I found a place to shoot pool the night before last. It is called Bola Ocho (8 Ball). It felt good to have a normal night. Besides having to speak Spanish, it felt like I was back home. I convinced my driver, and new friend, to go with me until I felt safe. The pool hall was really nice. It was much nicer than the ones in the states. There were mostly businessmen in their suits blowing off some steam after work. It was clean, there was no smoking, and there were actually waiters that racked your balls for you after each game. The wings were delicious too!
Melchor shot a couple of games with me, but he had never played and I could tell he was not enjoying himself. He told me he would just sit and keep an eye on me. I shot around by myself when I noticed that the guy at the table next to me was shooting by himself. I asked him, in my broken Spanish, if he would like to play with me. He thought about it for a minute and then said yes. I got REALLY lucky because Antonio speaks some English. More English than I speak Spanish. So, he spoke in English to me all night and I spoke to him in Spanish. I found out he is an artist and an architect. We had so much fun playing together that we agreed to meet up the next night.
The next night we shot a few games of pool and then just sat and talked for a couple hours. I asked him what he was doing the next day after work and he said he was going to fix his mountain bike. Then, he changed his mind. He asked me if I would like to go to Santiago Mexico (about 40 min away from Monterrey). He said he had driven through and really wanted to go spend the day there.
Monday, June 13, 2016
Waking Up from the Coma
Today is the big day! Dr Cantu told us that he would stop the ketamine at 8am and to be at the hospital by 10am. At 9:40am he texted me on WhatsApp and told me that she woke up from the coma very calm and was doing so well that they were going to extubate (disconnect her feeding tube and ventilator) at 1:00pm! We went ahead and left for the hospital, since Melchor was already on his way.
It was nice to see her without the machines attached to her. It is unnerving to watch a machine breathe for someone. She was still, very much out of it from the ketamine. She just lay there with her eyes closed making strange faces. At 3:00pm she began moving her legs a lot. She is spitting up some, but they said this was normal. Bibb, of course, is micromanaging every move the ICU nurses make and expecting me to relay the message in Spanish (Note: I speak VERY little Spanish and certainly NO medical Spanish) Lol.
I think we will spend the night in the ICU tonight. Neither of us want Mom to wake up and there not be anyone here for her.
We ran back to the hotel long enough to throw a few things into a suitcase and pick up a pizza to go at CPK. Back at the hospital Bibb and I set up shop for the night. There were 2 other families "camping out" in the ICU waiting room. Bibb was the first to go back, then me, then Mom asked for Bibb again. By this time it was 9:30 and I was starting to get tired. I decided to try to get some rest while Bibb was with her. Between washing my face, brushing my teeth, and trying to get comfortable on the hard waiting room floor, it took me an hour to semi fall asleep. All of a sudden I hear, in an angered whisper, "AMANDA! What happened to you coming to relieve me?! It is 6AM!" I shot up from the floor exhausted and disoriented. "I'm sorry! Why didn't you come get me?! Don't be mad at me! I didn't even have my cell phone to set an alarm because you never brought it back to me!" "Here." Bibb said handing me my, now dead, cell phone. I went back to the ICU room and spent the next few hours exhausted and taking care of mom. (Note: there are no windows in the ICU room, so I have no idea how light or dark it is outside). All of a sudden I notice some numbers on one of Mom's monitors that appears to be changing every 60 seconds, but it can't be
It was nice to see her without the machines attached to her. It is unnerving to watch a machine breathe for someone. She was still, very much out of it from the ketamine. She just lay there with her eyes closed making strange faces. At 3:00pm she began moving her legs a lot. She is spitting up some, but they said this was normal. Bibb, of course, is micromanaging every move the ICU nurses make and expecting me to relay the message in Spanish (Note: I speak VERY little Spanish and certainly NO medical Spanish) Lol.
I think we will spend the night in the ICU tonight. Neither of us want Mom to wake up and there not be anyone here for her.
We ran back to the hotel long enough to throw a few things into a suitcase and pick up a pizza to go at CPK. Back at the hospital Bibb and I set up shop for the night. There were 2 other families "camping out" in the ICU waiting room. Bibb was the first to go back, then me, then Mom asked for Bibb again. By this time it was 9:30 and I was starting to get tired. I decided to try to get some rest while Bibb was with her. Between washing my face, brushing my teeth, and trying to get comfortable on the hard waiting room floor, it took me an hour to semi fall asleep. All of a sudden I hear, in an angered whisper, "AMANDA! What happened to you coming to relieve me?! It is 6AM!" I shot up from the floor exhausted and disoriented. "I'm sorry! Why didn't you come get me?! Don't be mad at me! I didn't even have my cell phone to set an alarm because you never brought it back to me!" "Here." Bibb said handing me my, now dead, cell phone. I went back to the ICU room and spent the next few hours exhausted and taking care of mom. (Note: there are no windows in the ICU room, so I have no idea how light or dark it is outside). All of a sudden I notice some numbers on one of Mom's monitors that appears to be changing every 60 seconds, but it can't be
Friday, June 10, 2016
Day 2 of the Coma
Mom started moving some today. I could've sworn when I walked in, held her hand, and told her "It's Amanda. I'm right here," that she mouthed my name. I know they told me this would happen, but it is still freaking me out...I mean she REALLY moves sometimes. It looks as if she can feel all the tubes running down her throat, which is really bothersome to me. They keep telling me I shouldn't stay the night here, but I worry that she will be able to tell I'm not here and I feel guilty because I know that if it were me in that bed, she wouldn't leave my side. She would be sitting in this hard upright chair, brushing my hair, holding my hand and probably attempting to put makeup on me lol. I'm crying just thinking about it.
I called Dad while I was sitting next to her. I was on the phone laughing and talking when her ventilator monitor started going nuts and she jolted in bed and moaned some. I told Sarah that I was worried that the stress of feeling as if my father was there made her freak out. Sarah laughed and told me I needed to write that down to tell her when she woke up...Sorry about that phone call Mom!
I called Dad while I was sitting next to her. I was on the phone laughing and talking when her ventilator monitor started going nuts and she jolted in bed and moaned some. I told Sarah that I was worried that the stress of feeling as if my father was there made her freak out. Sarah laughed and told me I needed to write that down to tell her when she woke up...Sorry about that phone call Mom!
Thursday, June 9, 2016
Sabrina's Story
We moved into our new house in Oxford, GA back in May of 2006. In June, something happened that would change my mom's life forever. Mom had been rushing around getting the new house and yard looking perfect before my Dad's family came over the 4th of July. The two of us were home alone one day. I was sitting at the kitchen bar on my computer and Mom was outside gardening.
All of the sudden I heard something I had never heard...my mom curse. She walked inside grasping her wrist and very calmly said, "Amanda, I think I'm going to need you to take me to the hospital." She removed her hand to inspect her injury and blood began gushing from her arm. She quickly grasped it again and reiterated, "Yes. Yes. I need to get to the ER." We had just moved to the area! I had no idea where the nearest hospital was! I begged her to let me call 911, but she insisted I not do that and go get a neighbor instead. The neighbor's house was 2 acres away...not that far, but when you're panicked, it seemed like forever. I was screaming as I ran to the house. "Help me! My mom is going to bleed out! Help!!" No one was at home. I was delirious! Hearing all the commotion, three women ran out from the house across the street. I rushed them to the house.
When I opened the door and saw our 2 dogs, they refused to come in. "Put the dogs away! Put the dogs away!" I kept saying "Please! My mom is going to die! Help her! They won't hurt you!" I shoed the dogs out the closest door into the backyard and let the ladies in. Little did I know, however, that when Mom had come into the house, through another door, she had left it opened. Our sweet, concerned, intelligent dogs made one big circle back into the house. Now I had 0 help, 1 mom bleeding on the floor, 2 dogs running through the house, and 3 women standing on our kitchen counters. I shoed them out again and made sure they couldn't finagle their way back. All that commotion, and running around and what did the 3 ladies do?...they dialed 911.
I found out what had happened outside. Mom was trying to pry the plug out of the bottom of a pot so it could drain. She got a pair of Fishers scissors, wrapped her other arm around the pot, and began jabbing at the plug trying to loosen it. She slipped and the scissors shot straight into her wrist.
She was rushed by ambulance to the hospital where they interrogated me as to my mom's happiness and will to live. It took a lot to convince them that my mom was not suicidal. They said she was lucky that the scissors were dull enough to push past her major artery without severing it. She left with a couple stitches and a clean bill of health. Over the next couple days, however, Mom realized that something was terribly wrong. Her hand began to burn and curl up to where she couldn't open it. We dealt with moronic doctors who told her it was all in her head and that she needed to "suck it up and manipulate her hand." They sent her to physical therapy, which only made things worse.
The pain began to spread up her left arm, then down her right arm, her legs, and even her vocal chords. Most days she couldn't walk at all and was confined to bed or a wheelchair. She couldn't drive. She couldn't be touched. Even the light touch of a sheet was excruciating. Some days she couldn't speak. She said it felt like her body had been doused in oil and set on fire while her bones were being crushed. She was on so many different medications and none of them touched the pain.
She finally found a doctor who diagnosed her with Reflex Sympathetic Dystrophy (RSD), also known as Complex Regional Pain Syndrome (CRPS). They tried everything relieve her bone-crushing pain: Nerve blocks, ketamine treatments, she even went to a doctor in St Louis who cut along the major nerves in her legs to try to release some of the pressure on them. A family friend did some research and contacted Mom one day. They were running a controversial study through a doctor in Tampa, where they were sending the most severe RSD cases to Mexico to be induced into a coma using a really high dose of ketamine. This would, hopefully, reboot her brain (much like you would reboot a computer) and reset her nervous system. We travelled to and from Tampa over the course of the next few months for Dr Kirkpatrick to test Mom's pain threshold, video her, ask her questions, etc.
When the time finally came for the coma I was scared. We knew there was a chance that she could die, be a vegetable, or worse...that it might not work and she would still be alive and in excruciating pain. She was willing to try anything though. A life in as much pain as she was in, is no life at all. I couldn't talk to her while she was in Mexico (none of the people who went with her were very tech savvy). That was difficult to say the least. I just sat and waited for a whole month. Not knowing what was going on. If she was okay or not.
When she came back it didn't seem as if the treatment had worked. She was in even worse shape than before, but as the weeks progressed she got better, and better. We had gotten our mom back! The next 8 years were spent thouroughly enjoying life. There is nothing like RSD to make you grab life by the balls and scream "Carpe Diem!!!" We went to Peru for a month. We hiked through the Amazon, walked around Machu Picchu, rode dune buggies and went sand boarding, swam with sea lions, played with monkeys. We went out dancing and to concerts! It was the best 8 years of both of our lives.
This past January (2016) mom was out doing yard work again. She came inside and felt fine. That night when her boyfriend stopped by, he noticed that her knuckle was red and swollen with 2 puncture wounds in the middle. "It looks like you got bit by a spider." No one thought anything of it. On January 20, Mom and I went to a wine and cheese pairing class at Vino Venue, where I work. When we got back to my apartment, she complained that her arm was hurting. "Must have developed wine-drinkers' elbow," I joked. Two days later she called me...it was the call I had been dreading for 8 years. "It's back," she said. "I had 8 wonderful years that I am so grateful to God for, but it's back." Retriggered by a nonvenomous, non painful spider bite.
Not only was it back, but it was worse than before. The pain had migrated into her head. She said head RSD is worse than any other kind she had experienced thus far. Dr Rollins and his team worked tirelessly to stop it from spreading. They managed to get it out of her head, but she was still right back where she was before the coma.
So here we are again. In Monterrey, Mexico for another ketamine coma....I'm scared and hopeful and emotional and trying to be strong for my mom and sister, all at the same time. I feel as if the world is spinning around me too fast for me to process how I should act or what I should do. The only thing I can do is try to hold on until it stops.
All of the sudden I heard something I had never heard...my mom curse. She walked inside grasping her wrist and very calmly said, "Amanda, I think I'm going to need you to take me to the hospital." She removed her hand to inspect her injury and blood began gushing from her arm. She quickly grasped it again and reiterated, "Yes. Yes. I need to get to the ER." We had just moved to the area! I had no idea where the nearest hospital was! I begged her to let me call 911, but she insisted I not do that and go get a neighbor instead. The neighbor's house was 2 acres away...not that far, but when you're panicked, it seemed like forever. I was screaming as I ran to the house. "Help me! My mom is going to bleed out! Help!!" No one was at home. I was delirious! Hearing all the commotion, three women ran out from the house across the street. I rushed them to the house.
When I opened the door and saw our 2 dogs, they refused to come in. "Put the dogs away! Put the dogs away!" I kept saying "Please! My mom is going to die! Help her! They won't hurt you!" I shoed the dogs out the closest door into the backyard and let the ladies in. Little did I know, however, that when Mom had come into the house, through another door, she had left it opened. Our sweet, concerned, intelligent dogs made one big circle back into the house. Now I had 0 help, 1 mom bleeding on the floor, 2 dogs running through the house, and 3 women standing on our kitchen counters. I shoed them out again and made sure they couldn't finagle their way back. All that commotion, and running around and what did the 3 ladies do?...they dialed 911.
I found out what had happened outside. Mom was trying to pry the plug out of the bottom of a pot so it could drain. She got a pair of Fishers scissors, wrapped her other arm around the pot, and began jabbing at the plug trying to loosen it. She slipped and the scissors shot straight into her wrist.
She was rushed by ambulance to the hospital where they interrogated me as to my mom's happiness and will to live. It took a lot to convince them that my mom was not suicidal. They said she was lucky that the scissors were dull enough to push past her major artery without severing it. She left with a couple stitches and a clean bill of health. Over the next couple days, however, Mom realized that something was terribly wrong. Her hand began to burn and curl up to where she couldn't open it. We dealt with moronic doctors who told her it was all in her head and that she needed to "suck it up and manipulate her hand." They sent her to physical therapy, which only made things worse.
The pain began to spread up her left arm, then down her right arm, her legs, and even her vocal chords. Most days she couldn't walk at all and was confined to bed or a wheelchair. She couldn't drive. She couldn't be touched. Even the light touch of a sheet was excruciating. Some days she couldn't speak. She said it felt like her body had been doused in oil and set on fire while her bones were being crushed. She was on so many different medications and none of them touched the pain.
She finally found a doctor who diagnosed her with Reflex Sympathetic Dystrophy (RSD), also known as Complex Regional Pain Syndrome (CRPS). They tried everything relieve her bone-crushing pain: Nerve blocks, ketamine treatments, she even went to a doctor in St Louis who cut along the major nerves in her legs to try to release some of the pressure on them. A family friend did some research and contacted Mom one day. They were running a controversial study through a doctor in Tampa, where they were sending the most severe RSD cases to Mexico to be induced into a coma using a really high dose of ketamine. This would, hopefully, reboot her brain (much like you would reboot a computer) and reset her nervous system. We travelled to and from Tampa over the course of the next few months for Dr Kirkpatrick to test Mom's pain threshold, video her, ask her questions, etc.
When the time finally came for the coma I was scared. We knew there was a chance that she could die, be a vegetable, or worse...that it might not work and she would still be alive and in excruciating pain. She was willing to try anything though. A life in as much pain as she was in, is no life at all. I couldn't talk to her while she was in Mexico (none of the people who went with her were very tech savvy). That was difficult to say the least. I just sat and waited for a whole month. Not knowing what was going on. If she was okay or not.
When she came back it didn't seem as if the treatment had worked. She was in even worse shape than before, but as the weeks progressed she got better, and better. We had gotten our mom back! The next 8 years were spent thouroughly enjoying life. There is nothing like RSD to make you grab life by the balls and scream "Carpe Diem!!!" We went to Peru for a month. We hiked through the Amazon, walked around Machu Picchu, rode dune buggies and went sand boarding, swam with sea lions, played with monkeys. We went out dancing and to concerts! It was the best 8 years of both of our lives.
This past January (2016) mom was out doing yard work again. She came inside and felt fine. That night when her boyfriend stopped by, he noticed that her knuckle was red and swollen with 2 puncture wounds in the middle. "It looks like you got bit by a spider." No one thought anything of it. On January 20, Mom and I went to a wine and cheese pairing class at Vino Venue, where I work. When we got back to my apartment, she complained that her arm was hurting. "Must have developed wine-drinkers' elbow," I joked. Two days later she called me...it was the call I had been dreading for 8 years. "It's back," she said. "I had 8 wonderful years that I am so grateful to God for, but it's back." Retriggered by a nonvenomous, non painful spider bite.
Not only was it back, but it was worse than before. The pain had migrated into her head. She said head RSD is worse than any other kind she had experienced thus far. Dr Rollins and his team worked tirelessly to stop it from spreading. They managed to get it out of her head, but she was still right back where she was before the coma.
So here we are again. In Monterrey, Mexico for another ketamine coma....I'm scared and hopeful and emotional and trying to be strong for my mom and sister, all at the same time. I feel as if the world is spinning around me too fast for me to process how I should act or what I should do. The only thing I can do is try to hold on until it stops.
Wednesday, June 8, 2016
Coma Day
The day began normal. We rushed around to get ready. Skyped my sister, grandma, and Mom's boyfriend (who were all out eating at Applebee's together). Rushed to the hospital. Found out we needed the confirmation number for the bank transfer and spent an hour at hospital admissions trying to get that. The next thing I knew, there I was in ICU being told it was time to leave so they could put my mom into an induced coma. I could have said something comforting, something insightful. I could have told her how much I loved her and that it was going to kill me to even spend a week without her. I could have held her and told her how strong and inspiring she was and that I knew she would be okay. I could have told her that she was the most amazing person I knew and how there were so many people praying for her and how God was going to wrap his arms around her and protect her. There I was...and all I could say as I gently leaned down to hug her was "I'll see you in a week." It's all I've been able to think about all day.
The ICU waiting room was occupied by two families who looked like they were dealing with a lot and I didn't want to intrude, so I made my way back to the lobby. I sat down in the cafe and waited for the okay to go back and see Mom. I was crying and laughing thinking about happy times before the CRPS came back and consumed our lives. I'm sure I looked like a crazy person. I thought I had finally gotten myself under control when Dr. Cantu came down and asked me how I was doing...apparently not well because I became a blubbering mess again. He explained exactly what they did to Mom and told me he would find out the visiting hours and text them to me.
Un ratita (a little while) later Sarah showed up with lunch for me. Sarah is the mother of another coma ketamine patient, Jessica. They moved here from Naples, FL two years ago to be close to Dr Cantu for treatments. Sarah has been a Godsend. She speaks fluent Spanish now and has arranged all our rides, the money transfer, our hotel. She even got us a great deal on the hotel, since she has stayed there so many times. I truly don't know how we would have managed without her. She gave me the grand tour of the hospital. How to get food at the cafe (more difficult than it sounds), withdrawal pesos, and "sneak" into the ICU. I got to meet her other daughter, Michelle, who is visiting from FL for the summer. We got along so well. It's going to be nice having them around for the week. It makes me feel much less alone.
We hung out and talked until 4:30. I still hadn't heard back as to whether or not I could go see Mom, so I texted Dr Cantu and asked...he said I could. I braced myself as I stepped into the room I had left her in. Sarah had prepared me for the spectacle of tubes and machines I would see hooked up to my mom, but it was still difficult. I asked Dr. Cantu if it would still hurt for me to touch her. He said that she was getting so much ketamine that she wouldn't feel pain. So I held her hand and rubbed her arm, things I haven't been able to do since January. I talked to her and told her how well she did. I read some of my cooking magazines and talked to her about the different recipes (I knew if I did that she would feel my presence and know it was me there lol). I told her I loved her and that I would think of something much more eloquent to say to her when she woke up.
The ICU waiting room was occupied by two families who looked like they were dealing with a lot and I didn't want to intrude, so I made my way back to the lobby. I sat down in the cafe and waited for the okay to go back and see Mom. I was crying and laughing thinking about happy times before the CRPS came back and consumed our lives. I'm sure I looked like a crazy person. I thought I had finally gotten myself under control when Dr. Cantu came down and asked me how I was doing...apparently not well because I became a blubbering mess again. He explained exactly what they did to Mom and told me he would find out the visiting hours and text them to me.
Un ratita (a little while) later Sarah showed up with lunch for me. Sarah is the mother of another coma ketamine patient, Jessica. They moved here from Naples, FL two years ago to be close to Dr Cantu for treatments. Sarah has been a Godsend. She speaks fluent Spanish now and has arranged all our rides, the money transfer, our hotel. She even got us a great deal on the hotel, since she has stayed there so many times. I truly don't know how we would have managed without her. She gave me the grand tour of the hospital. How to get food at the cafe (more difficult than it sounds), withdrawal pesos, and "sneak" into the ICU. I got to meet her other daughter, Michelle, who is visiting from FL for the summer. We got along so well. It's going to be nice having them around for the week. It makes me feel much less alone.
We hung out and talked until 4:30. I still hadn't heard back as to whether or not I could go see Mom, so I texted Dr Cantu and asked...he said I could. I braced myself as I stepped into the room I had left her in. Sarah had prepared me for the spectacle of tubes and machines I would see hooked up to my mom, but it was still difficult. I asked Dr. Cantu if it would still hurt for me to touch her. He said that she was getting so much ketamine that she wouldn't feel pain. So I held her hand and rubbed her arm, things I haven't been able to do since January. I talked to her and told her how well she did. I read some of my cooking magazines and talked to her about the different recipes (I knew if I did that she would feel my presence and know it was me there lol). I told her I loved her and that I would think of something much more eloquent to say to her when she woke up.
Monday, June 6, 2016
Leaving the Clinic
With the infusions not working, we packed our things and prepared to move back to the hotel. A couple days ago Yolanda, the woman who cleaned our clinic room, came in and Mom and I tried to give her a tip. She seemed nervous and said something really fast that I couldn't make out. We thought maybe she would get in trouble if she took it. The only word I could make out was Lunes (Monday).
So, here it is...Monday. I handed her the tip and she still didn't want to take it. Are you sure? She kept asking in Spanish. She was touched. About 30 min later she came back. She gave me a big hug. Then she walked over to Mom's bed. She placed something in Mom's hands and then clasped them gently in her own and said something to her. I wish I knew what she had said. Even in another language I could tell it was something incredibly powerful and heartfelt. She kissed Mom on the head and walked out of the room. When Mom opened her hand she found this...
She was so touched that she started crying, then I started crying. Love and compassion crosses all boundaries and negates all social, lingual, and racial barriers. Thank you so much to everyone at the Ave clinic. We will never forget Yolanda, Rolando, Dr. Balli, or Adriana.
Back at the hotel, we tried to grab a bite for dinner, but just as our entrees were set down, Mom began to cry. She said she was sad that she was in so much pain. I asked her why she was sad..."Wednesday will be the first day of the rest of your life! You can cry because you're in pain, but don't cry because you're sad. Sad crying is for people who have lost all hope. Be ecstatic that you are getting your life back this week!" We immediately got the check and to go boxes and rushed back to the room. I texted Dr. Cantu that I thought Mom's pain pump must be out of medication and that she was in excruciating pain. When he arrived and looked at the pump he looked up at me and said "The valve is closed." Boy did I feel like a moron. I just knew that mom had opened the valve and didn't even bother to check it. He said it needed to be refilled anyways, which made me feel a little better.
So, here it is...Monday. I handed her the tip and she still didn't want to take it. Are you sure? She kept asking in Spanish. She was touched. About 30 min later she came back. She gave me a big hug. Then she walked over to Mom's bed. She placed something in Mom's hands and then clasped them gently in her own and said something to her. I wish I knew what she had said. Even in another language I could tell it was something incredibly powerful and heartfelt. She kissed Mom on the head and walked out of the room. When Mom opened her hand she found this...
She was so touched that she started crying, then I started crying. Love and compassion crosses all boundaries and negates all social, lingual, and racial barriers. Thank you so much to everyone at the Ave clinic. We will never forget Yolanda, Rolando, Dr. Balli, or Adriana.
 |
| Mom and Dr. Balli |
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| Rolando giving Mom her medicine |
Saturday, June 4, 2016
Day 3
I was exhausted today. So tired, that when Cantu came in to do Mom's booster I fell asleep (some vigilant caregiver I am, right?). I had the strangest dreams.
In one dream:
Mom and I were at a horse show and she saw a hat and vest she wanted to buy for Laura, but it was expensive. The guy's wife, who was working the booth, said if I could do a shot of Whiskey faster than her husband, we could have the hat and vest for free. They kept cheating though. The first shot she filled my glass with ice and her husband's without. The second time she left the wrapper over my mini bottle to block most of the opening....How's that for a random dream?!
The second part of my dream:
I was walking down the road when I felt like I was being followed. A white car was driving really slowly behind me. When a man jumped out of the car, I took off running. I tried to hide. All of a sudden I started hearing this distant beeping. I heard him scream, "I have a tracking device and I'm going to find you!"The beeping kept getting louder and louder! All of a sudden.....
There I was back in the clinic room, but I could still hear the beeping. It was Mom's heart monitor LMAO! The sound of her heart monitor made it into my dream!
Dr. Cantu gave mom a little ball filled with pain medicine for her to control and use when she needed it. It is helping so much! I had opened the valve when she first woke up from her booster to let it run 30min so that the medicine would reach her veins. That way, when she was in pain, and she released the valve, the medicine would go straight into her vein and not have to travel down the IV first. In true Amanda form though I forgot to set my timer and let it run for 3 hours. When I realized what I had done, I turned it off. There is enough medicine in there to last 48 hrs if run nonstop, so its not a big deal that it was left running, but I was curious to see if the third booster was a charm. It wasn't.
9:30 Stopped pain pump
9:55 In pain again (released valve)
10:30 Out of pain
...coma it is.
In one dream:
Mom and I were at a horse show and she saw a hat and vest she wanted to buy for Laura, but it was expensive. The guy's wife, who was working the booth, said if I could do a shot of Whiskey faster than her husband, we could have the hat and vest for free. They kept cheating though. The first shot she filled my glass with ice and her husband's without. The second time she left the wrapper over my mini bottle to block most of the opening....How's that for a random dream?!
The second part of my dream:
I was walking down the road when I felt like I was being followed. A white car was driving really slowly behind me. When a man jumped out of the car, I took off running. I tried to hide. All of a sudden I started hearing this distant beeping. I heard him scream, "I have a tracking device and I'm going to find you!"The beeping kept getting louder and louder! All of a sudden.....
There I was back in the clinic room, but I could still hear the beeping. It was Mom's heart monitor LMAO! The sound of her heart monitor made it into my dream!
Dr. Cantu gave mom a little ball filled with pain medicine for her to control and use when she needed it. It is helping so much! I had opened the valve when she first woke up from her booster to let it run 30min so that the medicine would reach her veins. That way, when she was in pain, and she released the valve, the medicine would go straight into her vein and not have to travel down the IV first. In true Amanda form though I forgot to set my timer and let it run for 3 hours. When I realized what I had done, I turned it off. There is enough medicine in there to last 48 hrs if run nonstop, so its not a big deal that it was left running, but I was curious to see if the third booster was a charm. It wasn't.
9:30 Stopped pain pump
9:55 In pain again (released valve)
10:30 Out of pain
...coma it is.
Friday, June 3, 2016
Day 2
I had Melchor take me to Walmart and the pharmacy to pick up a few things today. The Walmart here is SWEET! It has a parking deck and escalators you can take the carts on. Monterrey even has a Sam's Club. After picking up everything Melchor asked me if I had 7 minutes to go to the top of a hill to see a beautiful view of the city. I looked at the time skeptically. "Five minutes!" He said, veering off path and up the hill. I was worried that Dr Cantu would leave and no one would be with Mom.
The city was beautiful! Melchor pulled out his binoculars and pointed out some of the major landmarks. The futbol stadium, a mansion on top of one of the mountains, Ave hospital (where mom was). "Hola Mama!" I said looking at the hospital through the binoculars and waving...Melchor thought that was pretty funny.
I got back just as Dr Cantu was leaving. He said she did great. When she woke up all she wanted to know was what time it was. She must have asked me 30 times in an hour and a half period (at least it felt that way). I told her that the next time I went to Walmart I was picking up a book on patience (patience, not patients) and a giant ass digital clock!!
The city was beautiful! Melchor pulled out his binoculars and pointed out some of the major landmarks. The futbol stadium, a mansion on top of one of the mountains, Ave hospital (where mom was). "Hola Mama!" I said looking at the hospital through the binoculars and waving...Melchor thought that was pretty funny.
I got back just as Dr Cantu was leaving. He said she did great. When she woke up all she wanted to know was what time it was. She must have asked me 30 times in an hour and a half period (at least it felt that way). I told her that the next time I went to Walmart I was picking up a book on patience (patience, not patients) and a giant ass digital clock!!
Thursday, June 2, 2016
Day 1
We wake up and hop in the shower. Mom is always the first up, so she hopped in first. There is no hot water. She tries everything, but ends up having to take a cold shower. When she gets out and goes to turn on the hot water at the sink there is no water at all. Apparently, someone had turned off the hot water completely. As soon as she turned that knob the hot water started flowing. I felt bad that Mom had to take a cold shower, but not bad enough to not thoroughly enjoy my hot shower.
After getting ready we go downstairs for the best complimentary breakfast I have ever had at a hotel. Omelet bar, fresh fruit and juice, mimosas, pastries, and anything else you could imagine! I felt bad Dr. Cantu told Mom she could only eat a mild breakfast before her procedure, but not bad enough to not eat mine in front of her.
Check out wasn't until 12:00, 1:00pm at the latest, the receptionist apologetically tells me. NOON! The last place I stayed at we had to check out by 10:00am! So, after breakfast, we took a nap.
Melchor came to the hotel to pick us up again. I didn't realize the first time, probably because we were too preoccupied taking in the sights of the city, but Mexico is a dangerous place to drive. I really don't know why they bother painting lines on the road and putting up traffic lights and signs...giant waste of time if you ask me. lmao
Once at the hospital we must endure even more shocked stares by the magnitude of stuff we brought! Oops. They tell us that they have a storage place for all our bags after we've gotten what we need from them. Then they tell me that if there is an empty room in the clinic, I can have it. The room is small, but nice. Laminate wood floors, a bathroom with a walk-in shower, separate vanity, pleather futon, large recliner, a small closet, mini fridge.
Dr. Cantu comes in and begins Mom's 2 hour booster. He stays with her the whole time. Dr Cantu and I talk while she is under. I told him I wanted to practice my Spanish, so he would only speak to me in Spanish a lot of the time. A veces esta muy difficil porque no intienda las palabras, but I'm getting better. He was constantly tending to Mom. Her mouth kept hanging open and each time he would walk over and shut it. I asked him why. He showed me that, when her mouth was open, her breathing was much more shallow. I told him I had an idea...I took her headband and fashioned it over the top of her head and under her chin. It helped a little. Dr Cantu was pleased with it. He still ended up having to put a tube down her throat to open her airway though. I held my breath the entire time, worried something bad would happen with her heart, but it never did. Mom and I were both amazed because she had been having heart problems every time she would get boosters at Rollins', and they were half the dose!
Dr. Balli comes in while mom is under for her first treatment and tells me he wants me to make a list of all the foods we like to snack on back home. I felt like a demanding diva, but I finally made a list.
Baby Carrots
Hummus
Hard boiled eggs
V8 Splash
Cherry tomatoes
Deli Turkey
Saltine Crackers
KIND bars (or oat/nut bars in general)
Almonds
Bottled water
He tells me that none of these should be a problem to get and clarifies: How long do you like your eggs boiled? Cold or hot? What flavor hummus? Raw almonds or salted and roasted?
After her infusion has finished, Dr. Cantu gives me his personal cell phone number and tells me to call or text him anytime day or night if we need anything. If I had a penny for each time I've said "you'll never see that in the states",while in Mexico, I would have a lot of pennies. Everyone here is so sweet and accommodating.
When Mom wakes up she has forgotten where she is and she is obsessed with knowing what time it is. She asks me every 5min "Amanda, what time is it?" She is really thirsty. Visibly thirsty. I can barely see her lips because they have retracted into her mouth. She asks me for water and chapstick every 5min as well. Then she has to go to the bathroom. I tell her that she is way too drugged to walk to the toilet and that I will need to get a bedpan. She barely goes at all. Then, 5 min later, she forgets that she went and insists on going again (she did this twice). She says that she can't go in the bedpan and HAS to get up and go to the toilet. She was right...apparently she is bedpan shy...mission finally accomplished.
Since we were new and hadn't settled in and gotten menus yet, Dr. Valle ordered our dinner for us. "Jessica's" soup (chicken, rice, broth, carrots, avocado, and lime) and a big salad (apples, cheese, strawberries, candied walnuts, and a fresh strawberry vinaigrette). It was DELICIOUS! Both Mom and I couldn't stop oohing and ahhing over it.
I tried to hook up the Roku to no avail. First, no one could figure out the internet password. Then, when we finally figured out the password, the internet was too slow. Dr Balli said he would have a technician come and try to get a better signal. If not, it's telenovela's for the next couple months :-(
Mom was in a lot of pain after dinner. Her feet, hands, and legs were burning and it felt like someone was crushing her bones. I texted Dr Cantu to see if he could call in some pain medicine. Within 20 min the nurse walked in with pain medicine. Once again, something you'll never see in the states. Of course this is CRPS we're talking about and the medication didn't touch the pain. She managed to go to sleep.
Wednesday, June 1, 2016
And We're Off!
The day is finally here. It hadn't truly hit me that we are actually leaving until today. Al came to see us off at Bibb's and brought a special gift for all of us, necklaces. He gave a cross to Mom and I, a heart for Ava, a half heart for Christina that said "Mom", and a half heart for Bibb that said "Daughter." He told us not to take them off until Mom was safe back at home. Plenty of tears were shed on both ends as we climbed into the limo and pulled out of the driveway.
I wanted to punch the security at the airport. They kept asking her if she could get up and walk through and she kept telling her no. Since she couldn't walk through, they had to pat her down in the wheelchair. She winced in pain the entire time. The guy who was helping to wheel mom to the gate saw the anxious look on my face and kept saying "Dont worry. It's just a routine pat down." Nothing is "routine" when you have RSD. We had plenty of time to kill, so we sat at Ecco and ate some mussels and salad. We may have had a little martini too.
We boarded the plane and took flight toward Mexico. The 3.5 hour flight was difficult for Mom. It hurts her so bad to sit with her legs bent for an extended period of time. On top of that it was FREEZING on the plane. When we finally landed they rolled mom to baggage claim and their eyes got bigger and bigger as I unloaded our luggage off the conveyor belt...all 6 of them. I don't know what they were saying in Spanish, but I imagine it was something along the lines of "I don't understand women." At least you couldn't accuse us of being unprepared.
Melchor, our driver, met us. When he pulled his tiny car up to the sidewalk our eyes got huge. How are we going to fit in this circus-sized car, WITH our 6 person-sized bags! It was the first (and hopefully not last) miracle of the trip, but we, and it, did!
Melchor didn't speak any English, so I butchered the little bit of Spanish I knew in order to attempt a conversation. I didn't do half bad, if I say so myself. I even made him laugh a few times (it may have been at me rather than with me, but I'll take what I can get).
The RH hotel is gorgeous and is attached to a very ritzy mall. I'm talkin' Georgio Armani, Hugo Boss, MAC ritzy. We didn't have time to walk around and get into trouble, which is probably a good thing. We were greeted by the man I assume was the manager of the hotel, who asks if we are Miss Sarah Stevens' friends. He welcomes us and tells us, if there is anything we need please don't hesitate to ask. Everyone here is so friendly.
Dr Cantu wanted to meet us at our hotel after he got off work to discuss the plan of action for Mom's treatment. So, as soon as we got to the room, Mom texts him and he says he is down in the lobby. We go down to retrieve him and escort him up to the room, since you need your room key to use the elevator.
Mom will undergo one week of high dose (twice the amount she gets at Dr. Rollins') boosters accompanied by low dow continuous ketamine. The low dose will start at 10mg and then be increased in increments of 5mg/day until they reach the sweet spot (the highest dose that still allows her to sleep at night). After that week, we will wait 3 days and assess her condition. If there is a visible improvement, he will do another week of boosters/continuous. Then, he will wait 3 weeks to do another 2 week booster/continuous session. After that he will send her home and she will continue under the care of Dr Rollins.
If after the 1st week there is no improvement with her condition, we will talk about moving right into the coma and not wasting anymore time and money on something that is not going to work.
After we discuss the plan, I ask Dr. Cantu if he has to go back to work or if he is done for the day, and, if he is done, would he like to grab some margaritas with Mom and I down at the bar. He says he IS done for the day and, although he's not a margarita kind of guy, he would love to grab some tequila with us while we drink our margaritas. We talked and talked about a little bit of everything. He kept ordering margaritas for us and then talking about Mom's condition...I cried...damn you tequila! Then he insisted on picking up the bill. He said we can treat him AFTER he treats Mom. "Fair enough," I agreed.
Back in our room, we get ready for bed and then notice that the lights didn't work. We went to plug in our phones to charge...the outlets didn't work either. I called down to the desk and tried explaining the situation in Spanish. I get put on hold....indefinitely. So, I tromp downstairs in my pajamas and bedroom slippers to find someone who speaks English. When I do and explain to him the strange occurrence with our electricity, he asks if we inserted our card in the slot next to the door. I had never heard of this before, but apparently they do this in certain hotels as an energy saving feature. When the card is inserted, the room comes to life and when you leave and take it out, everything shuts off....lovely. Sure enough, crisis averted.
I wanted to punch the security at the airport. They kept asking her if she could get up and walk through and she kept telling her no. Since she couldn't walk through, they had to pat her down in the wheelchair. She winced in pain the entire time. The guy who was helping to wheel mom to the gate saw the anxious look on my face and kept saying "Dont worry. It's just a routine pat down." Nothing is "routine" when you have RSD. We had plenty of time to kill, so we sat at Ecco and ate some mussels and salad. We may have had a little martini too.
We boarded the plane and took flight toward Mexico. The 3.5 hour flight was difficult for Mom. It hurts her so bad to sit with her legs bent for an extended period of time. On top of that it was FREEZING on the plane. When we finally landed they rolled mom to baggage claim and their eyes got bigger and bigger as I unloaded our luggage off the conveyor belt...all 6 of them. I don't know what they were saying in Spanish, but I imagine it was something along the lines of "I don't understand women." At least you couldn't accuse us of being unprepared.
Melchor, our driver, met us. When he pulled his tiny car up to the sidewalk our eyes got huge. How are we going to fit in this circus-sized car, WITH our 6 person-sized bags! It was the first (and hopefully not last) miracle of the trip, but we, and it, did!
Melchor didn't speak any English, so I butchered the little bit of Spanish I knew in order to attempt a conversation. I didn't do half bad, if I say so myself. I even made him laugh a few times (it may have been at me rather than with me, but I'll take what I can get).
The RH hotel is gorgeous and is attached to a very ritzy mall. I'm talkin' Georgio Armani, Hugo Boss, MAC ritzy. We didn't have time to walk around and get into trouble, which is probably a good thing. We were greeted by the man I assume was the manager of the hotel, who asks if we are Miss Sarah Stevens' friends. He welcomes us and tells us, if there is anything we need please don't hesitate to ask. Everyone here is so friendly.
Dr Cantu wanted to meet us at our hotel after he got off work to discuss the plan of action for Mom's treatment. So, as soon as we got to the room, Mom texts him and he says he is down in the lobby. We go down to retrieve him and escort him up to the room, since you need your room key to use the elevator.
THE PLAN:
If after the 1st week there is no improvement with her condition, we will talk about moving right into the coma and not wasting anymore time and money on something that is not going to work.
After we discuss the plan, I ask Dr. Cantu if he has to go back to work or if he is done for the day, and, if he is done, would he like to grab some margaritas with Mom and I down at the bar. He says he IS done for the day and, although he's not a margarita kind of guy, he would love to grab some tequila with us while we drink our margaritas. We talked and talked about a little bit of everything. He kept ordering margaritas for us and then talking about Mom's condition...I cried...damn you tequila! Then he insisted on picking up the bill. He said we can treat him AFTER he treats Mom. "Fair enough," I agreed.
Back in our room, we get ready for bed and then notice that the lights didn't work. We went to plug in our phones to charge...the outlets didn't work either. I called down to the desk and tried explaining the situation in Spanish. I get put on hold....indefinitely. So, I tromp downstairs in my pajamas and bedroom slippers to find someone who speaks English. When I do and explain to him the strange occurrence with our electricity, he asks if we inserted our card in the slot next to the door. I had never heard of this before, but apparently they do this in certain hotels as an energy saving feature. When the card is inserted, the room comes to life and when you leave and take it out, everything shuts off....lovely. Sure enough, crisis averted.
Friday, January 1, 2016
What is CRPS?
Complex Regional Pain Syndrome (CRPS), formerly known as RSD, is an excruciatingly painful neurological disease that consumes the lives of those it affects.
It isn't hereditary, nor can it be passed from one person to another. Its cause is unknown. It can be triggered by something as minor as an insect bite.
It can affect different people in different ways. In my mom's case, her first bout with RSD, the symptoms were: bone-crushing, burning pain (like someone setting you on fire), allodynia (extreme sensitivity to touch), inability to stand, sit, or walk for any length of time, dark, coarse hair, sensitivity to light, extreme sensitivity to temperature (the cold is painful).
There is no cure for CRPS. There are treatments for it, but every person is different. What is life-changing for one patient may be futile or even detrimental to the next. My mom had tried everything just to eleviate some of the agonizing pain: Nerve blocks, . When we found out they were running a controversial study in St. Louis to Germany and Tampa to Mexico for RSD patients who had exhausted all the other options we barely blinked before rushing off to Tampa, FL to participate.
For 3 years Mom was in so much pain that she wanted to die. She had lost her entire life. She couldn't drive, eat, walk, sit, be touched (even by something as light as a sheet). She was on so many pain killers: 100mg fentynol patches every 3 days, cymbalta, lyrica, oxycodone, oxycotton, and ambien. She still was in debilitating pain. She lived in a hot tub or in bed with heating pads all over her body.
It isn't hereditary, nor can it be passed from one person to another. Its cause is unknown. It can be triggered by something as minor as an insect bite.
It can affect different people in different ways. In my mom's case, her first bout with RSD, the symptoms were: bone-crushing, burning pain (like someone setting you on fire), allodynia (extreme sensitivity to touch), inability to stand, sit, or walk for any length of time, dark, coarse hair, sensitivity to light, extreme sensitivity to temperature (the cold is painful).
For 3 years Mom was in so much pain that she wanted to die. She had lost her entire life. She couldn't drive, eat, walk, sit, be touched (even by something as light as a sheet). She was on so many pain killers: 100mg fentynol patches every 3 days, cymbalta, lyrica, oxycodone, oxycotton, and ambien. She still was in debilitating pain. She lived in a hot tub or in bed with heating pads all over her body.
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