Sunday, July 31, 2011

Walking, walking, walking .....

Mom has been doing really great the last few days since my last post.  Each day is a similar routine from the previous day.

It's all about healing and getting stronger.  The incision area from the surgery has healed wonderfully.  The PEG tube is holding nutrition really well, which means we are getting lots of calories into her - to help with the healing and strength building.

Walking is the best for her, which we encourage her to do frequently.  Today is a breezy but sunny day here in Napa.  Look - no walker, just a cane!

Mom and Tom walking down Beckworth Drive

Visitors are welcome!  During this phase, until she can be more independently mobile - her days are spent quietly at home.  It brightens her day to have company - so please don't hesitate to stop in for a quick visit.

Wednesday, July 27, 2011

Enjoying her front yard

Sitting on the front porch, supervising the watering of her yard ....

Getting Stronger Everyday

Mom has settled into her home wonderfully.  It's so great for her to be in her own environment, surrounded by her own things.

One of the goals following surgery is to build her strength back up.  Physical therapy began yesterday with visits from St. Joseph's Home Health Care.  She will work with both physical and occupational therapists at home until she is ready for outpatient care. 

The best kind of therapy is her garden!  Tom comes over multiple times everyday and has been absolutely terrific at getting her to walk, walk, walk.  He patiently takes her around the yard, even walking up and down the street to check out what is going on in the neighborhood.

Mom and Tom in the yard
Next week, we will begin our visits with her physicians.  Monday we go to her primary care doctor, Dr. Jewell.  Tuesday we go to San Francisco and meet with an audiologist and Dr. Wang, the ENT covering for Dr. Ryan while he is on vacation.  On Wednesday, we check in with Dr. Manubens - her cardiologist.  We also have an appointment in a couple of weeks with the local ENT, Dr. Healy.

In between all of this, St. Joseph's Home Health Care will be providing visits from physical & occupational therapists as well as biweekly visits from their nursing staff.

She really has enjoyed the visits from her family and friends. I would encourage anyone locally to feel free to stop in for a visit!

Thursday, July 21, 2011

There's no place like home!

Words cannot describe how wonderful it felt today to take Mom home to Napa!!

Mom with Dr. Cheng, reviewing discharge instructions
 Dr. Cheng was one of the many wonderful Resident Doctors at Mt. Zion that oversaw Mom's daily care.  She, along with Dr. Burke, Dr. Pross and Dr. Sidel were absolutely the kindest, most attentive physicians a patient could ever ask for.  We all appreciated their diligence in seeing that Mom received the very best of care.


Mom and Jamie - one of the excellent nurses on 5 North
 Mom had many, many outstanding nurses during her stay on 5 North, as well as in ICU.  Today, Jamie was on duty for her discharge.  These men and women became like family to us over the course of 24 or so days at Mr. Zion.  Thank you, thank you, thank you - you all are exceptional caregivers and we will never, ever forget you!!


Mom and her surgeon - Dr. William Ryan, MD

Without a doubt - Dr. Ryan - has become a very, very special friend to Mom.  She has always been able to bond with her physicians and Dr. Ryan has definitely become one of her all-time favorites.  This man, on his own time while on vacation - continued to visit Mom in the hospital following her surgery.  He stopped in today before she was discharged to give her those special added words of encouragement.  Thank you Dr. Ryan - we all wish you and your bride-to-be many, many years of happiness!

She is FINALLY home!

Now this is napping!!



Wednesday, July 20, 2011

Tentative Discharge Has Been Scheduled!!! Hooray!!!!

Tomorrow, Thursday July 21st, just might be the day Mom gets to go home!  All is looking good as of this posting.  The doctors are all pleased with how her week has gone and feel she is ready to leave the hospital.

The feeding tube problems are not completely resolved but they have improved.  If it needs additional attention, we can deal with that as an "out-patient".

When we are discharged, we hope to walk (or roll in a wheelchair) across the street and meet with an audiologist.  After that - we will be heading to Napa - hooray!!!

Tell me - does she look comfortable to you?

Taking a nap around this place can be challenging


Tuesday, July 19, 2011

SKYPE

Yesterday, Mom was able to visit with her sister Marge via SKYPE.  For anyone that has access to the Internet and has a webcam - this will be the perfect way to communicate with Mom when she returns home.

She spent about 45 minutes on the video call with Marge - she really enjoyed it!!  With ear buds she can hear the sound and watch video through the computer.  It's such a wonderful way to stay in touch with her family and friends.  I would encourage all of you to consider this as a tool to visit with Mom remotely.

Mom visiting with Marge via Skype (Monday 7/18)

We are all brainstorming on finding the best communication solutions for Mom.  The biggest challenge we will have is the telephone.  There are systems in place for the speech impaired, however we would like to try and find something better!  If anyone has ideas - please feel free to email them to me:  pattie.hbs@gmail.com

On the topic of her recovery ..... things are moving along.  We are anticipating discharge at the end of the week.  They are still watching that darn feeding tube.  She seems to be absorbing more and more of the nutrition and we are working towards the transition of care to home.  Margaret and I will be there full-time and we will also have a Home Health nurse stop in to check on things.

Sunday, July 17, 2011

Happy Birthday Pattie

Hi Everyone!  Katie here - Grandma's...13th grandchild (?) and Pattie's eldest (for demographic sake).

Anyway,   I've been asked to give Pattie a birthday shout-out from Grandma and her family, so....


Happy Birthday Pattie!  
Thanks for all you've done and are doing!  We love you!

Saturday, July 16, 2011

This beautiful bouquet was digitally sent to Mom by Lorene, Mary Ellen's daughter that lives in Virginia.

From Lorene to her grandmother:  "Here is the bouquet of Sunflowers that I wanted to give you! Watching them grow inches a day and bloom through your surgery was very special. Enjoy! I Love you, Lorene"

Friday, July 15, 2011

TGIF

Mom spent this afternoon working with the Occupational Therapist, walking the halls and "chatting" on her wipe off boards.  It's been a good Friday.

Mom working with Kim this afternoon
She did very well today with her walking.  She can manage without the walker, just pushing her IV pole.

Mom and I out for a walk

While making our rounds of the ward, we stopped for this shot in front of a board with photographs of all the nurses on 5 North - her new group of friends!

Margaret, Mom and I with photos of the wonderful nursing staff



This one is for Katie and Sara (heehee)

This evening, Cathy came down for a nice visit and the three of us played a few hands of Pinochle.  Mom and I thought for sure we could beat Cathy - but she had the highest score after a few hands!! (and that was after not having played in 15 years).  Mom was again sharp as a tack, not missing a trick!!

She is now resting, watching one of her favorite TV shows - Blue Bloods

A Real Trooper!

Mom has had consecutive good days this week.  She is walking a lot and awake more hours during the day, though she must be exhausted from all the "busyness" surrounding her.

It appears that her PEG tube situation will be addressed soon.  There continues to be too much leakage and not enough absorption by her stomach.  The likely action will be that the IR doctors will put a jejunostomy tube into her stomach at a different location from her first tube.  They will remove the temporary catheter, put in place this past week, and let that site heal closed.  We are waiting for the IR doctors to examine her to see if their department can do this.  This would be the least "invasive" procedure for her.

We are hoping this will be done sooner than later, as this is what is preventing her from returning to Napa.  I will update this topic as we know more.

Mom is incredible.  She has fought through all of the obstacles with such amazing courage!  Her mind is sharp as a tack and she does not miss anything.  She has adapted to her lack of speech very quickly, fervently writing on boards clearly...... what she is thinking, what she wants and how she feels.  We are developing our own signals and expressions to communicate - at times it is actually quite fun!!  No doubt this is very depressing for her at times, but when needed - she pulls her spirits up and gives us a big smile and clever wink.

Besides the writing boards and signals, she has been Skyping and using Face Time with family.   The Internet is WONDERFUL - as it allows her to stay in touch with so many of you.

Thank you for all the and email messages.  And most especially, thank you for all the loving prayers - keep them coming!

Love,
Pattie

Thursday, July 14, 2011

Shopping Day!

Mom has had three good days in a row.  Her feeding tube continues to be an issue, but otherwise she is progressing wonderfully.

After working with an occupational therapist on her abilities to take of her own personal care, I found a wheelchair, loaded her up along with tubes and tubes of IV's and broke her out of 5 North!!!!

We took a ride down the elevator to the main floor.  We maneuvered into the gift shop so she could purchase some gift cards for others.  I think I spooked her a bit, kind of like taking her off road into Lake of the Woods :)



making her purchases at the gift shop

She is now resting comfortably in her bed.

Wednesday, July 13, 2011

Pretty Good Day So Far

Today has been a really good day so far.  Yesterday was very smooth and uneventful as well.

After the doctors' early morning rounds and breathing treatments from the respiratory therapist - Mom got up, had a nice sponge bath and washed her hair.  I put curlers in again today!  She spent 30 minutes with an occupational therapist working on her stiff joints and tight muscles.

Cathy came for a visit soon afterwards.  She returned home from a week-long vacation at the cabin in Truckee.  She had lots of fun stories and great pictures to share with Mom.

Mom and Cathy sharing cabin stories
We let her hair dry out, got it styled nicely and then went for a walk around the ward.

I got the thumb up - hair is good!
I talked her into walking without the walker - just holding onto the IV pole
Checking out a prison patient (with 3 guards!)
She is resting now comfortably in her bed, attempting to sleep - despite all the noise surrounding her !

Monday, July 11, 2011

Morning Gardening .....

When Mom got up this morning, the first thing she asked for was for me to go out to the nurses station and bring her the bouquet of roses she had given them on Saturday.  She wanted to freshen up the arrangement for them!


When you look at these pictures of her, keep in mind that her head and neck areas are still quite swollen from the surgery two weeks ago.  We notice it to be diminishing daily.  Her mouth is still sore, so she is not yet wearing her dentures.

The general surgeons as well as the ENT doctors have been in this morning.  All is going well.  Her feeding tube accidentally "popped" out yesterday afternoon.  This actually was a GOOD thing.  Because it came out on its own, the decision was made for the doctors!  Sometime today, they plan to put in a NEW PEG TUBE - Hooray!!!!  They expect to insert this into the same hole as the old one.  The procedure should be painless and easy for Mom.

It's a very foggy day here in the City.  We are sitting here peacefully, reading the newspaper and looking out at the skyline.

Sunday, July 10, 2011

Sisters!!

Jean, Sr. Anne and Mom (taken Sunday @ 3:00pm)
Sr. Anne drove to Napa this morning to pick Jean and Mary Anne up - she brought them both down to the City for a visit with Mom.  They arrived about 2:30 pm. 

It was soooooo wonderful for Mom to see them.

They spent about two hours chatting (via writing boards), catching up on all the local Napa news and gossip.  After their visit, Sr. Anne drove them back to Napa.

Mom is resting comfortably now, and maybe will watch Primetime later this evening.

Saturday, July 9, 2011

Picture Day!

After the doctor visits earlier today, Mom got cleaned up.  Since they washed her hair also, I took advantage of the opportunity and got some curlers in her hair :)  

This afternoon, Tom and his family came down for a visit, as well as Sr. Anne.  With her hair all styled and lipstick on - we decided to play with the Ipad and shoot some pictures!

Check out the lovely scarf Sr. Anne brought to her!


Mom and Tom, teaching her texting short cuts

We are all trying to cram in while Mom takes the picture




Thank You Tyler!

Mom, Margaret, Tom and I
Mom and I

I got the "Thumbs Up" for doing her hair

I think we wore her out



Surgeons Advice

The Gastro Surgeon was just in to review Mom's PEG tube.  He feels that the tube should be left alone for a couple more days.  They will contain to drain her stomach, allowing the tube site to dry out and heal.  His thought is that the hole will shrink to a point that they can resume it's use - hopefully by Monday.  If this works, there will be no surgical intervention.

Dr. Ryan also called in to check on her.  Remember - he is on vacation and out of town - still staying in touch with her on a daily basis!  He agrees with the surgeon on giving the PEG tube "a rest", but would like for her to receive nutritional supplementation by IV (TPN).

Keep your fingers crossed!!
Today is Saturday, July 9th.  It has been 11 days since surgery and Mom is really doing quite well, despite the complications she has experienced thus far.

Yesterday's challenge was her feeding tube.  The tube has been a source of annoyance for her since it was originally put in back in December.  It has leaked and occasionally been painful.  Here at the hospital, over the last several days - the pain and leakage has increased.  They took her downstairs to Intervention Radiology yesterday afternoon to see if they could correct these issues for her.

What they discovered was that the hole in her stomach is larger than the tube.  The hole should be just slightly larger than the tube, but hers is much larger.  The contents of her stomach; acids, medications and nutritional feedings - are leaking out.  These fluids are causing a skin irritation that is painful for her.  The tissues around the hole are also inflamed.

Her team of doctors have stopped the use of her feeding tube and are consulting with the UCSF General Surgeons as to what would be the best solution for her.  She needs to have good nutrition for healing.  Many of her medications are also administered through the tube.

As of right now, (about 10:00 am) we are waiting to hear the doctors' recommendations.  We expect something will be done this weekend so that nutrition and medications can be resumed ASAP.

Otherwise, she is doing great.  Sleeping well at night, sitting up in her chair for several hours during the day, taking walks around the ward, reading newspapers and magazines, playing cards and board games and Skyping with family!

We will keep you all posted as we know more.  Keep the prayers coming her way!!

Love,
Pattie

Friday, July 8, 2011

The Good Day Continues

Thursday was a very good day for Mom.  She seemed to be more alert and chose to participate more in what was happening around her.  In the afternoon, she and Margaret even played a few hands of Rummy after reading the newspaper.

Mom reading the daily newspaper (Thursday 7/7/11 afternoon)

Mary Ellen sent me some photos that were taken during the days preceding Mom's surgery.  Here is an assortment of family gatherings held at the end of June.


Mom, surrounded by 5 of us (Monday evening at St. Rose 6/27)

David Bennett showing Mom a digital recorder they used the weekend before surgery to record Mom's conversations

Mom, surrounded by Cathy and my children and some great-grandchildren

Family happenings..... weekend of 6/25

A visit from big sister, Jean

Thanks Mary Ellen for the photos!!

Thursday, July 7, 2011

A Good Thursday So Far

Complication Identified

I mentioned earlier that Mom has had some anticipated "bumps in the road".  One of these bumps has been identified as a "leak" in the area of her restructured esophagus.  This most likely occurred while she was having trouble digesting her nutrition through the feeding tube.

Because Mom had prior radiation treatment, there was an increased risk this could happen as the burned and scarred tissues can be slow to heal.  In most cases, no intervention is needed except to treat with antibiotics.  The "leak" should heal on its own.  They will monitor this closely.  This will extend her hospital stay by approximately one week.

Other than this complication, Mom has been working very hard with the respiratory therapists, physical therapists and occupational therapists - trying to get herself strong again.  Next up, speech therapy!

It's like a revolving door here in her room.  By the time she is just about finished with one therapist, there is another waiting outside her door for their turn with her!  She has been a real trooper through it all.

I know she will continue to persevere and overcome this latest obstacle.  Keep the prayers coming!

Love,
Pattie

Wednesday, July 6, 2011

Congratulations to Sr. Anne!

Sr. Anne brought wonderful news to Mom this afternoon.  She received a letter from the Archbishop of San Francisco, the Most Reverend George Niederauer notifying her that our Holy Father, Pope Benedict XVI has conferred upon her the Pro Ecclesia et Pontifice Award for exceptional ministry to the people of the Archdiocese of San Francisco.  This special mark of favor of the Holy See is given to those who have diligently served the Church at the local level.

Sr. Anne showing Mom the letter she received

We are all so proud of Sr. Anne.  I know Grandma and Grandpa Bertain would also be so proud of her.  She is an inspiration to all of us in recognizing the importance of social justice for those less fortunate.  Her work at St. Dominic's over the years has impacted so many lives.

Who could ask for better role models?

Congratulations Sr. Anne - we love you and are so proud!!!!!

July 4th - Evening Fireworks

Last night, Mom was able to view 4th of July fireworks from her window!  Margaret raised her bed to the highest point so that she could look out her window to the right and see the beautiful display in the sky.

The view from Mom's hospital room

Monday, July 4, 2011

A Sunny 4th

Enjoying rays of sunshine!!!



Monday morning, looking out towards St. Dominic's





***** Happy 4th of July *****

Mom is up in her chair this morning.  She has had a visit from Dr. Cheng, Dr. Pross and Dr. Goldberg, who feels she is doing excellent despite a few anticipated bumps along her road of recovery.

These "bumps" are issues such as dry mucous, low blood pressure, lack of tolerance to her nutritional feeding and some added fluid in her chest cavity.  Her left shoulder has also been very sore.  Today's labs and chest x-rays show improvement from her prior daily tests.

Our goal today is to have her spend the day as close to her normal routine as possible.  This will mean sitting up for long periods, taking short walks around the ward and doing some physical therapy.

I will post up some photos of her later.

Happy 4th!

Pattie

Sunday, July 3, 2011

A Special Visitor

Mom is currently having a very special visit with her very special friend from Napa - her speech pathologist, Natalie Baggs.  Natalie was here in the City today so she came to see Mom.  They have become quite good friends!

Natalie & Mom, Sunday July 3rd
Mom touches so many people with her wonderful spirit.  Everyone that comes in contact with her - loves her!

Saturday, July 2, 2011

A Very Good Day

Another day is coming to a close, another day moving forward in her healing and another day closer to returning home.  Each day, as difficult as they are, Mom is regaining her stability and strength. 

It truly does amaze all of us just how incredibly strong she is.  She can be at a "level 5" of pain (which is a 10 for the rest of us), on the verge of tears - and a few minutes later - she is able to dig down deep and find a reason to smile and even laugh.


Mom and her four daughters
 In the picture above, you can see the HME filtration hose that I mentioned in an earlier post.  This has really helped to keep the secretions in her lungs moist, making it easier for her to cough.

Mom had a visit from my husband Tim today, and later in the afternoon watched the Nascar Sprint Cup race, cheering Jeff on to a 6th place finish - while at the same time getting text messages updating her on James' status at his weekly race.  She doesn't want to miss out on anything her family is doing!

Tomorrow is Sunday - hard to believe she has progressed SO FAR since the surgery on Tuesday.

Thank you for all the love and prayers - keep them coming!

Pattie

Saturday

Mom is progressing really well.  It's about 10:30 on Saturday morning (7/2) - the doctors have been in to check on her and are once again pleased with how she is doing.

Yesterday was a day full of ups and downs.  On the positive note; she was up most of the day in a chair and also walked around the ward.  All of this upright movement is good for her airways and circulation.  The activity led to a restful night.

It can be quite frightening for her at times with all of the strangers surrounding her, the unknowns of how the laryngectomy affects her and just the overall overwhelming sense of change.  She is handling it all like

ONE TOUGH CHICK

There have been some post surgical issues that the doctor are "on top of" continuously.  Having prior heart, lung and kidney problems make a major procedure like this a bit more challenging - but they have been outstanding in their care and follow up, closely monitoring every minor symptom and change.

She will be getting up and walking around soon and will have more physical therapy later in the day.

She is sending her waves of hello and thank you to all of you!

Love,
Pattie