Tuesday, November 29, 2005

 

11:00pm

Nick had such a nice time visiting with all his extended family over the Thanksgiving

weekend.  We celebrated on Sunday evening by taking him out for Mexican food. 

This was the first time since his accident that he had eaten in a restaurant.  He

seemed to really enjoy it.

 

The baclofen pump was adjusted up yesterday by 20% and the oral baclofen was

reduced.  By 6:00pm tonight he was running a fever and cramping severely again. 

The doctor said to give him more oral baclofen and if that didn't make him feel better

by 2:00am we need to go to the ER for them to look at the pump catheter again!!!  

Hopefully it will work and he can stay home tonight.  We are all so tired of hospitals.   

 

We have added a new page of pictures on the photo album to show Nick's progress.  

Check it out.

 

Friday, November 25, 2005

 

1:30pm

Happy Thanksgiving to all!  We enjoyed a wonderful day with Aunts Diana and

Rainy, Cousins John and Ellen and friends Laura and Derek.  Nick put everything in

perspective by giving thanks for being able to be sit at the table and have dinner

with all of us.  He thanked Scott Brady for taking a "wrong turn", God for saving his

life and giving him his mental capabilities, all his body parts, and for not being

paralyzed.  He also thanked everyone for the love and support and friendship that

they have given.  We couldn't agree more.  We are abundantly grateful for all of you

who have helped us through such a difficult time.

 

Nick has been feeling a little stronger day by day.  He has been working hard at

building his endurance by doing laps in his wheelchair, using his walker to stand and

balance, and using relaxation techniques to relieve his spasms.  He is still having

trouble with double vision but has been enjoying a number of books on tape.  Nick is

determined to be up and walking by February when he returns to ASU for one class.

 

Sunday, November 20, 2005

 

9:15pm

Nick is feeling better little by little and is really enjoying food again.  He lost some

weight again when he was in the hospital so he is very concerned about putting it

back on.  We still haven't seen any positive result from the baclofen pump but the

doctor said it may take a while.  At least it isn't worse like the first time.  Nick really

perked up this weekend when he had visits from several friends. He also felt well

enough to go to church this morning, so all in all it was a pretty good weekend.   

 

Wednesday, November 16, 2005

 

5:30pm

Nick has been resting a lot as he recovers from his second baclofen pump surgery

and pneumonia.  He is feeling much better but just very tired.  His back has been

bothering him a lot, we think just from having to lay around and sit so much.  His

new wheel chair back doesn't seem to support him very well.  We're looking into

some back supports that will hopefully help. His physical therapist is the only one

that has come so far this week.  We celebrated his feeding tube removal at the ice

cream shop on Monday.  He was pretty happy about that!

 

Sunday, November 13, 2005

 

10:00am

Thank God, Nick is home again!!  Nick was discharged yesterday morning from the

hospital.  He is feeling much better although he is still very sore at his incision site. 

His pneumonia has cleared up and they were satisfied that it had not caused a blood

infection after all.  The doctor removed his feeding tube on Friday so he is feeling

really upbeat and looking forward to eating regular foods again.  He is still having

some difficulty with a weak swallow but the food is going down the esophagus not

the trachea like it is suppose to.  He will continue to work on his swallow thru

therapy for a while longer.   

 

The baclofen pump won't be adjusted until Thursday, so until then he will continue

on oral baclofen.  The goal of course is to get him off all the oral meds for the muscle

spasms and pain they cause, so it does not affect his speech so much.  He is

scheduled to start home therapy for occupational, physical and speech on Monday.  

We loved the therapists he was working with but they were booked up for now, so he

will have to start with a new group tomorrow.  He's still resting and healing so it

won't be very aggressive at first.  We are all hopeful Nick has turned the corner and

he is on the road to recovery again.  Thanks for all the prayers and support.

 

Thursday, November 10,2005

 

9:30PM

Nick endured yet another surgery today.  The baclofen pump was working after all,

the problem turned out to be blockage in the catheter on the end of the tube

that was in the spinal cord.  It was removed and replaced.  This involved incisions in

his back and puncturing the spinal cord again with all the risks that this procedure

presents.  He was in good spirits and eating shortly after the surgery.  Later this

evening he began to have headaches.  Hopefully this is not a reoccurrence of the

spinal headaches that led to the problems last time.   

 

Thursday, November 10, 2005

 

6:30AM

The baclofen pump that was surgically implanted in Nick on October 28th is not

working.  The oral baclofen he had been taking had been reduced and Nick was

suffering more severe cramping than usual.   Increases to the pump flow were

providing no help.  A flow test was done yesterday and it was discovered that there

was no flow of baclofen from the pump.  Another surgery is scheduled for 2:00 PM

today.  There has not been an explanation of what went wrong or what the planned

surgery will include and therefore it has not been authorized by the family.

 

Tuesday, November 8, 2005

 

11:45PM

Nick was one sick guy when he was admitted to the hospital Sunday night.  His fever

was brought down with IV fluids and ice and his lung congestion is breaking up.  He

has begun to exercise his lungs more frequently with a breathing devise.

We found out today that his white blood count was 25,000 (normal is 8,000 -

10,000). Today it is down to 17,000, so at least he is going in the right

direction.  Tests have been running all day and still the concern is that a

blood infection may be the cause.  Tomorrow should reveal the results of the tests.

 

On a good note, he was given a "Barium Swallow Test" and he passed.  This tested

his ability to swallow liquids and solid food without them going into his lungs.  He is

now eating "regular hospital food" and, the plan is for his feeding tube to be

removed prior to being discharged from this visit to the hospital.  Tomorrow a

baclofen pump flow test will be done to rule out any problems possibly caused by the

device.

 

Nick's spirits are much better now that he has been cleared to eat regular food

again.

 

Monday, November, 7, 2005

 

7:00AM

Nick is back at St. Joseph's Hospital.  Last evening he was running a fever, shaking

and cramping up more than usual.  Assuming that taking him to emergency would

have resulted in sitting in the waiting room for hours, 911 was called around

6:30PM.  His temperature hit 103.9 and the decision was made to transport him to

the hospital by ambulance.

 

He was given fluids by IV and ice applied to bring down the fever.  X-rays revealed

that he has pneumonia in both lungs, no doubt a result of the immobility caused by

the complications resulting from his surgery last week.   He was admitted to the

hospital and as of now it is not know how long he will be there.

 

Thursday, Nov. 3, 2005

 

9:00pm

It has been a week since Nick's surgery and he is still unable to sit up or have lights

on due to the spinal headache.  His neurosurgeon finally prescribed something for

the nausea which helped him finally be able to keep food down.  The past week has

been hard mentally as well.  He had such high hopes for the surgery; his spirit is

really low right now with all that he has had to endure.  The pump had not provided

any real noticable relief so on top of being in pain from the spasms in his wrist; he is

in pain from the surgery and the headache.   Please keep Nick in your prayers.

 

Monday, Oct. 31, 2005

 

11:30PM

Nick was pretty sick overnight but we were advised to monitor him at home and call

the doctor first thing this morning.  The symptoms most likely indicate that Nick is

experiencing a spinal headache from the spinal tube insertion and reaction to the

anesthesia.  He spent the day laying flat in the dark, as bright light hurts his head. 

He is still feeling sick to his stomach but finally got to sleep around 10pm.  Hopefully

he will feel better in the morning.   

 

Sunday, Oct 30, 2005

 

8:30PM

Nick was finally discharged from the hospital at noon today.  He was extremely

groggy and was still experiencing pain but generally doing ok.  By 6:00pm tonight he

began to get nausea and a bad headache.  His doctor was called and we are

currently monitoring him to see if he will need to return to the hospital.  The doctor

on call felt that it might just be a reaction to all the pain meds, or the spinal

puncture.  We will keep you posted.

 

 

Saturday, Oct 29, 2005

 

1:45PM

Just a quick note to let you all know that Nick made it through the surgery

successfully.  We have not seen any major changes in the dystonia thus far but the

Dr. said it could take a week before we see any noticeable results.  We've been so

focused on wanting the pump to take away the pain and spasms we forgot that

abdominal surgery is not all that easy.  He was in quite a lot of pain yesterday but

true to his nature, rarely complained.  He is pretty medicated but resting comfortably

now.  He's hoping to listen to the ASU vs UW game today with dad, both of course

pulling for their team.  Nick is scheduled to be discharged on Sunday around noon. 

Thanks again for all of your prayers and support.   

 

Sunday, October 23, 2005

 

1:45pm

  Hey Everyone,  

 

I'd like to start out by saying it means a lot to me to see how many of

you check my web site .  I've been going to VitalStim swallow therapy for

the past three weeks to get this darn feeding tube out.  Tonight I got to

have filet mignon (cut up of course!)  It tasted sooo good!  The speech

therapist is keeping me on the treatment until I get the baclofen pump so

she can check and make sure it doesn't affect my swallow.  I have no

problem with this because I definitely don't want to have to go back on that

tube.  I go in to the hospital for the baclofen pump test this Wednesday, Oct

26, at 6:30am.  The surgery will probably be on Thursday if all goes well.  If

you would say a prayer for me that it will work, that would be wonderful! 

Keep Aunt Joanne and Uncle Terry in your prayers too as they go through

their treatments for cancer.   

 

See you and best wishes to all of you!

Nick

 

Tuesday, October 18, 2005

 

10:30PM

Nick was really out of it for the past couple of days.  We think a new medication that

was intended to relieve the muscle cramping is making him excessively groggy and

his speech has really deteriorated.  Since it hasn't helped the pain or cramping we

are hoping to take him off of it.  His vital stem (swallow) therapy is going great and

he is enjoying the fact that he gets to eat regular soft foods again.    One of Nick's

former classmates contacted us and told us about Tea Tree Oil Cream as a pain

reliever.  We tried it and it really did seem to help his wrist today.   

 

Saturday, October 15, 2005

 

4:00PM

Nick had good news this week, the hospital had a cancellation and has scheduled him

for the test to see if the baclofen pump will be effective earlier that they first

indicated.  He will go in on Wednesday, Oct. 26.  If it is successful, the pump will be

surgically implanted most likely on the 27th.  He will then need to be at St. Joseph's

hospital for another 3 to 5 days.  While none of us are looking forward to more time

in the hospital, at least he should finally get some relief from the dystonia.  We are

currently experimenting with relaxation tapes and guided meditation to see if that

will offer him any pain relief without more medication.  If any of you know of any

good tapes or resources, let us know.   

 

Monday, October 10, 2005

 

10:00 PM

Except for the extreme pain caused by the continual spasms in his left wrist, Nick

had a good day today.  His physical therapist had him standing a little and taking a

few steps with the help of a walker and Ty, his caregiver. At his swallow therapy

session, he ate "regular food", chicken, veggies (pureed) and mashed potatoes with

chocolate pudding for desert.  She thinks that within a few weeks Nick will be back to

a more normal food diet.

 

We met with an advisor at ASU school of journalism to discuss Nick enrolling for

spring semester.  The counselor was very aware of Nick's situation from the media

coverage and went out of her way to get all the information necessary to get Nick a

class that would apply to his major and fit his schedule.  The dean of the school

came in to meet Nick and give support of his effort to continue his education. He

gave his personal contact information to assure that Nick got whatever help he might

need to succeed.  Because of all the therapy sessions Nick will take just one class

Spring semester.  The professor who will be teaching the class also came in to meet

Nick. ASU has been and continues to be very supportive of Nick throughout this

ordeal.   

 

Nick's famous smile is mostly back.  When he first awoke from his coma the muscles

in the left side of his face were not very responsive.  Today while talking to the

people at ASU his smile was very full.

 

Sunday, October 9, 2005

 

8:00pm

The appointment with the neuro-surgeon was a mixed experience.  The good news is

that Nick will be a good candidate to get the baclofen pump which has about an 86%

chance of substantially helping with the cramping from dystonia that he is

experiencing.  The bad news is that the surgeon won't be able to get him in for an

appointment until at least the end of the month.   With the pain and stiffness getting

worse by the day it just doesn't seem possible that he should have to wait so long.  

The only relief he gets now is when he is so drugged from the medications that he is

asleep.   Nick is handling everything pretty well although it is apparent he is in great

pain.   He still makes sure to find a "fish head" (reference from the book by Victor E.

Frankl, meaning something good) every day.    

 

Thursday, October 6, 2005

 

8:00PM

Nick is really enjoying the VitalStim therapy mostly because he gets to practice

swallowing real food like yogurt and ice cream during the session.  The therapist

seems very encouraged that he will be swallowing well enough to get back on a

regular diet, possibly within a month  It can't be soon enough as far as we are

concerned.  Although Nick is really working hard, progress has been slow lately.  He

is going to be evaluated by a neurosurgeon tomorrow for implanting a baclofen

pump.  Nick's pain level has been so high lately from the dystonia, that he is putting

all his hopes on this procedure.  Pray that it will work!!!

 

We are so grateful that Nick's Aunt Rainy is here now helping with his care, since

Auntie Diana had to leave.  They are both angels and have helped us so much.   

 

Tuesday, October 4, 2005

 

7:00AM

Nick had his evaluation and registration with his VitalStim swallow therapist

yesterday.  She felt that Nick was a good candidate for the treatment, which will

begin today, and that he should be eating within a few weeks.  The wheelchair that

was ordered for Nick when he left Barrow Institute July 7th is ready for pick up. He

will go in for a final "fitting" this afternoon.  The physical and occupational therapist

have coordinated their time so that Nick has one of them each day Monday thru

Friday.

 

Thursday, September 29, 2005

 

7:30AM

The results of Nick's MRI on his left knee showed that he has a complete tear of the

ACL with some damage to the MCL, the PCL is intact, and he has a torn meniscus

(cartilage).  As bad as that may sound, it is actually better than we had expected.

The orthopedic surgeon doesn't think that the torn ligaments are what is causing

Nick pain when he attempts to stand, it is the torn cartilage.  Arthroscopic surgery is

scheduled for late November.  The baclofen pump will be done first.  When he

progress with walking and the ligaments become the problem they will be repaired

then.   

 

Authorization was finally obtained for the VitalStim swallow therapy. It will begin

next Monday and go one hour a day, five days a week for around 24 sessions.   

 

Sunday, September 25, 2005

 

6:00PM

Nick had several doctor appointments with specialists this week and it looks like he

will need to have a baclofen pump surgically implanted to try and control the

contractions from the dystonia.  Unfortunately he can't get an appointment with the

neurosurgeon until Oct. 7 so once again we are on hold.  His wrist is bothering him

so much it just pains us to see him suffer day after day.  The botox, acupuncture,

and oxygen therapy were all tried and to some degree successful with his foot and

shoulder but not the wrist.  He just can't seem to get any relief except when he is

heavily medicated and asleep.   Nick was treated to a therapeutic facial today which

did help him relax for a little while.   

 

We are still waiting to hear from the vital-stem swallow therapist.  It's unbelievable

how long it takes to get things going.  Nick is still struggling with weight loss from

being on the feeding tube.  We have been supplementing but it just isn't enough.   

We finally got speech, and physical therapy reinstated and we hired an occupational

therapist privately.  He is really working at trying to be more independent in his

transfers and daily living.  

 

We are really going to miss "Auntie" Diana who leaves next weekend but are grateful

that Aunt Rainy is here to help with the transition.   

 

Friday, September 16, 2005

 

11:00pm

This week was not one of Nick's best and has been frustrating for his family.  His

physical therapist was only able to come on Monday and Friday for one hour which

just isn't enough.  The special swallow therapy that he needs was postponed because

the insurance companies were not cooperating.  It's hard to imagine how anyone can

deny a young man the therapy he needs to be able to eat normally.  The day after

he was released from the hospital the last time after his feeding tube was reinserted,

his speech/swallow therapist was discharged.  We finally found out today after three

weeks of waiting that they will approve the swallow therapy utilizing electrical

stimulation, which is what he needs to get off the feeding tube.   Hopefully this will

start early next week.  Besides the fact that he is losing weight, he is also developing

a rash they think is a reaction to something in the food.  Seems if it's not one thing

it's another!  The doctor also started slowly taking away some of the medications

that he has been on to try and reduce the side effects which effect the swallow and

speech.  It definitely helped the speech but his wrist was in so much pain from the

dystonia muscle cramps that we had to add some of it back in.  

 

Nick enjoyed visits from several friends this week.  Now that things are slower this

really helps lift his spirits.   

 

Sunday, September 11, 2005

 

3:00pm

It is hard to believe our nightmare started 6 months ago.  It feels like a lifetime! 

Nick's physical and speech therapy was finally reinstated and he is getting used to

the different approach that new therapists bring.  Insurance won't cover occupational

therapy because he is over 18.  I guess being able to use your hands and arms isn't

important when you're an adult!!!  We have been checking out outpatient rehab

facilities for Nick's next phase and hope to have that lined up soon.  Our biggest

concern is trying to get Nick the therapies he needs, and have his meds and food

administered.  Our prayers were answered today when we learned that Nick's Aunt

Rainy will be coming to stay with us when Aunt Diana has to leave at the end of the

month.  We are so grateful for all the wonderful family and friends who have

sacrificed so much to help.  This will really make a difference.   

 

Nick is getting used to the feeding tube but he is not thriving.  He is starting to lose

weight because he just can't tolerate the volume needed.  We are really concerned

and are aggressively working on his swallow to try and help him get back on a

regular diet.  Nick's neurologist has taken him off some of the meds that were

making him so drowsy and he is staring a new med today that should help with the

dystonia.  We keep hoping something will work to give him some relief!   

 

Nick's dad got creative and has built him his own version of a cast for his left foot. 

He took a hiking boot and sawed off the toes and cut out the top of the tongue

where Nick has the wound from the previous cast.  He then built a wooden form that

the boot slides into when Nick is sitting to keep his foot in proper alignment.  As

crude as it is, it seems to be working.  

 

Nick has been doing a lot of drawing which has really been therapeutic.  His mentor,

Lynn McClure, has taken an interest in his art and has arranged for his work to be

shown at the Gold Bar Coffeehouse in Tempe in the month of February.  They plan to

show his art before the accident and then the stages through his recovery.  It is

amazing to see the difference already in his fine motor skills in just the past few

months.

 

Tuesday, September 6, 2005

 

6:30AM

The weekend was pretty relaxed compared to the normal routine.  Nick did have two

sessions in the hyperbaric chamber on Saturday.  Insurance is allowing a nurse,

physical and speech therapist to visit again.  The nurse and physical therapist came

on Monday.  The therapist is not the same one as before and has some different

approaches.  Occupational therapy was denied by insurance so that will be dealt with

individually.

 

Nick is dealing with his feeding tube pretty well so far.  He chews gum, sucks on

lollipops, and a small sponge soaked in ice water to get some flavor and keep his

mouth from getting dry.  He also chews on beef jerky without swallowing it for the

flavor.

 

This week will be a very busy one for Nick with all the therapy sessions, treatments,

and appointments.  The search for an outpatient treatment has taken on new

urgency and visits and consultations are scheduled with several facilities.  

 

Friday, September 2, 2005

6:00 AM

This has been a week of ups and downs.  Insurance cut off Nick's therapy sessions

and nurse care.  The volume of liquid required to provide the needed calories,

nutrients and water is much more than he can consume daily.  The naturopathic

clinic where he is getting the hyperbaric oxygen and acupuncture treatment

reviewed the nutrition and suggested supplements to increase the calories and

nutrition of his formula. He is still not able to ingest what the dietician recommended

but it is better.  We do not want him losing any weight while on the feeding tube.    

 

Except for Tuesday, when he had doctor appointments, some meds were changed

again, Nick has been in the hyperbaric oxygen chamber twice a day and had two

acupuncture treatments this week.  It has been two weeks since the BoTox

treatments and although they weren't as effective as hoped, his wrist is more

relaxed.   He is asking for less pain meds and the sore on his foot caused by the cast

is healing very nicely.  One problem with doing several treatments at once is that it

is not possible to tell which one is giving benefits, if any.  Nick thinks the

acupuncture helps.  We are doing this now because the doctors said that if they have

to go to the next step of medical treatment they do not want the hyperbaric and

acupuncture treatment at the same time.  They ok'd it for now.

 

Thursday we were informed that the in home therapy sessions and nurse care had

been approved for four more weeks.  Unfortunately, the same therapist may not be

available but the four weeks gives time to finish the hyperbaric and acupuncture

sessions.  In that time an outpatient facility must be found.