Everyone, I'm moving the blog's address.
Please go to fphilibert.blogspot.com
The change was necessary for administrative reasons.
Wednesday, August 14, 2013
Sunday, August 11, 2013
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 |
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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?
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Saturday, August 10, 2013
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.
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.
Friday, August 9, 2013
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.
YOU'RE INVITED TO MOM'S 80th BIRTHDAY OPEN HOUSE!
![](https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYLx6M9XUkuWr0VjgGYwHH519FFEFCZ8P7YGLo4MLh4AV79YD1QXRc62iPiTLgFfywDI1uqDLngMPVFSlRSe0pE99mqd8uppMklwfxS9EWkVYXw4536twuVNmimC_37CcIfTn4xCXSde34/s1600/party+2.jpg)
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.
Thursday, August 8, 2013
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.
Tuesday, August 6, 2013
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.
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.
Monday, August 5, 2013
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.
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.
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.
![](https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTcneQrXXUB9KuIFXwSU4rbHh8TOv7FuyUPl7hYkGXg87BaO4zWLlawtxkIQzpSp9QOfVoi5ZQmzPHCrpbzAvpsvOe6zyql8hbKDyQC9WWRx7pEJtV7lkT16lDtre0mieZ9Q_rRzr_xZrM/s320/Physical+Therapy,+with+stephanie+2.jpg)
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.
Sunday, August 4, 2013
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.
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, August 3, 2013
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.
![](https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNlpjmRwP9Jvq5XzDVT_vzHy_1of_Q1aMtclzm7HKVphpLztc0tniJJTIIElaLtpMTrElTPXNxNYIkH2vkH13rVn67V9khB25esh8CIhHPdRuJgb_exnae3CX81ih0wC0eqoj9kcVd4Flq/s320/Dr.+Wells+making+house+calls.JPG)
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.
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.
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.
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.
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.
Friday, August 2, 2013
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 |
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.
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.
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.
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.
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 |
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With the Von Bertrabs |
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 |
Thursday, August 1, 2013
![](https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2GYYehseft_KeTJv_jF-Y82sVxbq4TUFdwYU6ukflEqrgYVOsh4D9q_sdX85512jvVGho06FOJqTbzjL1eoejAoRLSKp1omCpR1y6tmJHmttxaboFTyZKteG7vYEs0OOfkP29aylPRboa/s200/Hindenburg.jpg)
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.
![](https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUcerjNQIe-oFToaU7UEZKYIb5sEg7p0XOIplMDnmrAIipFSftfQuzc4eZxiBQSLuhS7njOIolIF4y7I25cz1co5NBSmPP38RRQtRi9DYc3-taZI695L9a2V6QGi2Q7y9zZbWHmESYpwSG/s320/Mom+on+Wednesday.jpg)
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?
Wednesday, July 31, 2013
Yesterday, Tuesday, was Mom's first day in the NICU. They determined that she's allergic to morphine which explains why she was acting so bizarre in the recovery room. She called it the worst place on Earth and told us it was filthy, that she could see lint and dust all over. She was hallucinating. We also know this because she called me good-looking. In the NICU they switched the morphine for something else and gave her a diabetic diet to help with her sugar. She was annoyed that we were not there earlier but didn't have the strength to say much. She dozed off and by the time my sisters left she was sleeping.
Just so you know, the NICU is in the 4th floor of the main building. No visitors are allowed between 6-8 both a.m. and p.m. And no more than 3 visitors at a time in the room but other than that there are no rules. It is not a comfortable place by any means and we discourage visitors because of Mom's weakened condition. If you do come, however, Mom will like to see you but please keep it short. We trust that today they'll move her to a private room like she had before, as soon as her sodium levels are stabilized.
Just so you know, the NICU is in the 4th floor of the main building. No visitors are allowed between 6-8 both a.m. and p.m. And no more than 3 visitors at a time in the room but other than that there are no rules. It is not a comfortable place by any means and we discourage visitors because of Mom's weakened condition. If you do come, however, Mom will like to see you but please keep it short. We trust that today they'll move her to a private room like she had before, as soon as her sodium levels are stabilized.
Tuesday, July 30, 2013
Mom had a very hard time in the recuperating room. She was there until 8 p.m. on Monday, waiting for a room to open up in the Neurosurgery Intensive Care floor (NICU), also on the 4th floor where she had previously been.
When Christy and Lex went in, they met Dr. Jekyll. She was wonderful and in good spirits and apologized to them profusely for being bossy and demanding. This was sometime around 4 p.m. I guess. About an hour and a half later they allowed Susana and me to go in, and we met Mr. Hyde. Her mouth was very dry and when I tried to get her not to talk because it would make it worse she not only refused but said she had to talk and I was the one being bossy. Mom's mood was very black and complained that she was in the world's worst place and would not have made it were it not for the one angel there who stood by her the whole time, nurse Michael. She said the worst part was a patient who was deaf. When the staff tried to get him to do something like wiggle his toes, he would yell at the top of his voice that he did not understand. Mom yelled back, "get him a pen and pad." The staff laughed but could not find a pen and pad. They have thousands of dollars worth of equipment and not one pen and pad around with which to write simple instructions to a deaf person. Something to think about. Disabled people need full access in hospitals too.
Nurse Michael, a 20-year veteran of the profession, was amazing. His professionalism and caring were top-notch. I suspect you don't get to be a recovery room nurse unless you're very good at it. But Michael and the whole staff down there had their hands full with a full ward because of a shortage of rooms in other floors. It was a domino effect and they were doing the best they could.
We went back to the waiting room and about an hour later Michael came out to give us a report. "I hammered her," he said. And we all laughed. Michael said that she was sleeping and would probably sleep for the rest of the night. He warned us that trying to spend the night (which none of us wanted to do,) would be pointless. Mom would be drugged and the room would be brightly lit and with lots of action during the night. Anyone staying there other than the patient was guaranteed a sleepless experience. So after deliberating our next step, we decided to take up Vicki's suggestion to dine at wonderful little Italian place nearby, Buon Appetito. Paul joined us. It was every bit as good as she said it would be and we had a great time not only because of the delicious food but because of Justino (Tino) Cantú, a guitar player that looked like he was born about the time the guitar was invented. He serenaded us with beautiful music and funny banter.
We all got some rest last night. I cooked breakfast for Christy, Lex and Susana and then we parted ways. Christy and Alexie went back home and Susana and I headed for the hospital.
Arriving at the NICU bed 2 we found a very groggy and crabby Mom. I think she was upset that none of us had been there for awhile but we needed to get a way for a bit or we would have been useless too. So no apologies. We helped her get better situated in her bed and eat a little food. The nurse, Ruth, also went to Presbyterian Pan American School in Kingsville but about 20 years after I did. That's a big coincidence because the school is rather small. Ruth told us that Mom had a bad night last night, fitful and restless. I went down and got her some sherbet and after taking a couple of sips of that she dozed off.
Susy and Julia were here this morning and just now left after briefly going in to see Mom. According to Ruth, the plan is for Mom to have another MRI today and then hopefully move her back to a private room in the same section where she was prior to the surgery.
When Christy and Lex went in, they met Dr. Jekyll. She was wonderful and in good spirits and apologized to them profusely for being bossy and demanding. This was sometime around 4 p.m. I guess. About an hour and a half later they allowed Susana and me to go in, and we met Mr. Hyde. Her mouth was very dry and when I tried to get her not to talk because it would make it worse she not only refused but said she had to talk and I was the one being bossy. Mom's mood was very black and complained that she was in the world's worst place and would not have made it were it not for the one angel there who stood by her the whole time, nurse Michael. She said the worst part was a patient who was deaf. When the staff tried to get him to do something like wiggle his toes, he would yell at the top of his voice that he did not understand. Mom yelled back, "get him a pen and pad." The staff laughed but could not find a pen and pad. They have thousands of dollars worth of equipment and not one pen and pad around with which to write simple instructions to a deaf person. Something to think about. Disabled people need full access in hospitals too.
Nurse Michael, a 20-year veteran of the profession, was amazing. His professionalism and caring were top-notch. I suspect you don't get to be a recovery room nurse unless you're very good at it. But Michael and the whole staff down there had their hands full with a full ward because of a shortage of rooms in other floors. It was a domino effect and they were doing the best they could.
We went back to the waiting room and about an hour later Michael came out to give us a report. "I hammered her," he said. And we all laughed. Michael said that she was sleeping and would probably sleep for the rest of the night. He warned us that trying to spend the night (which none of us wanted to do,) would be pointless. Mom would be drugged and the room would be brightly lit and with lots of action during the night. Anyone staying there other than the patient was guaranteed a sleepless experience. So after deliberating our next step, we decided to take up Vicki's suggestion to dine at wonderful little Italian place nearby, Buon Appetito. Paul joined us. It was every bit as good as she said it would be and we had a great time not only because of the delicious food but because of Justino (Tino) Cantú, a guitar player that looked like he was born about the time the guitar was invented. He serenaded us with beautiful music and funny banter.
We all got some rest last night. I cooked breakfast for Christy, Lex and Susana and then we parted ways. Christy and Alexie went back home and Susana and I headed for the hospital.
Arriving at the NICU bed 2 we found a very groggy and crabby Mom. I think she was upset that none of us had been there for awhile but we needed to get a way for a bit or we would have been useless too. So no apologies. We helped her get better situated in her bed and eat a little food. The nurse, Ruth, also went to Presbyterian Pan American School in Kingsville but about 20 years after I did. That's a big coincidence because the school is rather small. Ruth told us that Mom had a bad night last night, fitful and restless. I went down and got her some sherbet and after taking a couple of sips of that she dozed off.
Susy and Julia were here this morning and just now left after briefly going in to see Mom. According to Ruth, the plan is for Mom to have another MRI today and then hopefully move her back to a private room in the same section where she was prior to the surgery.
Monday, July 29, 2013
Dr. Zhang came to see us around 1:15 p.m. He said surgery went well. The tumor was indeed right next to the part of the brain that controls motor skills on the right side, specifically her arm, eye and hand. So he took out only 70% of the tumor.
The tumor is indeed cancerous. The type is glioblastoma. You can read more here:
http://www.abta.org/understanding-brain-tumors/types-of-tumors/glioblastoma.html
At 2:20 Mom still was in the recovery room. She'll soon be brought to the ICU where she'll be for a couple of days. The doctor said he expects her to stay here for a further five days during which time we'll know a lot more about the tumor, her condition and prognosis. There are a LOT of unknowns so don't ask too many questions. We just don't know much though at least we know more than we did yesterday. That's sort of how things will be, one day at a time.
As I wrote earlier, our lives have all changed. Here's the letter to Hui. You can see how Mom's hand-writing has changed but her heart hasn't. Always remember that.
Below is another one of Mom's nurses. They've all been great.
![](https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_dMnByfjHygIqR3R5u8DHMpkozQsIaafwyfAW4KueaEDA_icP91XZ2lERs2aiaUzOEo3TbxgxGcN3xzlbR0UF5BRIQr05xVcUGNz_3-5oZM7ZTtZ3CrJcf3YFsYWr4XCohfEemBQr5JFV/s320/IMG-20130725-00040.jpg)
The tumor is indeed cancerous. The type is glioblastoma. You can read more here:
http://www.abta.org/understanding-brain-tumors/types-of-tumors/glioblastoma.html
At 2:20 Mom still was in the recovery room. She'll soon be brought to the ICU where she'll be for a couple of days. The doctor said he expects her to stay here for a further five days during which time we'll know a lot more about the tumor, her condition and prognosis. There are a LOT of unknowns so don't ask too many questions. We just don't know much though at least we know more than we did yesterday. That's sort of how things will be, one day at a time.
![](https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh38DDm4mSR6Jwn8ZWs79VCUOftvW5VtzeZTLlm-2l1L5K1-EVCX-Jby8KVyQ0ZErrKe2oikTWEscta2TnlX7g92Pn-6YQPdPr5Lh05nHPEKHQQEYsePKdLHkDRBh6OkJz9LFydXruu-4ed/s320/Hui+letter.jpeg)
Below is another one of Mom's nurses. They've all been great.
![](https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_dMnByfjHygIqR3R5u8DHMpkozQsIaafwyfAW4KueaEDA_icP91XZ2lERs2aiaUzOEo3TbxgxGcN3xzlbR0UF5BRIQr05xVcUGNz_3-5oZM7ZTtZ3CrJcf3YFsYWr4XCohfEemBQr5JFV/s320/IMG-20130725-00040.jpg)
12:15 p.m.
Nurse Tamara came out to talk with us about an hour ago. She actually had come earlier but she asked for the "Ramón" family. I thought to ask but didn't. So she came out again and told us that surgery began at around 9:15 a.m., after a long prep. They had taken Mom downstairs at 6:30 a.m.
Nurse Tamara said that everything was going fine and that she was feisty. Tamara said she liked Mom a lot. The surgeons had already tapped into the tumor and a sample had been sent for biopsy. Meanwhile they're taking more tumor out and preparing the equipment that is used to align their instruments once they know exactly how much tumor they can remove.
Once they close it will take another hour to hour and a half.
Nurse Tamara came out to talk with us about an hour ago. She actually had come earlier but she asked for the "Ramón" family. I thought to ask but didn't. So she came out again and told us that surgery began at around 9:15 a.m., after a long prep. They had taken Mom downstairs at 6:30 a.m.
Nurse Tamara said that everything was going fine and that she was feisty. Tamara said she liked Mom a lot. The surgeons had already tapped into the tumor and a sample had been sent for biopsy. Meanwhile they're taking more tumor out and preparing the equipment that is used to align their instruments once they know exactly how much tumor they can remove.
Once they close it will take another hour to hour and a half.
Coqui and I arrived at the hospital around 5:20 a.m. Christy, Alexie, Vicki, Susana and Ron were already here.
We collected Mom's things and prepared to be able to leave with Mom. We knew that Mom would not come back to this room since she'll have to spend a couple of days in ICU first. And then she'll be given some other room
Mom chatted about everything and nothing, sort of out of it. Between the tumor and the medicines she's taking she was loopier than the Beltway/Hwy. 10 exchange. We all felt very calm, however. I know she'll come out of surgery fine. I'm not worried about that. I don't think any of us around here are. The question is what will happen after. There's life before surgery and after surgery. This is the beginning of a whole new chapter in all of our lives.
Beauford Wells, Paul's dad and a retired anesthesiologist arrived right before they came to get Mom. He used to work at this hospital long ago. It's good to have someone around that can understand medical lingo and the workings of a hospital. Well, Vicki does that too so we're covered one way or another.
We've had fun keeping things light around Mom. I posted the sign you see here on day 2 because the nurses called her "troublemaker" in a kind, teasing way. They actually like her a lot. She's won many friends. Below you see Hui, her favorite nurse. They've all been great but Hui in particular went above and beyond. Mom wrote a letter to him that was posted in a bulletin board at the entrance to the floor, where patients can acknowledge good service. The bulletin board for bad service notes is somewhere in the basement I think. I doubt anyone uses it, however. The staff here has really been outstanding.
![](https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXF2VslDX2x5uo8EE8C9dGlHaIhP8ZE6x8E50zuoLP-rPxun5YkRjqYrc35fmksD1XQMda-jRpNz7ZfwpgOXT1Ytd0FYst5us8ENzBmVXukX5bhusVJspLhmIN0F5PsM6Q1rbnYOVRP6YG/s320/photo%252833%2529.JPG)
We actually took photos of most of her nurses but there's not enough room here for them. We have uploaded them to her electronic photo frame that Vicki bought her so hopefully you'll get a chance to see that at some point.
Jonathan Hart, aka J.J., also was here. It's always great to see the Harts around. It's a huge morale booster. Anyway, J.J. and some of us have been walking with Mom, keeping her as fit as possible.
I found out the hard way that Mom can't handle more than light thoughts. She prefers to do most of the talking. So what's new, right? But now she really prefers to do that. She has a hard time following conversations. So keep the conversation light.
![](https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmenbeRgl5IzkLRI7kKto-XDJ2kGv6pyF85O7jrhUq-QDXtAiwO95YD1BZIBAPlVV5zGX6zBWVBBbbZewRh_J_5xZcEThirg0wyCtytEljisnxd2-gaLPlMZXc5nBq-6qIEMubxyhwtnGX/s320/photo%252841%2529.JPG)
Vicki with the help of Christy and others knit Mom a cap.
We collected Mom's things and prepared to be able to leave with Mom. We knew that Mom would not come back to this room since she'll have to spend a couple of days in ICU first. And then she'll be given some other room
Mom chatted about everything and nothing, sort of out of it. Between the tumor and the medicines she's taking she was loopier than the Beltway/Hwy. 10 exchange. We all felt very calm, however. I know she'll come out of surgery fine. I'm not worried about that. I don't think any of us around here are. The question is what will happen after. There's life before surgery and after surgery. This is the beginning of a whole new chapter in all of our lives.
Beauford Wells, Paul's dad and a retired anesthesiologist arrived right before they came to get Mom. He used to work at this hospital long ago. It's good to have someone around that can understand medical lingo and the workings of a hospital. Well, Vicki does that too so we're covered one way or another.
We actually took photos of most of her nurses but there's not enough room here for them. We have uploaded them to her electronic photo frame that Vicki bought her so hopefully you'll get a chance to see that at some point.
![](https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlAPHzXPMtOUDu0oFn1BDyupUA_gbCa99F5CrUhwBx59bZxQEhweqdetpdBHl8CyunGPMhCrCQTgnIG4vKhrbXMGOlxttrg7-NmXsVv7h78RwtkWSXJ9HXxXkqoJcqH5Ws4uzFuQncFusN/s1600/Student+driver.jpg)
![](https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhp8BVePeTJGmKyPj76dCrBm2-umTf9caKUOqed3SW-Vdvufc_9dSxe80aAUS7zHdO3jMcYYGCACFc8fUv9XSOIpikoz_-cOZ_-qHnycVnRQJ3Q3sfx9bUiBUBH6pzzzX_D0k3DDhDI3bne/s320/IMG-20130723-00035.jpg)
Vicki with the help of Christy and others knit Mom a cap.
Mom had a Fudici stealth protocol mri, generically known as a functional mri. This test lets the surgeon know what parts of her brain control certain functions like speaking, moving the tongue, raising the arm, etc. It was conducted, according to Mom, by an German doctor that inspired great confidence in her. In addition to removing the tumor, I've asked them to install a button directly wired to the part that complains. It's a simple on/off switch which I know will come in handy.
On Saturday Mom had her hair cut very short and on Sunday the doctors placed the anchor points that will hold the device that is used to keep the surgical instruments on the tumor regardless of any head movement.You can see them in this photo.Coqui thought she could charge her iPhone on one of those. The photo was taken Sunday evening, on the eve of the big day.
Mom told us she could not believe the amount of love and support that she has gotten from so many corners; people have sort of spread the word and everybody knows her situation. It's blown her away so thanks to all of you.
Andrea Higuita is an oper from Colombia. She met Mom at Lone Star College where Mom was teaching ESL. Over the past few months Andrea and Mom have gotten very close. It was Andrea who first talked with Mom on the day Mom went to the ER. When Andrea heard Mom tell her about her symptoms she quickly urged Mom to call Paul immediately which she did. And that's what got the ball rolling. We found out later Mom planned to drive herself to the ER!
Eric and Christina also came down from Dallas. They've recently bought a house and are planning to wed next year.
Ibis and Joan Arrascaeta and Joan's mother, Teresa, are our Cuban friends that immigrated from Cuba via Spain about a year ago. They've adapted extremely well and have become very good friends of all of us.
Had to take Tessie in last week for a check up with her vet, Dr. Caballero. I told him about Mom's situation. He told me that his mother had brain surgery about 10 years ago in Honduras and she's alive and well. He also showed me the little angel that Mom gave him for Christmas, something that touched him very much.
Mom told us she could not believe the amount of love and support that she has gotten from so many corners; people have sort of spread the word and everybody knows her situation. It's blown her away so thanks to all of you.
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