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?