Today is my 55th birthday. Another year on this planet. Apropos to write again about how life can change you when you are least expecting it.
Continued from prior blog...
The next day was Thanksgiving, we were 36 hours in at this point. Russ was receiving the tPA and was due for his third dose around 12noon and then a CT scan. Overnight, his O2 levels dropped and he had to be put on oxygen. An overnight x-ray confirmed fluid in both of his lungs, it was disturbing how fast that came on. He was put on a fluid removal drug and began every four hour respiratory therapies. The critical care doctors kept talking about a breathing tube as they didn’t want to get to a point where his body was working so hard on breathing that it couldn’t focus on other more important things. It was very difficult not to react emotionally, and I felt good that I was holding my own on that front; I resisted inserting the tube. To me, it felt like a turning point that wasn’t yet warranted. His body was strong, I knew this because we focus on our nutrition and keeping our bodies in good condition. Also influential in the decision to hold off was his response to the breathing therapies. Although he could not aspirate well on his own, we could suction his secretions and he was doing a great job of working hard with the therapists. I wanted to give him a chance to work through it on his own. The critical care docs were not entirely pleased with me, but again I stress to anyone facing a critical situation that no one knows your loved one better than you. I wasn’t placing Russ in harm’s way by defying their recommendation, I was advocating not to take a significant and serious step when he was strong enough to work through it on his own. I knew it was still a real possibility, and I let the doctors know I respected their advice and would heed it if and when it became clear there was not another, less invasive way.
On a much more positive note, he was doing well on Thanksgiving, responding to verbal questions and physical stimulus and speaking. His speech was very compromised, slurry and not many consonants, but he was speaking!! Also, he moved both of his feet all of the time, even during the deepest sleep, so I knew his body was functioning and that perhaps we would be in a good place when we could actually ascertain what function he had lost due to the stroke.
My husband is a funny guy. He must have known I needed to smile because when I asked him how he was doing he said he was fine, but that he needed a new outfit. I asked him what for, and he said he needed it for space travel! I was like really babe, when are you going? He said, I have already been and now I am going back, but I need a new outfit before I do. I assured him I would hop on Amazon and have one sent asap. Bless my adorable funny man.
He completed his third dose of tPA, unfortunately his CT did not show significant change. The neurosurgeons recommended another round, so we kept going. He passed a few clots through the drain, which was awesome. We continued with breathing therapies and x-rays to stay on top of his lungs, which were improving very very slowly. I still felt great as any improvements are a good thing, and even though we didn’t know the source of his bleed, we were still moving in a better direction. He completed 3 rounds (One round = 3 doses 8 hours apart) of the tPA, which helped in moving the blood out of his brain. More tPA would not have improved our situation, so we stopped that drug after his ninth dose.
In addition to continuing to work on his lungs, he was struck by hiccups, which sounds funny, but really wasn’t. Apparently, hiccups are a common affliction with neuro patients. Poor Russ had them for hours upon hours. Ice chips seemed to help, but he could only have a few chips every hour as he still did not have the ability to swallow properly. Six hours one night, four hours the next day, then seven hours, then two, they were persistent!
Six days after his admittance he was strong enough, and enough blood had moved out of his brain that the doctors performed a procedure called a CT angiogram. Said simply, they inject die into the vessel network in the brain and take pictures to watch how the blood flows. The neurosurgeons did not hold high hopes for the test telling us the origin of the bleed, they were pretty sure he had a blood pressure spike in an area where the vessels were weak and it caused a leak, and this test wouldn’t help identify that, but we went ahead as there are other potential causes for a bleed like Russ’ and we needed to rule them out. He was sedated and the test was performed. As his most prevalent issues were the inability to swallow, no gag reflex, and profound sleep, they strongly suspected his injury had occurred mid brain, near or on his brain stem. So that is where they were most interested to see the angiogram test results.
Also on this day, we began “raising the drain.” The drain had done all it was going to in terms of accelerating the exit of blood, the next step was to raise the drain gradually over three days and then remove it. The brain and body will reabsorb the residual blood over time. The docs said four to six weeks was a good timeline to allow the majority of the blood to reabsorb, at least enough so they would not be impeded by the volume in looking at additional scans/tests. The drain intervention and the tPA allowed us to get most of the blood out of his brain ventricles (we all have four, and having blood in any of them is not a good thing), and now we needed to let the body do it’s thing.
The next day marked one week since we had come into the hospital, and it was a turning point in that we got the angiogram test results back and they were very telling. Russ has an Arteriovenous Malformation, or AVM. In the simplest terms, it is a cluster of rogue capillaries that allow much more blood to pass through them than they should. Over time, the capillary walls become weakened and leak or bleed. An AVM is very unusual, they occur in less than 1% of the population. They are believed to form in the womb when the brain network is forming, so something he had his whole life. They are not hereditary, and he didn’t do anything lifestyle wise to make this happen. It just is. The test confirmed the AVM was near his brain stem, in the deep brain, underneath his left brain lobe, next to his brain stem, not actually in the brain itself, but nestled deep under. He will require surgery to remove it from what is honestly, a very tricky location.
The angiogram also clearly showed his tumor and it is shockingly large, it kind of looks like an elongated golf ball. It also confirmed it was growing from the outside in, which is typical of a meningioma tumor, thus assuring us it was almost certainly benign. Meningiomas occur in about 5% of the population, and most impacted people never even know they have them. They grow extremely slow. Russ’ had been there a long time, many years. A small portion of it (think the tip of your pinky) has impeded the brain barrier. This means it has to be removed. This will require another brain surgery.
There is a lot more that happened in this beginning stage of this journey. The abbreviated version is that Russ did not have to be intubated, he worked hard to get his lungs strong and we worked through that situation without further invasive intervention. We were able to get him through his stay with minimal additional drugs, only administering him medications when they were critically needed, and that required active involvement, respect for each of the many physician’s individual and collective knowledge and recommendations, independent research, and sometimes not agreeing with those who are far better trained in medicine than you. Our purpose was not to inundate you with detail, but to include it where there might be a learning for someone else facing a similar situation. Advocating in an emotional situation is challenging at best, and we are all in this life together.
We have chosen to view all of this as a blessing, and we ask only that you support us in our approach. Russ’ AVM could have continued to bleed instead of closing itself off, and that would have killed him. We now know what the problem is and how to deal with it, and that, we believe, is a gift.
Russ continues to have issues with his vision, his balance and some of his cognitive abilities. He cannot drive, nor do many of the things he (and I) took for granted prior to this. He is actively healing and preparing his mind and body for a long road ahead. He continues to go to therapy to help with all of these issues, and we work on them every day.
Yes, we are facing two or more brain surgeries over the coming months, and that is a bitch. But here is just a sliver of the things we are grateful for:
“Owning Your Best Life Now” doesn’t mean prancing through tulip patches with a never-ending smile while shielding your eyes from the brilliance of rainbows, although that does sound like a lot of fun (especially the prancing). It means facing whatever life brings you with as much grace, agility, grit and acuity as you can muster; deconstructing what scares you so much you cannot breathe, until it no longer rules you because your tools are sharpened and the game is on. Said simply, think, behave and do your best. We are working on it.
Continued from prior blog...
The next day was Thanksgiving, we were 36 hours in at this point. Russ was receiving the tPA and was due for his third dose around 12noon and then a CT scan. Overnight, his O2 levels dropped and he had to be put on oxygen. An overnight x-ray confirmed fluid in both of his lungs, it was disturbing how fast that came on. He was put on a fluid removal drug and began every four hour respiratory therapies. The critical care doctors kept talking about a breathing tube as they didn’t want to get to a point where his body was working so hard on breathing that it couldn’t focus on other more important things. It was very difficult not to react emotionally, and I felt good that I was holding my own on that front; I resisted inserting the tube. To me, it felt like a turning point that wasn’t yet warranted. His body was strong, I knew this because we focus on our nutrition and keeping our bodies in good condition. Also influential in the decision to hold off was his response to the breathing therapies. Although he could not aspirate well on his own, we could suction his secretions and he was doing a great job of working hard with the therapists. I wanted to give him a chance to work through it on his own. The critical care docs were not entirely pleased with me, but again I stress to anyone facing a critical situation that no one knows your loved one better than you. I wasn’t placing Russ in harm’s way by defying their recommendation, I was advocating not to take a significant and serious step when he was strong enough to work through it on his own. I knew it was still a real possibility, and I let the doctors know I respected their advice and would heed it if and when it became clear there was not another, less invasive way.
On a much more positive note, he was doing well on Thanksgiving, responding to verbal questions and physical stimulus and speaking. His speech was very compromised, slurry and not many consonants, but he was speaking!! Also, he moved both of his feet all of the time, even during the deepest sleep, so I knew his body was functioning and that perhaps we would be in a good place when we could actually ascertain what function he had lost due to the stroke.
My husband is a funny guy. He must have known I needed to smile because when I asked him how he was doing he said he was fine, but that he needed a new outfit. I asked him what for, and he said he needed it for space travel! I was like really babe, when are you going? He said, I have already been and now I am going back, but I need a new outfit before I do. I assured him I would hop on Amazon and have one sent asap. Bless my adorable funny man.
He completed his third dose of tPA, unfortunately his CT did not show significant change. The neurosurgeons recommended another round, so we kept going. He passed a few clots through the drain, which was awesome. We continued with breathing therapies and x-rays to stay on top of his lungs, which were improving very very slowly. I still felt great as any improvements are a good thing, and even though we didn’t know the source of his bleed, we were still moving in a better direction. He completed 3 rounds (One round = 3 doses 8 hours apart) of the tPA, which helped in moving the blood out of his brain. More tPA would not have improved our situation, so we stopped that drug after his ninth dose.
In addition to continuing to work on his lungs, he was struck by hiccups, which sounds funny, but really wasn’t. Apparently, hiccups are a common affliction with neuro patients. Poor Russ had them for hours upon hours. Ice chips seemed to help, but he could only have a few chips every hour as he still did not have the ability to swallow properly. Six hours one night, four hours the next day, then seven hours, then two, they were persistent!
Six days after his admittance he was strong enough, and enough blood had moved out of his brain that the doctors performed a procedure called a CT angiogram. Said simply, they inject die into the vessel network in the brain and take pictures to watch how the blood flows. The neurosurgeons did not hold high hopes for the test telling us the origin of the bleed, they were pretty sure he had a blood pressure spike in an area where the vessels were weak and it caused a leak, and this test wouldn’t help identify that, but we went ahead as there are other potential causes for a bleed like Russ’ and we needed to rule them out. He was sedated and the test was performed. As his most prevalent issues were the inability to swallow, no gag reflex, and profound sleep, they strongly suspected his injury had occurred mid brain, near or on his brain stem. So that is where they were most interested to see the angiogram test results.
Also on this day, we began “raising the drain.” The drain had done all it was going to in terms of accelerating the exit of blood, the next step was to raise the drain gradually over three days and then remove it. The brain and body will reabsorb the residual blood over time. The docs said four to six weeks was a good timeline to allow the majority of the blood to reabsorb, at least enough so they would not be impeded by the volume in looking at additional scans/tests. The drain intervention and the tPA allowed us to get most of the blood out of his brain ventricles (we all have four, and having blood in any of them is not a good thing), and now we needed to let the body do it’s thing.
The next day marked one week since we had come into the hospital, and it was a turning point in that we got the angiogram test results back and they were very telling. Russ has an Arteriovenous Malformation, or AVM. In the simplest terms, it is a cluster of rogue capillaries that allow much more blood to pass through them than they should. Over time, the capillary walls become weakened and leak or bleed. An AVM is very unusual, they occur in less than 1% of the population. They are believed to form in the womb when the brain network is forming, so something he had his whole life. They are not hereditary, and he didn’t do anything lifestyle wise to make this happen. It just is. The test confirmed the AVM was near his brain stem, in the deep brain, underneath his left brain lobe, next to his brain stem, not actually in the brain itself, but nestled deep under. He will require surgery to remove it from what is honestly, a very tricky location.
The angiogram also clearly showed his tumor and it is shockingly large, it kind of looks like an elongated golf ball. It also confirmed it was growing from the outside in, which is typical of a meningioma tumor, thus assuring us it was almost certainly benign. Meningiomas occur in about 5% of the population, and most impacted people never even know they have them. They grow extremely slow. Russ’ had been there a long time, many years. A small portion of it (think the tip of your pinky) has impeded the brain barrier. This means it has to be removed. This will require another brain surgery.
There is a lot more that happened in this beginning stage of this journey. The abbreviated version is that Russ did not have to be intubated, he worked hard to get his lungs strong and we worked through that situation without further invasive intervention. We were able to get him through his stay with minimal additional drugs, only administering him medications when they were critically needed, and that required active involvement, respect for each of the many physician’s individual and collective knowledge and recommendations, independent research, and sometimes not agreeing with those who are far better trained in medicine than you. Our purpose was not to inundate you with detail, but to include it where there might be a learning for someone else facing a similar situation. Advocating in an emotional situation is challenging at best, and we are all in this life together.
We have chosen to view all of this as a blessing, and we ask only that you support us in our approach. Russ’ AVM could have continued to bleed instead of closing itself off, and that would have killed him. We now know what the problem is and how to deal with it, and that, we believe, is a gift.
Russ continues to have issues with his vision, his balance and some of his cognitive abilities. He cannot drive, nor do many of the things he (and I) took for granted prior to this. He is actively healing and preparing his mind and body for a long road ahead. He continues to go to therapy to help with all of these issues, and we work on them every day.
Yes, we are facing two or more brain surgeries over the coming months, and that is a bitch. But here is just a sliver of the things we are grateful for:
- We know exactly what we are dealing with
- We have a team of incredible physicians who treat us with respect, are impeccably trained and who are bringing their A game inside and outside of the OR
- We have an incredible family, the best neighbors ever, and network of friends to support us
- We have a roof, and food, beautiful fur family members, and insurance, and the wherewithal to go through a difficult situation
- We are TOGETHER. We found each other later in life (after a 32 year break that followed after we grew up and went to elementary and high school together). This is a GIFT, where would either of us be right now if we were not facing this together as a couple? When we got married, we were old enough to know what it actually means to respect and care for each other, no matter what life brings.
- We have the means to handle whatever happens, even if we can no longer work
- We are physically and mentally equipped to deal with this
“Owning Your Best Life Now” doesn’t mean prancing through tulip patches with a never-ending smile while shielding your eyes from the brilliance of rainbows, although that does sound like a lot of fun (especially the prancing). It means facing whatever life brings you with as much grace, agility, grit and acuity as you can muster; deconstructing what scares you so much you cannot breathe, until it no longer rules you because your tools are sharpened and the game is on. Said simply, think, behave and do your best. We are working on it.
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