Day 14 Post-Op: Two Weeks!

Monday, November 23, 2020

Today in the evening marks two weeks since brain surgery! We have been on high alert for most of these days. Ibrahim says in Arabic they say, “We have been on our nerves.” Funny, to be on our nerves about whether a packet of removed neurons will make life better!

I got up and managed to lead a global team work meeting today at 6 am. I then spent most of the next eight hours tying up the loose ends of this set of launch deliverables to get them distributed. Salwa did not need as much help from me today — just a little help with breakfast and opening a soup package for lunch that she made herself.

By 2:30 pm I had put in an eight-hour workday and was exhausted. But I still managed to order a pre-lit Christmas tree at 60% off that will arrive by December 1. Our light strands have been slowly failing over the years. Ibrahim, ever the frugal one, has spent hours fixing broken light strands. His minor in electrical power also drives this compulsion. Last year we got a live tree and used semi-complete light strands without trying to fix them. The thought of Ibrahim spending time fixing light strands or driving somewhere to find a live tree, buy and string up lights, and then us having to sweep up needles, just did not sit well with me. Missing my Ohio childhood was strong in me as I looked at the different tree models. I settled on one that looked a bit snowy and had pinecones.

I made sure that Salwa was doing well, and went to nap. It was a very deep sleep. While I slept, Ibrahim did a grocery pickup, brought the bags in, washed and wiped everything, and answered the door. I had missed the call from our friend N who tried to let me know she was on her way with a Tex-Mex meal for us. Ibrahim met her at the door, and she did not come in — social distancing.

Again, it was such a support to have a meal ready to consume and enjoy!

Salwa did better today. She has made such good progress! Her swelling is almost gone. She needed the neck warm compress only one time today. She decided to try crocheting, and started a new project. She said that it was taking about twice as long to complete as she thinks it would have after the surgery. In effect, she is doing her own occupational therapy.

Here is a picture of the seahorse and starfish that she crocheted for me this summer.

There was a little bout with low blood pressure before bedtime, but that was resolved with lying down and having some fluids. She has had no auras for several days! Overall, she seems to have rounded the recovery corner at this two-week milestone, and it seems like the surgery has been successful.

This seems to prove the epileptologist’s point that the surgery aftermath could have caused the episodes of the first weekend after the surgery, and that the healing process was still ongoing.

Before surgery, which it occurs to me could be abbreviated as BS, Salwa had gone two to four weeks sometimes without tonic-clonic seizures, but had not experienced two days in a row without auras, or sensory seizures.

Here is the log of seizure events from an app on my phone called Seizure Tracker, showing a few months this summer into fall. We only tracked the major tonic-clonic episodes these months, not the sensory ones. As you can see, we have not managed to capture video of most of the events. Where you see an image, there is a video. When we have gone to appointments, the physician appreciates being able to see a video of seizures to know if the episodes are changing for better or worse.

We were still worried about being ready for potential seizures. She had a terrible time October 22 with about five tonic-clonic seizures and two milder ones within an hour. It was impossible to get her to take rescue medicine by mouth. Just in case, at last week’s appointment the epileptologist prescribed a new version of her rescue medicine, a type that dissolves under the tongue rapidly with no need to swallow. Swallowing is dangerous just after a seizure as it can cause choking. But he said he hoped that she would not have any more cluster seizures and that the rescue medicine will not be needed.

We feel hopeful, and are very grateful for all the waves of love and support buoying us up in this journey. Friends, family, and co-workers around the world are checking on us and sending encouragement and care. We are not alone. And we look forward to celebrating in a big way after the pandemic has calmed.

Day 13 Post-Op: Zzzz

Sunday, November 22, 2020

Salwa had pledged to do better today with less napping and more movement. She kept her promise.

She walked outside around the driveway and patio. She alternated some periods of sitting in a chair with some periods of reclining on the couch with a pillow under her knees, watching funny animal videos. She snuggled with the great healing dog Scooby for a bit, too, and threw one of his toys for him to chase. I brought her a low-tech heating pad for her neck — a damp washcloth in a Ziplock bag heated in the microwave.

There was just one nap on Sunday, earlier in the afternoon than on Saturday, for Salwa AND the parents. I think the parents needed our own deep sleep of relief that the recovery process has come so far.

We folded a mountain of laundry that had piled up. And that was all the house projects we could handle for the weekend.

We were all satisfied that everyone felt tired by a decent time and able to go to bed without tossing and turning. I had a work meeting on Monday at 6:00 am and was determined to get at least six hours of sleep for that. Ibrahim had to get up at about that time also to go to work.

Day 12 Post-Op

Saturday, November 21, 2020

Today Salwa got a text at about noon from Alice’s mom-in-law, Y. She and her husband wanted to send a sweet treat of some kind! Salwa was very grateful but felt that she needed to stick with less sugary foods. She asked for soup from a Japanese restaurant and Y was on it quickly — within an hour, a tasty delivery was on the porch!

Another gift of love and support, much appreciated!

Today was a day of Salwa trying to alternate between resting, moving around, sitting up, and watching funny animal videos on her phone. Screen time was a bit painful today. We had ordered some blue light blocking glasses, and they arrived today. Salwa tried them on and giggled about them for a bit. Supposedly blue light from screens interferes with the body’s melatonin production, which then makes it harder to fall asleep at night. She sat in her room for a change, wearing the glasses and talking with L by phone.

It’s funny that Salwa wore those glasses that supposedly help with sleep, because she ended up staying awake till 3:00 am! Sama’an had gone to a House of Blues event downtown — with Dave Chappelle, who brought rapid COVID testing swab kits and health technicians, and required all attendees to be tested positive before being admitted. (Anyone who tested negative was sent away, and their information would be shared with an agency for contact tracing. ) The rest of us were late getting to bed. Ibrahim went to sleep at about 1:00 am. Salwa and I went to bed right after that. She tried to sleep in her own room for the first time since the surgery.

I fell asleep fast, and then was aware that Salwa was in the room. I sat up and asked her what was wrong.

“I. Can’t. Sleep.”

She was very frustrated. She felt exhausted but could not settle down to sleep.

“Let’s go finish our game of Rummikub,” I said.

“Really?!”

“Really.”

Research shows, I have read, that when insomnia strikes, it is best to leave the bedroom and go with the flow. I was very tired, but duty called. I was trying to be supportive, to keep Salwa’s nerves calmer and head pressure down. Off we went to the dining room to finish the game we had started in the late afternoon. We had snacks, we joked, shared some laughs, and finished the game after about forty-five minutes. By then Salwa was starting to feel a bit tired . . . so we then headed to bed. We shared our happy things, and Salwa pinky promised to take shorter naps the next day and move around more. She passed out pretty quickly. I guess I did, too.

We will see if wearing the yellow glasses again reproduces the insomnia.

Day 11 Post-Op

Friday, November 20, 2020

A package arrived on the porch yesterday. I did the usual disinfectant spray and wait routine. Then I brought the box to Salwa and opened it for her because her hands were weak. Inside the box we found a cozy blanket. What’s even better, the blanket design was many words of healing encouragement. Salwa loved it.

There was no note in the box. A mystery!

I put the blanket into the washer and then the dryer, so it was ready for her at bedtime. We stayed up a bit too late. This picture was taken just after midnight.

When Salwa got up on Friday morning, we pondered who could have sent the blanket. We imagined which friend or relative would be likely to do so.

I got a call from our friend, N, who was planning to have a Tex-Mex meal delivered for us. She asked of we had received the blanket — mystery solved! She and her husband Z have been such great friends over the past three decades.

We played Rummikub, and Scooby-Doo decided to jump up on Salwa’s lap for the first time since the surgery. They enjoyed some snuggle time. Salwa has been sipping Gingerale several times a day for mild nausea, still. It isn’t all day that she feels it, so we are not too concerned. The Gingerale helps.

At around 6:20, I got a text from son-in-law Chris’s Aunt M. There was a package on the porch from her! She and her husband J gave Salwa a get-well basket. The 500-piece puzzles might be just about right for these days and tbe grape sparkling juice will be a good treat. It will be fun for Salwa to usebthe stick-on nails. The chips and chocolate will need to wait till her stomach is a bit more reliable! Salwa feels literally showered with love and care. We could not be more thankful!

Salwa was able to handle more screen time today on her phone. Her neck was still quite painful, so sitting up was tolerable for about fifteen minutes, and then she would have to lie down. We still do not know if the neck issue is due to edema from the surgery or due to whiplash from fainting in the ICU. Time will tell.

Today Salwa tried to do some knitting on a blanket for her sister, and found it a bit challenging. She still felt some hand and arm differences that made the motions challenging. She Face Timed with her boyfriend L while adding some rows to a scarf she has been knitting for me. That project had looser yarn, she explained, and the motions were less difficult. She decided to put the blanket project aside for awhile.

Day 10 Post-Op: Purple Pumpkin Therapy

Thursday, November 19, 2020

White pumpkin-shaped squash decorated with purple for Epilepsy Awareness month

Salwa was tired after her busy day getting to and from the follow-up appointment. She slept in, rested a lot, and in the afternoon had a video appointment with her psychotherapist, J.

Talk therapy is highly recommended for epilepsy patients. The condition, when not well controlled, is understandably stressful. A significant percentage of people with epilepsy experience anxiety and depression. You can read more about this on the Epilepsy Foundation website among many other reliable resources. Did you know that about 1 in 26, or almost 4% of people, have epilepsy? In the United States, there are about 3.4 million people dealing with this condition. And about 40% of them are not helped by medications. It is a tough diagnosis. If seizures are not controlled, there are major implications for employability and independent living.

J. recommended neurofeedback a few years ago when Salwa was living in north Texas. She went for about 36 sessions and felt that it helped her anxiety greatly. The counseling practice there had the lowest prices I had found, which was a plus since insurance companies consider this kind of treatment experimental and won’t cover it. When deciding to sign up, we thought it might be a form of biofeedback to increase brain waves associated with relaxation and might reduce anxiety and therefore reduce seizure frequency. Looking at the number of tonic-clonic seizures that Salwa had during those months of neurofeedback, it seems that this method may have helped a bit. But it may be that Salwa’s seizure condition was bound to worsen over time anyway. Now J. is recommending something called Infraslow (IFS) neurofeedback, and we will be researching to see what we think. We are big believers in science and research-based practices, but we also know that some treatment ideas over the course of history that were met initially with skepticism eventually were proven to be effective. And, to piggyback off something my brother K. once said about an idea to create a new product that would cure most symptoms of anything, a bottle of pills labeled Placebo, I’ll take the placebo effect if nothing else works! But we will be doing our research before allocating any funds in this direction.

This evening, the Houston chapter of the Epilepsy Foundation had scheduled a support group meeting on Zoom. The support group has been held monthly for years, and we have attended very rarely. In her senior year of high school, Salwa came to the purple light night at Houston City Hall and took photos for the group. We attended one Houston chapter event the year before that, and one in 2019. We also attended a meeting of the chapter in The Woodlands in 2019. After March, the Houston chapter changed to the Zoom format because of the pandemic.

I wondered aloud about Salwa’s energy level and interest in attending this evening’s gathering. The email had mentioned a contest of decorated purple pumpkins in honor of November being Epilepsy Awareness month. Salwa expressed interest in attending. We talked about me going out to get a pumpkin and some purple paint. I googled pumpkin painting crafts and found one that looked perfect. It involved fingernail polish, one of Salwa’s passions. So I dashed out to a grocery store after my workday was done. I found a small white pumpkin shaped squash. Then I found three shades of purple nail polish and a glittery one.

Back at home, I got a rectangular plastic bin and half filled it with water. While Salwa watched I dripped some of each nail polish into the water. I tried to swirl it around with a shish kabob stick. Did not work completely as claimed in the article. The glitter polish mostly formed blobs that sank to the bottom. The rest of it spread out across the surface. Salwa advised me to work fast because the polish would harden fairly soon even in water. She and I took turns dipping and twirling the squash in the water. I guess we had a somewhat successful craft outcome. Salwa said the container should have been much smaller to force the polish to concentrate so more could end up on the squash.

People talked for about fifteen minutes of welcoming and checking in about their location and situation. Salwa was listening intently, and engaging with empathy. One person in the group had epilepsy since infancy that got better and then worse. He has a VNS — vagal nerve stimulator.

Salwa wanted me to join her in attending the chapter meeting. Together we logged in to the call at the dining room table using my laptop. There were about eight to ten people including the facilitator. Salwa had not been on any of their Zoom calls, so she and another new attendee were asked to introduce themselves. She mentioned she had just had RNS surgery, and another person said she had had the surgery two years ago and was doing very well — even driving again.

The facilitator called for pumpkin exhibiting. She had glued craft gems onto a plastic decor pumpkin. Someone else had a pumpkin T-shirt. Salwa showed our semi-successful polish-swirled white squash. It was nice to see people encouraged to be creative and share.

The next activity was a drawing game. There was a bit of a scramble as people clicked a link in the chat and signed in to a game session. Salwa was not sure about it at first, but she managed. Everyone got two turns to choose one of three words to draw using their mouse or touchpad on the keyboard, and the others had to guess what the object was. She had a good time.

After her two turns she told me her hand was really tired. Then she told the group that she was tired and would have to sign off early. There were some nice warm farewells and good wishes for her, and she expressed the same to others. It is so important for people with epilepsy to have forums where they can meet and support each other. I am glad these groups exist, and am always surprised at the small number of attendees.

This continuing difficulty with minor hand and arm exertion is more evidence that either she is still healing from major surgery or that the surgery has caused some impairments that may need therapy. We have to wait for more time and healing to pass. Her neck is also still very weak and often sore. She was having trouble sitting upright for more than a half hour or so. We are not sure how much of that is the normal aftermath of the procedure, and how much is from fainting in the ICU and not having her head supported properly. We see the surgeon next Wednesday and will ask for his opinion.

Somehow we decided to start a donation fundraiser for the Epilepsy Foundation. They do a good job of raising awareness, providing support groups and other activities in different cities, and links to resources. Here is Salwa’s page in case you are interested. This time of year follows the Purple Pumpkin Project to raise awareness about epilepsy and funds to support people with epilepsy as a community. People are asked to put a purple pumpkin on their porch or by the front door for Halloween and to tell those who ask about it some information about epilepsy and ask for a donation or to collect donations while trick-and-treating. The fundraiser is continuing till the end of November with a goal of $35,000 and about $21,000 raised so far this year. With the pandemic, online donations are safer. You can read more about the Purple Pumpkin Project here.

Day 9 Post-Op: Follow-Up Visit

Wednesday, November 18

Today was the follow-up visit with the epileptologist. It was supposed to be within two weeks of discharge, and we already had an appointment made since September that we had not cancelled, thinking we might need it.

Salwa was having a fair, or unfair, amount of neck and head pain and fatigue, and she was determined to accomplish this visit. She got up, ate, walked around, and tried to eat healthy.

To keep her cheerful, I hung up the get well cards she has received so far.

She took a long nap to conserve energy. Then she took a shower since she had skipped the night before. That process used up some valuable energy, but it was important for her to feel clean and presentable for the appointment.

We got our masks and her purse with ID, and made the 32-mile drive to the medical center, leaving at 2:45 pm, aiming to be at the clinic well ahead of the 4:00 appointment. We also brought the laptop in case it was needed. I sat next to Salwa in the back seat, and Ibrahim drove. She had a big pillow on her lap in case she wanted to lean against the door.

She tried to keep her eyes closed and to rest on the way, which was a challenge for her motion sickness tendency. We got to the front driveway of the medical campus and stopped. I helped her out and through the door. She was almost hobbling from her degree of tiredness. She put her arm through my arm to steady herself. Ibrahim parked the car and then joined us in the lobby of the neuro clinic. I kept thinking that this visit should have been scheduled for the next week, but here we were anyway.

When Salwa was called back, we both went with her to the door, and Salwa asked if it was okay for her parents to accompany her. The medical assistant said yes. So we went in and settled into the exam room where Salwa answered all the medication questions. By then she was feeling even more wiped out and asked for some water. The medical assistant brought her a cup of ice water and then went to notify the physician that Salwa was there.

The epileptologist came in. He is a very nice person, very smart, and very relatable. He is quite dedicated. Here is a person who went to medical school for four years, residency for three years, and an extra year or two of fellowship training in epilepsy and psychiatry. He has an MD and a PhD. Salwa started seeing him about two years ago. He suggested exploring whether she could be a candidate for the neurostimulator in 2019, and we have been on a path since then to determine this and move forward.

Today he had a student with him who had held a Zoom call with Salwa in September to hear about her epilepsy experience.

There was some initial joking around as he asked her how she was doing after such a big surgery, having her parents wait on her hand and foot, and Salwa laughed, choked on her water, and spilled some on the floor. More laughter ensued. The student got some paper towels for her. The doctor looked at Ibrahim and me and asked how the parents were doing after their daughter has had brain surgery. I said, “Amazing.” Ibrahim said, “It has been intense.”

Then Salwa told the epileptologist about the fatigue, headache, and yet her determination to make it to this visit. He said, “Well, remember, this is a major surgery. They cut through your skull. It will take several weeks for your body to recover.”

He asked if since the surgery she had any kind of episodes like before the surgery. The answer was yes and no, but mostly no, different from before. Then she told him about her small hand feelings, few whole body feelings, and the three head turning/hand clenching incidents, and that these had made her afraid.

I mentioned that she had experienced a sore throat that day, and that maybe this could be her new seizure type during illness instead of tonic-clonic type.

His response was that these might not be epileptic events, that the brain surgery leaves behind debris like blood and small amounts of brain matter — cannot exactly be hosed out — and that these can cause symptoms. Time is needed for healing and absorption of the debris.

He wanted to know how the data downloading and uploading was going. She told him it was fine, downloading nightly and uploaded for the first time on Sunday evening. I mentioned that we wrote down in her journal the times of the head turnings.

He said it was important to keep a log of any episodes’ dates and times to match with the uploaded data in order to determine if the episodes were epileptic or not. We pledged to log carefully if any further episodes occurred.

He then performed a neurological evaluation. He checked her eye movements, grip strength, reflexes, and arm extension, and asked her to find specified objects in pictures in a small spiral booklet. She identified what was asked. Then he asked her to close her eyes and tell him what number he would trace on her right palm. She got two out of three correct. I asked him if it was a fair test given the typical physician handwriting, and we all had a laugh. In general, she checked out okay.

He then tried to pull up images from her brain surgery on the monitor, but it was taking some time. He asked if meanwhile we would like to see pictures of the brain surgery that were on his phone. We were excited to see, and when he pulled them up it looked like they were in a presentation format. I said, “She is going to be presented at a conference, isn’t she!” He answered, “Yes, as part of a number of cases, and there will be an article in a few years.” We told him we would love for him to let us know when it is published, and he said, “Of course.”

He asked again if we were sure about seeing the surgery photos, because some people are not comfortable seeing such images. We assured him we were all quite fine with it, so he showed us the photos. They were fascinating!

If you do not like gory surgery descriptions, you might want to skip down past the not-gory photo below the bullet point descriptions.

To imagine the photo angles, know that the problem area has been on the left side of Salwa’s brain, along the parietal/temporal lobe border, above and behind the left ear. So they positioned her lying on her right side with something behind her back to keep her torso from rolling, and her head was held by some kind of vice to keep it still. The left side of her head was facing up and the photos were taken from above her head and from the left side. It was a robotically assisted surgery; more about that at some point.

The photos showed the following:

  • The tray for the neurostimulator battery sitting inside the piece of skull that had been slightly hollowed to fit the device.
  • A side shot of Salwa’s head and the surgical instrument table to which was taped her note that said “Give me a nice haircut — and good words!” Salwa remembers seeing the note there.
  • A shot showing the hinged up underside of her scalp where the U-shaped cut into the skull allowed the hinging up of part of the skull for brain exposure.
  • The exposed brain showing the moist shininess of cerebrospinal fluid.
  • The exposed brain with an electrode mesh sitting on it.
  • A shot of the area of resection aftermath with some pooled blood.
  • Draping around the surgery environment.

We all three absolutely oohed and ahed over the images. We asked what volume of brain matter was resected. He replied that the piece was about two by two centimeters. That is about four-fifths of an inch. (Later Ibrahim remarked he was missing a third dimension that we would like to know.) We were very happy to have seen the photos and learn these details! The epileptologist said he would email the photos to Salwa. We thanked him for sharing. Then the computer monitor finally displayed the image he wanted to show us — a CT scan showing the neurostimulator and leads.

He said we could take a picture of this screen, and we did, so there it is above for your viewing pleasure.

Then he said he was going to see if his colleague was there, and left for a minute. We were not sure what that meant. When he came back he apologized that the neurostimulator company rep was not there. We looked puzzled. He explained that from now on, every visit with him would also include some time with the neurostim device person to go over data uploads and match any abnormalities with the log of symptoms that Salwa is supposed to keep. The doctor said that maybe the person was in a surgery helping with another device implantation, and that he would see about making sure the rep can be there next week for Salwa’s followup visit with the surgeon.

We were a bit surprised to hear that the rep was supposed to be there at visits from now on, but it was good to know, and we were disappointed that the rep was not going to be with us to provide information today, but we took it in stride. I guess we thought that the epileptologist would be the person who read and interpreted the data uploads, but it makes sense that the device rep would do that. Physicians have other things to do with their valuable time. Later, I realized that probably the reason he was not there was because we didn’t call on discharge day to request a post-op appointment; we instead used a previously made appointment to serve for the post-op visit. Things happen, is sometimes our response to such events. I expressed our gratitude to the epileptologist and told him that we appreciate him very much. He said it was his privilege to be of service. I expressed my feeling of being glad to be alive in the 21st century with such hopeful technology available.

He said this good fortune is only available in the United States currently. He said, “If we were in France, we would have had a different discussion.” Her initial evaluation would have ended with “Keep taking your medications and consider getting a VNS.” That is a vagal nerve stimulator and something Salwa never wanted. More about that in a later post.

We said our goodbyes and headed for the car, jazzed about having seen the photos and hearing the hopeful hypothesis that her head turning/hand clenching episodes might have been effects of surgical debris. Although very happy with this visit, Salwa was by now really exhausted. She held on to me walking to the first elevator, and doubted if she could walk to the garage elevator and the car. But Ibrahim assured us that the car was very close to the elevator. She pushed herself along and was okay.

This day called for healthy smoothies on the way home. I had asked our son Sama’an ahead of time to be ready to order for us as he has the Juiceland app on his phone. As we left the parking garage, I texted him our location and how many minutes away we were from the shop. He placed the order, and within 15 minutes we had the smoothies and were wending our way home through rush hour traffic. It felt good to settle into the back seat next to Salwa while our gallant gentleman took us home.

It was a long day for Salwa. But a very full one with good information.

Shortly after we got home, I got a text from the aunt of our son-in-law Chris. She and her husband J had offered to have a meal delivered and it was on its way. It was so nice to see the bag on the porch with delicious Indian food.

Day 8 Post-Op: Cyborgs

Tuesday, November 17

Today Salwa slept in again, again thanks to Benadryl.

It was another day of resting in bed mostly, watching How to Cook That, and eating small soft meals every two hours or so.

She had one tiny hand feeling in the morning. And when she woke up from a nap, her legs and arms twitched once at the same time. It felt weird.

In the afternoon, Salwa went outside to get some sun. This stretched into walking to the end of the driveway where she posed for a photo.

I checked the mail while we were outside, and found a letter for her from one of Alice’s long-time friends, C. Salwa insisted on bypassing our policy of setting mail aside for 24 hours before opening. It was a letter of encouragement with a vibrantly colored and gorgeous illustration of Salwa as a “cool cyborg chick.” Salwa was delighted by it all. I had to ask her to explain the cyborg part. The reference is to the fact that Salwa has computerized electronic parts in her head that can monitor and impact her brain. This is her generation’s term for my generation’s “bionic person.”

This conversation helped me decide how to create a sign that Salwa had requested that we put in front of the house. She wanted neighbors passing by to know that she had gone through an impressive procedure for her brain. I had been stuck trying to figure out what to put on the sign. Now I knew.

A repurposed garage sale sign and purple folder made a good backdrop for the sign I created on Canva while Salwa sat on a chair in the sun.

A COOL

CYBORG

BRAIN

SURGERY

WARRIOR

LIVES HERE.

We love this sign. Other families have had signs for high schoolers, middle schoolers, sports teams, and houses of worship. Why not put this one in front of our door?

Day 7 Post-Op

Today Salwa slept in, thanks to the Benadryl. Her throat was more sore today. This is most likely what caused the head-turning seizures. Any time she is ill, even slightly ill, she will have a cluster of seizures. The last time she was ill was October 22, when she had a tiny fever that provoked a cluster of seven seizures, four tonic-clonic and three complex partial, in one hour, and prompted a 911 call and an overnight stay at a nearby hospital.

Today Ibrahim took another day off work and I worked slowly and interruptedly from home.

Food consumption was improved for Salwa today–chewing was easier. The sore throat was improved by some lemonade. On the menu today:

  • hot cocoa
  • potato omelette
  • homemade lemonade with lemons from our tree and a few drops of mazaher (orange blossom water)
  • grape Gatorade
  • lemon pepper chicken with slices potatoes
  • a clementine
  • chocolate mayonnaise cake
  • homemade chicken soup with rice and lemon

Salwa decided to prioritize resting and mostly stayed in bed.

A high point of the day was a visit from Salwa’s best friend, Gina. We have known her since high school years when Salwa was a freshman and Gina was a sophomore. Gina brought a purple bag of unhealthy but essential snacks, and a white ceramic pumpkin shaped planter with beautiful succulents.

They hung out in the room for a bit. Then Salwa wanted to upload her brain wave data to the medical provider site and to show us and Gina that process.

It took Ibrahim a few tries to find a network outlet that worked with the cable provided with the laptop. But finally it worked!

Now we wait to see the epileptologist on Wednesday afternoon to find out what her brain is doing, both what we have been able to see and what we have not.

Day 7 Post-Op, Evening: Fears, Anger, Tears, and Laughter

After dinner, Salwa said she is now noticing a possible deficit with her dominant arm, which is the side the surgeon and epileptologist said might be slightly impaired after surgery. Up till this day, her preoccupation had been mainly with pain and some nausea. Now that the pain had subsided, she was noticing what she said was a feeling of struggling to move her arm, and struggling to use her hand because of that. She wrote her observations and reactions in her purple journal. She said it was hard to write along a straight line and expressed great sadness, frustration, and anger about this.

She and I talked, and then her baba talked about this potential issue. It could improve on its own. It could improve with some kind of therapy. She will see the epileptologist on Wednesday, and he can assess any impairment and authorize therapy. Solutions are in reach, and the brain can mend and create new pathways.

We had all agreed to support her decision that she preferred facing some impairment to accept surgery that was likely to end violent and potentially life-threatening seizures. We acknowledged the legitimacy of anger and disappointment about noted impairments, and reiterated our pledge to be there to support the journey along with family and friends. In addition to monitoring any impairment, we still have to find out what the brainwaves show, and when and if the medical team will activate the neurostimulator. We have concluded based on her symptoms after surgery that they will activate the device, but usually this is not done until a month has passed. Healing is the primary focus for now.

The surgeon had said that one known focal seizure area was removed, and two were not. The lesion that her seizures have come from is very large, and it was a complex task to identify focal points and which could be safely removed. It took two medical team meetings to discuss recommendations and brain mapping. We should not be surprised that some seizure activity is persisting. Two focal areas are where the electrodes are living, waiting to go to work if a need is proven. The seizures of last night were likely due to mild illness. But they did not progress to tonic-clonic and loss of consciousness (LOC). Her sister Alice (rhymes with peace) theorized that the head-turning observed during the onset of mild illness might be the worst seizures that she has going forward, which we all believe would be a great improvement.

Pep talks will continue.

Life tasks continue. This evening Sama’an started his process of making kolaches. Salwa went to rest and watch funny animal videos to cheer herself up. That counts as a task as it helps with emotional health and therefore with physical healing.

Ibrahim and Sama’an washed and put away a half ton of dishes.

We labored across a period of about four hours over our first experience ordering eyeglasses for Ibrahim online, often feeling, as Winnie-the-Pooh has said, like a bear of very little brain. The process was interrupted by my work’s product launch meeting, helping Salwa, taking care of the dog, dinner, dishes, and phone calls.

We have a division of labor. He does the dishes, folds the laundry, takes care of technology fixes and updates, and handles most of the house and car fixes and garden weeding. I cook a lot of healthy food including weekly production of yogurt and lebni (strained salted yogurt). I handle the bills, budgeting, and most of the mail (which has piled up a bit too much now), and am the one who does online purchases, bill payments, and signups.

I researched and compared prices and styles from four different vendors, chosen based on Consumer Reports information and Google searches. We settled on one and chatted with a sales agent to find out dimensions of the desired product. I entered the prescription details three times before creating an account so the date would save permanently. We struggled to measure different dimensions of the current eyeglasses, especially as the right arm broke off during a hospital visit and has its hinge area obscured by a blob of opaque tape. Then I learned that key measurements are often printed on the inside of one arm, and indeed, I found them on his. He could not read the numbers as his glasses were off of his head and he is blind to small font without them. We got a holiday season discount of twenty percent, and almost submitted documentation for a school employee ten percent additional discount, but gave up because we were in a hurry and my iPhone would not send the email with the photo I took of his school district badge. Ibrahim is horrified by the online shopping experience. Long story short: his last pair of in-person glasses cost nearly $400; this online pair cost less than $100. We just have to wait two to three weeks like with the brick-and-mortar store that oversells and upsells.

Right before Salwa was planning to have a pre-shower snack, I got a text from my cousin, whom we call Couzle because he is my cousin but the age of an uncle to my children.

—–

I hope the adult bibs were at least tolerably received.

Lol not really sure what that means.

You might want to check your front door.

——

I found a package. It got sprayed with disinfectant and put in timeout for twenty minutes. Then I brought it to Salwa and helped her to open it. There was a sweet note on top.

She found two adult bibs inside and burst into laughter. They had nice designs — flowers and butterflies — and she was delighted and amused.

There have been and will be a lot of meals and snacks consumed in bed, on top of a lap and chest draped with towels. These bibs are useful, and the thoughtfulness is apparent.

She put on the long bib for her snack. Some tears started flowing as she called her boyfriend L to check in and give him an update.

She might be ready for L to come from north Texas to visit soon. She misses him a lot. He has been there for her, constant and steady like a rock, for the past three years of college and seizures. They were crushed that because of the pandemic he would not be able to come see her during her hospital stays in June and now.

The call gave her some more strength and encouragement. She enjoyed a shower with the comfort provided by the new space heater that Ibrahim got on his Sunday afternoon shopping rounds. Our bathroom has the best setup for her current needs — a spacious garden tub with moveable shower head — but can get cold on chilly nights.

Her surgical incision is healing very well. She was happy to see comparison photos. But she got scared when the head throbbing escalated, which it usually has done in the evenings. She asked me to tell her that everything will be okay, and I did. It is a broken bone in her skull, and that kind of injury can generate swelling that presses on nerves, and intense pain. I asked her to imagine that just like she knits yarn together, her bone cells are knitting themselves together, and that much of the pain is where the knitting has to be completed.

Bedtime was a lot later than we wanted, but we still shared our “happy things,” and vowed to do better with earlier bedtime tomorrow.

We are thankful that we have what we have that so many do not: a roof over our heads in a very comfortable house, some kind of health insurance to cover treatment and therapies, although Medicare for All would be highly preferred in our family, and funds for healthy food and pampering products like space heaters.

We are also thankful for the greater wealth of family and friends to help us navigate these hopeful and trying times. Aunts and uncles, grandmother, cousins, and friends, co-workers and faith community members have texted, Whats Apped, called, and sent or brought meals, gifts, and cards. Our little boat of recovery is buoyed up on the most loving waves, and we feel blessed beyond measure.

Day 6 Post-Op: Mild Clinical Seizures

Well, Salwa concluded the day with a few mild focal partial to almost complex partial seizures.

The day started out to be lovely. She was anle to eat some chocolate mayo cake — nausea took a hike. She rested, walked around a bit, and had a wonderful Face Time chat with her Babcia (grandma) Alice. Before the evening, dear friends Auntie R and Amo J stopped by for a short masked visit to drop off a get-well gift for Salwa. She got out of bed to stand in the dining room to speak with them. She was very thankful for their presence.

After dinner, Salwa was expressing fatigue and weakness, and said she was unsure about trying to take the recommended daily shower. Up till then she had had only sensory seizures since the surgery. Shortly after that, I saw her have a focal partial seizure.

What it looked like was her right hand clenching and her head turning to the left and wavering a few times, and then turning to the right and then to the left. What a disappointment she and we felt, and how frightened she was! She was terrified this would lead to a violent tonic-clonic seizure. I tried to be as comforting as possible. It was concerning. Baba was out running grocery errands, and we told him when he got home.

The head turning happened at 7:40 pm, 12:04 am, and 12:20 am. Baba saw the second one and we both saw the third one. Salwa said she also had what she calls a full body feeling during the first and third episodes. To her this feels “like my body is being erased except for the feelings of the muscles that are moving with the seizures” and the conscious awareness is a bit impaired. She had head turning and hand clenching before the surgery, but the head turning was always to the right.

Aside from the concern about this bout of seizures, she had to deal with extra pain to her neck from the involuntary head turning. The left side of her neck is very tender, probably from the position she was placed in for an almost-five-hour surgery plus the fainting episode in the ICU when her head flopped as she fainted onto the bed from standing after pain medicine had been administered.

These episodes made her feel very afraid. We knew ahead of the surgery that the surgeon could not remove all the epileptogenic areas and that is why they placed electrodes in two areas and connected the wires to the neurostimulator. But it was so nice to have almost six full days of just a few very faint sensory seizures. Salwa was so happy and relieved, and now she got fearful again.

Her dad and I were there for her. I saw the first episode, he saw the second, and we both witnessed the third. After this one she started shivering while not feeling cold, which we have seen multiple times since April of this year. We have asked a few neurologists about this and both said they were not aware of any relationship a between shivering and epilepsy.

I gave her a rescue pill and called the neuro clinic answering service to notify the on-call neuro to call us back and advise us.

Ibrahim and I debated warming or not warming. Despite her claiming not to feel cold, he put a heating pad on her chest under a blanket. She put on a cardigan with help. We covered her head to reduce body heat loss and brought a hot towel to put behind her neck. The shivering stopped and she felt better. We took her temperature and there was no fever.

About twenty minutes later we got the call back. The on-call neurologist was familiar with her case. She wanted to know if the seizures looked different than what we had seen before surgery. Yes and no, but mostly not different. She said if another clinical (observable) seizure occurred we should drive her to the ED for evaluation. The doctor said if she keeps having such seizures the evaluation would be to determine if there is any bleeding that could cause seizures or if she needs to have medication adjustments.

We called her brother Sama’an to come to our room for extra support. I voiced the logical thoughts.

If we ended up going to the ER, it would be loud and brightly lit, which would not be great for her throbbing headache. Also, the involuntary head turning had worsened her already bad neck soreness. Sitting in a car for a 40-minute, 32-mile drive would not be ideal. COVID-19 cases have been rising in the med center. Since the rescue pill she had had no more observable seizures. We were all tired as it was now past 1:00 am.

We suggested we all try to sleep and if any more seizures occurred we would administer another rescue pill. Surely that would knock out the brain mischief and we could see about an ER trip in the later morning if needed.

Salwa said she did not think she could relax and sleep. She was worried about having another seizure. Sama’an suggested Benedryl, which really can help her sleep. I looked up medication interactions and there were none.

Salwa too a Benedryl capsule. We tried to share our “happy things” for the day to end on a positive note. Salwa was thankful that Auntie R and Amo (uncle) J had stopped by to wish her well. They had brought a sweet gift and some cookies. and within ten minutes was out for the night.

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