We had thought that he was going to go to Murray today, but it turns out that he would likely need to start radiation before he would be released. They can do the radiation up there, but it was unsure if he would be able to transfer back down to here once he was out of the rehab center. The thought of driving up to Murray daily for over a month to do radiation didn't sound all that exciting. Also our surgeon, who we have loved having watch over Mark, wouldn't be kept in the loop as easily if we were there. So, the doc decided that he would prefer to fight a bit longer to get us into the rehab down here, and if that didn't pan out then keep Mark in the hospital for a few more days getting the therapy they do here in the hospital and then send him straight home with out patient or home therapy (or both). Then we can do the radiation down here, the doc will be able to be kept in the loop as to what's going on, we won't have to drive nearly as far to get Mark the treatment he needs when the time comes.
So, long story short - we're still here. At the hospital. We might still be here for a few more days.
I wish I could say that the process hasn't been stressful and annoying, but it has been. I feel like we got caught in the middle of a political battle between the administrations of the hospital and the rehab center. Somehow the Chief Medial Officer is even getting involved. I hear there's going to be a meeting tomorrow all about us (well, at least partly about us - I hope we're not the only, or even main, focus). Drama! Why can't everyone just get along and figure out what's going to happen and agree with each other?
Oh well... What can you do?
In other news, Mark's new favorite place to walk is outside. This evening - after it stopped raining a bit - we grabbed a wheel chair and took him outside. Once out there, he wanted to start walking. He went up one sidewalk pushing the wheel chair for stability and then we turned around to come back. He offered me a ride, so I took him up on it. There were three other adults with us who were able to be a spotter for him in case his left side gave out, so I felt safe getting in the chair and leaving him to push me. He pushed me the whole way back down the sidewalk (even did mostly good on the dips and ups of the driveways in the sidewalk), back into the hospital through a door further away from where we came out, through the halls to the elevator, and then back to his room. Mark did awesome! He was really tired by the end of it, but it was his farthest walk yet, and he was pushing extra weight! His leg is improving quickly.
He had some occupational therapy today as well. I missed it because I had gone out to lunch with my mom to Black Sheep (awesome local restaurant if you're ever in the area! Highly recommend it!). He got to try manipulating screws and some nuts and washers, crumpling up a paper towel and throwing it into the trash (with only his left hand), and other types of stuff. He got his first piece of equipment to work with - one of those stretchy bands. They also left us a list of things that we can do with him to work on regaining control of his left hand and arm.
I think the exercises were good for him, but he was also discouraged to find out just how little he can do with his left hand. All his life he has been highly capable physically, and in his mind, he still is. To come to the realization that he is unable to do things he has taken for granted his whole life has been a bit hard on him. He is motivated to get it back - and it will come back, it will just take practice and time - but he has found that just how far he really needs to go is a difficult pill to swallow.
The good news is that I am a jerk. I push him to use his left leg, arm, hand and fingers whenever possible. Every now and then he gets a little bit annoyed with me (sometimes more than a little be annoyed - mostly he's fine and appreciates the reminder), but he listens and does it and he's getting better. While I think that acute rehab would be better for him than coming straight home, I also believe that, with his desire to improve and my ability to push him just a tiny bit too far, once we have the training and skills to know what to do, when and how hard to push him, we can make it work with the little bit of outside therapy he'd be getting.
Only time will tell, I guess. There is still a lot of stuff up in the air. We hope to know something at some point, but lately it seems as if that might be asking just a little bit too much... :)
Wednesday, May 8, 2013
Pictures! At Last!
I have taken a few pictures, but I have a 'helpful imp' who has been getting into my drawers and night stand for a few months now. I know right were my card reader used to be, but this 'helpful imp' has managed to find a new home for some of my stuff. I have looked and looked, but I can't find the card reader!
Thankfully, others have also been taking pictures and they shared some with me! So, here are some pictures of the whole process so far.
Mark getting wheeled down the hall to head for surgery
In the elevator on the way down to surgery. Can you see those white dots on his head. They were a lot like slightly fat life savers that helped the surgeons somehow during surgery.
Saying goodbye for the last time before his head would never look the same again. :)
Totally worth it, by the way!
Post surgery. He was fast asleep! The bandages were on his head for a few days.
Some of the equipment hooked up to Mark while he was in the ICU. That's just some of it. They really monitor you in there.
Warning for any faint of heart - this next picture has something close to open wounds
Our first look at the incision.
Mark giving me my first hug from him post surgery! They claim it was part of his physical therapy, but I have a feeling it was good for more than just him arms.
Shelly hopping into bed with Mark in his new room (no longer in ICU)
Again, faint of heart warning - this one has a very visible and up close shot of the head (the one after also has a visible shot of the scar, but it's farther away and less obvious)
Annie giving Mark a kiss on his forehead. We like to have her give us kisses. Somehow we have managed to convince her that when she gets hurt, all she has to do to feel better is give us a kiss. (I think it was a misunderstanding at some point along the way, but there is no way I'm trying to fix that one!) Sometimes one isn't enough, so we started having her give us kisses on each cheek, on the forehead, nose and chin. By the end of that, she usually feels better. It's become a bit of a ritual for bed time too.
Emily giving Daddy his snuggle. She has been saying most mornings that she needs to go visit her daddy because 'he misses my hugs and kisses.' She is a sweet girl!
Emily and Jason watching their daddy eat some breakfast.
Emily cuddling with her daddy. She does love to come see him!
We talked them both into cuddling for a picture.
Shelly all dressed up and ready for church! She has enjoyed getting the chance to see her daddy as well.
Annie is a great snuggle-er (is that a word?). Ever since Mark found out that he forgot who she was, he has needed an Annie hug. I'm convinced that the kids visiting has been some of the best therapy for him.
Here we are watching the awesome physical therapist (we like this one the best - there is a surprising difference in what the different ones do and how hard and differently they work him).
Mark's mom, Annie, Me, and Shelly.
Mark giving Annie a hug part way through his walk at the end of the hall.
He surprised us all by picking her up! I'm sure they have both missed that!
Later in the day, on a different walk, Mark is trying to chase me down for a hug.
Heading back to the room. He had to chase me the whole way, and even managed to catch me a few times - I might have let him... :)
Annie running up to see her 'daddy! daddy!'
Mark walked out to the waiting room to visit with family who had come to see him and eat dinner. There were too many of us to fit in his room, so we used the lobby/waiting room area.
Mark sporting the awesome hat the nurse made for him!
He looks a bit like a tele tubby (at least that's what I think it reminds me of - I've never actually watched that show, so I might be mis-remembering)
Here's the crowd that came to visit! (and who weren't sitting on the floor by the elevator, running around or taking the picture)
Discharge in the Morning!
There hasn't really been much to say in the last day or two. We still don't know what's going on with treatment - still waiting on the pathology reports. The samples were sent out for testing - meaning the lab here wanted to send them to a lab that specifically does brain testing. It will be a while before those come back. So, depending on what those say he will either start radiation or both radiation and chemo and he will start either sooner or a bit later. There are various clinical trials that he can get into, but again which one to find for him depends on what the pathology says. Really, it's all still up in the air...
Mark continues to make improvements with recovery. Until tonight, we have been unsure where he was going to go post discharge (an acute rehab live-in center, home with outpatient care, home with home health visits...) it all depended on how well he was doing. But we found out late in the afternoon Tuesday that he has been accepted to an Acute Rehab facility in Murray, and he will be discharged Wednesday morning and I will drive him up there. It's little a bit farther away than we were hoping - about a half hour drive - but it will be good for him to get some intense rehab. He has been doing well enough that I don't think he will be there long, which will be good. Mark has been anxious to get back home.
Other than that, there really hasn't been much new to report.
Mark continues to make improvements with recovery. Until tonight, we have been unsure where he was going to go post discharge (an acute rehab live-in center, home with outpatient care, home with home health visits...) it all depended on how well he was doing. But we found out late in the afternoon Tuesday that he has been accepted to an Acute Rehab facility in Murray, and he will be discharged Wednesday morning and I will drive him up there. It's little a bit farther away than we were hoping - about a half hour drive - but it will be good for him to get some intense rehab. He has been doing well enough that I don't think he will be there long, which will be good. Mark has been anxious to get back home.
Other than that, there really hasn't been much new to report.
Monday, May 6, 2013
Sunday
Today was another good day! There was not the huge jump in improvement that there was yesterday, but just knowing that there is a light at the end of the tunnel was more than enough for today to be awesome! And that wasn't even all that was good about today.
Mark started off the morning getting to snuggle with Emily and Jason. Emily would not let me leave the house this morning without taking her. She was sobbing all over the house because she couldn't find her shoes. I tried to talk her into coming later, but she would have none of it. I finally decided to bring her and asked Jason and Shelly if either of them wanted to come too. Jason jumped on the idea. Shelly opted to be the one to stay home and tell the others where we had gone (I'm also pretty sure she wasn't excited about getting dressed). Becca and Bryan came by later to pick up the kids (and the van with the carseats - it's been a car juggling act at times). Katie came by later to let Shelly and Annie see their Dad. They were still around for the next part of the morning.
Next on the agenda was physical therapy - which Mark rocked! He did all the bed stuff with his arms and legs. Shelly got to help be his 'goal' to hit. She would hold her hand out and Mark had to give her 5, or hold her thumb down in thumb wars. She loved being involved! Then he went for a walk. He went to the end of the hallway. On his way down my mom heard him coming and brought Annie over from the waiting room to say hi. Annie got up on the chairs at the end of the hall so Mark could give her a hug. Once he got to her, he let go of the walker and picked her up! I'm sure they have both missed that.
Not long after physical therapy was done there was a gathering in his room. He and his family have been close with a man who was the Stake President while Mark's dad was the Bishop. He is now in a Temple Presidency nearby. Mark had asked for a blessing from him, and his dad set it up. After all who were there were gathered, Mark was given an amazing blessing. It was awesome, and I don't think there was a dry eye in the room.
After some contemplation time, in came Dr R. Mark got up and used his walker to come out to the nurses station and see the newest MRI results. They got 95% of it and what is left is no bigger than his thumb, and only about 5mm thick at that. Considering it used to be the size of a fist - in 3D- the size of a super thin thumb is great news! The doctor was almost giddy with the results. Mark's recovery is surpassing the vast majority of the patients that he does this kind of surgery with (to be a little bit fair, he's young and healthy while not all of his patients are). The doctor was so pleased, saying 'we came pretty close to crippling him, but we didn't and this weakness, this will come back.' All with a rather good sized smile on his face. (I'm pretty sure that by 'come back' he meant that the strength will return, and not the weakness, but we all knew what he meant even if technically he said it a bit backwards.) I have decided that I LOVE when doctors are excited by the results of their efforts. It almost never means bad things for the patients.
Physical therapy for the afternoon went well too. We had seen a few visitors (Cindy Taylor from our old ward - love her, and Megan & Adalia - super close friend and her daughter) and were just finishing up with them when the therapist came in. They did all the arm/leg stuff in bed and then took a walk (this is becoming a habit - but a good one! :) ) About half way down the hall they set the walker aside and he walked on his own the rest of the way down the hall. I walked backwards as a target that kept moving, and when he caught me he got to give me a hug (and kiss - the physical therapist prescribed lots of those - apparently they are good for developing facial muscles. Neither Mark nor I complained too much about that one :) ). Mark did start to get a bit tired towards the end of the walk and started to more noticeably limp on his left leg, but he made it back to his room without using the walker again. Is it wrong to be proud of him with those kind of accomplishments? I hope not, because I sure was! Well, I was beyond thrilled at the very least. Also, rather excited.
I'm not going to lie. There have been times in the last few days where the future looked so dim and dark that it was almost hard to breathe, it was so suffocating. I did my best to just hold his hand and walk around in the dark with him until we found a way out. These new changes and improvements have been an answer to prayers (not just mine - not at all just mine - but those of everyone around us and even everyone far away from us who have been praying as well - I'm sure that those have been the difference in all of this - Thank You!). I can now see the light at the end of the tunnel. I know that the end is still rather far away, and that it will take a lot of work and determination to get there, and there will be bumps in the road in between here and there, but I can see light! For now, that is enough. That is so much more than enough!
After physical therapy Mark's mom, my mom and I were all in Mark's room, chatting quietly while he rested. We were talking about the awesome Cinco De Mayo dinner Becca was planning on making for us. Mark, out of nowhere, during the first slight lull in the conversation jumps in with 'Did Karen really ask if we wanted regular rolls or cinnamon rolls? What kind of answer was she expecting?' Karen is Bryan's mom, and she wanted to help in some way, so she volunteered to make rolls to bring over and gave Bryan a choice between regular and cinnamon. Cinnamon was the obvious choice. This had not been talked about for hours, and was only related to the conversation because they both involved food coming that evening for us to eat. Mark's comments were awesome and hilarious! And I thought it was a good sign of his short term memory getting better (I haven't really noticed it being off, to tell the truth, but the speech therapist said it was, so I'll believe her since she's the one testing for it, and I'm just along for the ride) and his associations are getting stronger & quicker - and my favorite part - his sense of humor is returning as he is feeling better. :)
The rest of the evening was spent with us trying to get Mark to rest. The physical therapist recommended that we try to limit visitors for the night because he was becoming mentally fatigued, and mental fatigue would slow down, and could even undo, some physical progress. We're pretty sure most of his fatigue came from being woken up every hour last night, but if they think that limiting visitors will help, then we'll give that a try for the evening. Sort of...
Becca, Bryan and the rest of the family showed up with an awesome dinner! Mark wanted to join the party, but there was no way everyone would fit in his room. We got permission for him to come out and join us in the waiting room. They brought us a wheel chair, but Mark opted to walk out with his walker. On his way out, the kids came and found him and run up to say hi. Annie was the last to see him. She was in Becca's arms and Becca set her down and Annie ran at full not-yet-two-year-old speed down the hall yelling 'Daddy, Daddy!' It was pretty adorable. I was actually a bit worried that she would try to run into him (something she used to always do), so I was grateful when she stopped just sort of actually knocking him over. Mark had fun getting to sit and talk with (well, really mostly listen to) people, in a normal chair and not in a hospital bed. On the way out William had requested a hat of some kind to put on Mark's head because we had some in our party who did not do well at the sight of blood (or staples, for that matter). The nurse made one out of some sort of stretchy fabric and red coban tape (athletic tape that sticks to itself - or the kind they put on your arm when you donate blood - at least I think that's what it's called...). It was pretty awesome looking (or funny looking - one of those...). Mark was a trooper and wore it anyway.
By the end of dinner Mark was tired and worn out. I was glad we had brought the wheel chair. He asked for a ride back to his room, hopped in bed and promptly fell asleep. Earlier in the day he had requested that I stay the night with him. He claims he doesn't rest as well when I'm not here. Since we've shared a room pretty much every night for the last 8 1/2 years, I can guess he's become accustomed to having me nearby. So, I have done my best to keep the nurses at bay while he sleeps. They have mostly been pretty good about letting him rest. He fell asleep around 7 and so far there has been only two that I haven't been able to prevent, but for the first one she was careful to try to let him rest through it. The second was a bit more intense with a neuro check and vitals, but they said they could let him sleep until 3 when they needed to do the next check. Since it's 11:30, I'm going to consider this a win for sleeping tonight. That's about as good as it gets in a hospital - and much better than he got last night! Yea for making a mini-fuss about letting him sleep! (I was actually super nice about it, just commented (whispered actually) that he was tired and could use some rest - they took the hint well).
Mark started off the morning getting to snuggle with Emily and Jason. Emily would not let me leave the house this morning without taking her. She was sobbing all over the house because she couldn't find her shoes. I tried to talk her into coming later, but she would have none of it. I finally decided to bring her and asked Jason and Shelly if either of them wanted to come too. Jason jumped on the idea. Shelly opted to be the one to stay home and tell the others where we had gone (I'm also pretty sure she wasn't excited about getting dressed). Becca and Bryan came by later to pick up the kids (and the van with the carseats - it's been a car juggling act at times). Katie came by later to let Shelly and Annie see their Dad. They were still around for the next part of the morning.
Next on the agenda was physical therapy - which Mark rocked! He did all the bed stuff with his arms and legs. Shelly got to help be his 'goal' to hit. She would hold her hand out and Mark had to give her 5, or hold her thumb down in thumb wars. She loved being involved! Then he went for a walk. He went to the end of the hallway. On his way down my mom heard him coming and brought Annie over from the waiting room to say hi. Annie got up on the chairs at the end of the hall so Mark could give her a hug. Once he got to her, he let go of the walker and picked her up! I'm sure they have both missed that.
Not long after physical therapy was done there was a gathering in his room. He and his family have been close with a man who was the Stake President while Mark's dad was the Bishop. He is now in a Temple Presidency nearby. Mark had asked for a blessing from him, and his dad set it up. After all who were there were gathered, Mark was given an amazing blessing. It was awesome, and I don't think there was a dry eye in the room.
After some contemplation time, in came Dr R. Mark got up and used his walker to come out to the nurses station and see the newest MRI results. They got 95% of it and what is left is no bigger than his thumb, and only about 5mm thick at that. Considering it used to be the size of a fist - in 3D- the size of a super thin thumb is great news! The doctor was almost giddy with the results. Mark's recovery is surpassing the vast majority of the patients that he does this kind of surgery with (to be a little bit fair, he's young and healthy while not all of his patients are). The doctor was so pleased, saying 'we came pretty close to crippling him, but we didn't and this weakness, this will come back.' All with a rather good sized smile on his face. (I'm pretty sure that by 'come back' he meant that the strength will return, and not the weakness, but we all knew what he meant even if technically he said it a bit backwards.) I have decided that I LOVE when doctors are excited by the results of their efforts. It almost never means bad things for the patients.
Physical therapy for the afternoon went well too. We had seen a few visitors (Cindy Taylor from our old ward - love her, and Megan & Adalia - super close friend and her daughter) and were just finishing up with them when the therapist came in. They did all the arm/leg stuff in bed and then took a walk (this is becoming a habit - but a good one! :) ) About half way down the hall they set the walker aside and he walked on his own the rest of the way down the hall. I walked backwards as a target that kept moving, and when he caught me he got to give me a hug (and kiss - the physical therapist prescribed lots of those - apparently they are good for developing facial muscles. Neither Mark nor I complained too much about that one :) ). Mark did start to get a bit tired towards the end of the walk and started to more noticeably limp on his left leg, but he made it back to his room without using the walker again. Is it wrong to be proud of him with those kind of accomplishments? I hope not, because I sure was! Well, I was beyond thrilled at the very least. Also, rather excited.
I'm not going to lie. There have been times in the last few days where the future looked so dim and dark that it was almost hard to breathe, it was so suffocating. I did my best to just hold his hand and walk around in the dark with him until we found a way out. These new changes and improvements have been an answer to prayers (not just mine - not at all just mine - but those of everyone around us and even everyone far away from us who have been praying as well - I'm sure that those have been the difference in all of this - Thank You!). I can now see the light at the end of the tunnel. I know that the end is still rather far away, and that it will take a lot of work and determination to get there, and there will be bumps in the road in between here and there, but I can see light! For now, that is enough. That is so much more than enough!
After physical therapy Mark's mom, my mom and I were all in Mark's room, chatting quietly while he rested. We were talking about the awesome Cinco De Mayo dinner Becca was planning on making for us. Mark, out of nowhere, during the first slight lull in the conversation jumps in with 'Did Karen really ask if we wanted regular rolls or cinnamon rolls? What kind of answer was she expecting?' Karen is Bryan's mom, and she wanted to help in some way, so she volunteered to make rolls to bring over and gave Bryan a choice between regular and cinnamon. Cinnamon was the obvious choice. This had not been talked about for hours, and was only related to the conversation because they both involved food coming that evening for us to eat. Mark's comments were awesome and hilarious! And I thought it was a good sign of his short term memory getting better (I haven't really noticed it being off, to tell the truth, but the speech therapist said it was, so I'll believe her since she's the one testing for it, and I'm just along for the ride) and his associations are getting stronger & quicker - and my favorite part - his sense of humor is returning as he is feeling better. :)
The rest of the evening was spent with us trying to get Mark to rest. The physical therapist recommended that we try to limit visitors for the night because he was becoming mentally fatigued, and mental fatigue would slow down, and could even undo, some physical progress. We're pretty sure most of his fatigue came from being woken up every hour last night, but if they think that limiting visitors will help, then we'll give that a try for the evening. Sort of...
Becca, Bryan and the rest of the family showed up with an awesome dinner! Mark wanted to join the party, but there was no way everyone would fit in his room. We got permission for him to come out and join us in the waiting room. They brought us a wheel chair, but Mark opted to walk out with his walker. On his way out, the kids came and found him and run up to say hi. Annie was the last to see him. She was in Becca's arms and Becca set her down and Annie ran at full not-yet-two-year-old speed down the hall yelling 'Daddy, Daddy!' It was pretty adorable. I was actually a bit worried that she would try to run into him (something she used to always do), so I was grateful when she stopped just sort of actually knocking him over. Mark had fun getting to sit and talk with (well, really mostly listen to) people, in a normal chair and not in a hospital bed. On the way out William had requested a hat of some kind to put on Mark's head because we had some in our party who did not do well at the sight of blood (or staples, for that matter). The nurse made one out of some sort of stretchy fabric and red coban tape (athletic tape that sticks to itself - or the kind they put on your arm when you donate blood - at least I think that's what it's called...). It was pretty awesome looking (or funny looking - one of those...). Mark was a trooper and wore it anyway.
By the end of dinner Mark was tired and worn out. I was glad we had brought the wheel chair. He asked for a ride back to his room, hopped in bed and promptly fell asleep. Earlier in the day he had requested that I stay the night with him. He claims he doesn't rest as well when I'm not here. Since we've shared a room pretty much every night for the last 8 1/2 years, I can guess he's become accustomed to having me nearby. So, I have done my best to keep the nurses at bay while he sleeps. They have mostly been pretty good about letting him rest. He fell asleep around 7 and so far there has been only two that I haven't been able to prevent, but for the first one she was careful to try to let him rest through it. The second was a bit more intense with a neuro check and vitals, but they said they could let him sleep until 3 when they needed to do the next check. Since it's 11:30, I'm going to consider this a win for sleeping tonight. That's about as good as it gets in a hospital - and much better than he got last night! Yea for making a mini-fuss about letting him sleep! (I was actually super nice about it, just commented (whispered actually) that he was tired and could use some rest - they took the hint well).
Saturday, May 4, 2013
I'm Cheating...
I took a day off from blogging yesterday. I was so emotionally drained and tired that I slept instead. That was probably a good decision. Fortunately I have an awesome mother who has been taking notes and writing updates, so I can pass on info without having to do too much more thinking. This is me, totally cheating, and copying her e-mails into my blog so people know what's going on...
This one is from Thursday night:
I stayed with Mark last night, when Rachel and Elaine went home to get some real sleep! He slept deeply until 2am. He was hungry and was able to eat jello - 2 containers - of somewhat real food :-). Before that he had only had apple juice and he really wanted more food! He was able to hold the jello container in his left hand and feed himself with his right - all while lying down and not really able to see what he was spooning. Mark also suggested that Rachel should change her cell phone ring to, "Mommy, mommy....mommy...". Katie's has "Randy, Randy, Rannnddyyy", but Mark wanted Jason or Emily to record, "Mommy" for Rachel.
Mark wanted to change positions, but with the brain fluid drain that he has in his head, he can't really move his head much and not allowed to lie on his side. But the nurses came in and rolled him a bit so that they could put 2 pillows under his right side and give him some relief.
Mark wanted to call Rachel at 2:50am and I suggested that he might want to wait and let her sleep a little longer - he said that he could wait for a little bit. I got online a few minutes later and saw that Rachel was online. I texted her to make sure she was awake, she was and happy to talk with Mark. They chatted for a few minutes and then Mark was happy to go back to sleep.
They came to get him at 3:35 for a CT scan. They do them during the night so that they are ready for the doctors when they do their rounds in the morning. They wheeled him out in his bed and brought him back about 20 minutes later. He was able to get back into a deep sleep until they woke him up at about 6 - during shift change when they check all his vitals. They started asking him questions to check his mental conditions. The first question was, "What day is it?" I thought real hard and I didn't know the answer! Neither did Mark. Next question, "What is the date?" I only knew that because they had made a big deal of yesterday being May Day. Mark did know what year it was though.
Then she asked Mark some interesting questions - Do you use a hammer to pound a nail?
Mark was able to smile a real, 2 sided smile this morning, the left side of his face was working again. He was able to squeeze with his right hand and slightly move his left side, or at least feel when they were touching.
This morning he had a clear liquid diet and had chicken broth and yogurt - followed up with french toast and scrambled eggs, after the doctor cleared him for real food. Mark was able to move his left hand/arm up onto his stomach by himself to hold the yogurt container - way to go Mark!!!!
Mark started physical therapy this morning, trying to build up his strength in his left side - they came twice, once in the morning and once in the afternoon. He walked a few steps to the wall and back again to the bed. Not very far, but at least he's moving! In the afternoon he was able to walk across the room twice!
When I got back to the hospital in the afternoon, after my nap, most of the people were in the waiting area instead of in Mark's room. Rachel was with Mark and they were letting them have some time together. Katie went in after a while to check on them and both of them were asleep - so of course she took a picture!!!
At 6pm food magically appeared in the waiting room for those of us at the hospital - there must be pixie dust here, because it happens every night. There was a steady stream of people waiting to visit Mark this evening - aunts, uncles, cousins, grandma.... even the kids got to visit him. Nate, Doug and Cindy came with the kids, so it was a regular party in the waiting area!!! Only a few went in at t time so as not to overwhelm Mark - but he was rather tired by the end of the visits.
Everyone has left and I'm now with Mark for the night. He has had a pain pill (which he hasn't needed many of) and hopefully will get some good sleep.
And here is one from Friday morning:
After an evening filled with many visitors; everyone left by 9:30, Mark had been given a pain pill and was settled down for the night, Rachel and Schofields left and I took up watch in Mark's room. I stayed awake quite nicely until midnight, when I gave up and went to sleep. I slept until 2, sitting up in a chair - I knew the fact that I can fall asleep anywhere would come in handy sometime!
The brain drain fluid is much clearer today than it was last night - a good sign I'm assuming. They removed the blood pressure line that was measuring it internally & consistently and he now only has a cuff that measures it once an hour.
Mark woke up at 3:30 and wanted to use my phone to call his mom. He was easily talked into waiting until later in the morning. He also is looking forward to seeing the kids again today! Then we had a fun time chatting about all kinds of things; BYU football, history and our trip to DC, the Single's regional conference, a movie Mark had seen at work..... It was fun to have some time with him.
While we were chatting I noticed that his foot was moving - and it looked like his left foot. So I felt through the blankets to find his right foot and sure enough, Mark was moving his left toes and foot! I congratulated him and got a big smile! So I asked if he could move his left arm. He used his right arm to lift it up and then held it up by itself! Progress is happening :-).
Rachel and I talked about bringing Emily and Annie to visit Mark in the morning while the other kids were at school. During the day there aren't so many visitors and Mark would LOVE to see the kids and have them snuggle with him. Mark really liked that idea. Then we can bring all the kids to visit later in the day when the school kids are home. I think it would do Mark good.
At 5am Mark said that he was hungry, but the food service didn't start until 6:30. I told him that I would be delighted to go to the 24 hour cafe on the bottom floor and get him something. He asked for pancakes and eggs. So after telling him not to go anywhere, I left him to find him some food. Well, when I got to the 24 hour cafe, I found it wasn't really a 24 hour cafe - it had closed at 2am. So I got in the car and drove 2 blocks to McDonalds to get some food for him. I bought a pancakes, eggs, muffin, sausage meal and drove back to the hospital. When I got back to the room, Mark was still here, but sound asleep! So I did what any normal person would do, ate the food and hoped that he wouldn't wake up until 6:30 :-). It is 6:20 and he is stirring, so I might be okay with having eaten his food!
Another item that we learned yesterday was that after Mark leaves the ICU, he will spend 2-3 days in the regular part of the hospital and then he will go to a re-hab center - there is one in this hospital - for another 3-10 days to have physical therapy to strength his left side, before going home. We haven't heard anything about when he will be starting radiation or chemo. The CT scan that was taken yesterday morning for a baseline of post-surgery looked good the doctor said.
Well, shift change will be happening and others will start to arrive soon, so I had better send this off before I head home to sleep.
And here is Saturday afternoon's update:
Yesterday Mark had his brain drain tube removed, his IV drip removed, the catheter removed, bandages on his wound removed.... he is really improving and impressing the doctors! But..... because the catheter was removed, Mark would be using either a urinal in bed or the toilet through the night - and he didn't really want his mother-in-law being the one staying the night with him that night :-). So LaMont, his dad, stayed with him and I got 10 hours of sleep :-)!!!
With the bandages removed we are able to see his scar. I pointed out that it was too bad that they couldn't have done it in the shape of "BYU". Rachel said that it looked like a "U" - which certainly wasn't acceptable. Then we realized that it also looked like a "C" from the right angle - C for Cougars, we liked that!
There are MANY staples in Mark's head - 31 to be exact, which is how old Mark is :-). He is feeling much better. He has done 2 rounds of physical therapy today, moving his arms / legs, walking around the ICU floor on his own power with a walker.... a FAR cry from when I had to move his arm for him to hold the jello!
Mark was moved out of the ICU back to the 4th floor this afternoon - in a wheelchair instead of a bed - and all of the rest of the wires were removed, he only has a blood pressure cuff left. Rachel just said that he is trying to stand up by himself and he will probably drive the nurses crazy on this floor!!!
Elaine learned that for Mark to qualify to go to the re-hab center he needed to be strong enough to take 3 hours of physical therapy, twice a day. Mark has decreased short term memory and his visual / spacial have been affected. The doctor had to get really close to those nerve areas during the surgery - but everything should return to normal when the swelling goes down.
Rachel and I were in the room while Mark was doing the physical therapy this afternoon and the look on Mark's face was just delightful as he was able to do more and more. He loved being challenged and pushed -his smile could have lit a small town. He said that he wanted to know when the walker races were being held because he planned on winning!!! His fast progress is encouraging us all!
The doctors were impressed with what he can do already, but warned about the 'porpoise' affect, little jumps up and then small downs..... over and over. The doctor said that if he continues on recovering quickly, they might keep Mark in the regular hospital a day or two longer and then send him home - by passing the re-hab part!
Mark passed, with flying colors, the mental/math challenges they gave him - but was surprised that the visual/spacial ones were hard. He was asked to draw a clock and put the numbers on it and he found that difficult to do - though he could answer what is 100 minus 7, what is 93 minus 7.
Mark is having an MRI right now so that they can double check how things look like in there. They were working through a rather small hole - though the incision is larger - and he want to make sure he didn't miss something that might have been hiding. They learned that the best time to do that is within 3 days of surgery. If they wait for a week or two, the brain starts to heal and reform and the MRI is less useful.
Here is a run down of what is happening at the Provo house: Becca and Bryan arrive about right now in SLC and will leave on Tuesday afternoon. William and Danielle are here and I think are leaving on Monday. Katie is leaving on Sunday evening, finishing up the school year as an IA, packing, tying up loose ends in Cedar and will move up Memorial Day weekend. Cindy says she is available to stay for 3 weeks, until Katie returns. I'm staying at least another week - we'll see how Mark is doing, what the biopsy shows, how Rachel and the kids are doing ..... and go from there.
Today was probably the best day ever! It took me a while to get to the hospital. Apparently there was a marathon in town today (turns out I've missed much of the news the last few days, and time has gotten away from me - maybe I would have known that if I had been paying any sort of attention...), and the route the runners took pretty much cut off my access to the hospital. From the canyon to the lake was covered in runners and the hospital and the house were on opposite sides of the route... My brother and his wife were heading our way from the other side of the 'runner blockade' and it took them a full hour sitting at one intersection to get across the street. So, I waited until I was fairly sure the beginning of the route would be mostly cleared out (who needs an hour sitting in a car with nothing to do but think? Not me, that's for sure), and then headed on a rather round-a-bout way of getting here. Turns out I missed rather a lot of stuff in those few short hours.
I missed physical therapy where he was able to walk with just a walker (and a spotter). He went out into the hall and back! His left foot/leg is working again! And he had to use his left hand to hold onto the walker - so improvement all around!
I missed speech therapy. I'm guessing that the speech therapy that he would have would be different from the kind Jason is getting. His pronunciation is fine. I'm thinking all the questions he had to answer (from Mom's updates) are from the speech therapist - but I didn't actually check that...
I came in right when the first doctor was making his rounds, and got to hear the tail end of that conversation. The doc was impressed at his improvements and said he was doing really well.
Poor Mark was getting hungry by that point and wanted lunch. His sister brought him some soup his Uncle Jim made just for him. He was finally about to get some rest when he realized he needed to use the restroom. Can I just tell you that was the best part of the day for me at that point (since I had missed actually watching any of the movement in the beginning of the day). I realize that Mark wanting to go to the bathroom doesn't (and probably shouldn't by any reasonable standard) really sound like the kind of thing that should get someone excited. The awesome part was watching him stand up - almost completely by himself - and then walk to the back part of the room to use the toilet. He walked like an old man - a bit slowly and sort of shuffling - but he walked! By himself! Without someone needing to move his left foot for him! And then he walked back to bed - all by himself! The aid who had come in to help get him up had left and it was just his regular nurse (a tiny little thing who could only barely have caught him if something went wrong) there keeping an eye on him. It was AWESOME! I almost cried at how exciting it was!
Then, just when he was finally about to get some sleep, in came the physical therapists. I LOVED watching him while he was working with them. He was so happy! He was laughing and joking with the guys and smiling the whole time. And! And! He was able to do all the stuff they asked him to do! His left side was a bit weaker and slower than the right, but he could move his left side!! Almost the same as his right! Yeah, it was pretty awesome, but the BEST part was when, at the end of his walk in the hall, the therapists had him stand on his own and give me a huge hug! He also snuck in a kiss... :) It was a good moment.
His other doctor came by just as Mark was walking out into the hall to go for a walk. The doc was super impressed with his progression! He actually seemed a bit pleased with himself for stopping at just the right point in the brain - I agreed with him wholeheartedly! The doctor also ordered an MRI for today (if there was a tech available - or tomorrow at the latest - Monday would be too late). He wanted to see how much was left. The CT looked like they had gotten most of it, but the doctor wanted to make sure they didn't miss a part that was tucked up underneath where they couldn't see. Depending on the size of what's left in there (there IS some left in there - he just isn't certain as to the size of it) he will start radiation in 2-3 weeks. If the pieces are smaller then they can wait a bit longer to let the incision heal before starting treatment. If the pieces are bigger, they are going to want to get at the stuff sooner.
And the order to move him out of ICU and to a regular room came in the middle of therapy, so they moved him upstairs right after that. Just after he got settled he realized he needed to use the restroom. He finished and was finally resting and snoring gently for about 5 minutes when the nurse came in to take him down to his MRI... He got back from that and not 10 minutes later my side of the family started showing up for visits. Most of them live out of town, and they all started showing up this weekend, so it's the first time he's really had a chance to visit with them. Our kids were part of the party, and they had more fun walking (well, running really - but I'm pretty sure that's not allowed in a hospital, so I'm going to pretend they were walking quietly...) up and down the hall between Mark's room and the chairs in the waiting room at the other end of the hall. His current room is a straight shot from the elevator, so the kids were always in view of Grandma and Grandpa (and Cindy who was NOT A FAN of the exposed staples in Mark's head - she was a trooper for even coming in the room, even though she stayed by the door and made sure to stay clear away of any possible view of Mark's head).
He finally asked everyone to leave so he could use the restroom, and right after that his dinner came. He is one tired guy! JB was with him while he was eating and she helped him get comfortable so he could sleep (I had gone out to say bye to my family while he was in the restroom, and while I was out food came so I stayed, ate and chatted for a bit). He asked to stay that way (asleep). I went in to get my bag, left him a note and headed home.
I confess that the last few days have been rather discouraging. Today, none of that came back. Today was all progress. I'm not oblivious to the fact that there will be bad days yet to come, but there is no way I am going to let some unknown future set backs ruin the awesomeness that was today!
This one is from Thursday night:
I stayed with Mark last night, when Rachel and Elaine went home to get some real sleep! He slept deeply until 2am. He was hungry and was able to eat jello - 2 containers - of somewhat real food :-). Before that he had only had apple juice and he really wanted more food! He was able to hold the jello container in his left hand and feed himself with his right - all while lying down and not really able to see what he was spooning. Mark also suggested that Rachel should change her cell phone ring to, "Mommy, mommy....mommy...". Katie's has "Randy, Randy, Rannnddyyy", but Mark wanted Jason or Emily to record, "Mommy" for Rachel.
Mark wanted to change positions, but with the brain fluid drain that he has in his head, he can't really move his head much and not allowed to lie on his side. But the nurses came in and rolled him a bit so that they could put 2 pillows under his right side and give him some relief.
Mark wanted to call Rachel at 2:50am and I suggested that he might want to wait and let her sleep a little longer - he said that he could wait for a little bit. I got online a few minutes later and saw that Rachel was online. I texted her to make sure she was awake, she was and happy to talk with Mark. They chatted for a few minutes and then Mark was happy to go back to sleep.
They came to get him at 3:35 for a CT scan. They do them during the night so that they are ready for the doctors when they do their rounds in the morning. They wheeled him out in his bed and brought him back about 20 minutes later. He was able to get back into a deep sleep until they woke him up at about 6 - during shift change when they check all his vitals. They started asking him questions to check his mental conditions. The first question was, "What day is it?" I thought real hard and I didn't know the answer! Neither did Mark. Next question, "What is the date?" I only knew that because they had made a big deal of yesterday being May Day. Mark did know what year it was though.
Then she asked Mark some interesting questions - Do you use a hammer to pound a nail?
Mark was able to smile a real, 2 sided smile this morning, the left side of his face was working again. He was able to squeeze with his right hand and slightly move his left side, or at least feel when they were touching.
This morning he had a clear liquid diet and had chicken broth and yogurt - followed up with french toast and scrambled eggs, after the doctor cleared him for real food. Mark was able to move his left hand/arm up onto his stomach by himself to hold the yogurt container - way to go Mark!!!!
Mark started physical therapy this morning, trying to build up his strength in his left side - they came twice, once in the morning and once in the afternoon. He walked a few steps to the wall and back again to the bed. Not very far, but at least he's moving! In the afternoon he was able to walk across the room twice!
When I got back to the hospital in the afternoon, after my nap, most of the people were in the waiting area instead of in Mark's room. Rachel was with Mark and they were letting them have some time together. Katie went in after a while to check on them and both of them were asleep - so of course she took a picture!!!
At 6pm food magically appeared in the waiting room for those of us at the hospital - there must be pixie dust here, because it happens every night. There was a steady stream of people waiting to visit Mark this evening - aunts, uncles, cousins, grandma.... even the kids got to visit him. Nate, Doug and Cindy came with the kids, so it was a regular party in the waiting area!!! Only a few went in at t time so as not to overwhelm Mark - but he was rather tired by the end of the visits.
Everyone has left and I'm now with Mark for the night. He has had a pain pill (which he hasn't needed many of) and hopefully will get some good sleep.
And here is one from Friday morning:
After an evening filled with many visitors; everyone left by 9:30, Mark had been given a pain pill and was settled down for the night, Rachel and Schofields left and I took up watch in Mark's room. I stayed awake quite nicely until midnight, when I gave up and went to sleep. I slept until 2, sitting up in a chair - I knew the fact that I can fall asleep anywhere would come in handy sometime!
The brain drain fluid is much clearer today than it was last night - a good sign I'm assuming. They removed the blood pressure line that was measuring it internally & consistently and he now only has a cuff that measures it once an hour.
Mark woke up at 3:30 and wanted to use my phone to call his mom. He was easily talked into waiting until later in the morning. He also is looking forward to seeing the kids again today! Then we had a fun time chatting about all kinds of things; BYU football, history and our trip to DC, the Single's regional conference, a movie Mark had seen at work..... It was fun to have some time with him.
While we were chatting I noticed that his foot was moving - and it looked like his left foot. So I felt through the blankets to find his right foot and sure enough, Mark was moving his left toes and foot! I congratulated him and got a big smile! So I asked if he could move his left arm. He used his right arm to lift it up and then held it up by itself! Progress is happening :-).
Rachel and I talked about bringing Emily and Annie to visit Mark in the morning while the other kids were at school. During the day there aren't so many visitors and Mark would LOVE to see the kids and have them snuggle with him. Mark really liked that idea. Then we can bring all the kids to visit later in the day when the school kids are home. I think it would do Mark good.
At 5am Mark said that he was hungry, but the food service didn't start until 6:30. I told him that I would be delighted to go to the 24 hour cafe on the bottom floor and get him something. He asked for pancakes and eggs. So after telling him not to go anywhere, I left him to find him some food. Well, when I got to the 24 hour cafe, I found it wasn't really a 24 hour cafe - it had closed at 2am. So I got in the car and drove 2 blocks to McDonalds to get some food for him. I bought a pancakes, eggs, muffin, sausage meal and drove back to the hospital. When I got back to the room, Mark was still here, but sound asleep! So I did what any normal person would do, ate the food and hoped that he wouldn't wake up until 6:30 :-). It is 6:20 and he is stirring, so I might be okay with having eaten his food!
Another item that we learned yesterday was that after Mark leaves the ICU, he will spend 2-3 days in the regular part of the hospital and then he will go to a re-hab center - there is one in this hospital - for another 3-10 days to have physical therapy to strength his left side, before going home. We haven't heard anything about when he will be starting radiation or chemo. The CT scan that was taken yesterday morning for a baseline of post-surgery looked good the doctor said.
Well, shift change will be happening and others will start to arrive soon, so I had better send this off before I head home to sleep.
And here is Saturday afternoon's update:
Yesterday Mark had his brain drain tube removed, his IV drip removed, the catheter removed, bandages on his wound removed.... he is really improving and impressing the doctors! But..... because the catheter was removed, Mark would be using either a urinal in bed or the toilet through the night - and he didn't really want his mother-in-law being the one staying the night with him that night :-). So LaMont, his dad, stayed with him and I got 10 hours of sleep :-)!!!
With the bandages removed we are able to see his scar. I pointed out that it was too bad that they couldn't have done it in the shape of "BYU". Rachel said that it looked like a "U" - which certainly wasn't acceptable. Then we realized that it also looked like a "C" from the right angle - C for Cougars, we liked that!
There are MANY staples in Mark's head - 31 to be exact, which is how old Mark is :-). He is feeling much better. He has done 2 rounds of physical therapy today, moving his arms / legs, walking around the ICU floor on his own power with a walker.... a FAR cry from when I had to move his arm for him to hold the jello!
Mark was moved out of the ICU back to the 4th floor this afternoon - in a wheelchair instead of a bed - and all of the rest of the wires were removed, he only has a blood pressure cuff left. Rachel just said that he is trying to stand up by himself and he will probably drive the nurses crazy on this floor!!!
Elaine learned that for Mark to qualify to go to the re-hab center he needed to be strong enough to take 3 hours of physical therapy, twice a day. Mark has decreased short term memory and his visual / spacial have been affected. The doctor had to get really close to those nerve areas during the surgery - but everything should return to normal when the swelling goes down.
Rachel and I were in the room while Mark was doing the physical therapy this afternoon and the look on Mark's face was just delightful as he was able to do more and more. He loved being challenged and pushed -his smile could have lit a small town. He said that he wanted to know when the walker races were being held because he planned on winning!!! His fast progress is encouraging us all!
The doctors were impressed with what he can do already, but warned about the 'porpoise' affect, little jumps up and then small downs..... over and over. The doctor said that if he continues on recovering quickly, they might keep Mark in the regular hospital a day or two longer and then send him home - by passing the re-hab part!
Mark passed, with flying colors, the mental/math challenges they gave him - but was surprised that the visual/spacial ones were hard. He was asked to draw a clock and put the numbers on it and he found that difficult to do - though he could answer what is 100 minus 7, what is 93 minus 7.
Mark is having an MRI right now so that they can double check how things look like in there. They were working through a rather small hole - though the incision is larger - and he want to make sure he didn't miss something that might have been hiding. They learned that the best time to do that is within 3 days of surgery. If they wait for a week or two, the brain starts to heal and reform and the MRI is less useful.
Here is a run down of what is happening at the Provo house: Becca and Bryan arrive about right now in SLC and will leave on Tuesday afternoon. William and Danielle are here and I think are leaving on Monday. Katie is leaving on Sunday evening, finishing up the school year as an IA, packing, tying up loose ends in Cedar and will move up Memorial Day weekend. Cindy says she is available to stay for 3 weeks, until Katie returns. I'm staying at least another week - we'll see how Mark is doing, what the biopsy shows, how Rachel and the kids are doing ..... and go from there.
Today was probably the best day ever! It took me a while to get to the hospital. Apparently there was a marathon in town today (turns out I've missed much of the news the last few days, and time has gotten away from me - maybe I would have known that if I had been paying any sort of attention...), and the route the runners took pretty much cut off my access to the hospital. From the canyon to the lake was covered in runners and the hospital and the house were on opposite sides of the route... My brother and his wife were heading our way from the other side of the 'runner blockade' and it took them a full hour sitting at one intersection to get across the street. So, I waited until I was fairly sure the beginning of the route would be mostly cleared out (who needs an hour sitting in a car with nothing to do but think? Not me, that's for sure), and then headed on a rather round-a-bout way of getting here. Turns out I missed rather a lot of stuff in those few short hours.
I missed physical therapy where he was able to walk with just a walker (and a spotter). He went out into the hall and back! His left foot/leg is working again! And he had to use his left hand to hold onto the walker - so improvement all around!
I missed speech therapy. I'm guessing that the speech therapy that he would have would be different from the kind Jason is getting. His pronunciation is fine. I'm thinking all the questions he had to answer (from Mom's updates) are from the speech therapist - but I didn't actually check that...
I came in right when the first doctor was making his rounds, and got to hear the tail end of that conversation. The doc was impressed at his improvements and said he was doing really well.
Poor Mark was getting hungry by that point and wanted lunch. His sister brought him some soup his Uncle Jim made just for him. He was finally about to get some rest when he realized he needed to use the restroom. Can I just tell you that was the best part of the day for me at that point (since I had missed actually watching any of the movement in the beginning of the day). I realize that Mark wanting to go to the bathroom doesn't (and probably shouldn't by any reasonable standard) really sound like the kind of thing that should get someone excited. The awesome part was watching him stand up - almost completely by himself - and then walk to the back part of the room to use the toilet. He walked like an old man - a bit slowly and sort of shuffling - but he walked! By himself! Without someone needing to move his left foot for him! And then he walked back to bed - all by himself! The aid who had come in to help get him up had left and it was just his regular nurse (a tiny little thing who could only barely have caught him if something went wrong) there keeping an eye on him. It was AWESOME! I almost cried at how exciting it was!
Then, just when he was finally about to get some sleep, in came the physical therapists. I LOVED watching him while he was working with them. He was so happy! He was laughing and joking with the guys and smiling the whole time. And! And! He was able to do all the stuff they asked him to do! His left side was a bit weaker and slower than the right, but he could move his left side!! Almost the same as his right! Yeah, it was pretty awesome, but the BEST part was when, at the end of his walk in the hall, the therapists had him stand on his own and give me a huge hug! He also snuck in a kiss... :) It was a good moment.
His other doctor came by just as Mark was walking out into the hall to go for a walk. The doc was super impressed with his progression! He actually seemed a bit pleased with himself for stopping at just the right point in the brain - I agreed with him wholeheartedly! The doctor also ordered an MRI for today (if there was a tech available - or tomorrow at the latest - Monday would be too late). He wanted to see how much was left. The CT looked like they had gotten most of it, but the doctor wanted to make sure they didn't miss a part that was tucked up underneath where they couldn't see. Depending on the size of what's left in there (there IS some left in there - he just isn't certain as to the size of it) he will start radiation in 2-3 weeks. If the pieces are smaller then they can wait a bit longer to let the incision heal before starting treatment. If the pieces are bigger, they are going to want to get at the stuff sooner.
And the order to move him out of ICU and to a regular room came in the middle of therapy, so they moved him upstairs right after that. Just after he got settled he realized he needed to use the restroom. He finished and was finally resting and snoring gently for about 5 minutes when the nurse came in to take him down to his MRI... He got back from that and not 10 minutes later my side of the family started showing up for visits. Most of them live out of town, and they all started showing up this weekend, so it's the first time he's really had a chance to visit with them. Our kids were part of the party, and they had more fun walking (well, running really - but I'm pretty sure that's not allowed in a hospital, so I'm going to pretend they were walking quietly...) up and down the hall between Mark's room and the chairs in the waiting room at the other end of the hall. His current room is a straight shot from the elevator, so the kids were always in view of Grandma and Grandpa (and Cindy who was NOT A FAN of the exposed staples in Mark's head - she was a trooper for even coming in the room, even though she stayed by the door and made sure to stay clear away of any possible view of Mark's head).
He finally asked everyone to leave so he could use the restroom, and right after that his dinner came. He is one tired guy! JB was with him while he was eating and she helped him get comfortable so he could sleep (I had gone out to say bye to my family while he was in the restroom, and while I was out food came so I stayed, ate and chatted for a bit). He asked to stay that way (asleep). I went in to get my bag, left him a note and headed home.
I confess that the last few days have been rather discouraging. Today, none of that came back. Today was all progress. I'm not oblivious to the fact that there will be bad days yet to come, but there is no way I am going to let some unknown future set backs ruin the awesomeness that was today!
Friday, May 3, 2013
First Full Day in the ICU
I had my first decent night of sleep in a few days last night. That was a blessing! I had more energy to be helpful, which is good because Mark still needs a bit of help doing some basic things right now. I was able to be more cheerful with Mark and better able to have somewhat coherent conversations with visitors (I'm not convinced that I have been able to say much more than 'thank you for coming' for a while now). I am also now super proficient at hand holding. Mark says that the best part of recovery is getting to hold my hand. So that's pretty much what I do, all day. I sit next to him and hold his hand. And I smile at him. He likes to just look at me (which I consider a bit of an odd thing to do, but he says he enjoys it, so I let him). I always feel a bit bad when it's time for me to eat. Some times I can do that with one left hand, but mostly I'm not that good, so I have to let go. I usually only get a few minutes before his hand is reaching out for mine again. I eat in 2 minute intervals. It's a talent I'm working on. :)
But getting sleep has had a few negative side effects as well. For one, I stayed home to visit with the kids while they were getting ready for school (that was actually a good thing - I think the kids needed a bit of time with their mom) and because of that I missed being there while his doctors were doing their rounds and the first round of physical therapy, so any info I have from that is second hand. Also, with more sleep and time to think, I've been able to actually process some of this, and I haven't been quite as able to keep myself together as I could before. I was pretty good at being a complete non-thinking zombie and still putting on and keeping on a cheerful(ish at times) face for Mark. Once my level of functioning increased, I have had a bit more of a roller-coaster experience. I have much higher highs, and am able to find actual enjoyment in some of this new and different experience, but I still hit the zombie-like phase. The problem is that I can tell the difference now, and some of the reality of what is going on is sneaking it's way into the my thoughts and keeping a cheerful face on is harder in those moments. I have tried to keep under control so Mark doesn't worry any more than he already is - recovering from major brain surgery is enough of a chore without having to also worry about me and how I'm doing - but I haven't always succeeded. I have always managed to get back under control fairly quickly though (at least when he's watching me).
Mark really is doing well for what he's been through. Pretty much all of the visitors have told him that. I think he's catching on though. Tonight when he heard some family say that to him, his response was 'I'm going to take that to mean that I'm actually looking pretty rough, but that I have a reason too.' I guess that pretty much sums it all up.
His left side is still really weak. A few hours after surgery he was able to lift his left arm above his head and slowly hold up two fingers. He could hold his left leg up. He was even able to use his left leg rather well as he walked to the toilet (a good 20 feet). I think that walk, and then a tiny bit of a wait to get back to bed took a bit of a toll on him (that and the swelling in his brain has had time to increase a bit now). He decided to do all of this at shift change. The nurse was more than awesome, but as it becoming apparent that Mark was going to be a while still on the toilet, the nurse asked me if it was ok if he did a few last minute shift change stuff while I stayed nearby. We only waited about 5 minutes, but Mark was got weaker and needed much more help getting back to bed than he did to get to the toilet. Today he can move his left arm up just enough to get it onto his stomach to hold a dish for eating, but sometimes needs help to do even that and he's having a hard time wiggling his left toes. By the end of the day he could move his foot just a tiny bit, but it moved!
Physical therapy early this afternoon went fairly well (I wasn't there for the morning one, but I hear there was improvement from then to this afternoon). They got him up and had him walk to the cabinets on the wall by his bed (maybe 7 feet away) and back again. He did that with a just a little bit of help getting his left leg to move into place with each step, and then he went most of the way a second time and then back and then into to bed. He was glad for the change - to be able to get out of bed and moving again. I think he's already tired of being in a bed all day. Especially since he spent his entire childhood living and working on a farm. Moving and being able to do stuff is one of the things he has always taken for granted. In fact, one of our jokes throughout our marriage has been that his talent is carrying stuff. Well, carrying stuff and getting spiders and other icky bugs. (He has many talents, but since I don't really enjoy carrying stuff - or getting spiders - he LOVES to do those things for me so I don't have to, we have always joked about that.)
The best news of the day: he can smile again! The muscles on his face are working enough that he can do a fairly good smile! This afternoon after we both took a bit of a nap (and apparently Katie snuck in a took a picture of us - holding hands with my head on a folded up blanket on his bedside tray and him in bed - sneaky Katie!) Mark out of nowhere just up and gave me the biggest smile I have seen from him in days! It was so cute and awesome that I just giggled and laughed at how happy he looked!
His speech is still a bit slow. He almost sounds as if he just woke up, a bit groggy and tired. I asked him if it was just his body that was slow, or if his brain was also a bit slow. He said both were slow, but that his body was slower than his brain. I might have to wait for a few more days to start delving into the philosophical conversations we used to have. I guess it's a good thing that I know how to be patient, and I know it's worth the wait - even if it never comes in this life, it will have been worth the wait.
For dinner he asked to sit up. Not raise the bed to a sitting position, but put his legs off the side of the bed and eat as if he was sitting at a table. We had to unhook a few things and it took a bit of help from the nurses to get him to a sitting position, but once he was there he held himself up really well. He has pretty good trunk control (at least that's what I heard the nurses call it), it is just moving those left extremities into position that takes help from other people.
He's had a good appetite. He ordered eggs and french toast for breakfast, roast and mashed potatoes for dinner, pasta and a roll for lunch. There was also fruit and a dessert to go with each meal. He has eaten almost everything on the tray - he does try to give me some of his food, but I am well taken care of in the food department so I only snitch the stuff he won't eat (cantaloupe and honeydew and one slice of his roast) and I make him share his dessert - who can pass up sugar?. He has also gone through a lot of apple juice.
Mark is in good spirits, even though he dislikes the idea that he needs help doing things. I have a feeling that this can end up being both a good thing and a bad thing. He's already trying to do things he doesn't really have the strength for, which should be good practice and motivation to get better. At the moment it's not a problem because he's still pretty much stuck in bed and can do little to hurt himself there, but I have a feeling there will come a time when the things he can't do, but tries to do anyway, will get him into trouble. I expect that, for the most part, this independent streak will be a good thing far more often than it will be a bad thing, so I'm not going to try stop him unless it becomes a problem.
The kids got to visit with their Daddy for the first time post surgery! We tried to hide all of the wires coming out him so their first impression wasn't of him with all sorts of wires everywhere. For a while we were wondering if we should expose them to what their dad was going through, but in the end we decided that they would find out at some point (how could they not?), and to hide this from them would be of no benefit. We have always tried to explain everything to our kids - even (especially?) the harder facts of life. Of course we try to do it at their level ("Daddy had a cell in his brain that decided it wanted to do something silly and grow differently than how it was supposed to, and it got too big. The doctors thought it needed to get out of there, so they made a pretty cool looking cut in Daddy's head and used something like a spoon and scooped it out. Then they sewed him back together again! How awesome is that? Isn't it pretty weird that they sewed Daddy's head? He's going to have an awesome looking scar! And we'll need to be gentle with Daddy for a while until he feels better. No more 'tackle daddy' games for a little bit.") So, they came to visit in the evening. We had them come in one or two at a time - just so we could focus on what the kids needed to feel comfortable. As the kids get used to what's going on we'll probably start bringing them all in at a once, but we felt that for the first visit they needed more individualized attention. Shelly took a minute or so to warm up to seeing her Daddy so unlike her normal Daddy. She asked a few questions about what all the numbers on the computer screen meant and was fine, she then spent a little bit of time talking to Mark and a lot of time listening to my explanations as I talked to Jason. He took a bit longer. Jason wouldn't hold Mark's hand at first (not sure that he ever actually did - we didn't push it in the beginning and I forgot to pay attention later - he did give him a hug and kiss goodbye!). He sat on my lap and asked a lot of questions - mostly about the numbers on the screen. There wasn't a number he didn't want explained (and I don't know what they all mean, so I got to make a few guesses myself). He did eventually get to the point where he would wander around the room to find more numbers that needed explaining. He never really did get past saying 'hi Dad' to Mark.
Emily and Annie came in next. Apparently there was a huge crowd of people in the waiting room, so our time with the two little ones was short. Mark and I both got to give them a hug and kiss and say a few words, but then they left to make time for everyone to have a chance to come in before Mark got totally worn out. I think we'll plan the kids visits for a bit earlier in the day next time, so we have more time without all the extra people waiting and so Mark isn't quite as tired.
All in all, life is still good. I do miss the 'old' Mark at times, but I am grateful for what I have. What I have is awesome! I have lots (TONS) of love and support. I have awesome kids and a caring husband. I have amazing family members who have dropped almost everything to be here for me. I have more amazing family who are doing what they can to help give the support we need. I have friends and family too far away to much more than pray, text and e-mail, but they do that well and knowing they are out there is incredibly comforting! I have food just magically appear around meal times. I have the blessing of modern medicine and good doctors who know what they're doing. Mark has had amazing nurses and staff at the hospital. Yup, even (especially?) in the worst of times, there is still a lot to see of the best there is out there!
P.S. My sister informs me that there are typos in some of these recent posts (and I read a tiny bit over her shoulder this afternoon and cringed at some of the poor sentence structure). Please forgive me. Most of these have been largely typed up at some obscene hour of the morning (while Mark is asleep and I can let his hand go for a bit to type). I spent a while trying to find some of them, but finally decided that sleep was more important.
But getting sleep has had a few negative side effects as well. For one, I stayed home to visit with the kids while they were getting ready for school (that was actually a good thing - I think the kids needed a bit of time with their mom) and because of that I missed being there while his doctors were doing their rounds and the first round of physical therapy, so any info I have from that is second hand. Also, with more sleep and time to think, I've been able to actually process some of this, and I haven't been quite as able to keep myself together as I could before. I was pretty good at being a complete non-thinking zombie and still putting on and keeping on a cheerful(ish at times) face for Mark. Once my level of functioning increased, I have had a bit more of a roller-coaster experience. I have much higher highs, and am able to find actual enjoyment in some of this new and different experience, but I still hit the zombie-like phase. The problem is that I can tell the difference now, and some of the reality of what is going on is sneaking it's way into the my thoughts and keeping a cheerful face on is harder in those moments. I have tried to keep under control so Mark doesn't worry any more than he already is - recovering from major brain surgery is enough of a chore without having to also worry about me and how I'm doing - but I haven't always succeeded. I have always managed to get back under control fairly quickly though (at least when he's watching me).
Mark really is doing well for what he's been through. Pretty much all of the visitors have told him that. I think he's catching on though. Tonight when he heard some family say that to him, his response was 'I'm going to take that to mean that I'm actually looking pretty rough, but that I have a reason too.' I guess that pretty much sums it all up.
His left side is still really weak. A few hours after surgery he was able to lift his left arm above his head and slowly hold up two fingers. He could hold his left leg up. He was even able to use his left leg rather well as he walked to the toilet (a good 20 feet). I think that walk, and then a tiny bit of a wait to get back to bed took a bit of a toll on him (that and the swelling in his brain has had time to increase a bit now). He decided to do all of this at shift change. The nurse was more than awesome, but as it becoming apparent that Mark was going to be a while still on the toilet, the nurse asked me if it was ok if he did a few last minute shift change stuff while I stayed nearby. We only waited about 5 minutes, but Mark was got weaker and needed much more help getting back to bed than he did to get to the toilet. Today he can move his left arm up just enough to get it onto his stomach to hold a dish for eating, but sometimes needs help to do even that and he's having a hard time wiggling his left toes. By the end of the day he could move his foot just a tiny bit, but it moved!
Physical therapy early this afternoon went fairly well (I wasn't there for the morning one, but I hear there was improvement from then to this afternoon). They got him up and had him walk to the cabinets on the wall by his bed (maybe 7 feet away) and back again. He did that with a just a little bit of help getting his left leg to move into place with each step, and then he went most of the way a second time and then back and then into to bed. He was glad for the change - to be able to get out of bed and moving again. I think he's already tired of being in a bed all day. Especially since he spent his entire childhood living and working on a farm. Moving and being able to do stuff is one of the things he has always taken for granted. In fact, one of our jokes throughout our marriage has been that his talent is carrying stuff. Well, carrying stuff and getting spiders and other icky bugs. (He has many talents, but since I don't really enjoy carrying stuff - or getting spiders - he LOVES to do those things for me so I don't have to, we have always joked about that.)
The best news of the day: he can smile again! The muscles on his face are working enough that he can do a fairly good smile! This afternoon after we both took a bit of a nap (and apparently Katie snuck in a took a picture of us - holding hands with my head on a folded up blanket on his bedside tray and him in bed - sneaky Katie!) Mark out of nowhere just up and gave me the biggest smile I have seen from him in days! It was so cute and awesome that I just giggled and laughed at how happy he looked!
His speech is still a bit slow. He almost sounds as if he just woke up, a bit groggy and tired. I asked him if it was just his body that was slow, or if his brain was also a bit slow. He said both were slow, but that his body was slower than his brain. I might have to wait for a few more days to start delving into the philosophical conversations we used to have. I guess it's a good thing that I know how to be patient, and I know it's worth the wait - even if it never comes in this life, it will have been worth the wait.
For dinner he asked to sit up. Not raise the bed to a sitting position, but put his legs off the side of the bed and eat as if he was sitting at a table. We had to unhook a few things and it took a bit of help from the nurses to get him to a sitting position, but once he was there he held himself up really well. He has pretty good trunk control (at least that's what I heard the nurses call it), it is just moving those left extremities into position that takes help from other people.
He's had a good appetite. He ordered eggs and french toast for breakfast, roast and mashed potatoes for dinner, pasta and a roll for lunch. There was also fruit and a dessert to go with each meal. He has eaten almost everything on the tray - he does try to give me some of his food, but I am well taken care of in the food department so I only snitch the stuff he won't eat (cantaloupe and honeydew and one slice of his roast) and I make him share his dessert - who can pass up sugar?. He has also gone through a lot of apple juice.
Mark is in good spirits, even though he dislikes the idea that he needs help doing things. I have a feeling that this can end up being both a good thing and a bad thing. He's already trying to do things he doesn't really have the strength for, which should be good practice and motivation to get better. At the moment it's not a problem because he's still pretty much stuck in bed and can do little to hurt himself there, but I have a feeling there will come a time when the things he can't do, but tries to do anyway, will get him into trouble. I expect that, for the most part, this independent streak will be a good thing far more often than it will be a bad thing, so I'm not going to try stop him unless it becomes a problem.
The kids got to visit with their Daddy for the first time post surgery! We tried to hide all of the wires coming out him so their first impression wasn't of him with all sorts of wires everywhere. For a while we were wondering if we should expose them to what their dad was going through, but in the end we decided that they would find out at some point (how could they not?), and to hide this from them would be of no benefit. We have always tried to explain everything to our kids - even (especially?) the harder facts of life. Of course we try to do it at their level ("Daddy had a cell in his brain that decided it wanted to do something silly and grow differently than how it was supposed to, and it got too big. The doctors thought it needed to get out of there, so they made a pretty cool looking cut in Daddy's head and used something like a spoon and scooped it out. Then they sewed him back together again! How awesome is that? Isn't it pretty weird that they sewed Daddy's head? He's going to have an awesome looking scar! And we'll need to be gentle with Daddy for a while until he feels better. No more 'tackle daddy' games for a little bit.") So, they came to visit in the evening. We had them come in one or two at a time - just so we could focus on what the kids needed to feel comfortable. As the kids get used to what's going on we'll probably start bringing them all in at a once, but we felt that for the first visit they needed more individualized attention. Shelly took a minute or so to warm up to seeing her Daddy so unlike her normal Daddy. She asked a few questions about what all the numbers on the computer screen meant and was fine, she then spent a little bit of time talking to Mark and a lot of time listening to my explanations as I talked to Jason. He took a bit longer. Jason wouldn't hold Mark's hand at first (not sure that he ever actually did - we didn't push it in the beginning and I forgot to pay attention later - he did give him a hug and kiss goodbye!). He sat on my lap and asked a lot of questions - mostly about the numbers on the screen. There wasn't a number he didn't want explained (and I don't know what they all mean, so I got to make a few guesses myself). He did eventually get to the point where he would wander around the room to find more numbers that needed explaining. He never really did get past saying 'hi Dad' to Mark.
Emily and Annie came in next. Apparently there was a huge crowd of people in the waiting room, so our time with the two little ones was short. Mark and I both got to give them a hug and kiss and say a few words, but then they left to make time for everyone to have a chance to come in before Mark got totally worn out. I think we'll plan the kids visits for a bit earlier in the day next time, so we have more time without all the extra people waiting and so Mark isn't quite as tired.
All in all, life is still good. I do miss the 'old' Mark at times, but I am grateful for what I have. What I have is awesome! I have lots (TONS) of love and support. I have awesome kids and a caring husband. I have amazing family members who have dropped almost everything to be here for me. I have more amazing family who are doing what they can to help give the support we need. I have friends and family too far away to much more than pray, text and e-mail, but they do that well and knowing they are out there is incredibly comforting! I have food just magically appear around meal times. I have the blessing of modern medicine and good doctors who know what they're doing. Mark has had amazing nurses and staff at the hospital. Yup, even (especially?) in the worst of times, there is still a lot to see of the best there is out there!
P.S. My sister informs me that there are typos in some of these recent posts (and I read a tiny bit over her shoulder this afternoon and cringed at some of the poor sentence structure). Please forgive me. Most of these have been largely typed up at some obscene hour of the morning (while Mark is asleep and I can let his hand go for a bit to type). I spent a while trying to find some of them, but finally decided that sleep was more important.
Wednesday, May 1, 2013
Update - Post Surgery
Here is a copy of an update that my parents sent out via e-mail. I'll be able to do more when I've had some sleep and time to think/process everything.
Shelly, Mark's oldest daughter, age 7, was given a brief explanation of why her daddy was in the hospital. In her prayer last night she said, "Please bless Daddy not to be scared and please bless the doctors not to mess up too badly." Her prayer was answered, but the prognosis is still discouraging.
Mark's left side is somewhat affected because the doctor had to get close to something that affects that side during the operation. When the doctor visited him in his room, after surgery, Mark was able to lift his left arm, put up 2 fingers and somewhat move his left leg - all great signs the doctor said. Mark was even able to walk to the bathroom today - they don't see patients do that on the first day in the ICU very often.
Mark is awake, having drugs for the pain, talking, drinking water and apple juice, remembers the Boston bomber's last name and can easily name his kids!!! He even cracks jokes. When told of the doctor's first look, Mark said, "Well, I'm alive today!" to which Rachel responded, "And you'll be alive tomorrow!" I guess that's all we can do, take things one day at a time and be grateful for each one.
There has been LOTS of support from both sides of the family. With Mark in ICU, and well watched over, Rachel is going to go home tonight and get some real sleep - she has only slept 5 hours in the last 48, all in the hospital chair.
Mark will be in ICU for 2-3 days, depending on how he is able to move, walk, and feed himself, then a regular room for 2-3 more days.
Right now, I'm fairly emotionally numb to everything. I consider it a blessing because it allows me to still be able to function (something I'm not sure I could do if I actually sat down and thought about any of this), and I am more able to set myself aside and be who Mark needs me to be right now. I think the hardest part for me at the moment is trying to figure out the balance between who Mark needs me to be and what my kids need me to be, all while still trying to remember what I need for myself. It's quite a balancing act :) I've been pretty much surrounded by family since this all started. Except for overnight, I think I've been alone with Mark for only a few minutes at a time. While we treasure our alone time, this has been mostly a blessing. Having people around keeps me from having time to imagine anything but what is going 'right now.' It's has been a bit hard too, Mark and I miss our time to talk - especially when we was better able too before (his throat is a bit sore post surgery, and he's been relying on the very little sign language he knows to help him not have to talk as much) - but on the whole, family is a very good thing! I would much rather have them here than not.
Hopefully in the next few days as Mark continues to recover more and we learn more about what all this means and how to proceed, life will calm down a bit. I'm fairly confident that he will recover pretty much fully from this round. To me the biggest question is how long will the recovery last, and what happens if/when this comes back?
Shelly, Mark's oldest daughter, age 7, was given a brief explanation of why her daddy was in the hospital. In her prayer last night she said, "Please bless Daddy not to be scared and please bless the doctors not to mess up too badly." Her prayer was answered, but the prognosis is still discouraging.
Mark was in surgery for about 4 hours. They got most of the cancer, but from the look of it they think he will need radiation and chemo somewhat quickly. Looks don't always tell an accurate story, so we have to wait for the biopsy results, but that first look was not encouraging.
Mark is awake, having drugs for the pain, talking, drinking water and apple juice, remembers the Boston bomber's last name and can easily name his kids!!! He even cracks jokes. When told of the doctor's first look, Mark said, "Well, I'm alive today!" to which Rachel responded, "And you'll be alive tomorrow!" I guess that's all we can do, take things one day at a time and be grateful for each one.
There has been LOTS of support from both sides of the family. With Mark in ICU, and well watched over, Rachel is going to go home tonight and get some real sleep - she has only slept 5 hours in the last 48, all in the hospital chair.
Mark will be in ICU for 2-3 days, depending on how he is able to move, walk, and feed himself, then a regular room for 2-3 more days.
Robert & Debbie
Right now, I'm fairly emotionally numb to everything. I consider it a blessing because it allows me to still be able to function (something I'm not sure I could do if I actually sat down and thought about any of this), and I am more able to set myself aside and be who Mark needs me to be right now. I think the hardest part for me at the moment is trying to figure out the balance between who Mark needs me to be and what my kids need me to be, all while still trying to remember what I need for myself. It's quite a balancing act :) I've been pretty much surrounded by family since this all started. Except for overnight, I think I've been alone with Mark for only a few minutes at a time. While we treasure our alone time, this has been mostly a blessing. Having people around keeps me from having time to imagine anything but what is going 'right now.' It's has been a bit hard too, Mark and I miss our time to talk - especially when we was better able too before (his throat is a bit sore post surgery, and he's been relying on the very little sign language he knows to help him not have to talk as much) - but on the whole, family is a very good thing! I would much rather have them here than not.
Hopefully in the next few days as Mark continues to recover more and we learn more about what all this means and how to proceed, life will calm down a bit. I'm fairly confident that he will recover pretty much fully from this round. To me the biggest question is how long will the recovery last, and what happens if/when this comes back?
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