Our HUP transfer vigil ended late Wednesday evening when the transfer team arrived just minutes after Dana and I left my mom’s room at St Mary Medical Center. We were about a mile from home when Dan called to let us know. He said my mom seemed relaxed with the transfer and as she would not have a private room at HUP, Dana and I decided it would not be worth making the drive that evening. We headed for home to regroup and get ready for the stream of train rides and meals at the HUP cafeteria that the week would bring.
The following morning Dana and I arrived at my mom’s room on the sixth floor of Rhoads to find speech and swallow evaluating her to see if she could be released to eat. From the look of things the release was not going to be any time soon. My mom has a deep, rumbling in her chest, the mucus is thick and wet and she has great difficulty getting rid of it. The speech and swallow specialist was using a suction hose to clear my mom’s mouth and as Dana and I unpacked our computers to work she hit a little too far and my mom began vomiting. She apologized to my mom as she reached for the basin by the bed and once my mom was finished she turned to change her gloves and help clean my mom up. While she had her back to my mom she continued to talk in a high, cheery voice.
“”I am sorry about that Mrs. Pine. You just let me change that gown for you and you will be feeling good as new in a jiffy.”
Dana and I were content to listen to the girl ramble on as our computers booted up, but a movement from the bed brought our attention to my mom. She had her eyes on the back of the speech and swallow specialist and was flipping her off. The gesture brought a smile to our faces and made me see my mom and not the disease. Who would have thought that flipping someone off would bring such joy!
As it turns out my mom is now unable to swallow at all without aspirating despite the thickness of the liquids. The attending physician came into my mom’s room later that afternoon to discuss our options. I am not going to pretend to remember a single medical term used in that conversation, the only words that pounded in my head were “feeding tube.” Yes, it has come to that. After considering the risks involved with the three options spelled out for us we decided that it would be best to allow them to insert a percutaneous endoscopic gastrostomy (PEG) feeding tube. It carries the lowest risk of infection and is a more comfortable and long-term solution.
PEG tubes are placed with the aid of an endoscope, the scope going down the throat to assist in guiding the placement of the tube through the wall of the stomach. The surgery is simple and involves little risk or discomfort at least that is what they tell you. The procedure takes about 20 minutes. The PEG tube extends from the interior of the stomach to outside the body through a small incision only slightly larger than the tube itself in the abdominal wall. The tube is prevented from coming out of the stomach by a very small balloon at the end of the tube which is inflated within the stomach after insertion. About three inches of tubing will protrude from the incision area. Initially, there may be some discomfort while getting used to using the system, from gas or air, or from adjusting to the liquid foods themselves.
That is my basic understanding of the tube and how it works. It is much easier to spell it out here than it was to sit in the waiting room of the surgery unit while it was inserted into my mom’s abdomen. Dana and I left the hospital Thursday night knowing the surgery was scheduled for 10am and we would need to be there well ahead of time. My mom seemed relaxed about the decision to insert the feeding tube as Thursday’s visit came to an end but a phone call from Dan while stuck in traffic on the ride into the city Friday morning told Dana and me a different story.
We arrived at my mom’s room 30 minutes later to find her flushed with agitation, her blood pressure was elevated and through her impaired speech I could make out the words “They killed her.” It took Dana and me 40 minutes and a dose of ativan to calm her enough to even ask her what was the problem. The procedure had been canceled due to her elevated blood pressure and we were left to try and convince her to allow doctors to put her back on the surgery schedule and then needed to keep her calm enough for them to proceed. Much easier said than done, but as I said before, we aren’t quitters and we believed this was best for her.
My grandmother was admitted to St Mary Medical Center in July of 2000 after vomiting blood in the waiting room of her cardiologist’s office. After stabilizing her, doctors decided it was in my grandmother’s best interest for them to perform a biopsy of a mass they had discovered in her stomach. As it turns out, they were wrong. After the biopsy my grandmother’s blood did not clot and she proceeded to bleed out as our family stood around her bed and respected the “Do Not Resuscitate” order she had in place. I was alone in the room with her when the bleeding started, thin and red, it poured from her nose and mouth and is an image I would not soon forget. I remember each second as it ticked by, pushing Dana from the room before she witnessed the scene that haunts me to this day, the pounding of my mom’s footsteps as she came down the hall to be by her mother’s side in her final moments. I know this is the moment my mom replayed when she panicked over the idea of her own “stomach” surgery and it is this nightmarish link between my mom and myself that allowed me to understand her and explain to her doctors what she meant when she repeatedly babbled the words “They killed her” as the ativan took effect.
My mom came through the surgery with flying colors and 2mg of morphine helped her get through the night with those same colors. Dana was at her bedside the next day where she remained the entire day, waiting to speak with her doctor. She made sure my mom was comfortable regardless of whether that meant an adjustment to her pillow or another dose of morphine. I took the day to spend with my children and waited for any news from Dana. A few text messages throughout the day let me know that my mom was doing well and a phone call after 9pm filled me in on the visit from Dr Schuster.
The latest MRI shows that the lesion has worsened but there are no additional lesions at this time. All things considered this is wonderful news. The hospital review board has still not come through with their approval on the T cell therapy and Dr Schuster said he will give them a push but if they do not come through by the end of the upcoming week he would like to start my mom on a malaria drug called mefloquine that has had some success with PML patients. The concern with the mefloquine is that its side effects include severe depression, anxiety, paranoia, aggression, nightmares, insomnia, seizures, birth defects, peripheral motor-sensory neuropathy, vestibular (balance) damage and central nervous system problems. Central nervous system events occur in up to 25% of people taking mefloquine, such as dizziness, headache, insomnia, and vivid dreams. I know what you are thinking; my mom has several of those effects already; that is what leads us to our biggest concern, if my mom’s symptoms worsen while on this drug how can we know if it is because of the treatment or the disease?
Dr Schuster would like to go this route because he said we want to be doing something for my mom and if review board approval comes through for the T cell therapy after the mefloquine is started we will continue with both treatments. I do have a lot of assurance in the fact that Dr Schuster is not a man who jumps the gun in any event. He is impatient with the response from the review board but is not the type to let it cloud his judgment of what is best in caring for my mom. I do have much faith in his abilities and believe him to be a brilliant doctor who has not forgotten that behind all the medicine and procedures is a person and her name is Bonnie Pine. We are truly blessed with a doctor who has both intelligence and compassion; these rarely reside equally in one person.
Tonight, before I fall asleep I will once again whisper to God asking him not to take my mom. I will admit that I am very much afraid of the dark and I will pray for the light.
The following morning Dana and I arrived at my mom’s room on the sixth floor of Rhoads to find speech and swallow evaluating her to see if she could be released to eat. From the look of things the release was not going to be any time soon. My mom has a deep, rumbling in her chest, the mucus is thick and wet and she has great difficulty getting rid of it. The speech and swallow specialist was using a suction hose to clear my mom’s mouth and as Dana and I unpacked our computers to work she hit a little too far and my mom began vomiting. She apologized to my mom as she reached for the basin by the bed and once my mom was finished she turned to change her gloves and help clean my mom up. While she had her back to my mom she continued to talk in a high, cheery voice.
“”I am sorry about that Mrs. Pine. You just let me change that gown for you and you will be feeling good as new in a jiffy.”
Dana and I were content to listen to the girl ramble on as our computers booted up, but a movement from the bed brought our attention to my mom. She had her eyes on the back of the speech and swallow specialist and was flipping her off. The gesture brought a smile to our faces and made me see my mom and not the disease. Who would have thought that flipping someone off would bring such joy!
As it turns out my mom is now unable to swallow at all without aspirating despite the thickness of the liquids. The attending physician came into my mom’s room later that afternoon to discuss our options. I am not going to pretend to remember a single medical term used in that conversation, the only words that pounded in my head were “feeding tube.” Yes, it has come to that. After considering the risks involved with the three options spelled out for us we decided that it would be best to allow them to insert a percutaneous endoscopic gastrostomy (PEG) feeding tube. It carries the lowest risk of infection and is a more comfortable and long-term solution.
PEG tubes are placed with the aid of an endoscope, the scope going down the throat to assist in guiding the placement of the tube through the wall of the stomach. The surgery is simple and involves little risk or discomfort at least that is what they tell you. The procedure takes about 20 minutes. The PEG tube extends from the interior of the stomach to outside the body through a small incision only slightly larger than the tube itself in the abdominal wall. The tube is prevented from coming out of the stomach by a very small balloon at the end of the tube which is inflated within the stomach after insertion. About three inches of tubing will protrude from the incision area. Initially, there may be some discomfort while getting used to using the system, from gas or air, or from adjusting to the liquid foods themselves.
That is my basic understanding of the tube and how it works. It is much easier to spell it out here than it was to sit in the waiting room of the surgery unit while it was inserted into my mom’s abdomen. Dana and I left the hospital Thursday night knowing the surgery was scheduled for 10am and we would need to be there well ahead of time. My mom seemed relaxed about the decision to insert the feeding tube as Thursday’s visit came to an end but a phone call from Dan while stuck in traffic on the ride into the city Friday morning told Dana and me a different story.
We arrived at my mom’s room 30 minutes later to find her flushed with agitation, her blood pressure was elevated and through her impaired speech I could make out the words “They killed her.” It took Dana and me 40 minutes and a dose of ativan to calm her enough to even ask her what was the problem. The procedure had been canceled due to her elevated blood pressure and we were left to try and convince her to allow doctors to put her back on the surgery schedule and then needed to keep her calm enough for them to proceed. Much easier said than done, but as I said before, we aren’t quitters and we believed this was best for her.
My grandmother was admitted to St Mary Medical Center in July of 2000 after vomiting blood in the waiting room of her cardiologist’s office. After stabilizing her, doctors decided it was in my grandmother’s best interest for them to perform a biopsy of a mass they had discovered in her stomach. As it turns out, they were wrong. After the biopsy my grandmother’s blood did not clot and she proceeded to bleed out as our family stood around her bed and respected the “Do Not Resuscitate” order she had in place. I was alone in the room with her when the bleeding started, thin and red, it poured from her nose and mouth and is an image I would not soon forget. I remember each second as it ticked by, pushing Dana from the room before she witnessed the scene that haunts me to this day, the pounding of my mom’s footsteps as she came down the hall to be by her mother’s side in her final moments. I know this is the moment my mom replayed when she panicked over the idea of her own “stomach” surgery and it is this nightmarish link between my mom and myself that allowed me to understand her and explain to her doctors what she meant when she repeatedly babbled the words “They killed her” as the ativan took effect.
My mom came through the surgery with flying colors and 2mg of morphine helped her get through the night with those same colors. Dana was at her bedside the next day where she remained the entire day, waiting to speak with her doctor. She made sure my mom was comfortable regardless of whether that meant an adjustment to her pillow or another dose of morphine. I took the day to spend with my children and waited for any news from Dana. A few text messages throughout the day let me know that my mom was doing well and a phone call after 9pm filled me in on the visit from Dr Schuster.
The latest MRI shows that the lesion has worsened but there are no additional lesions at this time. All things considered this is wonderful news. The hospital review board has still not come through with their approval on the T cell therapy and Dr Schuster said he will give them a push but if they do not come through by the end of the upcoming week he would like to start my mom on a malaria drug called mefloquine that has had some success with PML patients. The concern with the mefloquine is that its side effects include severe depression, anxiety, paranoia, aggression, nightmares, insomnia, seizures, birth defects, peripheral motor-sensory neuropathy, vestibular (balance) damage and central nervous system problems. Central nervous system events occur in up to 25% of people taking mefloquine, such as dizziness, headache, insomnia, and vivid dreams. I know what you are thinking; my mom has several of those effects already; that is what leads us to our biggest concern, if my mom’s symptoms worsen while on this drug how can we know if it is because of the treatment or the disease?
Dr Schuster would like to go this route because he said we want to be doing something for my mom and if review board approval comes through for the T cell therapy after the mefloquine is started we will continue with both treatments. I do have a lot of assurance in the fact that Dr Schuster is not a man who jumps the gun in any event. He is impatient with the response from the review board but is not the type to let it cloud his judgment of what is best in caring for my mom. I do have much faith in his abilities and believe him to be a brilliant doctor who has not forgotten that behind all the medicine and procedures is a person and her name is Bonnie Pine. We are truly blessed with a doctor who has both intelligence and compassion; these rarely reside equally in one person.
Tonight, before I fall asleep I will once again whisper to God asking him not to take my mom. I will admit that I am very much afraid of the dark and I will pray for the light.
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