The next Step Forward

August 8, 2013

This past week’s labs have shown continued stability and progression.  At the follow-up appointment today, Dad was “Discharged to Vegas.”  While in Vegas, he will still be monitored with weekly blood work and clinic visits.  Trips to UCSD are still a must, just less frequent.  The next one is in 2 weeks and at each UCSD visit, they will advise when to return.

Now to move onto the next chapter: “Post-transplant  and readjustment to home turf and doctors.”  Thanks for all your prayers, support and love!

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Legoland

August 7, 2013

The other day we went to Legoland with the Trivedi’s and my cousins from Oklahoma. We had an awesome time. We went on a lot of roller coasters.  The last time we all went to Legoland was when Maia wasn’t even born. Maia said to my mom, “Legoland is fun!” Maia and Kal really had a fun time. Rohan could go on a few rides and was smiling the whole day :) .

That night we stayed at a hotel with Uncle Jhun, Auntie Mendy, and three other kids (Lexi, Aubri, and Haylen). The next day we went to the Legoland Waterpark. There were some waterslides that we went on. It was also fun to go on water rides inside Legoland.

In the evening, we went to The Cheesecake Factory for Uncle Jojo’s birthday. We met up with my parents there so we could go home. My cousins stayed at our house that night. The next day we walked to the park and also played wii. It was sad seeing them having to go back to Oklahoma. But hopefully they will come back soon.

 


Welcome to Fabulous Las Vegas Nevada

August 1, 2013

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After 51 days, Dad and Lynne finally get the chance to return to Las Vegas.  Although it was a short trip (48 hrs), it was nice to be home.  But the follow-ups are still required.  Next lab appointment: Sunday August 4, early morning.

 


My Dad…brother, father, grandfather

July 14, 2013
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This entry is dedicated to my dad.


october2011

During a visit to the doctor in October 2011, a “spot” was found on his liver.  After months of tests and procedures it was confirmed: Liver Cancer.  He was seen and treated by an oncologist in Las Vegas, NV.  Many options were considered however, they would involve a transfer of care to a facility that would be able to accomodate greater options.  With the limited resourees available in Las Vegas, doctors would have him procede with the first procedure a chemoembolization.

april2012

While in Vegas, dad’s oncologist referred him to a liver specialist from UCSD.  This satellite clinic was fairly new and proved to open wide doors.  Moving forward to April 2012, our first appointment on the UCSD campus.  The verdict?  Tumors found in the liver most often grow in places that are not easily removed through surgery.The ultimate plan was liver transplant.  Once on the list, one may receive a call immediately, or not for several years.  Most LT patients wait about a year before they receive a transplant.  So, 2 things to focus on: get on the list and procede with treatment while awaiting transplant.

Patients are placed on a transplant list after thorough evaluation.  Patients list placement is determined by their MELD score. The transplant team thought it best to down-stage the tumor.  In comes the intervention radiologist and Yttrium-90 was introduced to us.  This process involved blocking all vessels supporting the tumor except one (TARE).  That last vessel would then be filled with Yttrium-90 and eradicate the  cancer.  Sounds pretty good, right?  Only thing is that it also affects the surrounding tissue in the same manner.

The first TARE attempt  was quite successful.  However, just as his doctors had suspected, the tumor was receiving nutrients from more than one vessel.  A second attempt was made and 99% of the tumor was affected.  The team, however, wanted to procede with treatment until 100% was removed.
Reflection of all treatments will show us that dad would go on to have a total of 5 procedures directly aimed at this tumor.

Another requirement to maintain on the transplant list is thorough follow–ups.  The team needs to make sure that your body can withstand  the transplant surgery as well as the recovery.

Needless to say, there were many trips from Vegas to SD.  The many trips also allowed opportunity for different family members to accompany dad: 3 sisters, 1 brother, 2 daughters and sons-in-law, and yes, even the 6 grandchildren…although they enjoyed the comforts of the lounge and gift shops.

December2012

This new life of traveling back and forth for procedures and check-ups almost seemed routine.  The holidays were spent with most all of the Pakilit Clan under one roof.  The new year continued with visits and check-ups.

You may wonder, “How did all this treatment affect ones body?”  For the most part, all systems were a still a go.  While most ailments were fought off by medication, fatigue was one of the main villains.  Another feud to battle was the increase of pressure on the pulmonary artery.  Through careful evaluations, the pulmonary and cardiology teams continued to give their blessing.

June2013

Dad was scheduled to receive his 5th procedure, a transarterial bead embolization (TABE).  On June 13 he checked into UCSD Hillcrest.  This procedure would require overnight observation. Everything went as planned, and dad was discharged early afternoon Friday.


The CallJune14

Lynne was driving Dad back to Loma Linda where he would stay the weekend to recuperate before heading back to Las Vegas.  Trivedi’s would join us on Sunday for Father’s Day.  As they were approaching Murrieta, they got the call that a liver would be available.  Ironically, it was coming from Las Vegas.

With no hesitation, they turned the car around and would check back in to prep for surgery.  Notifications went out to the family and before sunset, all those in the southern Cali area were at his bedside.

Despite all the preparation, no promises were made.  The liver still had to be inspected by the procurement team, withstand transport, then re-inspected by the transplant team.  The liver would arrive 10 minutes prior to surgery; which was schedule at 0400 Saturday June 15, 2013.

TransplantationJune15

The surgery routinely takes anywhere from 3-10 hours.  At 0410 dad was wheeled out of his room and to the OR.  We would find out later that the new liver appeared better than anticipated and would also provide a replacement artery to one that had been scarred from numerous procedures.

Recovery

There is no telling how one will respond to a transplant.  Various factors include past medical/surgical history, response to prior treatments and current state of health.  Pre-op doctors informed the family that dad would require breathing assistance through a tube down his throat (intubation) while he was asleep during the surgery.  Without any guarantee, they also said he would probably need breathing assistance for the first 24-48 hours.

Amazingly enough, we were all able to visit dad in the ICU–grandkids and all.  Dad arrived in the ICU between 11:30 and 12:30.  Lynne had been at the hospital and was the first to see him once he was settled in his room.  But by mid-afternoon, the bunch was able to visit him in small groups.  Dad was doing so well, he didn’t need the breathing assistance!

Babysteps

Post-op Liver transplant leaves you with many goals: breathing on your own, drinking fluids, eating solids, sitting up in bed, sitting in a chair, taking steps, walking down the hall, tolerating all the new medications, and just making sure all body systems are adjusting and getting along with each other.  Most complications occur within the first 72 hours.  But dad was progressing as steady as possible.  

June22

Before we knew it, dad was transferred to a “regular” unit and was 1 week post transplant.  Patients are usually discharged 10 days after the surgery.
The week marker included a reunion of the Pakilit Siblings.  With 2 of the siblings in different regions of the globe, this was definitely an infrequent occurence.  Day company was kept with the siblings, while Amber and I held daughter duty Friday and Saturday night.  It was the least we could do to provide Lynne some time to sleep in a bed, do some laundry and eat something other than hospital cafeteria food.

Speaking of which, while Dad, Amber and I had movie night, Amit and JD corralled BT kids and made dinner set on fine china.  Talk about Superdads in the works!

Monday would hold a regular work day for the family, but for dad it was DISCHARGE DAY!

Home Sweet Home…sort ofJune24

In the first several weeks after discharge, dad is to visit USCD for follow-up labs/exams/medications/etc.  FOUR TIMES a week!  Many of UCSD transplant patients come from afar.  To make the trek easier, UCSD Bannister Family House has open doors that provide a welcoming place to stay.  Given the unexpected timing, it was not a surprise that the House was full.  Dad and Lynne had been on the waiting list since it was known that the transplantation would take place.  However, the next available room would not be until July 2.

One of the perks of having family that travels for work is that they quickly accrue hotel points.  Amber and Amit were able to provide a few nights at a hotel close to UCSD.

2 weeks Post-transplantJune30

getting my walk on

Babysteps to recovery have now become larger.  The Trivedi’s were able to visit and noticed a large improvement since the previous week.  Dad was even able to get up and answer the door.  His pain has been improving so much that he even forgot to use the cane.

First Post-transplant Holiday…Happy Birthday America!July4

Fun, food and family.  Hosted at the Trivedi’s, we hung out, ate good food and played with pops and poppers.  To help kids keep still for photos, we prompted them to sing the National Anthem.

Bannister Family House

A temporary new routine is finally setting in.  The view is a great one and the summer temperatures of San Diego county are quite enjoyable.

room with a view


Pakilits: Dodong, Abner, Morie, Dely, Ily

using just a cane

July8: improving results and no more cane!

my living room in Bannister House...I do believe in Miracles

July 14: everyday is a step forward

Thank you for sharing our story…

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You haven’t visited Wisconsin if you didn’t try the CHEESE!

June 13, 2013

After 5 days away, it’s nice to all be under one roof.

After 11 years of being an L&D nurse I have made the transition to the informatics side of health care.  It all started when I moved into the clinical nurse educator role for my department in Dec. 2011.  The prior year, LLUMC had made the decision to change their electronic documentation system and Nov. 2012 would be the time to train 16,000 Loma Linda employees.

Several departments sent someone from their team to join the training group that would train the rest of the hospital and I was one of those.  At the end of May 2013, I accepted a full time position with that department.  This position requires me to be certified with the application…that certification process takes place in Verona Wisconsin.

Our hostess at Edelweiss Cheese Shop gave us an awesome experience.  My fellow Epic classmates and I sampled several different cheeses and learned a little about the local dairies.  

pictured above:  Portobello Cheese, Mona, 15 year aged Cheddar

 


Competition

April 20, 2013

This morning Kailee and Maia were putting together a puzzle.  They took turns placing a puzzle piece one at a time.  Then Maia says, “I’m very good at puzzles, so, I think I’m gonna win you!”

lol, since when was puzzle making a competitive sport?

 


A Star has emerged

For many, it’s hard to believe that Maia is our shyest kid.  On her own she can be quite reserved, but when her sisters are around, she observes their comfort level and follows suit.  Maia comes out of her shell when her cousin Kal is around.  Their conversations are very entertaining.  The last visit was for about a month last winter.   Usually once Kal goes home, Maia is back to her quiet self with moments of spotlight. However, Maia’s voice seemed to stick around this time.

One day Maia and I were searching for songs on iTunes store.  iTunes allows you to preview a song before purchasing it.  About three seconds into the track, Maia belts out in her best Christina Aguilera voice, “Whoa-oh-oh-oh-oh-oh….”  I felt like this was a fairly new song, at least in our family.  So I was extremely amazed that she new it, let alone was so familiar with the song by the first few beats.

feel this moment

 


Spring Break 2013

March 28, 2013

I love that our girls are so easy to please.  Give them some water and time with their parents, and they’re usually good to go.  With the current work schedules for JD and me, we didn’t have too much planned for them during the week of Spring Break.

Amber just happened to have a short notice business trip to Palm Springs the first weekend of Spring Break.  Her conference was being held at the JW Marriot Desert Springs.  The many pools, restaurant, shops and golf course make this resort a favorite for spring breakers young and young at heart.  Our room had a balcony overlooking the man-made “lake” that featured swans, ducks, and a boat ride.  But like I said, swimming is the highlight for jklm.

They managed not to kill each other throughout the week.  Housed by the Sheraton Universal for 2 nights, we journeyed off to Hollywood to end out week.

A lazy morning starts off with a classic game of Kongi.

 


My 80′s chicks

March 19, 2013

If you attended an Adventist Academy, then you are no stranger to the traditional Spirit Week.  I had to give a chuckle when Lilli asked, “Mommy, what’s duh-KAYD day?” (decade day…lol)  Me: “Huh?  Ohhh, deh-kayd day.”  Unfortunately, Lilli didn’t have the chance to select a decade.  She had a field trip to Legoland and wore her field trip shirt.  Jasmine and Kailee covered it pretty well with leg warmers, puffy bangs, crimped hair and high pony tails.

 


The Adventures of Maia

March 1, 2013

Maia has proven to be one of our most imaginative kids.  Her creativity is far more greater than mine ever was at her age…well, even now maybe.  Lately she’s been coming home from school telling us where she has traveled and what she has seen (mostly trips that involve the zoo, jungle, or a safari and the animals that were there).  Being the youngest of 4 hasn’t minimized her leadership skills either.  Her teachers say she leads out their imaginative play in the classroom and on the playground.  And other parents that we see at drop-off and pick-up say Maia’s name comes up frequently in their homes.