I know...it's been a while. Sorry for the blog hiatus, life got busy and I kind of lost motivation to write.
The last 5 weeks have been kind of monotonous, to me anyway. An outsider looking in might disagree with that assessment but it's kind of like the old analogy of putting a frog in a pot of cold water and slowly turning up the heat until it boils. The frog becomes accustomed and doesn't notice the water getting hotter...and then it boils to death. The boys have yet to try this science experiment in real life, I don't think they've heard the story. That and we don't have any frogs in the yard. I guess we have just gotten accustomed to our situation and are moving forward with life as best we know how.
In the last 6 weeks Sarah has made lots of improvements. It's hard for her and I to recognize them because most are just small strides but as others visit who haven't seen her in a while they notice a big difference.
She has continued to have therapy sessions 5 days a week, mainly focusing on her limb and hand eye coordination and her mobility issues. She does very well walking with the therapists and with me. She still mainly gets around the house in her wheelchair. She's not quite stable enough to walk on her own unassisted but occasionally surprises me. She is getting braver in her attempts. I think the frustration she is feeling is and will be the driving force that eventually gets her back on her feet.
A few weeks ago my mom was watching her and the boys while I was at work. Apparently they were all in the basement and the boys were fighting like always. Sarah decided she would go lay down the law and wheeled to the top of the stairs. They are steep, mind you, and there are about 13 of them. Walking unassisted and alone, she made it down safely and then clear back through the winding hallway to their bedroom. I had installed a handrail on each side of the stairwell months ago in anticipation of her using them but this was the first time in months that she has ventured to the basement. When I heard of her bold feat I kind of got mad at her at first. I pictured her tumbling down the stairs and ending up in the hospital again. After my initial reaction though I felt proud of her and was frankly amazed that she had made it. It showed us that she was capable. I think the fear of falling is holding her back quite a bit most of the time but she's never been the type to let fear stand in the way of what she wants.
Just a few days ago I got home from work and she was craving a carne asada burrito and she wanted to get out of the house bad. You know how pregnant women can be when they get a jones for something specific to eat...you don't wanna mess with that. She was waiting anxiously by the door while I was trying to round up the kids from all corners of the house and find shoes and whatnot. By the time I eventually got ready to head out the door she was outside sitting in the van. It's a short distance but somewhat of an obstacle course including concrete stairs and a sloped driveway cluttered with bikes and cats. She seems to be able to get around as long as she's holding onto something. I'm not sure how she made the gap of about 8 feet from the garage door to the van with nothing to lean on but she did. Again, I was scared but proud.
She continues to have severe double vision which she believes to be the main cause of her imbalance. We have spoken with a few different eye doctors and the consensus seems to be that we shouldn't expect much of an improvement until the brain swelling goes down. 3-6 months is kind of the standard answer we are getting for this but nobody really can know for sure. It could be something else too, we just don't know and the doctors who have seen her are unable to give a concrete diagnosis in regards to her vision and whether or not it is indeed linked to her brain swelling. As frustrating as it is, there's not much we can do. She does have an appointment with a neuro ophthalmologist soon. When we were referred to him 6 weeks ago he said he wouldn't even see her until 3 months after the surgery because of the effect that brain trauma has on the eyes.
Her speech has improved greatly since the surgery but is still nothing like what it was before she got sick. Again, others seem to notice a bigger change than I do. I was watching a video on the computer of her and the kids taken a year or so ago. She was laughing and joking around and it sounded so strange yet familiar to me to hear her how she was. I've gotten so used to the way she is now that I needed that reminder. It made me kind of sad honestly. Not sad like poor me sad, just nostalgic for things to be how they used to be.
Her pregnancy has been kind of a roller coaster. Amazingly our baby girl seems to be healthy and growing normally. We can't wait to meet her. As much as I complain about my kids, I sure do love my babies. It's just when they grow up that you want to send them back to the womb. I'm excited to have her in our life. I even catch myself looking at baby girl clothes at the store sometimes but don't tell anyone. It seems like there are a lot more options for accessorizing your baby girl than there are for boys but that's just my assessment so far.
She has been really nauseous for months now, far more than with our other kids. Maybe it's just the thought of having 5 kids. Maybe I should be the one with chronic nausea... this ultimately landed her in the hospital a few weeks ago. I got a call on a Friday afternoon and she said she was having painful contractions every 5 -10 minutes. I left my job in Bountiful and our neighbor drove her the U of U emergency room where I met them. Her doctor was out of town and though it's kind of a trek from Lehi, we felt like they would be well equipped to handle an emergency delivery on an expectant mother recovering from a recent surgery. I was worried, envisioning her giving birth at 22 weeks pregnant to a tiny child who would have close to zero chance of survival. I was praying that we didn't have to experience that trauma. After a few hours of monitoring her, running some tests and lots of IV fluids, they determined that she was severely dehydrated. Apparently it's common for dehydration to trigger a pregnant woman into labor...now you know. They felt it best to keep her overnight to monitor her. Once again she was back in her favorite place for the night. Ironically we were just right down the hall from her room at the rehab center. She did okay and was released the following evening. Similar to our last 2 stints at the U, she couldn't wait to get out of there.
Sarah has a condition called Placenta Previa. For the few guys that might be reading this, it's basically when the baby sack is sitting down lower than normal and is covering the hole where the baby needs to come out of. They say that it has the potential to be problematic as we get closer to the time of delivery but that it may resolve itself as the placenta grows. Nothing can be done about it for now. It does cause some bleeding which has been worrisome to her but each ultrasound reassures us that so far things are okay.
We've gotten back to some form of normalcy and stability as I've returned to work and the kids are back in school. It's different. I've always been able to leave for work early and know that the kids would be fed, dressed, safely taken to and from school and entertained and cared for throughout the day by Sarah. She has always been Super Mom. Lately I've been getting them ready and off to school and then friends and family have been showing up to cover until I get home. It has definitely been an adjustment for us to have others step in and do so much. I think one of the hardest aspects of the last 3 months for me has been swallowing my pride and letting others into our life to help. It is humbling to accept that we need help. So many have been so gracious with their time and I continue to be overwhelmed with the kindness of our loved ones and strangers alike. Many in our neighborhood have come forward and helped out in so many ways. I am grateful and I feel lucky to be surrounded by such good people.
As I've kind of taken on the alter ego of Mr. Mom during the last few months I've changed and grown a lot, some for the better I hope. It's not a glamorous role and has been extremely challenging but rewarding. Fortunately I haven't resorted to beating the living crap out of the kids yet but I have definitely had more than a few of those moments when you just need to step outside and take a deep breath and remember that someday they will grow up and be gone and then I'll miss them. Actually it's usually not that warm and fuzzy, more like step outside and punch an inanimate object and silently scream in my head so the neighbors don't hear. But we manage and I do love them. They have definitely been affected by all of this and I've seen some behavioral changes in all of them. Some good and some bad. I hope that as time goes on we can find a good balance and help them to adjust in a healthy way.
It was fun to go to their school and meet their teachers a few weeks ago. I'm embarrassed to say that the last year I had been so busy with work that I couldn't tell you their teachers names if you asked, let alone much about what they were learning and doing there. Just another reminder that there are more important things in life than my job. Sometimes I need a wake up call. As we were preparing for the school year to start I realized that they needed some decent shoes. I was dreading a trip to the shoe store. In my mind, Sarah would make a list of their sizes and I would go alone and just pick some...no. Fortunately Sarah and my mom did it one day while I was at work. I'm still suffering form PTSD from the last time I went shoe shopping with the whole family. Over the years I have developed an aversion to being publicly humiliated by my kids and I try to avoid it at all costs.
We were all at the shoe store, close to closing time of course because it took us so long to get ready and out of the house. I must have set my keys down so I could force a kids foot into a shoe and say "see, it fits, now let's get the hell outta here". We got up to leave and I couldn't find my keys. I don't know if you've ever been in a Famous Footwear but it's basically a humongous room with about 978 million boxes in it. After scanning the aisles and patting down the kids twice I realized the demoralizing truth that my keys had to be in a shoe box. Anyway, after a few hours of opening lids and shaking boxes and the store clerk staying after closing time to supervise, I heard the magical sound of keys as I shook a box of princess slippers. It was like Charlie finding the golden ticket in that one in a million Wonka Bar. Seriously.
So anyway. I gotta go to bed. Thanks to all for your support. If you want to visit just let me know or call her. Sarah seems to enjoy having visitors and someone to talk to. I'll try to keep a better update in the future.
Thursday, September 6, 2012
Friday, July 27, 2012
Once again I let the blog slide for a few weeks and I apologize for not keeping it up to date. I always have high hopes but then reality sets in and by the time the day is done it's just so much easier to plop my butt on the couch and decompress to The History Channel.
I honestly don't think I can clearly recall all the events of the past 2 weeks so there may be a little bit of fiction mingled with reality. I'll do my best to relay the truth in a thorough and entertaining manner.
When I left off we had just learned of our new baby girl and of the decision to keep Sarah in the rehab center for a while longer. The next few days following that were up and down. Sarah seemed to have pretty much accepted the fact that we needed to keep her there for a bit. The doctors informed her that it was not entirely my decision to do so but that they were morally obligated to help her reach a certain point in her recovery before they could allow her to return home. This shifted some of her frustration and animosity from me to them for the rest of her stay there which I was very grateful for. I felt like I was taking the brunt of that and in turn I had become more stern and guarded than I was loving and caring.
That Friday, 2 weeks ago tomorrow, we had a family meeting with all of her therapists, doctors and social worker. It was nice to have them all together and hear their input and opinions of Sarah's progress. We came to a consensus, for the most part, that while the overall feeling was that she needed more time in inpatient therapy, she also was not reaping the full benefits of being there because she wanted to be at home so badly with me and the kids. Some of us, mainly me, felt like she was dedicating so much energy and emotion to wanting to come home that she wasn't able to focus solely on the tasks of rehabilitation. We eventually agreed that she would be discharged the following Saturday, 8 days later. While I have received much advice and input from many, I have ultimately just gone with my gut and instinct through these tough decisions and tried to do what I thought was best for my family, be it right or wrong.
She was not extremely happy with the news of the new extension but it did give her a firm date to look forward to which I believe helped her to be a little more positive and calm. The agreed upon release date of the 21st had a lot to do with my availability to care for her and the kids. I had approximately a week of work left on a big job I had been on for months and her aunt would also be returning home so I really didn't see any way we could make it work had she come home any sooner.
The next week just seemed to drag on for her. I've never spent any time admitted in the hospital so I really can't relate to what she was feeling but I know she was sick of the place, the bed, the food, not being with her family and so on. I tried to remind her of how challenging life at home with 4 boys can be. The constant fighting and messes, waking up in the morning with a couple of stowaways hogging your pillow and a 2 year old kicking you in the face, cooking and cleaning and trying to keep them from burning anything down or being rushed the the emergency room. But for her those things are comfort, they are real, they are what makes a mom. She was missing her normal life so much. Her setup there seemed kind of appealing to me, having a bed to yourself, meals brought to you 3 times a day and then cleaned up, nurses bathing you...but realistically I know it was very lonely for her.
I worked long days and through the weekend to try to get done while Diana and others continued to care for the kids. On Wednesday morning I dropped Diana off at the airport to go home and my aunt Norma stayed with the boys for the day. She's a gem. That night was a big reality check for me when I got home and she left and it was just me and the boys having to fend for ourselves. Without the presence of a mother figure, a house full of boys and a burned out dad can quickly turn disastrous. Everyone knows I'm a pushover, especially my kids. By the time we fell asleep at midnight on the couch with slurpees dripping off of everything the house looked like a hurricane had come through it. But it was nice to be with them. I love my boys like crazy and in the time Sarah has been away, despite the stress and emotions and distance between us, I have grown closer to them.
Thursday and Friday our good friends took the boys for the day. Wednesday night I was scrolling through my contact list trying to decide who I should ask to take the kids for the day and I got a text from them offering to do it. I know what an undertaking it is and although so many have offered to help out, I still feel bad asking so much of people. I was relieved that I didn't have to make that call and am very grateful to them for their kindness. Some of the boys uncles and my aunts and uncles have taken them over the past few weeks also which has been a huge help and fun for the boys to get to know them better.
In the meantime Sarah was counting down the days. She continued with her therapy sessions and I was seeing good improvements in her walking and speech. We still had a few hard days and nights with her wanting to leave but there was a light at the end of the tunnel. On Friday Sarah called and asked if I could bring her home then instead of Saturday. We cleared it with the doctors. After 3 long months I finished the last bit of work on my job, packed up my stuff and drove directly to the hospital to find Sarah sitting on the side of her bed just waiting to hop in that wheelchair and head for the door with me. It seemed like perfect timing and everything came together just right. We packed up her stuff and got her ready, then waited for an hour or so for the discharge papers. I would comfortably say that this was the longest hour of her life...she was so anxious to get out of there that I had to keep my foot in front of the wheel on her chair, literally.
I could see the anxiety just evaporating out of her as we drove away, though for me it was not gone. I was and am aware of the task ahead of us. The past month had been extremely stressful and trying but so much of the burden was being carried by others. I knew that my kids and Sarah were in good hands every day and despite all I was going through I really didn't ever have to worry about their day to day physical needs or safety. I was able to continue working. I had planned and scheduled to take 2-3 weeks off from work to focus on helping Sarah adapt and recover and to care for the kids. Most who know me probably know that I am a workaholic. I love my job. Over the years I have become obsessed with it and admittedly have struggled to find a healthy balance between work and family. I can't remember a time when I ever took a week off of work let alone two or three. The challenge ahead seemed daunting to me but I was excited about it. While I had been looking forward to some time at home I also was nervous about how I would manage being a full time stay at home dad/caretaker to my wife.
We arrived home last Friday afternoon, greeted by banners and balloons and flowers that Jenny and the kids had gotten. The boys still thought she was coming home Saturday so they were surprised when they came running up to my truck. 3 of them aren't tall enough to see into the windows so I told them I had a surprise for them and opened the door. They were thrilled to see their mom. Lots of big hugs and kisses and some confused looks.
We managed to get her into the house without issue. I hadn't planned on bringing her home until Saturday so the house was trashed but she didn't mind. She was so relieved and happy to be home that none of that even mattered. I could see that she was emotionally and physically exhausted and just wanted to lay down and decompress. I think we both kind of took a deep breath and let out a huge sigh of relief that we had made it through that stage of the experience.
Being home all together felt really good but at the same time was kind of awkward, almost like when you first move in with your partner and are doing your best to read what their needs and expectations are and hopefully meet them. I had walked through it all in my head a hundred times but when it came down to it I realized that I just had no idea what to expect. We had been living and dealing with life in two very different ways for the last month and all of a sudden we had to mesh them back together. While the kids had missed her and were happy to have her home, their needs and behaviors hadn't changed all that much. They still needed to be cared for and entertained and guided and now I also needed to care for Sarah and keep her safe. I will say that the last week has definitely been a reality and an ego check for me. I am realizing that for years Sarah has been dealing with so much more than I think I have given her sufficient credit for.
Being at home with the kids all day long is hard work. Sure I've experienced it plenty but have always had her beside me to share the load, save a few evenings here and there on the rare occasion that she goes out with friends or shopping or something. She is still unable to walk on her own and struggles to get up and down and out of bed without my help so she has been unable to do much as far as caring for the boys. I feel I'm writing this as if it's been years even though she's only been home 6 days.
As I bounce back and forth between making breakfast, then second breakfast, helping Sarah to the bathroom, stopping Eli and Wes from beating each other with household items, cleaning up spilled milk or juice for the umpteenth time, unclogging the toilet, pulling out slivers, changing diapers, cleaning up poo after poo after poo, and sweeping the floor as debris seems to be falling from the sky right behind me I can hear a collective grinning chant from all of the stay at home mom's in the world saying "Welcome to my world." I could go on and on. Seriously, I know I'm going to regret documenting this bitter realization when someday maybe months or years down the road I come home to a sink full of dishes, shoes sticking to the floor as I step up to the toilet, kids jumping naked on the tramp holding machetes, faces covered with chocolate and dirt and and arrogantly say to my wife, "so what did you do today?" Kind of an eye opener of a week I guess.
Stay at home mom's (and dad's) I salute you.
So anyway, back to Sarah. In the week that she's been home I have noticed a huge change in her speech. She is talking so much better than she was even a week ago and leaps and bounds ahead of what she was like right after the surgery. My theory is that, aside from her brain naturally healing, it is also directly related to her attitude, which has gotten much more positive since returning home. She has continued to struggle with her balance which basically affects everything in your life believe it or not. Without the twice daily routine physical therapy I feel like her walking has declined a bit since she left rehab. She will start having in home visits from therapists in the next day or two so I hope that will change. We walk a little but my main focus this last week has been keeping her safe so I have pretty much just been helping her to the bathroom and shower and then getting her situated in a comfortable spot either in bed or on the couch so she can relax.
On Tuesday morning we had a big wake up call. Until then I had just been holding her arm as she used the grab bars to walk into the bathroom from bed. This had been working pretty well. In retrospect I should have had her in the wheelchair even though it's only about an 8 foot walk. At 7 am she woke me up to say she needed help to the bathroom. In my defense I'm a deep sleeper and could probably sleep through my house burning down but that's irrelevant. I jumped out of bed, groggy, stumbled over to her and proceeded to help her walk to the toilet. She is very wobbly when she walks and really needs to be holding onto something with each hand as well as have her body supported from tipping. She reached for a grab bar and mis judged the distance and immediately fell hard. I tried to grab her torso but it happened too fast and unexpectedly and she dropped, head first right onto the shower curb. It made a loud, spine tingling, gut wrenching crack and started to bleed. I thought for sure she had cracked her head open and I imagined the worst. I'm sure it hurt very badly and I was paranoid that she had damaged not only her skull but her brain where the surgery had been done. She later said that when she hit she saw sparks but didn't black out.
I called my uncle Randy who very graciously volunteered to watch the boys while we went to the emergency room. We went back up to the U of U because they have all of her records at hand as well as previous CT scans and MRI's. Sarah wasn't the least bit excited to be back there so quickly after her month long stint but we knew we had to. After 6 hours and another brain scan they determined that to the best of their knowledge they couldn't see any new damage to the skull or brain. She left there with a small gash above her eye and an aching head. Today she has a huge black and blue eye, a visual reminder to me to be much more cautious. I feel like I let her down but am so glad that it didn't turn out worse. I have since repositioned and added a few more grab bars and have recommitted to transporting her in her wheelchair for the time being.
Despite the major adjustments and steep learning curve for me, I have really enjoyed this last week with my family. I can tell the boys are enjoying having me and Sarah around. I'm not near as structured and entertaining as some of their sitters over the past month but they like just doing simple things and hanging out. The younger ones get so excited to go somewhere with me, even just going to home depot or the gas station is a big adventure. I swear every time we pull up at our destination or even when I just hit the brakes they immediately are un buckled and poking their heads over my shoulder like little meerkats. It has been good to reconnect with them and also with Sarah. I feels nice to be back in our comfortable chaos.
This experience is far from over but I feel like I have learned and grown immensely from it. I'm sure that Sarah feels the same. It has really put me in check and forced me to take a step back and look at what is really important, my family.
The progress is slow and inconsistent sometimes but we hope that it just keeps coming. For now it's just a day at a time.
Thanks for reading.
I honestly don't think I can clearly recall all the events of the past 2 weeks so there may be a little bit of fiction mingled with reality. I'll do my best to relay the truth in a thorough and entertaining manner.
When I left off we had just learned of our new baby girl and of the decision to keep Sarah in the rehab center for a while longer. The next few days following that were up and down. Sarah seemed to have pretty much accepted the fact that we needed to keep her there for a bit. The doctors informed her that it was not entirely my decision to do so but that they were morally obligated to help her reach a certain point in her recovery before they could allow her to return home. This shifted some of her frustration and animosity from me to them for the rest of her stay there which I was very grateful for. I felt like I was taking the brunt of that and in turn I had become more stern and guarded than I was loving and caring.
That Friday, 2 weeks ago tomorrow, we had a family meeting with all of her therapists, doctors and social worker. It was nice to have them all together and hear their input and opinions of Sarah's progress. We came to a consensus, for the most part, that while the overall feeling was that she needed more time in inpatient therapy, she also was not reaping the full benefits of being there because she wanted to be at home so badly with me and the kids. Some of us, mainly me, felt like she was dedicating so much energy and emotion to wanting to come home that she wasn't able to focus solely on the tasks of rehabilitation. We eventually agreed that she would be discharged the following Saturday, 8 days later. While I have received much advice and input from many, I have ultimately just gone with my gut and instinct through these tough decisions and tried to do what I thought was best for my family, be it right or wrong.
She was not extremely happy with the news of the new extension but it did give her a firm date to look forward to which I believe helped her to be a little more positive and calm. The agreed upon release date of the 21st had a lot to do with my availability to care for her and the kids. I had approximately a week of work left on a big job I had been on for months and her aunt would also be returning home so I really didn't see any way we could make it work had she come home any sooner.
The next week just seemed to drag on for her. I've never spent any time admitted in the hospital so I really can't relate to what she was feeling but I know she was sick of the place, the bed, the food, not being with her family and so on. I tried to remind her of how challenging life at home with 4 boys can be. The constant fighting and messes, waking up in the morning with a couple of stowaways hogging your pillow and a 2 year old kicking you in the face, cooking and cleaning and trying to keep them from burning anything down or being rushed the the emergency room. But for her those things are comfort, they are real, they are what makes a mom. She was missing her normal life so much. Her setup there seemed kind of appealing to me, having a bed to yourself, meals brought to you 3 times a day and then cleaned up, nurses bathing you...but realistically I know it was very lonely for her.
I worked long days and through the weekend to try to get done while Diana and others continued to care for the kids. On Wednesday morning I dropped Diana off at the airport to go home and my aunt Norma stayed with the boys for the day. She's a gem. That night was a big reality check for me when I got home and she left and it was just me and the boys having to fend for ourselves. Without the presence of a mother figure, a house full of boys and a burned out dad can quickly turn disastrous. Everyone knows I'm a pushover, especially my kids. By the time we fell asleep at midnight on the couch with slurpees dripping off of everything the house looked like a hurricane had come through it. But it was nice to be with them. I love my boys like crazy and in the time Sarah has been away, despite the stress and emotions and distance between us, I have grown closer to them.
Thursday and Friday our good friends took the boys for the day. Wednesday night I was scrolling through my contact list trying to decide who I should ask to take the kids for the day and I got a text from them offering to do it. I know what an undertaking it is and although so many have offered to help out, I still feel bad asking so much of people. I was relieved that I didn't have to make that call and am very grateful to them for their kindness. Some of the boys uncles and my aunts and uncles have taken them over the past few weeks also which has been a huge help and fun for the boys to get to know them better.
In the meantime Sarah was counting down the days. She continued with her therapy sessions and I was seeing good improvements in her walking and speech. We still had a few hard days and nights with her wanting to leave but there was a light at the end of the tunnel. On Friday Sarah called and asked if I could bring her home then instead of Saturday. We cleared it with the doctors. After 3 long months I finished the last bit of work on my job, packed up my stuff and drove directly to the hospital to find Sarah sitting on the side of her bed just waiting to hop in that wheelchair and head for the door with me. It seemed like perfect timing and everything came together just right. We packed up her stuff and got her ready, then waited for an hour or so for the discharge papers. I would comfortably say that this was the longest hour of her life...she was so anxious to get out of there that I had to keep my foot in front of the wheel on her chair, literally.
I could see the anxiety just evaporating out of her as we drove away, though for me it was not gone. I was and am aware of the task ahead of us. The past month had been extremely stressful and trying but so much of the burden was being carried by others. I knew that my kids and Sarah were in good hands every day and despite all I was going through I really didn't ever have to worry about their day to day physical needs or safety. I was able to continue working. I had planned and scheduled to take 2-3 weeks off from work to focus on helping Sarah adapt and recover and to care for the kids. Most who know me probably know that I am a workaholic. I love my job. Over the years I have become obsessed with it and admittedly have struggled to find a healthy balance between work and family. I can't remember a time when I ever took a week off of work let alone two or three. The challenge ahead seemed daunting to me but I was excited about it. While I had been looking forward to some time at home I also was nervous about how I would manage being a full time stay at home dad/caretaker to my wife.
We arrived home last Friday afternoon, greeted by banners and balloons and flowers that Jenny and the kids had gotten. The boys still thought she was coming home Saturday so they were surprised when they came running up to my truck. 3 of them aren't tall enough to see into the windows so I told them I had a surprise for them and opened the door. They were thrilled to see their mom. Lots of big hugs and kisses and some confused looks.
We managed to get her into the house without issue. I hadn't planned on bringing her home until Saturday so the house was trashed but she didn't mind. She was so relieved and happy to be home that none of that even mattered. I could see that she was emotionally and physically exhausted and just wanted to lay down and decompress. I think we both kind of took a deep breath and let out a huge sigh of relief that we had made it through that stage of the experience.
Being home all together felt really good but at the same time was kind of awkward, almost like when you first move in with your partner and are doing your best to read what their needs and expectations are and hopefully meet them. I had walked through it all in my head a hundred times but when it came down to it I realized that I just had no idea what to expect. We had been living and dealing with life in two very different ways for the last month and all of a sudden we had to mesh them back together. While the kids had missed her and were happy to have her home, their needs and behaviors hadn't changed all that much. They still needed to be cared for and entertained and guided and now I also needed to care for Sarah and keep her safe. I will say that the last week has definitely been a reality and an ego check for me. I am realizing that for years Sarah has been dealing with so much more than I think I have given her sufficient credit for.
Being at home with the kids all day long is hard work. Sure I've experienced it plenty but have always had her beside me to share the load, save a few evenings here and there on the rare occasion that she goes out with friends or shopping or something. She is still unable to walk on her own and struggles to get up and down and out of bed without my help so she has been unable to do much as far as caring for the boys. I feel I'm writing this as if it's been years even though she's only been home 6 days.
As I bounce back and forth between making breakfast, then second breakfast, helping Sarah to the bathroom, stopping Eli and Wes from beating each other with household items, cleaning up spilled milk or juice for the umpteenth time, unclogging the toilet, pulling out slivers, changing diapers, cleaning up poo after poo after poo, and sweeping the floor as debris seems to be falling from the sky right behind me I can hear a collective grinning chant from all of the stay at home mom's in the world saying "Welcome to my world." I could go on and on. Seriously, I know I'm going to regret documenting this bitter realization when someday maybe months or years down the road I come home to a sink full of dishes, shoes sticking to the floor as I step up to the toilet, kids jumping naked on the tramp holding machetes, faces covered with chocolate and dirt and and arrogantly say to my wife, "so what did you do today?" Kind of an eye opener of a week I guess.
Stay at home mom's (and dad's) I salute you.
So anyway, back to Sarah. In the week that she's been home I have noticed a huge change in her speech. She is talking so much better than she was even a week ago and leaps and bounds ahead of what she was like right after the surgery. My theory is that, aside from her brain naturally healing, it is also directly related to her attitude, which has gotten much more positive since returning home. She has continued to struggle with her balance which basically affects everything in your life believe it or not. Without the twice daily routine physical therapy I feel like her walking has declined a bit since she left rehab. She will start having in home visits from therapists in the next day or two so I hope that will change. We walk a little but my main focus this last week has been keeping her safe so I have pretty much just been helping her to the bathroom and shower and then getting her situated in a comfortable spot either in bed or on the couch so she can relax.
On Tuesday morning we had a big wake up call. Until then I had just been holding her arm as she used the grab bars to walk into the bathroom from bed. This had been working pretty well. In retrospect I should have had her in the wheelchair even though it's only about an 8 foot walk. At 7 am she woke me up to say she needed help to the bathroom. In my defense I'm a deep sleeper and could probably sleep through my house burning down but that's irrelevant. I jumped out of bed, groggy, stumbled over to her and proceeded to help her walk to the toilet. She is very wobbly when she walks and really needs to be holding onto something with each hand as well as have her body supported from tipping. She reached for a grab bar and mis judged the distance and immediately fell hard. I tried to grab her torso but it happened too fast and unexpectedly and she dropped, head first right onto the shower curb. It made a loud, spine tingling, gut wrenching crack and started to bleed. I thought for sure she had cracked her head open and I imagined the worst. I'm sure it hurt very badly and I was paranoid that she had damaged not only her skull but her brain where the surgery had been done. She later said that when she hit she saw sparks but didn't black out.
I called my uncle Randy who very graciously volunteered to watch the boys while we went to the emergency room. We went back up to the U of U because they have all of her records at hand as well as previous CT scans and MRI's. Sarah wasn't the least bit excited to be back there so quickly after her month long stint but we knew we had to. After 6 hours and another brain scan they determined that to the best of their knowledge they couldn't see any new damage to the skull or brain. She left there with a small gash above her eye and an aching head. Today she has a huge black and blue eye, a visual reminder to me to be much more cautious. I feel like I let her down but am so glad that it didn't turn out worse. I have since repositioned and added a few more grab bars and have recommitted to transporting her in her wheelchair for the time being.
Despite the major adjustments and steep learning curve for me, I have really enjoyed this last week with my family. I can tell the boys are enjoying having me and Sarah around. I'm not near as structured and entertaining as some of their sitters over the past month but they like just doing simple things and hanging out. The younger ones get so excited to go somewhere with me, even just going to home depot or the gas station is a big adventure. I swear every time we pull up at our destination or even when I just hit the brakes they immediately are un buckled and poking their heads over my shoulder like little meerkats. It has been good to reconnect with them and also with Sarah. I feels nice to be back in our comfortable chaos.
This experience is far from over but I feel like I have learned and grown immensely from it. I'm sure that Sarah feels the same. It has really put me in check and forced me to take a step back and look at what is really important, my family.
The progress is slow and inconsistent sometimes but we hope that it just keeps coming. For now it's just a day at a time.
Thanks for reading.
Thursday, July 12, 2012
In the few short days since I last wrote we have had some ups and downs with Sarah. Yesterday and today were pretty much a mirror image of the struggle we had last week with her wanting to come home. Last night was hard. After an assessment by her doctors, therapists and social workers they determined that Sarah is still nowhere near ready to come home. They are hoping now that she may be by the end of the month but it's impossible to put a definite timeline on how fast her brain can heal enough for her to be safe away from the 24 hour care and surveillance of the hospital staff.
As you can imagine, she was not happy when I delivered this news to her.
Her aunt spent the day with her at the hospital, trying to help her through these challenging emotions and frustrations and also hoping to give her a little reality check which we felt she needed. The reality that if she is unwilling to work for her own recovery then nobody else can help her. Sarah is being pretty stubborn about her recovery right now and while this is extremely frustrating to all of us on the outside, her feelings are valid. While we all want so badly for her to act a certain way, or to have a good attitude and work hard and get better, we really have no idea of the inner turmoil she is facing. That's easy for me to say, but honestly I was just kind of pissed off about it today. I guess what I'm realizing is that I have no control over how she will heal, only over how I react to it.
During the day her aunt must have gotten to her a little because she had somewhat of a change of heart. She calmed down and accepted, at least for today, that she would quit fighting against it. I'm not expecting the change to stick, I know she will continue to struggle with this, I'm just trying to take the good and the bad in stride. I visited her tonight for a few hours. I admit, I went with my guard up and expecting a fight but the visit was calm and comforting to me and I enjoyed being with her. I even saw her laugh and smile a little for the first time in a while. She wanted some cereal, we stocked her closet there with a few boxes. She sat up on the bed to eat it and did her best but still ended up spilling a bunch of it down her face and on the floor and then she just laughed, and I started laughing. I think we were both thinking the same thing, that if we saw someone else eating like that we would probably have made fun of them to each other after the fact. One of the things I love the most about Sarah is that I can totally cross the line of tasteful humor and I know she will still find it funny.
On the drive home I called my mom. She had spent the day with my boys and I wanted to get a report on how everything went. I love hearing about what they are up to when I'm gone all day. I'm always amused by their antics. I am so grateful to her right now. She is an amazing woman and I couldn't do this with out her love and help and council. I feel lucky to have such a good mom who loves me unconditionally. I am also grateful for my dad, he is a rock in my life and always has been there to support me and catch me when I fall. I've been looking to him a lot lately for advice and to keep my judgement in check when I'm doubting it.
I also feel forever indebted to Sarah's aunt Diana. She has sacrificed her time and put her life on hold to come and take care of my boys and my household while I'm working and Sarah is in the hospital. She has a lot of energy and patience and does great with the boys. It has been nice having her around for moral support too as she knows Sarah very well and has really helped me to deal with this.
So many are helping us right now that if I tried to list them I'm sure I would leave some out so for now I hope it will suffice to just say Thank you to all of you.
My mom and I got talking about this whole experience. She mentioned something about what an unexpected tragedy it really is. While I can definitely understand where she is coming from, I haven't really looked at it like that. I haven't had time I guess. I don't write this blog hoping for sympathy but more because it's therapeutic to me and because I think Sarah wants her experience shared and is unable to do it herself for the time being. And while it is a very hard time in our life I don't look at it as a tragedy or a curse. Sure I would love for things to be the way they used to be but they aren't and they probably won't be for a long time if ever. That's okay. I am not really concerned with planning our future right now or dwelling on the past. It's kind of a blank slate for the time being and as cliche as it sounds I'm really just taking it a day at a time.
So on Monday I was waiting around for people at work and there wasn't much for me to do so I went up to the hospital to surprise Sarah with a visit. Just as I walked in, the nurse was wheeling her down the hall to get an ultrasound. Sarah has been really concerned about the health of the baby since the surgery and had some reason to believe that she had lost or was losing it. We were happy to see the little baby moving around in there, beating heart and all 4 limbs. I kept looking for that tell tale sign that I've seen in ultra sounds with my other 4 kids, the part that is often confused with the umbilical cord, but it wasn't there. I'm not bragging or anything, but it's usually pretty obvious if you know what I mean. It must just be shy I figured. But lo and behold, the nurse showed us that we have a little baby girl growing in there! Sarah was thrilled, just so happy to see that baby was alive and the fact that it was a girl was the icing on the cake. This gave her a moral boost though it was short lived. I'm excited for the possibility of finally having a daughter and was relieved to see that she was safe. I accepted a while ago that we might lose this baby with all that has happened and I still believe this to be a very real possibility and I am at peace with that. I don't think that Sarah shares that sentiment entirely though. She continues to worry about it and again tonight had a scare but was reassured when the resident OB stopped by to check the baby's heart rate which was still good.
A few days after we found out about Sarah's tumor I was at work thinking about it, and her being pregnant and my tile layout and all kinds of other stuff and I had a strong feeling about this baby. I know about the birds and the bees and science and all that, and I am not naive to the fact that I somewhat irresponsibly knocked her up without planning it and I'll own that. But my connection to my kids is very deep as is everyones I imagine. I have had a strong spiritual bond to all my babies even before they were born and this one is no different. I felt that this baby came into our life to bring us to the awareness of Sarah's condition. It was one of those moments when everything around you kind of just stops and your senses heighten and you just feel it in your soul that it is real. So for me, at that moment, I accepted that in the end the baby might not stay with us but that it will always be a part of us regardless of the outcome of everything. Sarah and I have talked about this a lot and I think she feels the same though I know that losing it would be extremely hard for her. Of course I hope that she will make it through this with Sarah and I'm already picturing us having a little girl in our family but I know that we will be okay no matter what the outcome is.
So anyway...I gotta go to bed. Lots of tile to be laid mañana.
Please keep Sarah in your thoughts and prayers. She needs our love and support more than ever. She will make it through this in time. I am very proud of her.
As you can imagine, she was not happy when I delivered this news to her.
Her aunt spent the day with her at the hospital, trying to help her through these challenging emotions and frustrations and also hoping to give her a little reality check which we felt she needed. The reality that if she is unwilling to work for her own recovery then nobody else can help her. Sarah is being pretty stubborn about her recovery right now and while this is extremely frustrating to all of us on the outside, her feelings are valid. While we all want so badly for her to act a certain way, or to have a good attitude and work hard and get better, we really have no idea of the inner turmoil she is facing. That's easy for me to say, but honestly I was just kind of pissed off about it today. I guess what I'm realizing is that I have no control over how she will heal, only over how I react to it.
During the day her aunt must have gotten to her a little because she had somewhat of a change of heart. She calmed down and accepted, at least for today, that she would quit fighting against it. I'm not expecting the change to stick, I know she will continue to struggle with this, I'm just trying to take the good and the bad in stride. I visited her tonight for a few hours. I admit, I went with my guard up and expecting a fight but the visit was calm and comforting to me and I enjoyed being with her. I even saw her laugh and smile a little for the first time in a while. She wanted some cereal, we stocked her closet there with a few boxes. She sat up on the bed to eat it and did her best but still ended up spilling a bunch of it down her face and on the floor and then she just laughed, and I started laughing. I think we were both thinking the same thing, that if we saw someone else eating like that we would probably have made fun of them to each other after the fact. One of the things I love the most about Sarah is that I can totally cross the line of tasteful humor and I know she will still find it funny.
On the drive home I called my mom. She had spent the day with my boys and I wanted to get a report on how everything went. I love hearing about what they are up to when I'm gone all day. I'm always amused by their antics. I am so grateful to her right now. She is an amazing woman and I couldn't do this with out her love and help and council. I feel lucky to have such a good mom who loves me unconditionally. I am also grateful for my dad, he is a rock in my life and always has been there to support me and catch me when I fall. I've been looking to him a lot lately for advice and to keep my judgement in check when I'm doubting it.
I also feel forever indebted to Sarah's aunt Diana. She has sacrificed her time and put her life on hold to come and take care of my boys and my household while I'm working and Sarah is in the hospital. She has a lot of energy and patience and does great with the boys. It has been nice having her around for moral support too as she knows Sarah very well and has really helped me to deal with this.
So many are helping us right now that if I tried to list them I'm sure I would leave some out so for now I hope it will suffice to just say Thank you to all of you.
My mom and I got talking about this whole experience. She mentioned something about what an unexpected tragedy it really is. While I can definitely understand where she is coming from, I haven't really looked at it like that. I haven't had time I guess. I don't write this blog hoping for sympathy but more because it's therapeutic to me and because I think Sarah wants her experience shared and is unable to do it herself for the time being. And while it is a very hard time in our life I don't look at it as a tragedy or a curse. Sure I would love for things to be the way they used to be but they aren't and they probably won't be for a long time if ever. That's okay. I am not really concerned with planning our future right now or dwelling on the past. It's kind of a blank slate for the time being and as cliche as it sounds I'm really just taking it a day at a time.
So on Monday I was waiting around for people at work and there wasn't much for me to do so I went up to the hospital to surprise Sarah with a visit. Just as I walked in, the nurse was wheeling her down the hall to get an ultrasound. Sarah has been really concerned about the health of the baby since the surgery and had some reason to believe that she had lost or was losing it. We were happy to see the little baby moving around in there, beating heart and all 4 limbs. I kept looking for that tell tale sign that I've seen in ultra sounds with my other 4 kids, the part that is often confused with the umbilical cord, but it wasn't there. I'm not bragging or anything, but it's usually pretty obvious if you know what I mean. It must just be shy I figured. But lo and behold, the nurse showed us that we have a little baby girl growing in there! Sarah was thrilled, just so happy to see that baby was alive and the fact that it was a girl was the icing on the cake. This gave her a moral boost though it was short lived. I'm excited for the possibility of finally having a daughter and was relieved to see that she was safe. I accepted a while ago that we might lose this baby with all that has happened and I still believe this to be a very real possibility and I am at peace with that. I don't think that Sarah shares that sentiment entirely though. She continues to worry about it and again tonight had a scare but was reassured when the resident OB stopped by to check the baby's heart rate which was still good.
A few days after we found out about Sarah's tumor I was at work thinking about it, and her being pregnant and my tile layout and all kinds of other stuff and I had a strong feeling about this baby. I know about the birds and the bees and science and all that, and I am not naive to the fact that I somewhat irresponsibly knocked her up without planning it and I'll own that. But my connection to my kids is very deep as is everyones I imagine. I have had a strong spiritual bond to all my babies even before they were born and this one is no different. I felt that this baby came into our life to bring us to the awareness of Sarah's condition. It was one of those moments when everything around you kind of just stops and your senses heighten and you just feel it in your soul that it is real. So for me, at that moment, I accepted that in the end the baby might not stay with us but that it will always be a part of us regardless of the outcome of everything. Sarah and I have talked about this a lot and I think she feels the same though I know that losing it would be extremely hard for her. Of course I hope that she will make it through this with Sarah and I'm already picturing us having a little girl in our family but I know that we will be okay no matter what the outcome is.
So anyway...I gotta go to bed. Lots of tile to be laid mañana.
Please keep Sarah in your thoughts and prayers. She needs our love and support more than ever. She will make it through this in time. I am very proud of her.
Monday, July 9, 2012
Tomorrow will be 2 weeks since Sarah's surgery. I think it's safe to say that when we started this journey a little over a month ago we had no idea what we would be in for.
I apologize for not being more dedicated to keeping the blog up to date. The 10 days since the last post have been an emotional whirlwind for us all. So many times I almost started writing but just wasn't feeling inspired. Tonight it kind of felt like that feeling you have when a paper is due at school tomorrow and you've been putting it off for a week. I know it's not like the fate of the world hinges on my blog or anything... but I do feel a need to share what we are experiencing. My hope is that it will comfort our loved ones by keeping them informed, and maybe even help somebody in some way or another who may be facing or someday face a similar obstacle or experience in their life.
I'll start with the nitty gritty, the reason all of you are reading, to know how Sarah is doing. I fear that a lot of this post might end up being about me. This blog is, after all, based entirely on my experience in dealing with Sarah and this challenge. I do my best to portray her feelings but really only she can do that. I do suffer from a little bit of egomania though so I hope you'll flatter me by reading to the end.
For the last 10 days Sarah has been living in the U of U inpatient medical rehabilitation facility. When she was transferred there a week ago Friday her mental and physical state was pretty grim in my eyes, though very normal and actually better than expected if you were to ask our neurosurgeon. She couldn't stand or walk without 2 people supporting her completely, her speech was barely discernible and she was suffering from a great deal of post operation psychosis and anxiety. I am happy to say that all of these symptoms have greatly improved since then. Sarah has been on a busy schedule with occupational, physical and speech therapists. Each morning after breakfast an occupational therapist named Annie comes to Sarah's room. She is sweet and very genuine and seems to get along really well with Sarah.
They work on a lot of simple daily life skills that were once so routine and thoughtless to Sarah, and still are to most of us. They practice, among other things, getting dressed, memory skills and writing. I know that writing has been really frustrating to Sarah. She has always had such beautiful handwriting. I saw this start to decline in the few weeks prior to the surgery. After the operation though we saw a drastic drop in her ability to write anything at all. Her mind knows how to do it but she is literally having to retrain it to be able to make her hands do what they once could. It's hard to watch her frustration as she tries to do simple mazes with crayons or write the kids names. In watching her, you know she knows exactly what to do and how to do it but it's so hard for her to make her hands do it. She has improved a lot in the last week though and with continued practice I know she will get it back.
She does hours of physical therapy every day too. Stacy and a few other therapists have her go on lots of walks. I have been able to be a part of many of these. They wrap a support belt around her torso and one of us will walk on each side of her to support her while she walks. She is extremely strong physically and has a determined attitude, usually insisting on walking further than the last time. I have noticed a great improvement in the last week. She is able to sit up on her own and climb out of bed with just one person supporting her. The other day she was working on a weight machine doing some leg lifts. Stacy asked her to do 3 rounds of 20 which Sarah did without issue, and then did a bunch more. I seriously don't think I could have done that many myself right now. They have had her practicing with a walker the last few days too. I'm assuming this is what she will mainly be using to get around when she comes home.
She does an hour or two of speech therapy each day too though I have unfortunately missed all of those sessions. Any of you who have talked to her lately have probably been surprised at how different she sounds from prior to the surgery. Her speech is very slurry and mumbled though she has some good and bad days with it. I am a horrible listener to start with so communicating with her has been a real challenge for me. She has made some big strides in the last few days though and they seem confident that in time she will regain this as well.
Overall, her condition is improving daily. We were certainly not prepared to deal with the side effects that the surgery would bring. Despite lots of reading along with warning from the surgeon and others, there's really just nothing that can prepare you to deal with this. You just do. I try to remain optimistic that she will make a full recovery though I am realizing that it may not come as quickly as we hope.
They have set a tentative date for her to return home on July 12th, this Thursday. After an assessment they will determine if this is realistic or not. We can't wait to have her back with us but I am a little skeptical that she will be ready by then. I know that Sarah so badly wants to come home, which leads into the next part of the account.....
Last Friday after she was transferred to the rehab unit, I spent the night with her then left for work on Saturday morning. This would be the last time I saw her until the following Monday night. Her sister in law spent the day with her then her aunt went to spend Saturday night and most of Sunday there while I went home to spend some much needed time with the boys. I had been missing them like crazy and I'd like to think the feeling was reciprocated, though they have been doing way more fun stuff with Sarah's aunt and others who have taken them than they typically get to do with me. Boys need their Dad though and Dads need their boys. Period. Our plan was to go and visit her on Sunday night and have a little birthday party for Wesley who turned 5 that day.
The next few days are kind of a blur to me. I mentioned that Sarah was still struggling with her rational thinking and was under a lot of stress. Sometime on Saturday she got in her mind that she needed to come home, now. As we talked throughout the day this is all she could talk to me about. I tried my best to comfort her and explain to her that she needed to be there, and that she had a lot of therapy left to do that we just couldn't give her at home. She persisted.
Going back 6 days, on the morning of the surgery right before they wheeled her away from me we discussed the possibility of her not being with us anymore, and other potential outcomes. She told me that whatever were to happen, that she trusted my judgement to make the right decisions. Now I'll admit, I haven't always had the best track record for good judgement but that's all water under the bridge at this point in our life, so I hope.
She continued to call me constantly throughout the day and night, begging me to bring her home. Nothing I could say was going to change her mind on this matter. She grew increasingly persistent and desperate with every call. She was the same with the nurses and aids caring for her. Her once peaceful demeanor had turned harsh and sad and scared. I hoped that this would pass with the night but unfortunately it didn't. I know she reached out to many of her friends and family with the same frustration. I felt like it was my responsibility to her, for her safety and well being and chance at recovery, to keep her there. I also believed that nothing short of bringing her home could appease her at that time. Every conversation was the same. She was dead set on this and I felt like my hands were tied. She was so mad at me for leaving her there. I know the irrationality and aggressiveness was in large part due to the effects of the steroids that she was still having to be on and the extreme stress she was under. She's a fighter, and I love that about her. She can be persistent and I feel that this is what will get her through this trial. After speaking with some other women, doctors, social workers and a few of her friends, I decided that the best thing I could do was just keep my distance for a while, as my presence and conversations with her seemed to just add fuel to the fire.
Sunday, Monday and Tuesday turned out to be a few of the hardest days of my life. As a man, we want to solve problems. We want to give our partner everything and make them happy. That is our goal in life. I felt like I was doing the right thing, but not a second went by for the next few days that I didn't question that decision. It was a hard pill to swallow, accepting that I could't give her what she wanted and had to to what I thought was best for her instead, despite the emotional strain it put between us.
I made a judgement call to not take the kids to visit her that evening like we had planned. I was afraid for them to see her like this and afraid of what would happen if we went and then had to leave without her. That didn't go over well either, understandably so. I tried to distract the kids and myself with other stuff but I could't take my mind off it. That was a long night.
Most of Monday was the same.
That afternoon she called me, begging to see the kids and assured me that she would be calm. I decided that I would take them. She loves them more than anything and it wasn't fair for me to be keeping them away from her. I arrived an hour before her aunt and the kids. She wasn't doing too well emotionally. Dr Jensen even stopped by and it was obvious to him that the steroids were having some bad side effects on her mind and emotions. Her aunt arrived with the kids. It was a bittersweet reunion. These 7 days had been the longest any of the kids had been away from their mom. Actually, I don't think she'd been away from any of them for more than a night or 2 before this. There were lots of tears and smiles. It was hard for the boys to see their mom like this, in a wheel chair, wearing an eye patch to help with her double vision, struggling to communicate with them. But they smothered her with much needed love. She talked a lot to them. The little ones didn't really understand her and I know Geddy and Eli had a hard time also but Geddy was so sweet. He sat right next to her so attentive and concerned listening to every word she said. He's a good kid. Eli is a tender hearted boy. He said he had to use the bathroom so I took him and when we got in there he just broke down crying. He likes to be tough, I know he didn't want his mom to see him cry for her. We had a good visit but it was strained by the underlying emotions of the past few days which eventually came out and I felt we needed to go before it got out of hand. It was a sad goodbye. We went down one hall, the nurse wheeled her down another. Man, talk about heart wrenching.
The ride home was somber. The boys had lots of questions. The little ones were rambunctious, probably not really knowing how to deal with the emotions. Eli layed his head on my lap the whole way home. He didn't look up at me but I could feel the wetness of his tears soaking through my dirty work pants. I tried my best to keep it together. They all slept in my bed that night.
That evening the calls continued from her, I think she was even more frustrated and angry with me now. I finally stopped answering simply because I felt there was nothing I could do. Maybe I'm a jerk but I really felt helpless.
Tuesday was the same. That afternoon I finished work and started driving home. I wanted more than anything to go and see her but I feared that it would just be a battle. I was hoping that since they had taken her off of the steroid that we would start to see a change in her. I got on the freeway. Everything in me wanted to turn around and drive to the hospital. I've been back and forth on whether or not I should get so sappy on a public blog but oh well, it is what it is and these are the things that are defining me right now as we deal with this. My emotions got to me and I got off the freeway and turned around to head to see her. Then reality and rationality set in and I turned back towards home. I did this 2 more times before heading home for good. I feel like I've dealt with a decent share of challenges in my life but the emotions I had as I drove home that evening have a place near the top of that list. Faced with the reality, at least in my mind, that for her to get better I had to leave her alone, I think I realized then how much I love Sarah.
I don't pray much anymore honestly, but I did. I was feeling pretty helpless.
I came home, mentally exhausted and kind of just sat on the couch feeling numb, kids climbing on me and hitting me with toys. A while later she called so I answered. She sounded different, more calm. She begged me to just listen. Whether it was her returning to a rational state of mind, or me finally being able to understand what she needed or both, I had a profound moment of clarity. I realized, or maybe we both did, that what she really wanted and needed wasn't to be at home, but was to be with us.
It hit me hard, like when you step barefoot on a die cast fighter jet in the dark when you get up to pee at night, that we needed to be with her. She asked if we could come. It felt right. She sounded so excited and happy. Eli was asleep and the little boys were busy so Geddy and I decided to go visit her that night. We stopped and got Frosties from Wendy's and took our favorite movie Nacho Libre to watch with her. Ever since we watched that show years ago Sarah has had a huge crush on Jack Black. There's a guy that looks like him at the cheesesteak shop by our house and she totally flirts with him every time we go in there. For years before that her dream hunk was Vin Diesel but I guess she grew out of that phase. We had a great visit with her and when we left at 1 in the morning she was calm and happy and so were we. Finally I felt like things would be okay. We've made it a goal to see her everyday, either me or the kids or both. I think that they will give her the strength she needs to make it through her stay there and hopefully help her when she returns home. We spend 5 hours there on the 4th of July hanging out, eating and watching movies. It was good. Her attitude seems to have completely changed and I think that mine has too.
Today after visiting her for a while we came home and I did some more work on the house, installing more grab bars in the bathroom and shower and some rails on the stairs. I removed our stair rail years ago when all it was being used for was a zip line by the boys. Fortunately I had Sarah's aunt and my mom here helping with them so I could actually get the projects done. Later in the evening I was working in the bathroom when Geddy and Eli came running in. You might question the veracity of this if you don't have little kids but I swear I could't make this stuff up...they were yelling "Dad, Wesley has super glue all over his tongue." Sure enough, he did. Not just his tongue but his lips, chin and teeth. It was all over everything. I knew exactly what had happened as soon as I saw him. I had brought home my toolbox which was in the back of my truck. I always keep a few tubes in there. He had tried to open one and when all else failed he just bit it. It exploded all over in his mouth. With a lot of scrubbing with a toothbrush, soap and toothpaste from Aunt Diana, and a warm bath soaking his face, it mostly came off. A few teeth are still covered with it but it'll wear off in a few days. That kid, I swear.
Anyway, we have had some ups and downs and I'm sure we will continue to do so. I know Sarah is frustrated with the slow progress of her recovery but she is working hard and has a good attitude, all things considered. The difference in her whole persona, and probably mine, in the last few days is night and day from where it was earlier this week. I can't imagine how it would be to not be able to do the things and feel the way you want to and are used to. She is strong.
I know this was no Twilight or anything but I hope there was enough drama for everyone. I'll try harder to keep this updated so it's not so long next time. Thanks for reading.
I apologize for not being more dedicated to keeping the blog up to date. The 10 days since the last post have been an emotional whirlwind for us all. So many times I almost started writing but just wasn't feeling inspired. Tonight it kind of felt like that feeling you have when a paper is due at school tomorrow and you've been putting it off for a week. I know it's not like the fate of the world hinges on my blog or anything... but I do feel a need to share what we are experiencing. My hope is that it will comfort our loved ones by keeping them informed, and maybe even help somebody in some way or another who may be facing or someday face a similar obstacle or experience in their life.
I'll start with the nitty gritty, the reason all of you are reading, to know how Sarah is doing. I fear that a lot of this post might end up being about me. This blog is, after all, based entirely on my experience in dealing with Sarah and this challenge. I do my best to portray her feelings but really only she can do that. I do suffer from a little bit of egomania though so I hope you'll flatter me by reading to the end.
For the last 10 days Sarah has been living in the U of U inpatient medical rehabilitation facility. When she was transferred there a week ago Friday her mental and physical state was pretty grim in my eyes, though very normal and actually better than expected if you were to ask our neurosurgeon. She couldn't stand or walk without 2 people supporting her completely, her speech was barely discernible and she was suffering from a great deal of post operation psychosis and anxiety. I am happy to say that all of these symptoms have greatly improved since then. Sarah has been on a busy schedule with occupational, physical and speech therapists. Each morning after breakfast an occupational therapist named Annie comes to Sarah's room. She is sweet and very genuine and seems to get along really well with Sarah.
They work on a lot of simple daily life skills that were once so routine and thoughtless to Sarah, and still are to most of us. They practice, among other things, getting dressed, memory skills and writing. I know that writing has been really frustrating to Sarah. She has always had such beautiful handwriting. I saw this start to decline in the few weeks prior to the surgery. After the operation though we saw a drastic drop in her ability to write anything at all. Her mind knows how to do it but she is literally having to retrain it to be able to make her hands do what they once could. It's hard to watch her frustration as she tries to do simple mazes with crayons or write the kids names. In watching her, you know she knows exactly what to do and how to do it but it's so hard for her to make her hands do it. She has improved a lot in the last week though and with continued practice I know she will get it back.
She does hours of physical therapy every day too. Stacy and a few other therapists have her go on lots of walks. I have been able to be a part of many of these. They wrap a support belt around her torso and one of us will walk on each side of her to support her while she walks. She is extremely strong physically and has a determined attitude, usually insisting on walking further than the last time. I have noticed a great improvement in the last week. She is able to sit up on her own and climb out of bed with just one person supporting her. The other day she was working on a weight machine doing some leg lifts. Stacy asked her to do 3 rounds of 20 which Sarah did without issue, and then did a bunch more. I seriously don't think I could have done that many myself right now. They have had her practicing with a walker the last few days too. I'm assuming this is what she will mainly be using to get around when she comes home.
She does an hour or two of speech therapy each day too though I have unfortunately missed all of those sessions. Any of you who have talked to her lately have probably been surprised at how different she sounds from prior to the surgery. Her speech is very slurry and mumbled though she has some good and bad days with it. I am a horrible listener to start with so communicating with her has been a real challenge for me. She has made some big strides in the last few days though and they seem confident that in time she will regain this as well.
Overall, her condition is improving daily. We were certainly not prepared to deal with the side effects that the surgery would bring. Despite lots of reading along with warning from the surgeon and others, there's really just nothing that can prepare you to deal with this. You just do. I try to remain optimistic that she will make a full recovery though I am realizing that it may not come as quickly as we hope.
They have set a tentative date for her to return home on July 12th, this Thursday. After an assessment they will determine if this is realistic or not. We can't wait to have her back with us but I am a little skeptical that she will be ready by then. I know that Sarah so badly wants to come home, which leads into the next part of the account.....
Last Friday after she was transferred to the rehab unit, I spent the night with her then left for work on Saturday morning. This would be the last time I saw her until the following Monday night. Her sister in law spent the day with her then her aunt went to spend Saturday night and most of Sunday there while I went home to spend some much needed time with the boys. I had been missing them like crazy and I'd like to think the feeling was reciprocated, though they have been doing way more fun stuff with Sarah's aunt and others who have taken them than they typically get to do with me. Boys need their Dad though and Dads need their boys. Period. Our plan was to go and visit her on Sunday night and have a little birthday party for Wesley who turned 5 that day.
The next few days are kind of a blur to me. I mentioned that Sarah was still struggling with her rational thinking and was under a lot of stress. Sometime on Saturday she got in her mind that she needed to come home, now. As we talked throughout the day this is all she could talk to me about. I tried my best to comfort her and explain to her that she needed to be there, and that she had a lot of therapy left to do that we just couldn't give her at home. She persisted.
Going back 6 days, on the morning of the surgery right before they wheeled her away from me we discussed the possibility of her not being with us anymore, and other potential outcomes. She told me that whatever were to happen, that she trusted my judgement to make the right decisions. Now I'll admit, I haven't always had the best track record for good judgement but that's all water under the bridge at this point in our life, so I hope.
She continued to call me constantly throughout the day and night, begging me to bring her home. Nothing I could say was going to change her mind on this matter. She grew increasingly persistent and desperate with every call. She was the same with the nurses and aids caring for her. Her once peaceful demeanor had turned harsh and sad and scared. I hoped that this would pass with the night but unfortunately it didn't. I know she reached out to many of her friends and family with the same frustration. I felt like it was my responsibility to her, for her safety and well being and chance at recovery, to keep her there. I also believed that nothing short of bringing her home could appease her at that time. Every conversation was the same. She was dead set on this and I felt like my hands were tied. She was so mad at me for leaving her there. I know the irrationality and aggressiveness was in large part due to the effects of the steroids that she was still having to be on and the extreme stress she was under. She's a fighter, and I love that about her. She can be persistent and I feel that this is what will get her through this trial. After speaking with some other women, doctors, social workers and a few of her friends, I decided that the best thing I could do was just keep my distance for a while, as my presence and conversations with her seemed to just add fuel to the fire.
Sunday, Monday and Tuesday turned out to be a few of the hardest days of my life. As a man, we want to solve problems. We want to give our partner everything and make them happy. That is our goal in life. I felt like I was doing the right thing, but not a second went by for the next few days that I didn't question that decision. It was a hard pill to swallow, accepting that I could't give her what she wanted and had to to what I thought was best for her instead, despite the emotional strain it put between us.
I made a judgement call to not take the kids to visit her that evening like we had planned. I was afraid for them to see her like this and afraid of what would happen if we went and then had to leave without her. That didn't go over well either, understandably so. I tried to distract the kids and myself with other stuff but I could't take my mind off it. That was a long night.
Most of Monday was the same.
That afternoon she called me, begging to see the kids and assured me that she would be calm. I decided that I would take them. She loves them more than anything and it wasn't fair for me to be keeping them away from her. I arrived an hour before her aunt and the kids. She wasn't doing too well emotionally. Dr Jensen even stopped by and it was obvious to him that the steroids were having some bad side effects on her mind and emotions. Her aunt arrived with the kids. It was a bittersweet reunion. These 7 days had been the longest any of the kids had been away from their mom. Actually, I don't think she'd been away from any of them for more than a night or 2 before this. There were lots of tears and smiles. It was hard for the boys to see their mom like this, in a wheel chair, wearing an eye patch to help with her double vision, struggling to communicate with them. But they smothered her with much needed love. She talked a lot to them. The little ones didn't really understand her and I know Geddy and Eli had a hard time also but Geddy was so sweet. He sat right next to her so attentive and concerned listening to every word she said. He's a good kid. Eli is a tender hearted boy. He said he had to use the bathroom so I took him and when we got in there he just broke down crying. He likes to be tough, I know he didn't want his mom to see him cry for her. We had a good visit but it was strained by the underlying emotions of the past few days which eventually came out and I felt we needed to go before it got out of hand. It was a sad goodbye. We went down one hall, the nurse wheeled her down another. Man, talk about heart wrenching.
The ride home was somber. The boys had lots of questions. The little ones were rambunctious, probably not really knowing how to deal with the emotions. Eli layed his head on my lap the whole way home. He didn't look up at me but I could feel the wetness of his tears soaking through my dirty work pants. I tried my best to keep it together. They all slept in my bed that night.
That evening the calls continued from her, I think she was even more frustrated and angry with me now. I finally stopped answering simply because I felt there was nothing I could do. Maybe I'm a jerk but I really felt helpless.
Tuesday was the same. That afternoon I finished work and started driving home. I wanted more than anything to go and see her but I feared that it would just be a battle. I was hoping that since they had taken her off of the steroid that we would start to see a change in her. I got on the freeway. Everything in me wanted to turn around and drive to the hospital. I've been back and forth on whether or not I should get so sappy on a public blog but oh well, it is what it is and these are the things that are defining me right now as we deal with this. My emotions got to me and I got off the freeway and turned around to head to see her. Then reality and rationality set in and I turned back towards home. I did this 2 more times before heading home for good. I feel like I've dealt with a decent share of challenges in my life but the emotions I had as I drove home that evening have a place near the top of that list. Faced with the reality, at least in my mind, that for her to get better I had to leave her alone, I think I realized then how much I love Sarah.
I don't pray much anymore honestly, but I did. I was feeling pretty helpless.
I came home, mentally exhausted and kind of just sat on the couch feeling numb, kids climbing on me and hitting me with toys. A while later she called so I answered. She sounded different, more calm. She begged me to just listen. Whether it was her returning to a rational state of mind, or me finally being able to understand what she needed or both, I had a profound moment of clarity. I realized, or maybe we both did, that what she really wanted and needed wasn't to be at home, but was to be with us.
It hit me hard, like when you step barefoot on a die cast fighter jet in the dark when you get up to pee at night, that we needed to be with her. She asked if we could come. It felt right. She sounded so excited and happy. Eli was asleep and the little boys were busy so Geddy and I decided to go visit her that night. We stopped and got Frosties from Wendy's and took our favorite movie Nacho Libre to watch with her. Ever since we watched that show years ago Sarah has had a huge crush on Jack Black. There's a guy that looks like him at the cheesesteak shop by our house and she totally flirts with him every time we go in there. For years before that her dream hunk was Vin Diesel but I guess she grew out of that phase. We had a great visit with her and when we left at 1 in the morning she was calm and happy and so were we. Finally I felt like things would be okay. We've made it a goal to see her everyday, either me or the kids or both. I think that they will give her the strength she needs to make it through her stay there and hopefully help her when she returns home. We spend 5 hours there on the 4th of July hanging out, eating and watching movies. It was good. Her attitude seems to have completely changed and I think that mine has too.
Today after visiting her for a while we came home and I did some more work on the house, installing more grab bars in the bathroom and shower and some rails on the stairs. I removed our stair rail years ago when all it was being used for was a zip line by the boys. Fortunately I had Sarah's aunt and my mom here helping with them so I could actually get the projects done. Later in the evening I was working in the bathroom when Geddy and Eli came running in. You might question the veracity of this if you don't have little kids but I swear I could't make this stuff up...they were yelling "Dad, Wesley has super glue all over his tongue." Sure enough, he did. Not just his tongue but his lips, chin and teeth. It was all over everything. I knew exactly what had happened as soon as I saw him. I had brought home my toolbox which was in the back of my truck. I always keep a few tubes in there. He had tried to open one and when all else failed he just bit it. It exploded all over in his mouth. With a lot of scrubbing with a toothbrush, soap and toothpaste from Aunt Diana, and a warm bath soaking his face, it mostly came off. A few teeth are still covered with it but it'll wear off in a few days. That kid, I swear.
Anyway, we have had some ups and downs and I'm sure we will continue to do so. I know Sarah is frustrated with the slow progress of her recovery but she is working hard and has a good attitude, all things considered. The difference in her whole persona, and probably mine, in the last few days is night and day from where it was earlier this week. I can't imagine how it would be to not be able to do the things and feel the way you want to and are used to. She is strong.
I know this was no Twilight or anything but I hope there was enough drama for everyone. I'll try harder to keep this updated so it's not so long next time. Thanks for reading.
Thursday, June 28, 2012
Lots of people have been inquiring about Sarah since the surgery on Monday. It makes me happy to see how many people care about her and us. I apologize if I have not responded to every text or email and I admit I haven't been answering the phone much. Don't take it personal, it's just been a little hectic on my end of the boat. Sarah doesn't even have her phone nor has she really been able to talk much due to her condition but in time I'm sure she will get back in touch with you all. Right now our main focus is getting her well.
I've spent the last few nights and days with her in the Neuro center at the U of U hospital and was spelled off from time to time by my mom who is there tonight, my sister in law and Sarah's aunt who spent the day with her today. I've had a lot of mixed emotions during this time. I still feel a great sense of relief that the surgery went well and that she is on the road to recovery. The doctors and nurses think that she is making great progress in a short time she has been there. It has been sad to watch her struggle so hard to do simple things like walk and talk and feed herself.
She is very strong, both physically and mentally. The physical therapists have been impressed with how strong her body is. She is able to move her arms and legs very well but is really lacking the coordination to control what everything does. A huge side effect of the brain surgery is the toll it has taken on her ability to control her body. It wants to do all the normal things but isn't getting the right signals from the brain to do so. The surgery was so deep in her brain and in such a delicate spot that just getting in there, not to mention cutting and scraping out the tumor (cavernous malformation if you want to get all technical), caused a lot of irritation and swelling. From my understanding this is confusing the signals that it sends to the body to make it do what she wants it to do. So her legs are strong enough to move and support her, but she's not able to apply the right pressure or flex the right muscles in unison to hold herself up.
She has improved drastically though in just the last day or two. She is an extremely independent and strong willed person, anyone who knows her can attest to that. Countless times in the last few days she has started to get herself out of bed because she's sick of laying there. When the therapists take her on her daily walk she tells them she wants them to take her for a long one to push her and get her better faster. She wants to feed herself and is getting it down pretty good. For the first day or two she really struggled to hold a fork, and would miss her mouth more often than not. But the last few days she refused to let me feed her and did it on her own.
Apparently they feel that she is making good progress because this afternoon they transferred her from the Acute Care center to the rehabilitation center one floor below. They expect her to stay there for no less than 2 weeks but very possibly longer. Tomorrow morning they will do a complete assessment of her condition and her needs and formulate a rehabilitation plan to focus on getting her back to where she can function. She will meet with occupational therapists to help her with day to day survival skills like writing, dressing and communicating. She will also be working with physical therapists and doctors to get her body coordination back on track. They said that their main goal in the time they have her is to get her to a point where she can come home and be safe. Now this is all relative. When you live with 4 boys you are never really safe, you gotta always be watching your back. I swear at least once a day something gets chucked at my groin. Just today I got home after not seeing the boys for a few days. They were all begging me to come out to the backyard. Finally I did and just as I stepped out the back door I was ambushed with water balloons and a hose. A nice and thoughtful welcome home gesture. Anyway, we know that once she is back home with us there will still be a lot of work needed to get her back to where she used to be. If I'm being honest, this is a pretty daunting task in my eyes. The boys and I rely on her for so much and we are having to adapt to life without her for the time being. I can't imagine going through this without the help of some very special people who are giving so much of their time to us right now. I am so thankful for them all.
Another thing that has really caught me off guard was how this would affect Sarah's mental state. She is sharp as a tack. She'll tell the nurses and doctors the ages and names of all the kids and their birthdays, the date, her address and all the meds and doses she had been prescribed pre surgery. Yet she has trouble distinguishing reality from her thoughts often. This is simply from my observations and communications with her as I don't know what she's actually thinking. I share this not to mock or embarrass her in any way but to help explain what she is going through. For example yesterday in the middle of the night she was insisting that I needed to let our 2 year old Ollie out of the bathroom where I apparently had locked him up. I'm still not sure how to react to this so first I attempted to explain to her that we were at the hospital and that Ollie was safe at home with her aunt. When that didn't work and she continued insisting, getting angrier, I tried to go along with it and open the bathroom door to show her that he wasn't in there. This really upset her and her mood escalated from there. The nurses heard the commotion and came in. She told them she was going to punch me if I didn't let him out. A few minutes later she was very calm and asking me for a drink. This is one of many similar instances, most of which occur in the night. I have to keep telling myself that this is not really Sarah, just the effects of everything she's going through. I've been reading and asking a lot about this. There are many opinions as to what causes the delusion or maybe just confusion. It could be due to the pain meds and steroids she is on, along with the trauma and injury her brain has experienced which is mixing up her thoughts and emotions. One doctor referred to it as Sundowners Syndrome, or Post Op Psychosis, and says it is very common for people to experience this after major surgery, especially on the brain, and more commonly at night for some reason. We all love her so much though and know that she is a sweet and caring woman so we do our best to let it go and hope that it will soon be over for her.
I really didn't know what to expect as far as a recovery process. I had a pretty broad spectrum of outcomes in my mind. I was mentally preparing myself for a worst case scenario such as her being paralyzed or even dead but I think what I was really hoping for was a few days in the hospital and then her coming home and needing a little more rest than usual. I didn't dedicate a tremendous amount of thought to all of the in between. So yes, I think I was a little underprepared mentally for the challenges we now face. But, you just roll with the punches and adapt.
Today I tried to go back to work and get some tile laid. I had a brief moment, well more like a few hours, of overwhelming stress. The hospital called and told me they were ready to transfer Sarah to the rehab center. I thought I'd be a sensible guy and call my insurance company just to be sure that the rehab would be covered. After about a year on hold they told me that the U of U rehab was an out of network provider and that it would be covered but only after an additional 5 grand deductible and then another 10 grand. That got me wondering then if the surgery that was done at the U would be considered out of network also, even though I was assured it wasn't a few weeks ago. I called back to try and trick them and spoke to a different insurance representative but got the same answer...out of network. In my mind I was climbing the bell tower with an AK 47 but after another hour or two on the phone and on hold and feeble attempts to stick a few tiles on the wall to distract myself they came to the conclusion that there had been a misunderstanding and that our plan would cover them both. I guess I've got to get my heart rate going somehow.
Anyway...I'm excited to see the progress that Sarah will undoubtedly make in the days and weeks to come and I can't wait to see her feeling good again. It is strange to be here at home and her not be with us. It was weird to not be texting and talking to her throughout the day. She is who I vent to all the time from work, she's the only one (aside from Facebook tile nerd friends) who will listen to my boring tile tales and pretend she cares. She keeps me entertained throughout the day with funny stories about the kids and all the shenanigans they do. I can't wait to have her back to her old self. Everyone who has been working with her is confident that this is very possible with lots of patience and effort from her and us.
I know lots of people want to visit her but I'm not sure how ready she feels for that. Please give us a few more days to see how she does and then we'll go from there. I'll try to stay in touch.
Thanks for reading.
Tuesday, June 26, 2012
Doctor Jensen just came in and was ecstatic to see how well Sarah is doing. He expects that with some inpatient rehab after the hospital stay and of course with some time that she will make a full recovery.
After hearing about her walking this morning and checking her current symptoms he was very optimistic.
They are recommending that after being released from the hospital she spend around 2 weeks or so in an inpatient rehabilitation facility here at the U to help with her walking, speech and cognitive skills.
He also believes that she is 2 days ahead of his expected recovery time and that the delusional behavior and thoughts are a direct result of the steroids which they are slowly weening her off of.
I'm headed home to spend some time with the boys then back up here for the night.
After hearing about her walking this morning and checking her current symptoms he was very optimistic.
They are recommending that after being released from the hospital she spend around 2 weeks or so in an inpatient rehabilitation facility here at the U to help with her walking, speech and cognitive skills.
He also believes that she is 2 days ahead of his expected recovery time and that the delusional behavior and thoughts are a direct result of the steroids which they are slowly weening her off of.
I'm headed home to spend some time with the boys then back up here for the night.
I am here in the Neuro Intensive care unit with Sarah. She had a really rough night. Her brain experienced a lot of trauma during the surgery. Between that and the meds and just everything that has been going on the doctor thinks it caused some post operation psychosis. She was really confused and disoriented and having some very vivid thoughts and dreams that she thought were really happening. It is hard and sad to see her like this but I have to remind myself that it is hopefully just very temporary. There was one nurse that she really clicked with who was able to help keep her calm from time to time. I was grateful that her sister stayed with her for a while so I could go home to spend some time with the kids and get them in bed. It was good to reassure them that their mom was okay.
This morning things have gotten a little better for her. She is still kind of delusional and confused but at the same time very alert and aware of what's going on around her. She is experiencing a lot of pain and discomfort and some bad double vision which the doctor said would happen. She is talking a lot though a good part of it is gibberish but as a man I am good at zoning all that out anyway :) She has said some funny stuff that made me laugh but she's totally serious. I'm just glad she's able to communicate.
She was able to get up and walk down the hall with me and 2 physical therapists holding her. They were impressed that she did so well. She just got all cleaned up and got new clothes and sheets and teeth brushed thanks to our sweet El Salvadorian CNA named Rosa. I watched as she did all this and was pretty touched that a total stranger would have so much compassion for my wife. I don't think I could do that for a complete stranger. These nurses and caregivers seriously have a special gift of caring for people.
Back to the surgery a bit...So yesterday at about 5:00 pm our neurosurgeon Dr. Jensen came out to the waiting room to find me. I could tell by the smile on his face that things went well. He said he had just finished and that Sarah came to very quickly after he was done. She gave him 2 thumbs up, wiggled her toes, smiled and tried to pull off her oxygen mask. He took us into a room and talked about what he had done. They made an incision about 5" long from the base of the skull down to the lower neck. They cut into the skull, a hole about the size of a racquetball maybe. They had to separate the 2 hemispheres of the brain to get right into the center where the tumor was sitting basically on top of the brain stem. He said that after getting in there and looking closer, he discovered that it wasn't necessarily a tumor per say but rather a "cavernous malformation" as he put it. From my understanding it started out, maybe at or before birth even, as abnormally formed blood vessels that enlarged slowly after repeated small hemorrhages possibly throughout Sarah's life. It eventually formed a large mass. This one happened to be sitting right on top of the brain stem, in a very hard and tricky place to get to. He said he really had to work at it to get it out, and in lots of little pieces. He had to be extremely careful in the process to not damage the spinal cord. Due to the bleeding over the years it had stained the surrounding brain making it really hard to see exactly where the mass was and wasn't. He was confident that he gotten most of it out and was also optimistic that it wasn't malignant but can't say for sure until the biopsy comes back later this week. Overall his feeling was that the surgery went better than we had all hoped for. We are so glad.
After reading a bit on google we found that it is common for people with a cavernous malformation to be mis diagnosed as having Multiple Sclerosis. This is interesting as many of Sarah's symptoms over the last months and even the last year have been parallel to MS symptoms.
I know this was just a day in the life for him but for me and my family and for Sarah's, this was an extremely stressful, scary and hopefully once in a lifetime experience. I'm so grateful that Dr. Jensen and his team possess the amazing talent and ability to do what they did for Sarah. To say that we are relieved would be an understatement.
I wish it was all over an we could go home and back to our normal life now but it's looking like we will have some tough challenges ahead in her recovery. Maybe for a few weeks only, maybe months, maybe longer. She is strong and determined but for today she is struggling to make sense of reality and is in a lot of discomfort. They moved her out of ICU and into Acute Neuro Care an hour ago and after eating some lunch she is finally drifting off to sleep.
I know many friends and family would love to see her but for the time being I think she really just needs some peace and quiet. Commotion seems to stress her out and she's having a hard time interpreting peoples good intentions. She really struggles to talk, feels a little claustrophobic and is experiencing some delusion....from best I can tell by observing her that is. Please know that we appreciate all your thoughts and prayers so much and look forward to visiting as her condition improves, hopefully very soon.
We will keep you posted. Thanks.
Also, for any health care professionals reading this, please excuse my poor attempt to convey my own interpretation of what the doctors and nurses are telling me. I'm doing my best to take it all in but sometimes I just wing it.
This morning things have gotten a little better for her. She is still kind of delusional and confused but at the same time very alert and aware of what's going on around her. She is experiencing a lot of pain and discomfort and some bad double vision which the doctor said would happen. She is talking a lot though a good part of it is gibberish but as a man I am good at zoning all that out anyway :) She has said some funny stuff that made me laugh but she's totally serious. I'm just glad she's able to communicate.
She was able to get up and walk down the hall with me and 2 physical therapists holding her. They were impressed that she did so well. She just got all cleaned up and got new clothes and sheets and teeth brushed thanks to our sweet El Salvadorian CNA named Rosa. I watched as she did all this and was pretty touched that a total stranger would have so much compassion for my wife. I don't think I could do that for a complete stranger. These nurses and caregivers seriously have a special gift of caring for people.
Back to the surgery a bit...So yesterday at about 5:00 pm our neurosurgeon Dr. Jensen came out to the waiting room to find me. I could tell by the smile on his face that things went well. He said he had just finished and that Sarah came to very quickly after he was done. She gave him 2 thumbs up, wiggled her toes, smiled and tried to pull off her oxygen mask. He took us into a room and talked about what he had done. They made an incision about 5" long from the base of the skull down to the lower neck. They cut into the skull, a hole about the size of a racquetball maybe. They had to separate the 2 hemispheres of the brain to get right into the center where the tumor was sitting basically on top of the brain stem. He said that after getting in there and looking closer, he discovered that it wasn't necessarily a tumor per say but rather a "cavernous malformation" as he put it. From my understanding it started out, maybe at or before birth even, as abnormally formed blood vessels that enlarged slowly after repeated small hemorrhages possibly throughout Sarah's life. It eventually formed a large mass. This one happened to be sitting right on top of the brain stem, in a very hard and tricky place to get to. He said he really had to work at it to get it out, and in lots of little pieces. He had to be extremely careful in the process to not damage the spinal cord. Due to the bleeding over the years it had stained the surrounding brain making it really hard to see exactly where the mass was and wasn't. He was confident that he gotten most of it out and was also optimistic that it wasn't malignant but can't say for sure until the biopsy comes back later this week. Overall his feeling was that the surgery went better than we had all hoped for. We are so glad.
After reading a bit on google we found that it is common for people with a cavernous malformation to be mis diagnosed as having Multiple Sclerosis. This is interesting as many of Sarah's symptoms over the last months and even the last year have been parallel to MS symptoms.
I know this was just a day in the life for him but for me and my family and for Sarah's, this was an extremely stressful, scary and hopefully once in a lifetime experience. I'm so grateful that Dr. Jensen and his team possess the amazing talent and ability to do what they did for Sarah. To say that we are relieved would be an understatement.
I wish it was all over an we could go home and back to our normal life now but it's looking like we will have some tough challenges ahead in her recovery. Maybe for a few weeks only, maybe months, maybe longer. She is strong and determined but for today she is struggling to make sense of reality and is in a lot of discomfort. They moved her out of ICU and into Acute Neuro Care an hour ago and after eating some lunch she is finally drifting off to sleep.
I know many friends and family would love to see her but for the time being I think she really just needs some peace and quiet. Commotion seems to stress her out and she's having a hard time interpreting peoples good intentions. She really struggles to talk, feels a little claustrophobic and is experiencing some delusion....from best I can tell by observing her that is. Please know that we appreciate all your thoughts and prayers so much and look forward to visiting as her condition improves, hopefully very soon.
We will keep you posted. Thanks.
Also, for any health care professionals reading this, please excuse my poor attempt to convey my own interpretation of what the doctors and nurses are telling me. I'm doing my best to take it all in but sometimes I just wing it.
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