Everyone, I'm moving the blog's address.

Please go to fphilibert.blogspot.com

The change was necessary for administrative reasons.

More video messages. From Vicki, Paul, Roya and Nick. Ah hes, and a hairy rodent named Mini.

And what the house looked like this morning, with everyone doing something to get it ready. Mariana and Regina stayed up until past midnight decorating. Susana did a cake capable of handling a small conflagration in the form of 80 candles, and everyone pitched in to help.

Aunt Christy

Mariana and Susana

Juan and Coqui

Working on a giant birthday card

Right now Mom's looks like a Salvation Army shelter. Both her house and ours are full with guests. We improvised a Pizza Hut dinner last night, followed by a group massage session. Notice Aunt Christy? Didn't take her long to figure out the last in line gets nothing.

I wonder what we would do without technology. It's everywhere. The UN telecommunications agency reported that there are 4.6 billion cell phones on the planet. That's a lot of conversations.  Also read somewhere else that the human brain has changed when compared to those of our ancestors, most likely because of the development of speech. What will it look like in future years?

Notice everyone is on the phone, even Aunt Mary. The cat was on blue tooth. She's always in the middle of things.

             

On the eve of the Big 80 --

The rest of the Ferrer clan arrived last night. Christy got here in the afternoon. And thanks to Susana and Juan's intervention as well as Benny Otero on the Mexico City side, Aunt Mary came to stay here for a while as a welcome surprise. Mom was especially eager to see her. They've been friends since they were 5 years old.

The photo is of a cake Christina and Eric made  well together with the video below. This was going to be for a video I was secretly making for Mom's party in Mexico City. All of that got cancelled but the video shows that the kids put a lot into this, not just a short video message. Though they won't be here in person, their video is a good substitute.  I will miss them though.

I wrote a four-page letter to the President and CEO of Methodist. Wisely, I ran it by my sister who is the assistant to the director of the VA hospital here in Houston. She gave me very constructive criticism and I whittled that letter down to just over a page. I also changed the style and made it more to the point. In another blog I'll write the letter I'd really like to send.

But never mind that. Here's Christina and Eric being their goofy selves.

And the next bit of good news is:  

YOU'RE INVITED TO MOM'S 80th BIRTHDAY OPEN HOUSE!

It's this Sunday, August 11th, her actual birthday, from noon to 4 p.m. at: 15607 Tylermont Drive, Cypress, TX. If you want to bring something, bring a writing pad or tablet and a pen or marker. We're taking up a donation of these writing materials. We'll explain why later.

Mom is very, very excited about this special birthday. She intends to blow out 80 candles. That's right, 80, and Susana is baking a cake big enough to hold them. Of course, instead of frosting you may wind up biting into wax. So come and share this special occasion with Mom. She'll be delighted to see you.

It's Mom's third day after getting paroled from the hospital. My brother Art and nephew Jonathan arrived yesterday.

Now that the dust has settled around the discharge papers we can report the casualty count: Two medicines prescribed with no prescriptions; one medicine given to patient to take home to which patient is allergic; steroids prescribed by a doctor that didn't know patient was being discharged; and home instructions issued by another doctor that directly stated the opposite of what the general discharge instructions instructed. I'm going to have a talk with Methodist's administration very soon.

Mind you, we think Houston Methodist is a great hospital. It has great people who are competent and really care. All except whoever designed their patient-doctor relations protocol. We suspect that person was probably raised in a concentration camp or maybe got his GED behind the walls of a mental institution.

Now the good news. Mom took her first walk outside of her home. I imagine it must have been like watching the first man ever to take a space walk, Alexei Leonov, back in 1965. Mom stepped out, gingerly, tethered to her walker and escorted by Jonathan Philibert. Granted, I didn't watch Leonov myself. I was 7 and I was living in Chihuahua, Mexico, where we had one black and white TV that received one channel. I don't think Leonov's walk made it to the program line-up.

First day at home. Vicki is now handling Mom's long list of medicines, though Mom has been managing her own medication quite well thank you very much. We just want to be able to step in if necessary.

Yesterday we found out that the hospital sent her home without a prescription for a vital medicine. Super Doctor Paul came to the rescue and got us over that hurdle. But man, what is it with modern medicine? They can handle brain surgery but not sending a patient home with the correct medication. 

Mom is very calm, and very sure that we will be guided along the way through this maze of challenges. My sisters have been doing yeoman duty with Mom, a heroic task. Mom is a great woman but can be very hard on those close to her. My sisters too are exhausted and yet they're right there, plugging away with whatever is needed. I conked out last night on the dinner table and today I only made a couple of short visits to Mom's home. I've had a lot of work to catch up with and I'm still behind. Life goes on and bills have to be paid.

Today Home Health Care came in the form of nurse Andres. He found that yet another medicine was prescribed without a prescription. Mom's list of medicines could take up a couple of shelves at Walgreens. Once again a call to Super Doc got this taken care of. And today I finally got a call back from Dr. Zhang's assistant. I called yesterday because the home care instructions specified one thing about a couple of medicines and his own discharge sheet indicated something else. Plus we needed an appointment for the follow-up meeting with both Dr. Zhang and Dr. New, at the same time. Dr. New didn't even know Mom was going home. I'll write more later about these modern hospital snafus.

In any case, nearly 24-hours later the problem with the instructions was straightened out. "Your Mom has a lot of physicians taking part in her care," the assistant mused. Yes, I thought, and they all specialize in their own little world. Besides, no one talks to anyone so the result is that the patient has to be aware of the whole picture or you're in for some unexpected and preventable troubles ahead. Not only that but the doctors never asked to speak to the family. We caught what we could when their visits coincided with one of us being there. Other than that they only focused on giving Mom instructions and explanations but hey, just because she just had brain surgery and is on enough medication to outfit a MASH unit shouldn't be a problem. The assumption is she'll be able to digest all the information and inform the rest of us. And never mind that her family is exhausted. We're all capable of comprehending the intricacies of steroid effects coupled with hypertension and diabetes as well as the projected path of Hurricane Glioblastoma in Mom's brain, right? Yes indeed. And this is one of the world's most advanced countries? I'm a little pissed.

We brought Mom back home this afternoon, happy and in tears when she walked in. She really missed being in her house. Right now she's in very good spirits. All visitors are welcome anytime. Feel free to call her house line or the cell. Just keep things short if you will.

Physical therapy will be scheduled very soon. Be aware she's having some speech problems. Her handwriting is also way off plus she's a bit wobbly when she gets up. She would be delighted to hear from you in some form.

Susana prepped the house and bought balloons and flowers.



 

Ron joined us for dinner. Mom had a craving for grilled steak. Vicki and Susana cooked dinner and we had a wonderful evening.  Coqui took this great photo; the only thing bad about it is she's not in it.

Mom's coming home today! To HER home.

It was decided by all of us that it is in her best interest to be in her home. Given that there will be family members here for the next 15 days or so, we can handle the 24/7 attention her care demands. And then sometime next week we'll have the follow-up appointment with both Drs. Zhang and New. That is a crucial meeting where her future care will be defined. Her sutures will also be removed.

She sounded, in her words, 100% better today and VERY happy to be coming home. Once we move her and we see how her energy holds we'll let you know if calls and/or visits are appropriate. In either case, however, keep them short. She does want to see you and hear from you, make no mistake about that. We're just trying to manage her energy and health.

Yesterday we had a couple of special visitors, Gerry and Adriana Sarmiento. For those of you who don't know or forgot, Coqui and I met at their restaurant, Mezzanote. Adriana was recollecting that Mom and I stumbled into Mezzanotte because the pizza place in the same shopping center was full. Had we stayed to eat pizza it's likely I would have never met Coqui or the Sarmientos and Mom wouldn't have found such good friends. We've enjoyed many great meals at both of the Sarmiento's restaurants, Mezzanote and Piqueo.

Harold Velazquez and his fiancée, Susana, also stopped by. Harold was a classmate of mine from junior high, in Mexico City. Who would have told me that one day, 40 years later, he'd be sitting in the same room with me, with his fiancee, visiting my Mom in a Houston hospital. Life's twists and turns are amazing.  It also happens that Susana has a physical therapy clinic in Mexico City and has lots of experience in the field. When she comes back in three weeks we hope that she'll be able to work with Mom in some capacity.

Speaking of PT, Stephanie came to work with Mom yesterday. Stephanie is the hospital therapist and really put Mom through her paces. And Mom, being the trooper she is, worked hard to exercise her body. She's one tough lady as you know. And she's fighting to regain her health as best she can.

Paul, Vicki, Susana, Coqui and I ended the day by sharing dinner at Brios off Kirby. It was good chance to recap the events and look ahead at what needs to be done as well as what to expect.

Room change. Mom just got moved to room 440.Wow, what a group: Her own physician, chef and architect all standing by. Bill Gates, eat your heart out.

I haven't properly acknowledged my wife, Coqui, for all she's done throughout this ordeal. Her participation goes way, way back, before we even got married. Her love and support for Mom quickly earned her a very special place in Mom's eyes. She is, in Mom's words, another daughter.

Coqui used to own a condo near the Galleria. It took her 15-20 min. to get to work. When we decided to live in Cypress, near Mom, she did so knowing that it meant a daily commute of 1-1 1/2 hrs. each way. And not once has she complained about it.

I am clear that I could not do what I'm doing for Mom without Coqui's support. She's been here every day, she's always keeping things light and funny, and is always ready to spring into action when Mom needs something. She's my partner and my lifeline. I am blessed beyond words.

Saturday was a mixed day in the sense that Mom was in good spirits and had her sense of humor back, but her speech is definitely affected. And she's not ready to handle too much information. She gets easily overwhelmed. For now, it's best if you don't call, please. She does want to know that you're thinking of her so send her text messages or e-mail. Send cards or letters if you wish to her house. And if you do speak with her, don't ask about her condition or what the doctors have said or when she's coming home. Just let her speak. Mom knows they didn't get the whole tumor out but that's all. Beyond that there is nothing to say so don't ask. I'll keep doing my best to keep you updated here.

We don't know if she's coming to our home on Monday. It looks like her discharge date may be moved back a day or two just to give us time to get ready. It's a big change for all of us.

Vicki took out her guitar for the first time in eight years. It sounded as if she had never stopped playing. She was and is a wonderful guitar player. The soothing classical music was the perfect acoustic addition to the room. Mom loves classical music, if you didn't know that. Did you also know that she wanted to be a concert pianist? But no, her parents wanted her to have something she could use to make a living. Sounds familiar? I wonder how many gifted artists we've lost through the ages because of the same well-intentioned but misguided parental advice. In those days, for women, it meant secretarial work so that's what Mom set out to be. And she was a very good one.

Mom used to play the piano wonderfully and recently she had started to play again. 
 

Dr. Paul, always there when we need him, was around yesterday to help explain Mom's wild ride through sodium, potassium and blood sugar readings. Slowly things are leveling off.




Ron Jones who's like an adopted brother to us -- older brother that is -- is here every day, and every day he brings presents. For Mom it's like Christmas. She loves presents.

Last night Vicki, Susana, Coqui and I left around 9 p.m. By then Mom was in a bad mood and her speech and thought processes were on a dirt road, bumping around all over. Her sugar level once again went to the moon but this time we specifically requested a blood test. The "anomaly" the dietician told us about is no longer such. Now we have evidence that something weird is going on and hope to pursue this further today.

As time at the hospital draws to a close, at least for now, I can't help to think about some of the things that I saw and learned, good and bad.

I remember when we walked into the ER and how awkwardly set up it was. The admissions desk was over the far right of a room where about 20 chairs were lined up against two walls, in an L shape. The desk was at the end of one of those legs and one of the chairs was right up against it so in order to talk to the admissions person you literally had to talk over the person sitting there. In our case that person was a man to whom you could write at "Hwy 59 Underpass corner with Main" and he'd get the letter. With all the HIPAA hubbub it seemed odd that some rather personal information had to be shared in such an environment.

- May I help you?
- Yes. I have a fja;ls fjkd c;lkfjj...
- I'm sorry, what did you say?
- I have a fja;ls fjkd c;lkfjj...
- Could you speak louder please?
- I have a frickin' hemorrhoid the size of Oklahoma, alright?

I mean, how can you talk to someone about your medical emergency in a place like that and not feel worse than you did when you walked in?

And then we waited. The nurse that came to see us was a strong, kind-looking, wise black woman. She inspired confidence immediately. She talked with Mom, gently grabbed her by the shoulders and said, "We're going to take care of you." And she meant it. It was the kind of human care that we have experienced all over at Houston Methodist and we applaud them for that.

When Mom had her first seizure in the ER, I grabbed her and yelled "emergency!" but the response seemed slow, as if they wanted to see how badly it really was before doing anything. It's as if they think most folks exaggerate and maybe that's been their experience in the past. For me it was the first time I had to yell like that. So the slow staff response surprised me. Maybe I should have yelled "free donuts!" and gotten faster results, like what they say if you're being mugged. You're supposed to yell "fire!" and not "help!".

After the seizure they sort of bumped Mom up the chain of priorities. They got her on a gurney and not long after into a room. On the way there we passed folks on gurneys all over the hallways, what you would expect to see in a Bronx ER, but this was the Medical Center, Houston, TX. I already doubted the wisdom of having gone there.

But then when we got into an actual room things got better quickly. We started to get lots of attention and the ER doctor soon came to talk with us about the CT scan results showing the mass in her head. So it was a blessing that Paul Wells directed us there after all. When you're having a major event you need to get to a major hospital. Maybe the entrance is not exactly lined with a red carpet but if you have a serious condition you need a place with the staff and equipment to handle it. A lot of folks choose hospitals based on convenience. I think that's a poor choice in some cases. Not all hospitals are the same and the nice, new neighborhood hospital down the block may be able to handle a deep cut or a bad cold but not a brain tumor. If in doubt as to what you have, start high and work your way down.

The staff at Houston Methodist has been caring and helpful throughout our experience. I would choose this hospital again though hopefully that won't be necessary.

What is missing, however, and I think this is true everywhere, is a better form of communication with the patients. I don't know about its advantages and I'm sure there are some but HIPAA and the privacy rules have caused a lot of problems in my experience. Nobody talks to anyone about anything though the man on the chair by the ER desk knows about my hemorrhoid.

I personally feel that there's a lot more that can be done to improve the doctor/patient relationship. I would like to see a wall-mounted computer, for instance, perhaps a touch screen, where patients and family can exchange questions and comments with the staff. With all our technology the chain of communication feels primitive. Take for instance the high blood sugar recorded the night before. That information must have appeared in some chart but the dietician that came to talk about insulin hadn't seen it. There were blood results too and she hadn't see those either or knew about them. And the only thing that anyone said to Mom was an endocrinologist that stuck his head in the room for about three seconds and said, "I'm giving you four carb units," whatever that meant.

And the high number recorded last night? Who reads it? Who can pass it on to someone who can interpret this and give us some answers? Mom may be coming home soon and yet her sugar roller coaster is still not controlled or explained. We feel as if the right hand is completely unaware that there is a left hand on the other side.

My sisters, Aunt Christy, cousins Alexie and Jonathan, Coqui and I have stepped into the fray and it is through a team-effort that things have gotten done. Buford and Julia Wells, Susy Young, Andrea Higuita and Ron Jones have been regular visitors. If Mom didn't have her family and friends around, I shudder to think what would happen even in such a fine hospital as this.

By the way, Michael's advice to bring donuts and candy paid off handsomely. We did as he told us and indeed, it worked. Mom got a lot more attention yesterday.

Mom is doing much better today. Coqui came to visit her during lunch and took this photo. Brittany, her PCA, is here now. She bathed Mom this morning and changed her clothes. Mom told me she felt wonderful to feel a hot bath on her skin.

Last night Mom's blood sugar zoomed to the moon. It's not clear why. The diabetes educator stopped by today to show Mom how to apply insulin and one of the things she said was that the high number was probably an anomaly and nothing to be concerned about. 

With Brittany

The main thing now is that Mom's vitals are leveling off, finally.The steroids have been playing havoc up until now. Unfortunately, they are needed to help with the brain swelling and will be needed for some time, at least through the beginning of radiation.

And speaking of radiation, Dr. New, the neuro oncologist, just stopped by. She's wonderful. She listens very carefully and attentively. She's the one they had to take out of the storage closet, remember? Dr. New is in charge of a new protocol called NovoTTF here at Methodist. Mom is a candidate for this type of treatment. It uses electric fields in conjunction with typical radiation and chemotherapy. The final pathology report is in as well. It is a glioblastoma grade 4, the most aggressive of the glioblastomas and also typical of patients mom's age.

Don't ask about life expectancy. We want to leave that door wide open. We welcome miracles. Regardless, Mom is very calm. She said to me that she's here to shine God's light as long as He wants, and when He  wants her to shine his light elsewhere, she'll go willingly.

At the moment we are inclined to take Mom to my house. Coqui and I had talked about this possibility a while back and for some reason when this started I saw in my mind Mom sleeping in our guest bedroom. Mom will need care all the time and at the moment we are not sure if she'll ever be able to go back to her home. We would very much want to achieve that but at the moment it's doubtful. We've been asking for information from different sources so that we can be prepared to take care of her. We talked to the dietician, the nurse practitioner and Dr. New about the things we need to do to get ready.

Some of you have expressed your desire to help. Well, in the coming days we may need your help indeed. We'll keep you posted. Mom is still too weak to take calls or receive visitors. When she goes home this is likely to change. We'll let you know.

Last night Coqui, Vicki and Susana stayed until around 11 p.m. with Mom. Her blood sugar danced the Merengue all day with a high of 500+ and a low of around 90. A nervous stock exchange couldn't swing more wildly. She also had a mild stroke, very mild by comparison according to the nurse practitioner. We hadn't been told that this is common in brain surgery patients.

Vicki saw a neurosurgery resident in the hallway and tackled him in a way worthy of a Longhorns linebacker. She told him the situation and he rushed off to take a look. That got some attention.

We've been feeling sort of in the dark. No one has explained what to expect both after surgery and then later at home or wherever she goes next. The surgeon hasn't talked with us since the surgery and yesterday the physical therapy doctor rated Mom as suitable for going home. When we were asked if we had made plans we realized that we were missing a lot of information and set out to raise some cane.

Ramona, patient liaison

As you know, I've never passed the sixth grade so I get sent to the Principal's office quite often even in Summer school in which I'm currently enrolled -- for the 40th plus time. I even have a desk with my name on it in the back of the room, but that's another story. Anyway, my trips to the Principal's office have taught me to start at the top so I marched to the hospital's executive office and told them we needed help. They gave me the name of the patient liaison and they called her too. Then I went to the neurosurgical office looking for Dr. Zhang. They made some calls as well. I also talked with the physical therapist. By the time I returned the nurse had already had a call from the administration and wanted to know what was wrong. I made my case and not too long afterwards both the nurse practitioner and the patient liaison showed up.

With the Von Bertrabs

Mom is on a roller coaster ride. The problem is that she hates roller coasters. She wants an easy, merry-go-round kind of ride like she always enjoys when we go to the Boardwalk on Kemah. She experienced a sudden drop in energy coupled with the mild seizure which rendered her almost speechless and with a strong craving for food. Well, you say, we all sort of like food but hers was a rabid, gnawing craving. I stepped back fearing she might bite my arm. She already chewed on my butt the other day before surgery. Susana had to jump in and help feed her. We can't have this sort of drop and it surprised us that she wasn't getting the attention from the medical staff that she had been getting prior to the surgery. We're going to see about this today.

 Ceci and Herman Von Bertrab showed up unexpectedly. We've known Ceci and her family since we first arrived in Chula Vista, California, back in 1976.

Michael

Another special guest was Michael. Remember him? He was the nurse at the post-op station, where Mom had the horrible hallucinations. It was Michael that pulled her through and a special bond was created between the two. She gave him a little angel as a reminder of how special he is to her.

In the afternoon when we walked into room 411 at Houston Methodist, Main Building, we found what looked like a party balloon floating around, draped in a purple robe and wearing pink slippers. It was Mom. She had gas, enough to float the Hindenburg. The surgery plus medication plus whatever she's eating all ganged up on her. So we moored her to her bed with her robe's sash. After a while Susana realized she could burp Mom like she would a baby and slowly she started to come down and about an hour later she landed safely on her bed.

Ok so the burping part is true and yes, she was gassy.

The other stuff you hopefully read earlier about Mom's condition is also true. She's better but needs to rest and needs us not to ask too many questions that make her think.



The doctors haven't told us anything since the surgery. Mom herself doesn't know what the surgeon said and hasn't asked. She's not ready to assess her situation and begin planning for her recovery. Keep that in mind when you talk with her.





Yesterday I also found that Nickel had an open injury on her back which had gotten infected. Two trips to the vet and $200 later she's back home wearing a hoodie. What is it with the girls at Tylermont?