lab results came

back and showed his white blood count is very high again, around 20,000. He immediatly started

him on some anitbiotics but the source of the infection is still unknown. We have been letting

him sleep a lot more, hopefully the rest will help him heal.

 

Thursday, December 29, 2005

 

11:30pm

We had a wonderful Christmas together; it was just the four of us on Christmas morning. Nick

announced that this was his best Christmas ever and then pumped his fist and said, "because I'm

alive!" He had a pretty good day and especially enjoyed visits from some of his best friends. The

next two days were not so good. He started cramping real bad and seemed to be having problems

with his medication making him feel dizzy and nauseous. He ran a low grade temperature and

the doctors ran some tests but we still aren't sure what the problem was. He stopped taking one of

his meds and seems to be doing better today. His pump was adjusted up again today and the

physical therapist thinks she is beginning to see some positive results from it. She is having him

walk using a special walker with an arm support. He is able to go all the way through the loop (

the kitchen, family room, dining room, and foyer )with her assistance. He tires quickly as it

seems the spasms kick in, the more active he becomes. Tomorrow, we're taking Nick to ASU to

physically see the classroom he'll be attending and work out a plan with the disability office for

assistance.

 

Wednesday, December 21, 2005

 

10:30pm

What a week it has been! We had to say goodbye to Rainy, Nick's aunt and caregiver who

returned to Seattle. She was with Nick for over three months and really will be missed! We have

a new caregiver from an agency. His name is Clark. Nick seems to be adjusting to him quite well

and things are going fine so far. Nick has been experiencing more pain than normal in his wrist

and shoulder. It appears the effects of the botox are wearing off and the baclofen pump is not yet

to a level that really helps the spasms. He can hardly concentrate or work on anything because

the cramping is so severe. It's amazing that through it all he generally stays positive and good

natured. 

Last Wednesday Nick had a special day, when he was invited back to the ASU Kerr Culture

Center holiday luncheon. He loved seeing all his co-workers and they really lifted his spirits.

He's anxiously waiting until the day when he can go back to school and work. He often tells

people, it's the first time in his life that he's looking forward to having homework!

We haven't sent Christmas cards this year, it's just been too hard to find the time, but we want

you all to know you are in our thoughts. We can't thank you enough for the love and support you

have shown us all throughout this whole ordeal. We wish you all a wonderful Christmas Season!

 

Tuesday, December 14, 2005

 

11:00pm

It was a very full but productive day for Nick. He had four medical appointments starting at

8:00am this morning and we didn't get home until 5:00pm. The first was with a neuro

opthalmologist. After a two hour evaluation he determined that Nick's eyes are healthy but the

muscle on the right eye is weak and may require some surgery to correct the double vision he is

experiencing. He referred him to a surgeon for further evaluation in January. Next was Nick's

weekly pump adjustment. Nick has been pretty drowsy on the oral baclofen so starting tomorrow

it will be reduced slightly. Hopefully this will help to clear up his speech. 

In the afternoon Nick saw a neuro-psychologist who specializes in neuro feedback. He uses a

type of brain wave therapy to help normalize brain act ivy. Dr. Horvat is from Texas but offered

to see Nick and start treating him this week. We have hopes that it will expedite his recovery. At

3:00pm, he had his last appointment of the day for a wheel chair evaluation. His lower back has

been bothering him, as the one made for him didn't have any lumbar support. We got a new back

support put on and it appears to be much better for Nick. All in all it was a great day! 

 

Friday, December 9, 2005

 

7:15am

This has been a pretty good week for Nick. Even though we haven't seen any dramatic results,

his baclofen pump apparently is working and he hasn't experienced any fevers. He went in for

adjustments twice this week. It can only be increased 20% each time and can only be done every

two days. The person who does the adjustments doesn't work on Wednesdays so his scheduled

adjustment days are Monday and Thursday. The doctors can't say for sure what dose Nick will

need to dramatically reduce the spasms but they estimate from experience that it will take 3 to 4

more weeks of adjustments to get to the level he will require.

We are trying to get Nick into outpatient therapy at Barrow's. He has only been getting two hours

of in home physical therapy a week and that is supposed to stop today. We were told that it

would take 5 to 6 weeks to get him in and requested that in home continue until then. No answer

yet.

Nick has been a very good mood all week. He has had several visitors and went shopping at the

mall on Wednesday. He is always in a better mood when he is busy and enjoys company. 

 

Friday, Dec. 2

 

9;00pm

Nick spent all day at St Jo. The pump study was done and all indications were that it is working!

We are sooo relieved and thankful that he won't need another surgery on it! The first indications

were that he might possibly have a kidney stone. More Cat scans and labs proved that also was

not the problem. The doctor said he is a "medical mystery" but it appears what he was

experiencing may have been drug withdrawals from the reduction in the oral baclofen and the

trazadone. They upped the dose and he was finally released to go home at 6:30pm tonight. 

Although he is still experiencing pain from the spasms, it feels like a huge weight has been lifted

knowing that the pump is working!

 

Thursday, Dec. 1, 2005

 

5:45pm

Nick made it through the night Wednesday without a trip to the ER, as were were able to get his

fever down. By 9:00am on Wednesday it was back up to 102 so the doctor had us bring him in to

see her. He had a lot of lab work done to rule out infection. The results came back today and it

was negative which puts the problem most likely on the pump again. 

Nick will be admitted back to St Jo in the morning to have a pump study done. This just makes

us sick to think it may not be working again. Please pray that that is not the case. He just needs a

break!!!