I'm not a superstitious person. Most people consider the number 13 unlucky. Some buildings don't have a 13th floor, there's a movie franchise based on Friday the 13th; in Western Culture, we've been taught to fear 13. Me, 13 was my lucky number. It's always been good to me. So as people rung in the new year and Facebook lit up with comments like "I hope this year isn't going to be full of bad luck," I was sitting at home, snug as a bug in front of my fireplace, looking forward to what, for all intents and purposes should have been MY year.
And for the first couple of days, it really was starting to seem that way. For the first time, I made it through January 2nd without a complete breakdown. Gregory would have been 15, and I finally found a sliver of peace for the first time. On the 4th we had dinner with my mom, grandmother and brother for his birthday and to send him off for job training in Iowa. My fibro was actually behaving, I wasn't experiencing too many flare-ups. Then I called my mom on January 10th to update her on how my brother was doing at his job training. The conversation was, for all of the millions of conversations we've had in my 35-years, perfectly normal. Until she told me that she had fallen the day before and she doesn't remember how she fell, exactly, but she said her ankle really hurt and that she was going to go to the doctor the next day because she thought she broke it or sprained it at the least. By this point, it was the end of the conversation and she sounded tired and in hindsight, maybe a little confused. I asked her if she hit her head and she said that she didn't, that she just landed on her leg and ankle wrong. I was concerned, but the conversation I had with her was, like I said, normal. I told her good night and that I'd check on her tomorrow.
I didn't get a chance to call her the next day. She had been getting sick over night and slept downstairs. By morning, she was acting confused, was very uncoordinated and was upsetting to my grandmother. By the afternoon, my grandmother had called 911 as my mom became completely unable to communicate coherently, was getting sick and was unable to move without help. As soon as my husband got the call (my poor grandmother didn't want to upset me), we rushed to the hospital. While in the ER, my mother needed to be intubated and after an emergency CT Scan, she was rushed to the Neuro Trauma unit where they put a bore hole into her head. They found massive bleeding and swelling in the regular CT Scan and deemed the borehole and drain to remove the ever-building pressure as well as monitor it. It wasn't until a CT Scan with contrast did we find that my mother had not only just one but two aneurysms. One very small, "benign" aneurysm at the base of her neck that would need monitoring for the rest of her life, if she survived the one very large big bad aneurysm in her prefrontal cortex.
Surgery was scheduled and we sat a quiet vigil at my mom's bedside as she was highly sedated. We sat through the purgatory that is the surgery waiting room all day, to find that the aneurysm was not the normal aneurysm on a branch of a vein, ballooning out. It was at the brain vessel that goes between the left and right parts of the brain, where the branches form. Not only that, but it had connected between the right and the left of the Y. It was the biggest baddie of the big bad. During the month she spent in the Neuro Trauma Unit, we nearly lost my mom several times. Between blood clots, deflated lungs, seizures and strokes, kidney shutdown and near complete organ shutdown. They could not ween her from the ventilator so they put a tracheotomy in, saying that they were easier to ween than a regular ventilator. After over a month-and-a-half in the Neuro-Trauma unit, she was transferred to a LTAC facility (Long Term Acute Care) to be weened off of the ventilator. While they were able to accomplish that, mom still was in a coma and still required the tracheotomy to breath with humidified air with moderate pressure. Having accomplished what they set out to do, they gave us two days to find an Skilled Care Facility for daily care and recovery.
Upon arrival to the skilled care facility, my mother had woken up. She recognized us, we could tell, through her eye expressions. We finally were able to get her to point to yes/no questions. It was a terribly slow and agonizing process (for her, I'm certain) and for us as well. We had her in two places close to me. I would spend 6-8 hours a day by mom's bed because I couldn't stand to leave her alone. Most times she was sleeping and those times I wanted nothing more than to get into bed with her and sleep, too. But she was hooked up to room air through the tracheotomy. After 2ish months, I had my mom transferred to a traumatic brain injury rehab where she would receive 6 hours of strenuous therapy as opposed to the 3 hours at the facility she started at.
It was at the TBI Rehab that we started to see mom start to come back to us. Perhaps not 100%, but her short-term memory was getting better. Her sense of humor was returning. Her interests were returning and she was starting to gain strength. As for that tracheotomy, it was gone her 2nd day there. She was walking (short distances) and learning ways to take care of herself with the aide of a caregiver. All signs pointing to her coming home, with some assistance required. Six months to the day that she was admitted to the hospital, she was discharged from rehab to her home under the care of a live-in caregiver.
Living back at home was an adjustment. For everyone. My grandmother's small sitting room downstairs was converted to my mother's bedroom. We now had a live-in caretaker with us and a string of therapists as well as nurses coming and going throughout the weeks; all the while Brad was juggling work and evening responsibilities, it was summer break so Eddie and I would take mom to her appointments during the day as well as help keep an eye on my grandmother. For the first two weeks or so, things were going really well. Then mom started to regress a little. She lost interest in things. She couldn't keep her medicines down and it was becoming difficult for her caretaker to help her with transfers.
At her follow-up appointment with her Neurosurgeon, after getting a new CT scan we found the BIG reason why. Where the aneurysm once sat and the swelling once was, was fluid. Typical, said her surgeon, in these types of scenarios. They would surgically implant a shunt that would drain the fluid and hopefully she would start to get back to mom's new normal, and perhaps we might even see some new improvements as well. So surgery was scheduled for the end of July with the assurance that of the Neuro Surgeries, these were the easiest, quickest and had the easiest recovery.
On the morning of July 26th, we all met at the hospital's admissions area. Brad and I went back with my mom to pre-op while she waited to go back. Everything went smoothly there, and in a timely manner. When they took her back, we went to the purgatory that is the surgical waiting room. No matter how routine the surgeon tells you a surgery will be, when you hear a code called in one of the surgical suites, your heart can't help but jump a beat as you beg and plead with the Universe that it isn't your loved one. I do the only thing I can when I need comfort or to calm down, and that was to take comfort in the pages of a book and just wait until mom's surgeon came out. He took a little longer than we anticipated, but when he came out he assured us that everything went well and that mom was recovering, we could wait in purgatory until they took her up to her room in the Neuro Trauma ICU (where we were reunited with some friendly faces of the nursing staff that cared for my mom earlier in the year and were happy to see her awake and talking!).
Getting discharged took a little bit of trouble as she had her surgery on a Friday, so she didn't get home until Tuesday. And again, she was doing well for a few days. Then she started to get sick. She started acting extremely out of it, and when she had a fever over 101d, I finally said to my brother to get her to the ER immediately. She ended up spending all of August in the hospital. It turns out that she had 3 very bad infections that you can only get from the hospital. In addition to that, her surgeon conveniently realized that the shunt and vent had been recalled for over three months! During the course of treatment, mom had 4 brain surgeries in two weeks to remove the recalled pieces, put an external shunt in, put a pressure monitor in, and finally, when the infection cleared, put a new and non-recalled fully functioning shunt back. The infectious disease team had indicated that my mother was not the only one of her surgeon's patients who were being treated for post-op infections. Which makes sense when the recalled pieces were removed, her surgeon was trying to talk us out of suing the manufacturer/himself/the hospital and we didn't quite understand why that was the first thing out of his mouth.
Once mom was well enough to leave the hospital, she was too weak to come home, so she was discharged to a Skilled Care Facility where she has been getting PT/OT and Speech Therapy so that she might be able to return home. However, we are realists and understand that she may not be able to return home in her current condition. For now, we just keep hoping that we can get additional outside help through Neuropsychology, Art and Music Therapy as well as the memory care she's receiving now that she might be able to unlock parts of her brain that aren't being used and be able to train them to compensate for at least some of the trouble she's having. It may not be a couple of months. It may take a year, or two. We'll be here waiting and cheering her on. And if she has made all of the progress she can make, then these extra services will only enrich her life. Regardless, we have our mom. We will take her any way we can get her, and are aware of how extremely fortunate we are that she even survived.
This year has certainly been difficult, excruciating, agonizing and not anything I would wish on my worst enemy. There's a blog post about that coming up. But first, I needed to explain how I/we got here.
Surgery was scheduled and we sat a quiet vigil at my mom's bedside as she was highly sedated. We sat through the purgatory that is the surgery waiting room all day, to find that the aneurysm was not the normal aneurysm on a branch of a vein, ballooning out. It was at the brain vessel that goes between the left and right parts of the brain, where the branches form. Not only that, but it had connected between the right and the left of the Y. It was the biggest baddie of the big bad. During the month she spent in the Neuro Trauma Unit, we nearly lost my mom several times. Between blood clots, deflated lungs, seizures and strokes, kidney shutdown and near complete organ shutdown. They could not ween her from the ventilator so they put a tracheotomy in, saying that they were easier to ween than a regular ventilator. After over a month-and-a-half in the Neuro-Trauma unit, she was transferred to a LTAC facility (Long Term Acute Care) to be weened off of the ventilator. While they were able to accomplish that, mom still was in a coma and still required the tracheotomy to breath with humidified air with moderate pressure. Having accomplished what they set out to do, they gave us two days to find an Skilled Care Facility for daily care and recovery.
Upon arrival to the skilled care facility, my mother had woken up. She recognized us, we could tell, through her eye expressions. We finally were able to get her to point to yes/no questions. It was a terribly slow and agonizing process (for her, I'm certain) and for us as well. We had her in two places close to me. I would spend 6-8 hours a day by mom's bed because I couldn't stand to leave her alone. Most times she was sleeping and those times I wanted nothing more than to get into bed with her and sleep, too. But she was hooked up to room air through the tracheotomy. After 2ish months, I had my mom transferred to a traumatic brain injury rehab where she would receive 6 hours of strenuous therapy as opposed to the 3 hours at the facility she started at.
It was at the TBI Rehab that we started to see mom start to come back to us. Perhaps not 100%, but her short-term memory was getting better. Her sense of humor was returning. Her interests were returning and she was starting to gain strength. As for that tracheotomy, it was gone her 2nd day there. She was walking (short distances) and learning ways to take care of herself with the aide of a caregiver. All signs pointing to her coming home, with some assistance required. Six months to the day that she was admitted to the hospital, she was discharged from rehab to her home under the care of a live-in caregiver.
Living back at home was an adjustment. For everyone. My grandmother's small sitting room downstairs was converted to my mother's bedroom. We now had a live-in caretaker with us and a string of therapists as well as nurses coming and going throughout the weeks; all the while Brad was juggling work and evening responsibilities, it was summer break so Eddie and I would take mom to her appointments during the day as well as help keep an eye on my grandmother. For the first two weeks or so, things were going really well. Then mom started to regress a little. She lost interest in things. She couldn't keep her medicines down and it was becoming difficult for her caretaker to help her with transfers.
At her follow-up appointment with her Neurosurgeon, after getting a new CT scan we found the BIG reason why. Where the aneurysm once sat and the swelling once was, was fluid. Typical, said her surgeon, in these types of scenarios. They would surgically implant a shunt that would drain the fluid and hopefully she would start to get back to mom's new normal, and perhaps we might even see some new improvements as well. So surgery was scheduled for the end of July with the assurance that of the Neuro Surgeries, these were the easiest, quickest and had the easiest recovery.
On the morning of July 26th, we all met at the hospital's admissions area. Brad and I went back with my mom to pre-op while she waited to go back. Everything went smoothly there, and in a timely manner. When they took her back, we went to the purgatory that is the surgical waiting room. No matter how routine the surgeon tells you a surgery will be, when you hear a code called in one of the surgical suites, your heart can't help but jump a beat as you beg and plead with the Universe that it isn't your loved one. I do the only thing I can when I need comfort or to calm down, and that was to take comfort in the pages of a book and just wait until mom's surgeon came out. He took a little longer than we anticipated, but when he came out he assured us that everything went well and that mom was recovering, we could wait in purgatory until they took her up to her room in the Neuro Trauma ICU (where we were reunited with some friendly faces of the nursing staff that cared for my mom earlier in the year and were happy to see her awake and talking!).
Getting discharged took a little bit of trouble as she had her surgery on a Friday, so she didn't get home until Tuesday. And again, she was doing well for a few days. Then she started to get sick. She started acting extremely out of it, and when she had a fever over 101d, I finally said to my brother to get her to the ER immediately. She ended up spending all of August in the hospital. It turns out that she had 3 very bad infections that you can only get from the hospital. In addition to that, her surgeon conveniently realized that the shunt and vent had been recalled for over three months! During the course of treatment, mom had 4 brain surgeries in two weeks to remove the recalled pieces, put an external shunt in, put a pressure monitor in, and finally, when the infection cleared, put a new and non-recalled fully functioning shunt back. The infectious disease team had indicated that my mother was not the only one of her surgeon's patients who were being treated for post-op infections. Which makes sense when the recalled pieces were removed, her surgeon was trying to talk us out of suing the manufacturer/himself/the hospital and we didn't quite understand why that was the first thing out of his mouth.
Once mom was well enough to leave the hospital, she was too weak to come home, so she was discharged to a Skilled Care Facility where she has been getting PT/OT and Speech Therapy so that she might be able to return home. However, we are realists and understand that she may not be able to return home in her current condition. For now, we just keep hoping that we can get additional outside help through Neuropsychology, Art and Music Therapy as well as the memory care she's receiving now that she might be able to unlock parts of her brain that aren't being used and be able to train them to compensate for at least some of the trouble she's having. It may not be a couple of months. It may take a year, or two. We'll be here waiting and cheering her on. And if she has made all of the progress she can make, then these extra services will only enrich her life. Regardless, we have our mom. We will take her any way we can get her, and are aware of how extremely fortunate we are that she even survived.
This year has certainly been difficult, excruciating, agonizing and not anything I would wish on my worst enemy. There's a blog post about that coming up. But first, I needed to explain how I/we got here.
