One More Day

Mom is officially off all IV drips and monitors.  She is just getting medications through the NGT and she is eating very well now.  

Dr. Borbon took out Mom's surgical staples today.  She will be able to remove her bandages tomorrow morning and leave the scar exposed.  It is mostly healed already.

I spoke with mom's cancer doctor, Dr. Parra- who took over for Dr. Lopez, and he suggested we not delay mom's chemo treament because the cancer will repopulate mom's body if we wait too long. Waiting for Loma Linda to admit her when she arrives mid-February is not ideal.  We must stick to the chemo treatment schedule as closely as possible.  The operation already set her back 3 weeks.  We can not afford to lose any more time.  

She may not have chemo until 2-3 weeks after surgery.  This lands during the first week of February.  She will need 2-3 weeks to recover from chemo before she can fly to the states.  

I'm going to schedule mom a chemo appointment three weeks from the day Josep has to go back to the states.  If our main goal is to make sure Mom can go home with Josep on February 19th then I will schedule mom's chemo, even before Josep gets to Makati, to make sure she has enough recovery time to fly.  If we wait until Josep arrives, Mom may not have enough recovery time and may not get a clearance to fly.

Josep, this means you may not have to rent a hotel room in Makati.  Once I make the chemo appointment tomorrow morning, I will let you know for sure.  If mom has already had chemo before you arrive, you will go straight to Masinloc.  You can help her recover at home.  Also, dad said he will be the one to fly with mom in Business Class and that you may buy two round-trip tickets for yourselves in Economy Class.  You can work this out with dad if you don't like this plan.  The best way to reach him is through his cell phone.  

Medical Records for Loma Linda

I was able to collect almost all the paperwork necessary for Mom to transfer to Loma Linda.  The only thing I am waiting for are her oncology reports which should arrive by tomorrow morning.  Auntie Myra will be expressing mom's pathology slides to me, which I will forward to Loma Linda when the time comes.  

Preparations for Mom's Discharge

Israel and I went to the supermarket to buy mom two weeks worth of adult diapers, baby wipes, disposable gloves, disposable bed protectors and baby powder (mom's request) to make sure mom has no excuse to try to use the restroom upstairs.  I have talked to mom and dad about the importance of keeping mom from being left alone.  I have asked her to stay either laying down or sitting up until she is stronger.  

I will be visiting mom and dad for an hour or two before we depart for the airport tomorrow.  I will be reminding them of how to contact us through cell phone or iPad.  

It's been an amazing trip full of ups and down.  I can't wait to tell you all the stories we've collected during our stay.  The Philippines has grown on me.  I'll be looking forward to my next trip here when mom is healed and ready to come back.  

Until next time...

Hospital Surprise

Thanks to the generosity of Auntie Nelda and Uncle Resty's family, we were able to bring Auntie Norming to Makati Med to make a surprise visit to mom.  Uncle Resty's family rented us a car and hired a driver to pick us up from Makati (a 6 hour drive), drive us to Masinloc (another 6 hour drive), drive us back to Makati with Auntie (another 6 hour drive the next day), and then let Auntie Norming sleep in their home in Pamatawan (half way to Candelaria - 3 hours) and then brought her home to Candelaria (an additional 3 hour drive) the following morning.  Thank you Isaac Family for this amazing gift to my mom.

The two sisters were so happy to see each other.  It would've brought tears to your eyes seeing them console one another.  What a beautiful sight.  

Family History

We took a 24 hour trip to visit Uncle's Resty's home in Pamatawan and Mom and Dad's house in Masinloc.  Here are a few highlights.  We took tons of pictures but I will only post a few.

Jordan with Uncle Resty's Mom 

She is 95 years old.  She is Jordan's Great Grandma.

Jordan with Uncle Resty's Aunt

She is 88.  She is Jordan's Great Grand Aunt

Jordan with Uncle Resty's Aunt, Jordan's Great Grand Aunt

Me and Jordan with Mom's Sister, Auntie Norming, Jordan's Grand Aunt

When we get home, I'll share all the pictures via slideshow.

One Drip Left

I'm back!

Mom is doing better again today.  She is having regular bowel movements and she is down to one drip (Kabiven - nutrient supplement).  We are only awaiting clearance from one more doctor, Dr. Benitez.  He is the main doctor in charge of all the specialist doctors who have been tending to mom.  I anticipate her release to be some time this week.  I'll keep you updated day by day (while I'm here).  

I have one more full day in the Philippines.  Our flight leaves in two days.  I'll be taking care of Tricare billing tomorrow, getting the doctor to sign Josep's paperwork for her absence, and getting the medical records necessary for Loma Linda.  Wish me luck!

Discharge TBA

Mom is getting better each day.

Mom's catheter was removed today, which means her output is a healthy amount and they no longer feel the need to test and measure her urine each day.  

Mom is down to two IV drips, Kabiven (nutrient supplement) and PNSS (I don't know what that is).  Both IV's (in both her arms) were removed and mom only has her intrajugular line in place. 

The results for mom's CT scan came in.  She does not have cancer in her brain.  Everything looks normal.

Mom's discharge date is nearing.  The doctors are aggressively trying to prepare mom for release.  

So far mom's orthopedic surgeon says she is ready to be released.

Mom's endocrinologist (for diabetes) is ready to discharge her.

Mom's cardiologist says mom is ready to leave.  

The internal medicine doctor (for her previous infection) gave mom clearance to leave.  

We are just waiting for her oncologist and the dietician to make their final decisions for a discharge date.

The dietician wants mom to be able to consume the same amount of calories the Kabiven has been giving her intravenously.  When she can do this, they will remove the Kabiven drip and then the NGT (nasal gastric tube - feeding tube) and release mom from the hospital.  

Mom got a sponge bath today and was happy to be "fresco". She smelled like baby powder when I came in this morning.  

Dad, Uncle George and Israel went to the US Embassy today to see if Auntie Ne (whose real name is Princessita) can get an emergency VISA or a worker's VISA.  We have to get online and apply for her.  We're doing that tonight.  

Kuya Sharon's mother-in-law had a medical emergency in Quezon City and was not able take us to Zambales.  Israel, Jordan and I will be going to Pamatawan tomorrow to deliver a message to his nanay. We hope to be able to see mom and dad's place on the same day.  

The stress level here is lowering each day but mom's discharge date is presenting a new set of challenges.  I am thankful for family members who do whatever it takes for mom's sake.  Thank you, Kuya and Josep, for taking endless phone calls in the middle of the night and during work to problem solve with me.  You guys are the best! 

Signing off.

Zambales

I may be "off the grid" for the next two days. Kuya Sharon has offered to take us to Zambales in his car since he is already in town (in Makati) and going home today (to Zambales).  I have Mom's blessing to go.  She wants me to see her house. Dad also wants me to see his land.  We're leaving today at 2pm and coming back on a bus tomorrow.    Kuya Sharon wants to take us around for half a day.  I was hesitant to leave mom but since she had such a good day yesterday, I think she'll be fine.  Plus, if mom comes home to the states to live there permanently, I may never have a chance to see their place.  I'll take lots of pictures and post them when I get back.  I'll be seeing mom before we go today.  

Israel and Dad, and Uncle George are at the US Embassy right investigating whether or not we can bring Auntie Ne to the states.  I'll have an update about that when they get back.  

Josep, here is the link to the place we rented.  It is smaller than it looks but we are happy here.  It is half a block from the hospital.

https://www.airbnb.com/rooms/1535773?checkin=02%2F01%2F2014&checkout=02%2F22%2F2014&s=5LIT

Good Day

Today was such a good day for mom.  

Five nurses came to put mom in a wheelchair.  Mom took a ride around the hospital for a good 20 minutes and came back to her room.  She was so happy!  I wish I had a picture to share with you.  I'll try to take one tomorrow of her daily ride.

Mom ate well and she got all her medications and supplements.  She loved her macaroni soup!

Overall, mom was awake, alert and happy.  This has been the best day so far.  

Double kisses for mom!

Ups & Downs

Today had a lot of ups and downs.

Mom was awake most of the day today.  She was not drowsy as she has been in the past three days.  

The dressing on mom's leg has been removed.  The swelling has gone down considerably.  It is still warm to the touch.  

When I arrived to mom's room, the doctor had already inserted a nasal gastric tube.  We were quite disappointed because she ate so well the night before, and she has been taking her meds.  Dad had signed a consent for this to be done a few days earlier when mom was rejecting the hospital foods and spitting out her meds.  Yesterday was her first day to eat all her food and swallow her medications.  This is a picture of mom getting her meds via NGT.  As you can see she is so uncomfortable.

Later in the evening Israel was able to talk with Dr. Ansen and he agreed to allow mom to eat real food as long as it is soft and in small quantities with the NGT in place.  Mom was so happy about this.  This is a picture of mom eating her dinner.  

Mom is now getting her nutrients from intravenous Kabiven, prescribed formula through the NGT feeding tube, and oral food intake.  She should be better in no time.  

Following is a picture of all the foods mom would not drink/eat and are part of the reason for why mom has an NGT now.  

She would not eat the prescribed foods but she would eat rice with flavored broth with soft vegetables from the hospital cafeteria.  Now she is consuming the doctor-prescribed liquid nutrition and meds but she is able to eat a few things she likes too. 

Mom finally was taken for a CT scan today.  We should hear about the findings within the next one to two days.  It should determine whether or not mom has a tumor in her brain.  

I'm sad to report that even though mom had an NGT and ate a little bit as well, she was still showing signs of disorientation.  She was very confused before I left for the evening.  It is so hard to see mom like this.  She couldn't figure out why she was in the hospital and kept telling us to take her home.  Dad does not know how to answer her when she talks nonsense.  I told him to tell her what she wants to hear until she falls asleep.  I miss mom even as I type.  I wish I could sleep next to her in her bed.  

I'll post the CT Scan results as soon as I see them.  It's been a very long day.  Until tomorrow...good night!

Josep's Arrival

Dear Josep,

Because Dr. Benitez wants mom to stay in the hospital for another 2 to 3 weeks, it would be nice for you to come and care for mom after I leave.  

My main objective for your visit is to bring mom home with you when you leave.  We need to time your arrival just right so that you can support mom through her next chemo treatment, help her to recover from it, and then take her home with you.  

If you come too early, mom may not recover in time for her to fly home with you.  At first I wanted you to come right when I leave but I'd rather have a small gap between my visit and your visit if it means you will be able to bring mom home when it is time for you to depart.  

I know you only have three weeks off.  Mom will have chemo in approximately three weeks from now.  Let's think about when the best time is for you to come.  Let's make it so she has enough time to recover from chemo.  

Mom's oncologist will not schedule a chemo treatment (give an exact date) until her bloodwork looks better.  He just estimated 2-3 weeks more from now.  

I think mom and dad will be fine at the hospital when I leave because the doctors are just trying to nourish her and restrengthen her.  The worst part (her surgery) is over.  Let me know what your thoughts are. 

Options

Auntie Lori and I discussed whether or not mom should stay in the Philippines or come to the US. 

Pros of Staying in PI:

1. Mom is getting excellent care at Makati.  The doctors and nurses speak mom's language.  Their bedside care is top notch. She has nine specialists and two nurses.  She will not get this kind of service in the US.

2.  Auntie Ne is able to help them 24/7 at an ultra-affordable rate.  A full-time caregiver in the states will cost several thousand per month.  A home-care nurse will cost about $1000 per month.

Cons of Staying in PI:

1.  Dad will have to find a rental close to Makati.  Mom will need to be within close distance to the hospital at all times.  They will not be able to live in Zambales any longer.  Mom's house is not suitable for her condition (too many steps and danger zones) and there is no dependable transportation there if there is an emergency in the middle of the night.

2.  Dad will have to pay 25% of all medical services since Tricare only covers 75%.  Not all doctors are accredited by Tricare and that is an additional cost.  

Pros of Going to the US:

1. Dad will not have to pay anything out of pocket for any of mom's medical services.

2. Mom can go to a stomach cancer specialist at Loma Linda.

3.  We will all be close to mom and dad and we will not have to spend thousands of dollars to visit mom when she is sick.

4.  If we do not take mom home now, while she is somewhat well, if her health declines, she will no longer have the chance to fly home to be with us in her last months/years.

Cons of Going to the US:

1.  Dad and mom will live by themselves (dad does not want to live with me permanently) in an apartment without Auntie Ne (unless we can get her an emergency visa).  Who will wash their clothes and clean their house?  Mom is no longer able to do these things independently.  I offered for mom and dad to live with me so that I could do their laundry, keep the house clean, and cook for them (things I already do) but Dad does not like depending on anyone.

2.  A home-care nurse will be expensive.  A caregiver might be affordable.

At the end of our conversation we decided that 

"If we do not take mom home now, while she is somewhat well, if her health declines, she will no longer have the chance to fly home to be with us in her last months/years."

was the most important deciding factor.  Does this sound right to you?  It was important for me to really lay out the options so that we don't make emotional decisions that may not work out in the long run.  If we bring mom home, we will all have to put in the time and money to support mom and dad emotionally and financially.  

One more note...Dad is trying to sell his land in the Philippines so that it will pay for the majority of expenses in the first year.  

Let's get ready for the coming year.  It will surely test us all.

Latest Update

The swelling in mom's let has gone down.

Moms orthopedic surgeon helped mom to sit upright today. Her legs were hanging over the side of the bed. She did well. We will have mom sit upright one more time tonight. Tomorrow we might have mom take a ride on the wheelchair tomorrow. He would like to discharge her within the next one to two days but he is only one of ten doctors to give a clearance for discharge. 

Moms endocrinologist said her infection has cleared up. She would like to prescribe one more round of antibiotics to be safe. 

Dr Benitez would like to keep mom in the hospital to build up her strength before chemotherapy. He is prescribing a feeding tube but mom refuses to have one inserted. We have all persuaded her to allow it but so far we've had no luck. She would recover more quickly with this but mom would no longer be able to eat by mouth. Mom hates feeling like a helpless specimen. She wants to eat like a human. She just ate very well on her own. And she has promised to take her oral meds. She has been keeping her promise so far. 

Auntie Ne is very devoted to serving mom. She stays with mom 24 hours a day. 

The EEG (brain wave) test showed an abnormality and Dr Alvarez has ordered a CT scan to explore whether or not there is a tumor in moms brain. We are awaiting the test results. 

Here is the back of mom's head.  She is balding from laying down all day.

We are also awaiting the bone biopsy results to see whether or not there is cancer in moms broken femur. 

Although mom is recovering from her surgery and her infection is cleared up, Dr Benitez would like to make her strong enough to withstand her next chemotherapy session. She will stay at Makati for another two to three weeks. She will not be able to go home with me. 

I will be leaving in one week. Josep can come here and take over care for mom. Dad needs a lot of support in making medical decisions for mom and we need a family member liaison to inform those of us in the states on what is happening. 

Currently, mom drifts in and out of sleep

But when she is awake she is alert and able to conversate.

Question

Can someone please find out if Tricare or Medicare will pay for a caregiver or a nurse to check on mom at home in the states. 

No Fair!

Meanwhile...the boys are ziplining through the jungle.  No fair!

I sent the boys to visit Israel's grandma so that I could sit next to mom all day long.  They're back now.

More Testing

QUICK NOTES:

Mom's cardio monitor has been removed because her vitals are stable.  

Her wound drainage apparatus has also been removed.  Nurses cleaned and redressed her leg.

The swelling in her leg has decreased a little bit.

Mom's chemotherapy has been pushed back three weeks.

MOM'S RETURN:

Dad would like for mom to come back to the states as soon as possible.  Her passport is good until 

April 2014.  We are going to ask for permission from her oncology doctor.  Dad would like for them to live in an apartment in Las Vegas, walking distance to the hospital.  It would be great if we could get Auntie Ne to come with them.

FEEDING TUBE:

The nurse was going to put a feeding tube through mom's nose because she has been refusing to eat the hospital food and take her oral medications.  She argued with the nurse (as she was about to install it) and then promised to eat and swallow her medicine from now on.  

With the doctor's permission, Israel went to the cafeteria and bought mom rice with apritada sauce (tomato/chicken broth).  Mom loved it.  Then she took her medicine between bites.  We asked the dietician to allow for more flavorful foods to be served to mom.  She consented.

Mom's dietician has changed her diet from liquids to liquids and soft solids.  She had mashed potatoes and gravy and egg flower soup for dinner.

BLOOD WORK:

Mom's blood is tested once or twice a day.  She is low on electrolytes, potassium and phosphorous.  She has not been taking her oral supplements but hopefully she will from now on.  

DAD:

Auntie Myra has offered Dad a room at her house but he refuses to leave mom.  He sleeps on a bench in mom's room every night.  

BLOOD TRANSFUSION:

Mom needs another blood transfusion.  The hospital policy is that we donate a unit for every unit mom uses.  Dad is not able to donate blood because he is taking multiple medications. I am not able to donate blood because I am taking Accutane.  Israel is not able to donate because he has a tattoo (this is against their regulations).  Auntie Ne is too scared to do it.  Jordan is too young.  We are going to have to buy blood from an outside source.  The hospital will make the arrangments.

NEUROLOGY:

Mom's doctors would like mom to see a neurologist.  She has been sleeping most of the day and she does not always make sense.  Her pain medications are only light sedatives.  They should not be putting her to sleep for 80% of the day.  This is how often she is sleeping recently.  The doctors say it could be due to one of several things.

1. Elderly generally patients take a longer time to recover, and the longer the hospitalization, the more likely these symptoms will show up.

2.  Metastasis of Stomach Cancer - a doctor noted that observable cancer spots were seen on an x-ray of mom's skull.  This could be the reason why her mentation is degenerating and she is having trouble going to sleep. She does not have a regular sleep pattern.

3.  Signs of Dementia

4.  Signs of Alzheimer's

The neurologist interviewed mom.  Mom got about half the questions wrong.

Mom had an EEG (brain wave assessment) done.  See picture below.

Tomorrow she will have a CT scan done.

After Dr. Alvarez, the neurologist, reviews all the test results, they will explain to us what they think is causing mom's sleepiness and lowered cognition.  I will let you know as soon as possible.

KUYA & JOSEP:

Thanks for letting me call you in the middle of the night.  Sometimes I just need someone to talk to.  This is a hard job.  I love you guys.

Happier Pictures of Mom

I needed to post something more happy.

Mom's Central Line

Here is mom's intra-jugular line.

Mom has this line and a regular IV in her right arm.  They need both ports to deliver all the necessary medications and fluids.  

As you can see from the second photo, mom is losing her hair already.  

A Somewhat Better Day

Mom is still sleepy most of the day.  She did eat so that makes today a better day.  The doctor persuaded us to find any food in the hospital cafeteria that would be appealing to her just to get her to eat. She ate a few spoons of sinigang broth with a little rice.  She also ate a few chunks of cantaloup.  At night, when dad ate his Big Mac, he gave mom a few of his fries.  She actually fed herself a couple of them.  That was a cute moment.

Still, mom is not showing much improvement towards recuperation.  Perhaps, her medications are masking any progress made.  I'm not sure.  

Mom is up to ten "drips" and it seems as though her medications are piling up.  Here is a picture of them all (since Josep likes to know exactly what she's taking).  

These are given via IV or IJ.

I couldn't get a good shot of this one.

Following are the oral meds.  Mom usually refuses to take these.  We have the hardest time getting her to swallow these.  We don't have a good success rate.

Since she is on so many medications, they have put a heart monitor on mom.  This is the first thing I saw when I walked in this morning.  

Her doctors have been asking her lots of questions to test her cognition.  They have attributed her lowered mentation to the pain killers and/or her age in combination with how long she's been an inpatient.  They are monitoring her carefully.  They have asked dad if they could do a brain scan but dad would not give them permission.  He thinks they are wasting his money.  Please let me know how to advise dad about this.  Tell me how I should explain if and why this test is important.  

While I was taking my dinner break, a nurse came into the room to ask if mom could be put in an isolation room.  Dad was not present so nothing happened.  When I returned, Auntie Ne could only explain that a doctor wanted to take mom to another room but she could not explain why.  I stayed until almost 10pm to wait for the doctor to come back but to no avail.  The nurse tried to contact the doctor but I'm assuming he/she was already off shift.  I am hoping to find out more about this in the morning.  

It is frustrating when I miss an important doctor's visit.  I stay for almost 12 hours a day at the hospital but I have to leave to eat and take a break once in a while.  Anyhow, I'm sure I'll find what I need to know tomorrow.  

Josep, how does this all look to you?  Should I be worried?  

I'll have another update tomorrow.