Hello Everyone! This is Ben. Jesse has been quite busy the last week or so since returning to work (along with taking me around to all my appointments, helping me around the house, etc.), so I offered to write an update on the blog. It is also good typing practice for me.
First, I have to say thank you so very much to everyone that reads the blog (along with many others) for all of your support throughout this entire process. The outpouring of support has truly meant so much to Jesse and me. It has certainly made going through this whole process much easier. From every visit, phone call, text message, Facebook message, to all the wonderful cards with words of encouragement and support, to all the food that so many of you have brought, it has been so meaningful. We have been truly touched by the graciousness of so many people in our lives. I really cannot say thank you enough or express how meaningful it has been.
Now, I thought it may be interesting to hear (hopefully in a somewhat concise manner, but after completion of this entry I will note it is not particularly concise) about the surgery and recovery thus far from my perspective. It was certainly a shock to learn the diagnosis of a spinal cord tumor back on March 19th. Although I had been having some issues over the last several months, which I thought probably were neurologically related given the different parts of the body (swallowing, left leg, and left hand) involved. It seemed in my non-medically trained opinion that the only thing that could be causing all of these problems was the brain. The spinal cord never crossed my mind. Certainly not a spinal cord tumor. After I had the MRI on the 19th, the neurologist showed me the scans that same day. The first thing he showed me was a cyst in the area of my brain stem. He also showed me a syrinx (basically a rather large collection of cerebralspinal fluid, similar to a cyst) right below that in the very upper part of my cervical spine. He also mentioned the tumor, but I think I was overwhelmed at the time and thought he was referring to the cyst as a cystic type of tumor. I really was just shocked at the diagnosis and the mention of the need for surgery, that I did not fully comprehend the explanation.
When we met with the neurosurgeon the next day (thanks to my neurologist for personally making calls to get me in to see such a sought-after neurosurgeon so quickly), I was surprised to learn that the main concern was actually a tumor inside my spinal cord. As Jesse has mentioned previously, we learned that the removal of the tumor is hoped to resolve all of the cysts without any additional surgery, as they think the tumor was blocking proper CSF flow (however there is the possibility that additional surgery would be needed to drain the cysts if they do not drain on their own). I asked if surgery was the only option, and I was told in no uncertain terms that it was. Otherwise, the tumor would continue to grow and I would eventually have more and more neurological deficits, and eventually lose almost all physical neurological functions. Obviously, this was not an option. Thus, we scheduled surgery for April 5th, as the sooner I could have surgery (especially given the size of my tumor and the amount of compression on the spinal cord), the better the likely outcome.
It was a tough waiting those 16 days to have the surgery, as I just wanted to get it over with. Anticipation of the unknown is never fun. On the 5th, I remember everything from that morning up until they started to wheel me out of the prep room. Apparently I said goodbye and see you later to Jesse after being wheeled out, but they had already given me some sort of medicine, so I don't remember it. Obviously I do not remember, nor was I conscious for, the surgery itself, but the procedure itself is quite interesting. My tumor was between C3-C6, so they first perform a laminectomy (removal of the laminae part of the vertebra) on C3-C6 (so 4 vertebral levels). Then after removal of the bone, they are able to access the spinal cord sheath (the dura). They cut the dura open and expose the spinal cord itself. In the case of my tumor, it arose from the cells inside the spinal cord itself, so it was inside the spinal cord. Thus, the next step is to cut open the spinal cord itself. Once this is done, the surgeon takes a biopsy of the tumor and sends it for an immediate pathological analysis. If the tumor is benign (as it was in my case), then the goal is to completely remove the tumor and achieve a total resection. Some tumors are easier than others to remove, as some are clearly differentiated from the cord itself, while some are more entwined with the cord, making removal without damage to the cord more difficult. It was my understanding (from my family's conversation with the surgeon after the surgery) that mine was largely differentiated, but there were some areas that were more difficult to resect. However, they were able to perform a total resection (which was confirmed by MRI the next night). Once they perform removal of the tumor, then everything is sewn back up. The good news with that the type of tumor I had (ependymoma), is that if a total resection is performed, the likelihood of recurrence is only around 5% (although I will require regular MRI monitoring to check for recurrence).
After the surgery, I vaguely remember being in the recovery room. I next remember waking up in the ICU. The first thing I did was try to move my fingers and toes, which I was able to do. I remember continuing over the next day or two to be wiggling them all the time (I wanted to make sure they wouldn't stop working!) The care in the ICU was great and I was able to move out after less than two full days. The thing that stuck with me the most from the neuro ICU unit was even though I was in pain, and I couldn't feel most of my lower body, was how fortunate I was. On Saturday night, when Jesse and my dad were in the room, the nurse was explaining that I would need to go to an MRI, but she was only talking to Jesse and my dad. She suddenly looked at me, apologized for not talking to me as well, but she said she is not used to having patients that can talk and comprehend what she is saying. That was a truly sobering moment, and it made me realize how fortunate I am.
After a day or so in the regular neuro floor, I was able to return home. I was expecting to be in the hospital for at least several more days, along with a stint in inpatient rehab for an additional week, so being able to go home, without any inpatient rehab, was truly great. I think Jesse has documented how the next couple weeks pretty thoroughly. The last few days have been good. This weekend, we had visitors on Saturday and Sunday. On Saturday, Jesse's aunt and uncle, Sherri and Larry, along with her grandmother, came to visit. We went out to lunch, and visited for awhile. It was great to see them, and it was very nice of them to come down from Saxapahaw. On Sunday, my parents came for lunch, which was nice as well. I had PT yesterday (as they have reduced my OT now to once per week)! I am continuing my current exercises until my next appointment tomorrow (after my morning appointment with the surgeon's office).
As to how I am doing currently, overall I continue to progress. I still have numbness that moves around (currently in my hips and very upper legs area), but overall the numbness is less in most of my legs. It is now more of a lack of full sensation in most of my legs and feet, rather than complete numbness. I am seeing improvement in the return of sensations overall, especially in my feet related to feeling different surfaces and different temperatures. I have read, as well as been told, that more and more sensations will return over 6 months after surgery. I am hopeful that by that time they almost all will have returned. Unfortunately, no matter how good of a surgeon you have, basically everyone that has an intramedullary tumor removed will have sensory deficits for several months, and perhaps some residual lack of sensation and numbness for the rest of your life. This is because the cutting open of the spinal cord itself (the myelotomy) disrupts sensations. The lack of sensation and numbness is by far the most frustrating part of my recovery. However, it could be much worse, so I always keep that in perspective.
Fortunately, my motor skills are largely intact. The deficits I originally had after the surgery in that regard are rapidly improving. I can walk normally (it still feels a little odd due to the lack of sensation, but as more feeling is returning, the "weird" feeling is lessening). This includes being able to walk up the stairs normally. My balance has greatly improved over a couple weeks of physical therapy, and is getting close to normal as well. The strength in my legs is returning too. I honestly feel like I have the balance and strength to run (although I don't think they will let me do that for a good while due to the need to not jostle or otherwise disturb my neck where the surgery took place). My hands are improving with therapy as well. I am still lacking dexterity in both hands. My typing is continuing to improve (my left hand can essentially type normally, but the last two fingers on my right are still an issue). My writing continues to improve, as it is easily legible now (probably no worse than the legibility of my pre-surgery handwriting to be honest). However, it still requires more concentration, but there has been marked improvement from two weeks ago.
We are really looking forward to my appointment tomorrow with the neurosurgeon's office. I am hoping that they will release me to supervised driving tomorrow, with a return to full driving a few days after that. However, that will be up to them to decide. I am also hoping to get a tentative return to work date from them tomorrow as well. We also have quite a few questions regarding how long it might be before they evaluate whether the cysts have resolved on their own, how we go forward from here, removal of some restrictions regarding moving my neck (as my shoulders and neck are very tight, and at times painful, from lack of movement) so I can perhaps work on range of motion exercises as well. We will certainly update everyone once we know more tomorrow.
Finally, I want to express my thanks to Jesse here as well. She has been absolutely incredible throughout this whole process. I certainly don't know how I could have gone through this without her. She has been with me every step of the way, and has taken wonderful care of me from the moment I got out of surgery until now. The first week after surgery when she was helping me put a shirt on (I can thankfully dress myself now), I told her she probably didn't expect to have to help me do things like this for another 50 years or so. But she has been great in getting everything I need, taking me to all my appointments, and overall being great support.
I also want to thank my parents for coming down here so many times and helping both me and Jesse out. They have taken lots of their time to come down and help give us support as well, so I want to thank them.
This was quite a long entry (I obviously have some time on my hands currently), so I will now wrap it up. We will update everyone after tomorrow's appointments (and Jesse will probably want to include an updated picture of my scar, as the last of the steri-strips came off this morning).
-Ben
Tuesday, April 30, 2013
Thursday, April 25, 2013
We Continue
Good morning!
Although I feel like I'm repeating myself a lot, I know we will have new updates and progress to report, so I want to keep the blog going. I'm considering us both very lucky that the news continues to be good and that up-to-the-minute updates aren't necessary!
Ben has had a good week so far. He had physical and occupational therapy appointments again on Monday. It had been exactly one week since his first appointments, and both therapists immediately commented on his progress! The physical therapist was especially impressed with how much his walking and balance had improved in the previous week. I can definitely see improvement each day, but since it is gradual, Ben sometimes has a hard time knowing how well he is progressing. I'm glad the therapists pointed it out! He has both appointments again this morning. The exercises he has to do at home keep increasing and increasing, but he is keeping up. The physical therapist added (supervised!!!) balance exercises this week. Ben also continues to practice fine motor skills with his hands and a few shoulder exercises. Until he sees the surgeon again next week, he is still supposed to limit all bending, twisting, and lifting.
Ben's incision continues to heal. We're still waiting for all of the steri-strips to fall off so that I can get a clear photo! From what I can see where the strips are gone, it's amazing how quickly it has healed. There is very little scabbing, and the scar itself is a pretty thin line. Ben's neck pain has decreased this week, which is great.
Ben finished tapering off of his steroids on Sunday, and this caused a rebound headache on Tuesday night. The headache lasted for most of the afternoon and night, but it was gone by mid-morning on Wednesday. I called the nurses to get some guidance, and that it is when we learned that the headache was probably caused by coming completely off of the steroids. There were a whole host of secondary symptoms she asked about (that I'm assuming would've been cause for concern), but Ben hadn't had any of those. They did ask us to call back if he gets another headache, but so far so good!
I returned to work some this week, and so far the transition has gone well. Ben keeps me posted on how he is doing at home (because otherwise I would go crazy!), and I have taken long lunches each day to come back and see him, supervise some exercises, eat, etc. I will work half a day again this afternoon after Ben's appointments. Next week, I will return to a more regular schedule with just time off for Ben's various appointments. We're very much looking forward to the May 1st appointment with the surgeon/PA to discuss Ben's healing so far, the steps for moving forward and things like Ben driving, his possible return to work date, etc. There is no rush on any of those things, of course, but I think we're both ready for at least an estimated timeline.
Everything about work has been great so far. My wonderful co-workers have kept everything running perfectly during my absence, and it has been so nice to step back into my job. Extra special bonus? My sweet husband had this delivered on my first day back! (The 'cupcakes' are chocolate covered pineapple!! YUM!)
Ben and I continue to walk together whenever possible, and he has worked hard to walk even more around the house while I'm at work. The surgeon's office reiterated again how much consistent walking would help with the healing process, and Ben has taken that to heart!
The photos were so much fun to find and post last time...I'm going to close with a few more!
Although I feel like I'm repeating myself a lot, I know we will have new updates and progress to report, so I want to keep the blog going. I'm considering us both very lucky that the news continues to be good and that up-to-the-minute updates aren't necessary!
Ben has had a good week so far. He had physical and occupational therapy appointments again on Monday. It had been exactly one week since his first appointments, and both therapists immediately commented on his progress! The physical therapist was especially impressed with how much his walking and balance had improved in the previous week. I can definitely see improvement each day, but since it is gradual, Ben sometimes has a hard time knowing how well he is progressing. I'm glad the therapists pointed it out! He has both appointments again this morning. The exercises he has to do at home keep increasing and increasing, but he is keeping up. The physical therapist added (supervised!!!) balance exercises this week. Ben also continues to practice fine motor skills with his hands and a few shoulder exercises. Until he sees the surgeon again next week, he is still supposed to limit all bending, twisting, and lifting.
Ben's incision continues to heal. We're still waiting for all of the steri-strips to fall off so that I can get a clear photo! From what I can see where the strips are gone, it's amazing how quickly it has healed. There is very little scabbing, and the scar itself is a pretty thin line. Ben's neck pain has decreased this week, which is great.
Ben finished tapering off of his steroids on Sunday, and this caused a rebound headache on Tuesday night. The headache lasted for most of the afternoon and night, but it was gone by mid-morning on Wednesday. I called the nurses to get some guidance, and that it is when we learned that the headache was probably caused by coming completely off of the steroids. There were a whole host of secondary symptoms she asked about (that I'm assuming would've been cause for concern), but Ben hadn't had any of those. They did ask us to call back if he gets another headache, but so far so good!
I returned to work some this week, and so far the transition has gone well. Ben keeps me posted on how he is doing at home (because otherwise I would go crazy!), and I have taken long lunches each day to come back and see him, supervise some exercises, eat, etc. I will work half a day again this afternoon after Ben's appointments. Next week, I will return to a more regular schedule with just time off for Ben's various appointments. We're very much looking forward to the May 1st appointment with the surgeon/PA to discuss Ben's healing so far, the steps for moving forward and things like Ben driving, his possible return to work date, etc. There is no rush on any of those things, of course, but I think we're both ready for at least an estimated timeline.
Everything about work has been great so far. My wonderful co-workers have kept everything running perfectly during my absence, and it has been so nice to step back into my job. Extra special bonus? My sweet husband had this delivered on my first day back! (The 'cupcakes' are chocolate covered pineapple!! YUM!)
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| Photo from the Edible Arrangements website because I started scarfing mine down without taking a photo! |
The photos were so much fun to find and post last time...I'm going to close with a few more!
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| Honeymoon in Blowing Rock (July 2009) |
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| First trip to Chicago (October 2009) |
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| Wedding in Lenoir (December 2009) |
Sunday, April 21, 2013
Two weeks and then some
No news is definitely good news as we pass two weeks since Ben's surgery. He continues to progress each day, although we are learning quickly that it is easy for him to do too much when he's feeling really good. Between therapy appointments, walking, and going out to eat one day last week, we might have overdone it just a bit. Ben has had a couple of days in a row with more numbness and tiredness, especially in his lower legs. It is definitely frustrating for him, especially after he has days where he feels so much better.
The good news is that he bounces back! He's feeling good today, and he has been keeping up with all of his therapy exercises, even when he isn't feeling 100%. He started the shoulder and elbow/wrist exercises, and they're helping his neck muscles feel better. The neck muscles are the ones that the surgeon had to cut through to get to the spinal cord, so they're understandably sore from that. Combine the surgery with the fact that he has been trying to immobilize his neck/incision as much as possible, and it has lead to some definite muscle tightness. The first time he did the exercises, they were difficult and a bit painful. He stretched a lot and attempted them again today, to much better results! They were easier to complete, and he says he can feel his shoulders/neck loosening up a bit. He has also been practicing writing and typing each day, and he's getting better and better at many tasks that require fine motor skills. He has all of us attempting his exercises to test our own abilities--he can do some just as well as any of us can! :-)
He continues to practice his leg exercises twice each day doing more reps each day. We are looking forward to his next physical therapy appointment (which is tomorrow) so that we can add some variety into those exercises!
We've been enjoying the nice weather when possible. Ben's parents visited this weekend, and it was great to see them! Deborah and I enjoyed a girls' day out with shopping and manicures. And we all met up for a pizza dinner, which was delicious.
We want to thank you all for your continued support throughout this process. The surgery already seems like a lifetime ago, so it's hard for me to believe it's only been 2 weeks. We are so pleased with Ben's progress, but we both do realize that the road to recovery will continue throughout the next weeks and months. We have never faced a moment of feeling alone in this journey, and we are both learning so much about how to support others in their times of need.
We haven't been taking many pictures lately, but I'll close with some oldies I found on the computer. :-) We'll try to get some new photos this coming week!
The good news is that he bounces back! He's feeling good today, and he has been keeping up with all of his therapy exercises, even when he isn't feeling 100%. He started the shoulder and elbow/wrist exercises, and they're helping his neck muscles feel better. The neck muscles are the ones that the surgeon had to cut through to get to the spinal cord, so they're understandably sore from that. Combine the surgery with the fact that he has been trying to immobilize his neck/incision as much as possible, and it has lead to some definite muscle tightness. The first time he did the exercises, they were difficult and a bit painful. He stretched a lot and attempted them again today, to much better results! They were easier to complete, and he says he can feel his shoulders/neck loosening up a bit. He has also been practicing writing and typing each day, and he's getting better and better at many tasks that require fine motor skills. He has all of us attempting his exercises to test our own abilities--he can do some just as well as any of us can! :-)
He continues to practice his leg exercises twice each day doing more reps each day. We are looking forward to his next physical therapy appointment (which is tomorrow) so that we can add some variety into those exercises!
We've been enjoying the nice weather when possible. Ben's parents visited this weekend, and it was great to see them! Deborah and I enjoyed a girls' day out with shopping and manicures. And we all met up for a pizza dinner, which was delicious.
We want to thank you all for your continued support throughout this process. The surgery already seems like a lifetime ago, so it's hard for me to believe it's only been 2 weeks. We are so pleased with Ben's progress, but we both do realize that the road to recovery will continue throughout the next weeks and months. We have never faced a moment of feeling alone in this journey, and we are both learning so much about how to support others in their times of need.
We haven't been taking many pictures lately, but I'll close with some oldies I found on the computer. :-) We'll try to get some new photos this coming week!
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| Summer 2006 (look at our hair! :-) |
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| Easter 2007 in Winston |
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| Engaged!! July 2008 |
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| Married!! July 2009 |
Thursday, April 18, 2013
Checking In
Hello again!
We have been getting into a little bit of a routine here at home these past few days, and we've also been getting back to more real-life things as much as we can. We're easing our way into things for now...we certainly don't want Ben to overdo anything, and I can see myself getting overwhelmed with details if we try to do too much too fast. "Busy" for us right now involves getting out of the house together once a day...
Ben is definitely keeping up with all of his therapy 'homework.' He has four different leg exercises to do twice a day (and trust me, they're HARD...I tried them myself...), and he has been practicing various exercises with his hands as well. For occupational therapy, he has been doing things like: practicing writing and typing, picking up grains of rice with tweezers, drawing shapes with pencil/ruler and then cutting them out, sorting piles of randomness (screws, rubber bands, paperclips, etc.) into individual cups, stringing together paperclips and then un-stringing them, etc. He just finished up at his second occupational therapy appointment this afternoon, and he has even more homework now. He will be doing some shoulder exercises with an exercise band, and he has pages and pages of writing homework to complete as well as an online typing test. I am so glad because I can already see improvement in his hands since his first appointment. I'm sure the new exercises will help even more.
We've been using our outings to walk at the green way (still!), and it's really enjoyable to be together there in the mornings. Each time we go out, we walk a little bit longer and a tiny bit faster. Ben's energy is getting better and better each day as well, but he has certainly earned a few rest breaks this past week!
The upcoming week will get even busier. From here on out, Ben will have both physical and occupational therapy appointments twice per week. They're currently scheduled that way through the middle of May, but I think that their frequency could change depending on how Ben progresses. I am going to attempt to ease my way back into work part-time next week as well. I plan to take intermittent leave for all of Ben's appointments and to come check on him at home during the day. I am looking forward to seeing all my sweet library kiddos again soon (two new baby siblings have arrived since I left, y'all! I need to see those tiny babies! :-)
We have continued to receive sweet cards, kind message, and delicious meals. We are so very appreciative! I cannot imagine being on this journey without all of the love and support we've had the whole way through. I know I'm repeating myself, but it definitely bears repeating: we are SO GRATEFUL.
We have been getting into a little bit of a routine here at home these past few days, and we've also been getting back to more real-life things as much as we can. We're easing our way into things for now...we certainly don't want Ben to overdo anything, and I can see myself getting overwhelmed with details if we try to do too much too fast. "Busy" for us right now involves getting out of the house together once a day...
Ben is definitely keeping up with all of his therapy 'homework.' He has four different leg exercises to do twice a day (and trust me, they're HARD...I tried them myself...), and he has been practicing various exercises with his hands as well. For occupational therapy, he has been doing things like: practicing writing and typing, picking up grains of rice with tweezers, drawing shapes with pencil/ruler and then cutting them out, sorting piles of randomness (screws, rubber bands, paperclips, etc.) into individual cups, stringing together paperclips and then un-stringing them, etc. He just finished up at his second occupational therapy appointment this afternoon, and he has even more homework now. He will be doing some shoulder exercises with an exercise band, and he has pages and pages of writing homework to complete as well as an online typing test. I am so glad because I can already see improvement in his hands since his first appointment. I'm sure the new exercises will help even more.
We've been using our outings to walk at the green way (still!), and it's really enjoyable to be together there in the mornings. Each time we go out, we walk a little bit longer and a tiny bit faster. Ben's energy is getting better and better each day as well, but he has certainly earned a few rest breaks this past week!
The upcoming week will get even busier. From here on out, Ben will have both physical and occupational therapy appointments twice per week. They're currently scheduled that way through the middle of May, but I think that their frequency could change depending on how Ben progresses. I am going to attempt to ease my way back into work part-time next week as well. I plan to take intermittent leave for all of Ben's appointments and to come check on him at home during the day. I am looking forward to seeing all my sweet library kiddos again soon (two new baby siblings have arrived since I left, y'all! I need to see those tiny babies! :-)
We have continued to receive sweet cards, kind message, and delicious meals. We are so very appreciative! I cannot imagine being on this journey without all of the love and support we've had the whole way through. I know I'm repeating myself, but it definitely bears repeating: we are SO GRATEFUL.
Tuesday, April 16, 2013
Picture Post
Things continue to go well here at home. Ben is already being very diligent about his "homework" from both the physical and occupational therapists, and we're getting out of the house here and there when possible (we hit up the green way again this morning, which was great!). Here a few recent pictures. Note: There is a picture of his (covered) scar at the bottom...just look away if you're squeamish! :-)
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| Ben at the green way on Sunday |
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| Just some of the cards we've received; we are so very grateful for everyone's support! |
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| Some of our wedding flowers, delivered by wonderful co-workers |
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| Bella, as captured by Katie :-) |
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| Ben's scar (covered in steri-strips) |
Monday, April 15, 2013
Appointments, appointments
Our weekend was a good one. We got to spend time with Ben's dad and my mom throughout the weekend, which was great. Ben felt up to getting out of the house on Saturday, so we headed to get some frozen yogurt. It was Ben's first time in a car since he rode home from the hospital, and I think he enjoyed it (despite my driving!!).
We also went out to a greenway to walk on Sunday morning while it was nice and sunny. We all enjoyed being outside.
The rest of our weekend was pretty lowkey. We rested and ate and watched golf on TV. I even snuck out for a mani/pedi on Sunday afternoon while my mom was still here. :-)
Today has been the day full of appointments. Ben had a wound check at 11AM, where we were surprised to learn that he actually has no stitches at all! The nurse wondered why we were there because apparently for spinal surgeries they usually just use glue instead of stitches. We didn't know that, of course, and neither did the person scheduling our appointment. But it was great to go because we got to meet with both nurses in Dr. Asher's practice. They looked at his wound and assured us it was healing nicely. They left the steri-strips on for now...they said they would fall off on their own when they were ready. Ben is allowed to start showering normally at this point. He had been avoiding getting any water on the incision area at all, and he still isn't allowed to soak in the tub or go swimming, but luckily that's not usually part of his daily routine! :-)
We also got to talk with the nurses about the numbness he's been experiencing. They told us that it was likely because of the irritated nerves, especially as he is tapering off of the steroids he began taking before surgery. They also checked in with Dr. Asher, and he assured all of us that this kind of numbness is completely normal because of the (his word) "huge" tumor that was removed. The nerves that were compressed by the tumor are hopefully re-expanding, and swelling may be coming and going as his body adjusts to the steroid taper. As long as Ben isn't experiencing buckling in his limbs (which he hasn't been...thank goodness), the numbness isn't cause for concern.
Next up was physical and occupational therapy appointments. His physical therapy appointment focused mainly on his legs at this point. The physical therapist wanted to talk with Dr. Asher before starting any real work on Ben's neck...to make sure there are no restrictions she should know about. Ben's balance is a little bit off (which we assumed), and his hips are a bit weak. He has plenty of leg and hip exercises to do twice a day at home.
His occupational therapy appointment tested his grip and pinch strength as well as his general coordination with his hands. The therapist noted that Ben was using his whole arm to do movements that really should just require his hand and wrist. She gave him LOTS of homework to do--special "thera-putty" to practice with and lists of small movements to practice. He is supposed to sit and focus for 30 minutes a day on various activities to improve his hand strength and coordination.
At this point, he will continue both physical and occupational therapy appointments twice a week. The physical therapist mentioned that he could need therapy for up to two months or so. The occupational therapist wants to meet with him twice a week for now, and then begin meeting with him once per week after a couple of weeks.
These appointments were very positive, and we're so glad to know what Ben can be doing to regain his strength.
We will keep you posted!
We also went out to a greenway to walk on Sunday morning while it was nice and sunny. We all enjoyed being outside.
The rest of our weekend was pretty lowkey. We rested and ate and watched golf on TV. I even snuck out for a mani/pedi on Sunday afternoon while my mom was still here. :-)
Today has been the day full of appointments. Ben had a wound check at 11AM, where we were surprised to learn that he actually has no stitches at all! The nurse wondered why we were there because apparently for spinal surgeries they usually just use glue instead of stitches. We didn't know that, of course, and neither did the person scheduling our appointment. But it was great to go because we got to meet with both nurses in Dr. Asher's practice. They looked at his wound and assured us it was healing nicely. They left the steri-strips on for now...they said they would fall off on their own when they were ready. Ben is allowed to start showering normally at this point. He had been avoiding getting any water on the incision area at all, and he still isn't allowed to soak in the tub or go swimming, but luckily that's not usually part of his daily routine! :-)
We also got to talk with the nurses about the numbness he's been experiencing. They told us that it was likely because of the irritated nerves, especially as he is tapering off of the steroids he began taking before surgery. They also checked in with Dr. Asher, and he assured all of us that this kind of numbness is completely normal because of the (his word) "huge" tumor that was removed. The nerves that were compressed by the tumor are hopefully re-expanding, and swelling may be coming and going as his body adjusts to the steroid taper. As long as Ben isn't experiencing buckling in his limbs (which he hasn't been...thank goodness), the numbness isn't cause for concern.
Next up was physical and occupational therapy appointments. His physical therapy appointment focused mainly on his legs at this point. The physical therapist wanted to talk with Dr. Asher before starting any real work on Ben's neck...to make sure there are no restrictions she should know about. Ben's balance is a little bit off (which we assumed), and his hips are a bit weak. He has plenty of leg and hip exercises to do twice a day at home.
His occupational therapy appointment tested his grip and pinch strength as well as his general coordination with his hands. The therapist noted that Ben was using his whole arm to do movements that really should just require his hand and wrist. She gave him LOTS of homework to do--special "thera-putty" to practice with and lists of small movements to practice. He is supposed to sit and focus for 30 minutes a day on various activities to improve his hand strength and coordination.
At this point, he will continue both physical and occupational therapy appointments twice a week. The physical therapist mentioned that he could need therapy for up to two months or so. The occupational therapist wants to meet with him twice a week for now, and then begin meeting with him once per week after a couple of weeks.
These appointments were very positive, and we're so glad to know what Ben can be doing to regain his strength.
We will keep you posted!
Saturday, April 13, 2013
Progress
I realized I haven't been very specific about Ben's progress so far! I want to update you all on where he is now.
His walking and balancing has improved since he came home from the hospital. He is definitely steadier on his feet each day. He still has a lack of sensation in both his legs and his feet. They're not exactly totally numb, but they certainly aren't 100% normal. This lack of sensation makes it harder for him to walk with shoes on. His balance is worse because he can't feel the ground nearly as well with the shoes between his feet and the ground. But, he is spending time each day walking around with the shoes, and we are hopeful that the sensation in his legs and feet will get better and better.
Along those lines, he sometimes feels twitchy/tingling/indescribable sensations in his legs, especially at night. The numbness sometimes 'travels' as well--right now, he has numbness in his thighs and quads that he didn't have yesterday, but his lower legs/feet are feeling a little less numb. We assume that all of this is nerves/pathways re-working and re-connecting. While he was still in the hospital, the physical therapist mentioned that sensations like these would likely continue as the swelling in and around his spinal cord went down. She described his surgery as a 'trauma' to his spinal cord--a planned (and completely necessary!) trauma, but a trauma nonetheless.
His arms and hands don't have nearly the level of numbness as his legs, but his hands are very stiff and sore. Some of this is definitely from the (seems like) millions of IVs he had during and after the surgery. Both of hands are full of bruises and his wrists/arms are bruised up, too. As such, his fine motor skills aren't at 100% either, and at this point we're not sure how much to attribute to his spinal cord and how much to attribute to the bruising. Either way, it's a bit frustrating to Ben. He is practicing as much as possible with his hands--opening his own drinks, opening his pill bottles, doing some writing and typing, etc. We're assuming occupational therapy will help a lot with these actions.
His incision looks good, but his neck is also (understandably!) extremely stiff and sore. Until he starts physical therapy, he is being very careful with his neck movement. We are eager to see what kinds of exercises are safe for him to do so that he can regain some flexibility. We're also glad his sutures will be coming out soon so that we can better see his incision to keep an eye on it. Although they told us it was fine if the steri-strips fell off, none of them have yet. His pain levels are usually manageable, but the pain does get worse at night. His neck is the gauge we use for his activity levels--too much sitting upright or standing/walking causes neck pain pretty quickly.
Luckily, his lingering stomach issues have resolved, so he is much more comfortable. His attitude is quite positive, although I know he wishes he could get better even faster. We have to keep reminding him how far he's already come!
His walking and balancing has improved since he came home from the hospital. He is definitely steadier on his feet each day. He still has a lack of sensation in both his legs and his feet. They're not exactly totally numb, but they certainly aren't 100% normal. This lack of sensation makes it harder for him to walk with shoes on. His balance is worse because he can't feel the ground nearly as well with the shoes between his feet and the ground. But, he is spending time each day walking around with the shoes, and we are hopeful that the sensation in his legs and feet will get better and better.
Along those lines, he sometimes feels twitchy/tingling/indescribable sensations in his legs, especially at night. The numbness sometimes 'travels' as well--right now, he has numbness in his thighs and quads that he didn't have yesterday, but his lower legs/feet are feeling a little less numb. We assume that all of this is nerves/pathways re-working and re-connecting. While he was still in the hospital, the physical therapist mentioned that sensations like these would likely continue as the swelling in and around his spinal cord went down. She described his surgery as a 'trauma' to his spinal cord--a planned (and completely necessary!) trauma, but a trauma nonetheless.
His arms and hands don't have nearly the level of numbness as his legs, but his hands are very stiff and sore. Some of this is definitely from the (seems like) millions of IVs he had during and after the surgery. Both of hands are full of bruises and his wrists/arms are bruised up, too. As such, his fine motor skills aren't at 100% either, and at this point we're not sure how much to attribute to his spinal cord and how much to attribute to the bruising. Either way, it's a bit frustrating to Ben. He is practicing as much as possible with his hands--opening his own drinks, opening his pill bottles, doing some writing and typing, etc. We're assuming occupational therapy will help a lot with these actions.
His incision looks good, but his neck is also (understandably!) extremely stiff and sore. Until he starts physical therapy, he is being very careful with his neck movement. We are eager to see what kinds of exercises are safe for him to do so that he can regain some flexibility. We're also glad his sutures will be coming out soon so that we can better see his incision to keep an eye on it. Although they told us it was fine if the steri-strips fell off, none of them have yet. His pain levels are usually manageable, but the pain does get worse at night. His neck is the gauge we use for his activity levels--too much sitting upright or standing/walking causes neck pain pretty quickly.
Luckily, his lingering stomach issues have resolved, so he is much more comfortable. His attitude is quite positive, although I know he wishes he could get better even faster. We have to keep reminding him how far he's already come!
Friday, April 12, 2013
One week
Wow, it's hard to believe that Ben's surgery was one week ago today. One week ago, we were waiting at the hospital for Ben to be called back. Then we were waiting for him to be prepped in pre-op. Then we all went back to see him one more time before the surgery. Then I was walking down the hall beside his bed as they wheeled him back to surgery (he doesn't remember this part because they'd already given him a relaxer in his IV. :-) Then I completely lost it because seeing him wheeled back was AWFUL. And then we waited...
We are so very grateful that things have only gotten better and better since last Friday morning. We had an idea of how bad things could be after the surgery, but we really never even hoped that things would go as well as they have. From the moment we saw Ben in the ICU on Friday afternoon, we have felt so much relief and happiness at the success of this surgery.
We are thrilled with his progress so far, and we are looking forward to learning more about what he can do to continue this progress.
We would not have made it through the time before Ben's surgery (or this week since) without all of the love and support we've received. Thank you, thank you, thank you!
Here's to the weeks ahead! :-)
We are so very grateful that things have only gotten better and better since last Friday morning. We had an idea of how bad things could be after the surgery, but we really never even hoped that things would go as well as they have. From the moment we saw Ben in the ICU on Friday afternoon, we have felt so much relief and happiness at the success of this surgery.
We are thrilled with his progress so far, and we are looking forward to learning more about what he can do to continue this progress.
We would not have made it through the time before Ben's surgery (or this week since) without all of the love and support we've received. Thank you, thank you, thank you!
Here's to the weeks ahead! :-)
Thursday, April 11, 2013
Thursday update
Good morning!
We are settling (kind of) into a routine here at home, and it is going well! The biggest relief to me so far is that Ben is able to rest well...he sleeps most of the night, we both sometimes nap during the day, and he is still sleeping at this very moment! I know resting will help him heal and also help him feel better about his progress.
Since he can't be home alone (and we wouldn't want him to be anyway!), our days involve sticking around the apartment. Ben has been practicing his walking inside, and he's been practicing his fine motor skills throughout the day. He also is able to sit up for some of the day without it bothering his neck too much.
Yesterday, we took advantage of the beautiful weather and ventured outside together. Ben walked down our many stairs and around the parking lot of the apartment complex several times. This was one of his first times really walking while wearing shoes. Since he is still lacking some sensation in his legs/feet, he feels a lot more comfortable walking in his socks because he can feel the ground a little bit better. The barrier the shoes put between his feet and the ground makes him a little uneasy. I could sense his uneasiness and a little loss of balance when he first started walking around in the shoes, but he regained his balance and some confidence pretty quickly. The walk outside went great--he never lost his balance, and he made it back up the stairs with no problems either.
He has started tapering down with the steroids that he began taking right before the surgery. He has done remarkably well with his pain levels, although he did feel all of the results of moving around so much yesterday. His bandage from the hospital was removed because they recommended letting his incision be open to the air. He still has small mini-bandages (steri-strips) covering the stitches and incision itself. His incision is definitely longer than most of us realized it would be.
Ben's parents and sister have been here in the evenings and at night, which is a huge help. My parents are here now to keep us both company.
I'll close with a picture of Ben after our walk...
We are settling (kind of) into a routine here at home, and it is going well! The biggest relief to me so far is that Ben is able to rest well...he sleeps most of the night, we both sometimes nap during the day, and he is still sleeping at this very moment! I know resting will help him heal and also help him feel better about his progress.
Since he can't be home alone (and we wouldn't want him to be anyway!), our days involve sticking around the apartment. Ben has been practicing his walking inside, and he's been practicing his fine motor skills throughout the day. He also is able to sit up for some of the day without it bothering his neck too much.
Yesterday, we took advantage of the beautiful weather and ventured outside together. Ben walked down our many stairs and around the parking lot of the apartment complex several times. This was one of his first times really walking while wearing shoes. Since he is still lacking some sensation in his legs/feet, he feels a lot more comfortable walking in his socks because he can feel the ground a little bit better. The barrier the shoes put between his feet and the ground makes him a little uneasy. I could sense his uneasiness and a little loss of balance when he first started walking around in the shoes, but he regained his balance and some confidence pretty quickly. The walk outside went great--he never lost his balance, and he made it back up the stairs with no problems either.
He has started tapering down with the steroids that he began taking right before the surgery. He has done remarkably well with his pain levels, although he did feel all of the results of moving around so much yesterday. His bandage from the hospital was removed because they recommended letting his incision be open to the air. He still has small mini-bandages (steri-strips) covering the stitches and incision itself. His incision is definitely longer than most of us realized it would be.
Ben's parents and sister have been here in the evenings and at night, which is a huge help. My parents are here now to keep us both company.
I'll close with a picture of Ben after our walk...
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| I am definitely a proud wife! :-) |
Tuesday, April 9, 2013
What's Goin' On
Hello all,
I apologize for the lack of regular updates. Once Ben got out of the ICU, things got a little bit overwhelming. If I repeat myself in this post, please forgive me! I'm going to try to hit the highlights...
When Ben was released from the ICU on Sunday, we had no idea how much longer he might spend in the hospital or what the plan was for when he was released. He had a long night on Sunday night, and a busy day on Monday.
Although we met with the discharge nurse and learned about the plan for Ben to do outpatient therapy (instead of inpatient) on Monday, we were pretty convinced he would still be in the hospital for Monday night at least. We did know that everyone was waiting for a doctor to see/evaluate Ben and make a decision about discharging him. The doctor arrived to do this at about 4:30 on Monday afternoon. Since Dr. Asher was not available, we met with another doctor from his practice. The doctor looked at Ben's incision, tested a few of his motor functions, and asked Ben if he wanted to go home that day. Ben said yes! The rest of us were a little bit nervous about this prospect, but Ben was ready, and it was obvious that his doctor thought he was ready as well.
From there, it was only about an hour before we were on our way home. Ben got dressed, the nurse came by with all of the discharge notes, and we all asked our multiple questions about caring for Ben at home.
Ben arrived back home and had to immediately tackle the stairs. He had both of his parents to support him, and he took his time (of course), but he made it just fine. It had definitely been helpful to practice stairs with the physical therapist in the hospital that morning, so that we all knew what to expect. I think that practice also helped Ben feel more confident about his ability to function at home. He really handled the stairs remarkably well from the start!
So far, things have been good at home. Ben isn't supposed to lift, twist, or bend too much at this point, but he has been encouraged to walk and do as much as possible for himself to practice all those motor skills. He is still battling a few lingering stomach issues which is a bit frustrating. He did sleep well on his first night home, and he has napped some today which is reassuring. We all knew he would rest better here at home, and we are glad he is able to relax a little.
Ben can't be alone at home, and he certainly can't drive at this point. I am so grateful that I have this leave from work, and I am even more grateful that I am getting to spend it at home with Ben instead of at the hospital with him!
He will start his physical and occupational therapy this coming Monday at CMC-University. We are eager to see how the initial evaluation goes and what we're looking at for therapies moving forward. We will actually have a pretty busy day that day because it is the same day he will have his sutures removed.
We have had so much help from family and friends that I can't even begin to say thank yous without leaving someone out. Please know that we are very grateful for each and every gesture, visit, package, card, gift, phone call, text message, thought, and prayer.
I will certainly keep posting as Ben continues to heal. Maybe we have a picture of his awesome scar to look forward to?? :-)
I apologize for the lack of regular updates. Once Ben got out of the ICU, things got a little bit overwhelming. If I repeat myself in this post, please forgive me! I'm going to try to hit the highlights...
When Ben was released from the ICU on Sunday, we had no idea how much longer he might spend in the hospital or what the plan was for when he was released. He had a long night on Sunday night, and a busy day on Monday.
Although we met with the discharge nurse and learned about the plan for Ben to do outpatient therapy (instead of inpatient) on Monday, we were pretty convinced he would still be in the hospital for Monday night at least. We did know that everyone was waiting for a doctor to see/evaluate Ben and make a decision about discharging him. The doctor arrived to do this at about 4:30 on Monday afternoon. Since Dr. Asher was not available, we met with another doctor from his practice. The doctor looked at Ben's incision, tested a few of his motor functions, and asked Ben if he wanted to go home that day. Ben said yes! The rest of us were a little bit nervous about this prospect, but Ben was ready, and it was obvious that his doctor thought he was ready as well.
From there, it was only about an hour before we were on our way home. Ben got dressed, the nurse came by with all of the discharge notes, and we all asked our multiple questions about caring for Ben at home.
Ben arrived back home and had to immediately tackle the stairs. He had both of his parents to support him, and he took his time (of course), but he made it just fine. It had definitely been helpful to practice stairs with the physical therapist in the hospital that morning, so that we all knew what to expect. I think that practice also helped Ben feel more confident about his ability to function at home. He really handled the stairs remarkably well from the start!
So far, things have been good at home. Ben isn't supposed to lift, twist, or bend too much at this point, but he has been encouraged to walk and do as much as possible for himself to practice all those motor skills. He is still battling a few lingering stomach issues which is a bit frustrating. He did sleep well on his first night home, and he has napped some today which is reassuring. We all knew he would rest better here at home, and we are glad he is able to relax a little.
Ben can't be alone at home, and he certainly can't drive at this point. I am so grateful that I have this leave from work, and I am even more grateful that I am getting to spend it at home with Ben instead of at the hospital with him!
He will start his physical and occupational therapy this coming Monday at CMC-University. We are eager to see how the initial evaluation goes and what we're looking at for therapies moving forward. We will actually have a pretty busy day that day because it is the same day he will have his sutures removed.
We have had so much help from family and friends that I can't even begin to say thank yous without leaving someone out. Please know that we are very grateful for each and every gesture, visit, package, card, gift, phone call, text message, thought, and prayer.
I will certainly keep posting as Ben continues to heal. Maybe we have a picture of his awesome scar to look forward to?? :-)
Picture post (last day in hospital)
Here are some pictures from yesterday. I guess I need to do a new picture post soon now that we're home! :-)
Things are going well at home so far. I will post a more detailed update later.
Things are going well at home so far. I will post a more detailed update later.
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| Addie and Matt sent well-wishes from Denver! |
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| A get well balloon from the Carter ladies :-) |
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| Cards, cards, cards |
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| Cupcake from our favorite baker :-) |
Monday, April 8, 2013
No news is good news
Well, things are slow and steady around here, and we are certainly grateful.
Ben had a rough night with some stomach issues, so he didn't get much sleep. He is feeling much better today. Ben's mom spent last night with him, and his sister drove me home and stayed with me, all of which was a huge help and a relief.
When Katie and I got back this morning at about 8:30, there was a flurry of activity in Ben's room. We all got a little confused by everything going on. One nurse mentioned a possible discharge for Ben today, an occupational therapist came by, no one knew if physical therapy was stopping by again later, and no one was exactly clear on when Ben's doctor would come in and check on him.
Luckily, a lot of those questions have been answered throughout the day. The occupational therapist recommended outpatient occupational therapy for Ben. This is therapy that will help him gain back functions to use in everyday activities like caring for himself and eventually returning to work. It will focus on fine motor skills.
The physical therapist came by as well, and helped Ben practice walking, bending, and tackling the stairs. He did wonderfully....I was so impressed! The physical therapist also recommended outpatient therapy. She did say Ben should definitely not be home alone at this point, and that we had to make sure he would not be stubborn and try to walk anywhere alone once he did get home. She did share that to qualify for inpatient therapy, a patient needs to have pretty significant deficits in at least 2 areas. Since Ben is doing so well with the occupational side and the physical side, he wouldn't qualify for inpatient rehab at all. That is definitely a good thing!
The discharge nurse shared a few details about how things would work when we do leave the hospital. Ben will be able to do his outpatient therapy appointments at CMC-University, and the first appointments will be a week from today. She will give us notes and any of his prescriptions to take with us.
We also got to see one PA from Dr. Asher's office today, which was great. She gave us some details on Ben's follow up appointments and care, but she reiterated that another doctor should be coming by today with more details. She was the PA who had been in the office with us when we first learned about this diagnosis/surgery, and even though her specialty is brains (not spines), it was very reassuring to see and talk to someone who has been with us through this whole process.
While there was talk of discharging Ben today, that is looking less and less likely at this point. Ben still needs to see a doctor or PA to be officially discharged, and we have some questions about his incision, caring for it, other follow up steps, etc. We are also hoping to see or at least talk to the therapists one more time to get some idea of exercises Ben can do at home before he officially starts outpatient therapy.
I will update with any big news, but we are feeling good about Ben's progress and the next steps. The days have felt long so far, but I know how much longer they would feel if things were worse, so I am very grateful. :-)
Ben had a rough night with some stomach issues, so he didn't get much sleep. He is feeling much better today. Ben's mom spent last night with him, and his sister drove me home and stayed with me, all of which was a huge help and a relief.
When Katie and I got back this morning at about 8:30, there was a flurry of activity in Ben's room. We all got a little confused by everything going on. One nurse mentioned a possible discharge for Ben today, an occupational therapist came by, no one knew if physical therapy was stopping by again later, and no one was exactly clear on when Ben's doctor would come in and check on him.
Luckily, a lot of those questions have been answered throughout the day. The occupational therapist recommended outpatient occupational therapy for Ben. This is therapy that will help him gain back functions to use in everyday activities like caring for himself and eventually returning to work. It will focus on fine motor skills.
The physical therapist came by as well, and helped Ben practice walking, bending, and tackling the stairs. He did wonderfully....I was so impressed! The physical therapist also recommended outpatient therapy. She did say Ben should definitely not be home alone at this point, and that we had to make sure he would not be stubborn and try to walk anywhere alone once he did get home. She did share that to qualify for inpatient therapy, a patient needs to have pretty significant deficits in at least 2 areas. Since Ben is doing so well with the occupational side and the physical side, he wouldn't qualify for inpatient rehab at all. That is definitely a good thing!
The discharge nurse shared a few details about how things would work when we do leave the hospital. Ben will be able to do his outpatient therapy appointments at CMC-University, and the first appointments will be a week from today. She will give us notes and any of his prescriptions to take with us.
We also got to see one PA from Dr. Asher's office today, which was great. She gave us some details on Ben's follow up appointments and care, but she reiterated that another doctor should be coming by today with more details. She was the PA who had been in the office with us when we first learned about this diagnosis/surgery, and even though her specialty is brains (not spines), it was very reassuring to see and talk to someone who has been with us through this whole process.
While there was talk of discharging Ben today, that is looking less and less likely at this point. Ben still needs to see a doctor or PA to be officially discharged, and we have some questions about his incision, caring for it, other follow up steps, etc. We are also hoping to see or at least talk to the therapists one more time to get some idea of exercises Ben can do at home before he officially starts outpatient therapy.
I will update with any big news, but we are feeling good about Ben's progress and the next steps. The days have felt long so far, but I know how much longer they would feel if things were worse, so I am very grateful. :-)
Sunday, April 7, 2013
Sunday
Good afternoon!
We have had a good day today. Ben was able to sleep soundly for a few hours last night, which helped him feel a little better. I also slept last night at home (thanks to my sweet sister who drove me there and stayed with me!).
When I arrived back at the ICU at 8am, Ben was finishing breakfast. Soon thereafter, a doctor came by to check on his progress. The doctor reassured us that the MRI from last night looked good, and he reiterated that it looked like Dr. Asher had been able to perform a total resection of the tumor. We were all relieved to hear that things look good inside. :-) He also had Ben perform a few motions to see his ability, and he thought Ben was doing great!
The nurse started removing most of Ben's wires at this point so that he would be ready to go to a new room when one became available.
Our wonderful friends arrived to visit at around 10am, and as soon as we went back to see Ben again, they were ready to move him out of the ICU! Ben walked himself all the way across his ICU room to the bed waiting in the hallway without any assistance! The nurse helped him up, and spotted him as he walked, but Ben was able to make it on his own, and it was awesome!
He is now in what they call a 'step-down' unit. His vitals only have to checked every 4 hours (instead of monitored constantly...Ben is definitely glad that he doesn't have a blood pressure cuff going off every single hour on the hour!), and we are all able to visit him at once. It gets crowded, but in the best way. :-) He is able to get in and out of bed with our help, and the nurse said he is welcome to try walking the halls if he feels up to it. He has walked across the room several times this afternoon.
The pain in his neck and shoulders is still very bothersome, but we are hopeful it will continue to lessen. He has been eating more and more at each meal, which is good to see. I am hoping he will nap some this afternoon.
More updates to come!
Love,
Jesse
P.S. The picture is from this morning in the ICU. I was so happy to see him again!
We have had a good day today. Ben was able to sleep soundly for a few hours last night, which helped him feel a little better. I also slept last night at home (thanks to my sweet sister who drove me there and stayed with me!).
When I arrived back at the ICU at 8am, Ben was finishing breakfast. Soon thereafter, a doctor came by to check on his progress. The doctor reassured us that the MRI from last night looked good, and he reiterated that it looked like Dr. Asher had been able to perform a total resection of the tumor. We were all relieved to hear that things look good inside. :-) He also had Ben perform a few motions to see his ability, and he thought Ben was doing great!
The nurse started removing most of Ben's wires at this point so that he would be ready to go to a new room when one became available.
Our wonderful friends arrived to visit at around 10am, and as soon as we went back to see Ben again, they were ready to move him out of the ICU! Ben walked himself all the way across his ICU room to the bed waiting in the hallway without any assistance! The nurse helped him up, and spotted him as he walked, but Ben was able to make it on his own, and it was awesome!
He is now in what they call a 'step-down' unit. His vitals only have to checked every 4 hours (instead of monitored constantly...Ben is definitely glad that he doesn't have a blood pressure cuff going off every single hour on the hour!), and we are all able to visit him at once. It gets crowded, but in the best way. :-) He is able to get in and out of bed with our help, and the nurse said he is welcome to try walking the halls if he feels up to it. He has walked across the room several times this afternoon.
The pain in his neck and shoulders is still very bothersome, but we are hopeful it will continue to lessen. He has been eating more and more at each meal, which is good to see. I am hoping he will nap some this afternoon.
More updates to come!
Love,
Jesse
P.S. The picture is from this morning in the ICU. I was so happy to see him again!
Saturday, April 6, 2013
Saturday night update
Hi all,
Ben has had an interesting day. After lunch, he actually slept for a little while upright in the chair. He finally got moved back to the bed, but he remained restless and in some pain most of the afternoon. When we all got ready to leave this evening for quiet time, he was just eating dinner. He actually ate pretty well and seemed really tired. We were all very hopeful that he would actually get some real sleep during quiet time.
We think our hopes came true because when we arrived back this evening at 8pm, Ben was sleeping and pretty groggy when he did rouse himself a little.
Unfortunately, right around 9pm, the nurse came in to say it was time for an MRI. Apparently, this is totally standard procedure after any sort of brain or spinal surgery (which makes sense when you think about it), but we were caught by surprise because we didn't realize it would be coming, especially at this time of night. The nurse was great at reassuring us, and she did offer Ben some meds to keep him calm through the MRI itself. Thankfully, he accepted the meds.
He was gone from the room for about an hour, just like the nurse said he would be. She said he did great during the MRI and even managed to snooze through some of it! No news is good news as far as the MRI is concerned, and we haven't heard anything yet. Radiologists read the MRIs as they come through all night. If there was anything concerning, the nurse said we would probably know within an hour, and we're past that time frame now, so I am very hopeful that means everything is looking good.
I kissed Ben goodbye and headed home to sleep after he got back from the MRI. His dad is staying with him tonight, and I am looking forward to crawling into bed. Last I heard, he was resting comfortably and (of course) watching some of the Final Four.
Love to you all,
Jesse
Ben has had an interesting day. After lunch, he actually slept for a little while upright in the chair. He finally got moved back to the bed, but he remained restless and in some pain most of the afternoon. When we all got ready to leave this evening for quiet time, he was just eating dinner. He actually ate pretty well and seemed really tired. We were all very hopeful that he would actually get some real sleep during quiet time.
We think our hopes came true because when we arrived back this evening at 8pm, Ben was sleeping and pretty groggy when he did rouse himself a little.
Unfortunately, right around 9pm, the nurse came in to say it was time for an MRI. Apparently, this is totally standard procedure after any sort of brain or spinal surgery (which makes sense when you think about it), but we were caught by surprise because we didn't realize it would be coming, especially at this time of night. The nurse was great at reassuring us, and she did offer Ben some meds to keep him calm through the MRI itself. Thankfully, he accepted the meds.
He was gone from the room for about an hour, just like the nurse said he would be. She said he did great during the MRI and even managed to snooze through some of it! No news is good news as far as the MRI is concerned, and we haven't heard anything yet. Radiologists read the MRIs as they come through all night. If there was anything concerning, the nurse said we would probably know within an hour, and we're past that time frame now, so I am very hopeful that means everything is looking good.
I kissed Ben goodbye and headed home to sleep after he got back from the MRI. His dad is staying with him tonight, and I am looking forward to crawling into bed. Last I heard, he was resting comfortably and (of course) watching some of the Final Four.
Love to you all,
Jesse
Saturday, Saturday
Hi friends.
Ben and I had a not-so-restful night in the ICU. Luckily, he was not in a lot of pain, just restless and unable to sleep. Overall, I would say it was a good night, but it was hard to say goodbye when visiting hours ended at 6am.
I headed home at that point because I couldn't imagine doing anything but getting at least a little sleep. Ben definitely wanted people with him again as soon as visiting hours started at 8am (understandably!). His family and my parents were there to greet him while I slept like a log for several hours.
While I was gone, Ben got to get out of bed and sit in a chair. A picture is shown below. He even stood and basically shuffled himself over with the help of a nurse. I was so excited to see his thumbs up in the photo. He also got to eat and enjoy breakfast.
Other big news of the day so far, Ben's new glasses arrived (thanks to Deborah and Katie for calling about them and going to pick them up!). He ordered them right before the surgery since his only pair of glasses was 10 years old. The next step will be to get a photo of him in the new glasses! :-)
I got back right around lunchtime, and Ben was still sitting upright. He is definitely tired and in some pain. He just finished lunch, and he wants to get back in bed soon to hopefully rest/sleep. He needs to rest and let the pain meds do their work.
The nurses today said that today would probably be the worst day. His pain seems worse (but still controllable, thank goodness). He has some swelling at the surgery site that they are keeping an eye on. He will spend tonight in the ICU again.
We are so thankful that the ICU allows visitors. Two of us are allowed to be in the room with him at one time, and one person can stay with him overnight. The only times we can't be in the room are between 6am and 8am and 6pm and 8pm. It is so comforting to us to be able to spend this time with him, and we hope it is helping him, too! :-)
Ben and I had a not-so-restful night in the ICU. Luckily, he was not in a lot of pain, just restless and unable to sleep. Overall, I would say it was a good night, but it was hard to say goodbye when visiting hours ended at 6am.
I headed home at that point because I couldn't imagine doing anything but getting at least a little sleep. Ben definitely wanted people with him again as soon as visiting hours started at 8am (understandably!). His family and my parents were there to greet him while I slept like a log for several hours.
While I was gone, Ben got to get out of bed and sit in a chair. A picture is shown below. He even stood and basically shuffled himself over with the help of a nurse. I was so excited to see his thumbs up in the photo. He also got to eat and enjoy breakfast.
Other big news of the day so far, Ben's new glasses arrived (thanks to Deborah and Katie for calling about them and going to pick them up!). He ordered them right before the surgery since his only pair of glasses was 10 years old. The next step will be to get a photo of him in the new glasses! :-)
I got back right around lunchtime, and Ben was still sitting upright. He is definitely tired and in some pain. He just finished lunch, and he wants to get back in bed soon to hopefully rest/sleep. He needs to rest and let the pain meds do their work.
The nurses today said that today would probably be the worst day. His pain seems worse (but still controllable, thank goodness). He has some swelling at the surgery site that they are keeping an eye on. He will spend tonight in the ICU again.
We are so thankful that the ICU allows visitors. Two of us are allowed to be in the room with him at one time, and one person can stay with him overnight. The only times we can't be in the room are between 6am and 8am and 6pm and 8pm. It is so comforting to us to be able to spend this time with him, and we hope it is helping him, too! :-)
Friday, April 5, 2013
Our latest news
Good evening!
Thank you all for your love today. I know Ben felt all of the prayers and support throughout this crazy process.
The news so far is really good, but we do know things can change at any point. We are cautiously optimistic about everything so far.
At around 2:30pm today, the surgery was over and the surgeon came out to talk to us. That is when we learned everything posted in the last post. We were relieved that the news was good, but still very anxious about the unknowns ahead. At that point, we thought it would be 2 hours or more before Ben would leave recovery and head to the ICU.
We actually got called down at about 3:45pm to learn that Ben had already been moved to the ICU. We immediately headed down to visit. When Deborah and I went back, we were thrilled to see Ben awake, lucid, talking, and moving all of his extremities (hands, feet, fingers, and toes!).
Y'all, that was most the relief I have felt since his MRI on March 19th. It was SO good to see him in such good shape.
He has pain in his neck where the incision is, and they said that the pain there would be at its worst tonight and tomorrow. The surgeon did say the pain there would be pretty bad because of all of the muscles that had to be cut through for the surgery. They are giving him medicines to help with this (of course).
Ben is resting in the ICU tonight. He has several IVs and monitors, but he doesn't have to be immobilized or anything like that. When I last saw him, he was watching basketball and asking us for an exact timeline of the events of the day. That's our Ben!
I am so glad that this ICU allows one visitor to stay overnight. I will be spending the night here in Ben's room.
They are thinking that Ben will be out of the ICU sometime tomorrow. They are also planning to assess him more thoroughly tomorrow to see how he functions with balance, standing, etc (I think).
We could not be more grateful for all of you. Our families have been with us every step of the way, not just today, but since the diagnosis. Our friends and co-workers really could not be any more supportive. We do know that we are blessed beyond what we deserve, and I hope you all know how very grateful we are.
The journey continues....
Love,
Jesse
Thank you all for your love today. I know Ben felt all of the prayers and support throughout this crazy process.
The news so far is really good, but we do know things can change at any point. We are cautiously optimistic about everything so far.
At around 2:30pm today, the surgery was over and the surgeon came out to talk to us. That is when we learned everything posted in the last post. We were relieved that the news was good, but still very anxious about the unknowns ahead. At that point, we thought it would be 2 hours or more before Ben would leave recovery and head to the ICU.
We actually got called down at about 3:45pm to learn that Ben had already been moved to the ICU. We immediately headed down to visit. When Deborah and I went back, we were thrilled to see Ben awake, lucid, talking, and moving all of his extremities (hands, feet, fingers, and toes!).
Y'all, that was most the relief I have felt since his MRI on March 19th. It was SO good to see him in such good shape.
He has pain in his neck where the incision is, and they said that the pain there would be at its worst tonight and tomorrow. The surgeon did say the pain there would be pretty bad because of all of the muscles that had to be cut through for the surgery. They are giving him medicines to help with this (of course).
Ben is resting in the ICU tonight. He has several IVs and monitors, but he doesn't have to be immobilized or anything like that. When I last saw him, he was watching basketball and asking us for an exact timeline of the events of the day. That's our Ben!
I am so glad that this ICU allows one visitor to stay overnight. I will be spending the night here in Ben's room.
They are thinking that Ben will be out of the ICU sometime tomorrow. They are also planning to assess him more thoroughly tomorrow to see how he functions with balance, standing, etc (I think).
We could not be more grateful for all of you. Our families have been with us every step of the way, not just today, but since the diagnosis. Our friends and co-workers really could not be any more supportive. We do know that we are blessed beyond what we deserve, and I hope you all know how very grateful we are.
The journey continues....
Love,
Jesse
Ben is out of surgery
Here is the news so far:
1. Tumor was benign
2. Tumor was removed successfully
3. There were cysts on Ben's spinal cord that the surgeon hopes were being fed by the tumor. We are hopeful that these cysts will drain on their own now that the tumor has been removed, but if they don't, they could require surgery to drain them in the future.
4. We still don't know how much rehab Ben will need, but we should find out soon.
5. Ben will be in the ICU tonight for sure.
6. Best of all, we get to see him again in a couple of hours.
Thank you all for your love, support, and prayers. I will update again soon.
1. Tumor was benign
2. Tumor was removed successfully
3. There were cysts on Ben's spinal cord that the surgeon hopes were being fed by the tumor. We are hopeful that these cysts will drain on their own now that the tumor has been removed, but if they don't, they could require surgery to drain them in the future.
4. We still don't know how much rehab Ben will need, but we should find out soon.
5. Ben will be in the ICU tonight for sure.
6. Best of all, we get to see him again in a couple of hours.
Thank you all for your love, support, and prayers. I will update again soon.
Ben is in surgery
We should be receiving updates every hour. I will try to post a thorough update after the surgery is over.
Love,
Jesse
Love,
Jesse
Thursday, April 4, 2013
Top 5 Ways...
...to Know that You're Stressed About your Husband's Upcoming Neurosurgery
4. You leave your house without your cell phone. You don't notice for hours. You repeat 2 days in a row.
3. You consider a day with hives just on your face, neck, and hands a good day...
2. When you're cleaning out the fridge, you consider drinking the wine you find. That is months old. At 10AM.
And the number 1 way to know that you're stressed about your husband's upcoming neurosurgery....
1. Your husband is having neurosurgery.
Love to you all! :-)
Wednesday, April 3, 2013
How we got here...
So, why do we even need this blog? Well, it's a little complicated (of course), and not all good, but certainly not all bad.
Ben had some health symptoms beginning in Fall 2012 that continued to nag at him and bother him through the months. These symptoms included numbness and tingling in his left leg and foot. They also included a scary episode where he gradually lost his ability to swallow solids and most liquids. That particular adventure concluded with an ER visit on Christmas day, an endscopy on December 26th, a follow-up with a general practitioner, a barium swallow study, and no real answers as to what had caused the swallowing issue.
Luckily, Ben and his doctors persisted. Ben visited two neurologists this spring, and had an MRI on March 19th. That's when the real problem was discovered. A tumor on Ben's cervical spine (that's the upper part of his spine, close to the skull/brain). In fact, the tumor is actually on Ben's spinal cord and probably actually INSIDE his spinal cord. It is not thought to be cancerous, but it definitely has to be removed.
The surgery to remove the tumor will happen on Friday, April 5th at 9:30am. It is supposed to take around 3.5 hours. Everything that happens after the surgery for Ben's recovery depends on exactly what happens and what they learn during the surgery.
Here is what we know:
Ben will go straight to the ICU after his surgery. He will stay there probably 2 days.
Ben will spend another 5 or so days in the hospital after his initial ICU stay.
Ben will likely spend time at an in-patient rehab immediately following his regular hospital stay.
None of this is set in stone, but all of it is likely. When surgery is done on the spinal cord, doctors have told us to expect a loss of neurological function for Ben afterwards. The level of that loss depends on what happens during the surgery, but common issues are: loss of ability to swallow, balance issues, and trouble walking. There are two pieces of good news regarding this, though. One, Ben's neurosurgeon said it was amazing that Ben is still so neurologically intact right now, considering the location and size of the tumor. Two, the level of neurological function regained after surgery is usually about the same as the level of neurological function the patient has before surgery. In that regard, Ben is great shape! We are hopeful that this is good news for his healing.
Of course, we are anxious about the surgery itself and about the upcoming recovery period. But, we are so thankful for our amazing family and friends. We are thankful for our understanding employers, our health insurance, and our ability to take leave from work. We are thankful that Ben's issues are treatable, and we are thankful for the amazing healthcare providers he has.
My plan and hope is to update this blog with all of the details that are so up-in-the-air right now. We greatly appreciate all of your thoughts and prayers.
Ben had some health symptoms beginning in Fall 2012 that continued to nag at him and bother him through the months. These symptoms included numbness and tingling in his left leg and foot. They also included a scary episode where he gradually lost his ability to swallow solids and most liquids. That particular adventure concluded with an ER visit on Christmas day, an endscopy on December 26th, a follow-up with a general practitioner, a barium swallow study, and no real answers as to what had caused the swallowing issue.
Luckily, Ben and his doctors persisted. Ben visited two neurologists this spring, and had an MRI on March 19th. That's when the real problem was discovered. A tumor on Ben's cervical spine (that's the upper part of his spine, close to the skull/brain). In fact, the tumor is actually on Ben's spinal cord and probably actually INSIDE his spinal cord. It is not thought to be cancerous, but it definitely has to be removed.
The surgery to remove the tumor will happen on Friday, April 5th at 9:30am. It is supposed to take around 3.5 hours. Everything that happens after the surgery for Ben's recovery depends on exactly what happens and what they learn during the surgery.
Here is what we know:
Ben will go straight to the ICU after his surgery. He will stay there probably 2 days.
Ben will spend another 5 or so days in the hospital after his initial ICU stay.
Ben will likely spend time at an in-patient rehab immediately following his regular hospital stay.
None of this is set in stone, but all of it is likely. When surgery is done on the spinal cord, doctors have told us to expect a loss of neurological function for Ben afterwards. The level of that loss depends on what happens during the surgery, but common issues are: loss of ability to swallow, balance issues, and trouble walking. There are two pieces of good news regarding this, though. One, Ben's neurosurgeon said it was amazing that Ben is still so neurologically intact right now, considering the location and size of the tumor. Two, the level of neurological function regained after surgery is usually about the same as the level of neurological function the patient has before surgery. In that regard, Ben is great shape! We are hopeful that this is good news for his healing.
Of course, we are anxious about the surgery itself and about the upcoming recovery period. But, we are so thankful for our amazing family and friends. We are thankful for our understanding employers, our health insurance, and our ability to take leave from work. We are thankful that Ben's issues are treatable, and we are thankful for the amazing healthcare providers he has.
My plan and hope is to update this blog with all of the details that are so up-in-the-air right now. We greatly appreciate all of your thoughts and prayers.
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