Here's an e-mail I sent to myself while I was sitting in a waiting room, waiting for Mark to get done with an appointment. It was the only way I could think of to write it down, since I don't have a data plan...
p.s. This is my 500th post! Wow!!
Thursday Oct 24th:
I have an amazing husband. Recently it's been easy to forget that. As we have fought through all the ups and downs of a brain tumor, it's been easier to see where the surgery and brain trauma have left him with deficiencies. Today I was reminded of the husband I married (which, I confess, I have not seen as much of as I would like in recent months).
In recent weeks we have noticed that Mark needs more help than I can give him - his ability has surpassed my capability to help him progress, but he is still lacking and needing improvement. We were racking our brains trying to figure out where we could go to get him the help he needs and all we could up with was trying therapy to help him get his thought processes working normally again.
We were sitting in an office waiting for Mark to get checked in for a mental health appointment at a clinic in the area we can actually afford (aka: free). All around us are people who struggle; mentally, physically, emotionally, financially, etc. They struggle.
I was sitting in the lobby lamenting how we ended up reduced to needing to come here with the 'crazy' people, when Mark leans over and reminds me why I married him.
"Just think, in a year or two I can be working in a place like this, helping people like them."
I was certain he was teasing me, but he was utterly serious. He was actually excited about the idea.
I realized how utterly shallow I was being and began to see the others in the lobby the same way Mark saw them - as regular people who need help and love just like everyone else. I also pictured Mark, knowing how he sometimes looks to other people, and I had this vision of Mark's personality and thoughts trapped in a body like theirs (or his, for that matter), and all of a sudden all of the people around me changed from being 'crazy' into being normal, amazing people who were simply having a hard time. It was an awesome transformation.
While there is much about our current life to hate with a passion (hello, brain tumor), and there are moments that are utterly devastating as I get a glimpse of the difference between what our life used to be like and what it is now (those moments don't happen too often), and a whole ton that's hard, and more drama than anyone should have to put up with, there are moments that are so awesome they make the rest of it totally worth it.
Those moments are worth holding on to.
Saturday, November 9, 2013
Mark is Home Again
I'm way behind on updating everyone, and life has been overly tiring lately, so I'm going to cheat and use e-mails that my mom sent out to my immediate family during some of the recent drama. I'm sorry for not getting this done sooner, but the few spare minutes I've had to myself I've spent keeping myself sane and not worrying about this here blog... Hopefully life will calm down at some point and I'll be able to get back on top of things. I'm not holding my breath though, so I recommend you don't either :)
Wed Oct 23rd:
Wed Oct 23rd:
Hi All,
Before Mark was released about 15 different people, doctors and nurses stopped by to check him out - cardiologist, oncologist, radiologist, neurologist, family practice (twice), social services, physical therapy (twice), dietitian, nurse (2 different ones), tech, nurse's assistant, medical equipment coordinator (for a cane)..... just yesterday - and they all said he was good to go home :-).
Mark really was discharged yesterday, Tuesday, and arrived home at about 6:30pm. There were 3 prescriptions that needed to be filled, so I headed to the pharmacy. Once there they told me that they couldn't use Mark's insurance to cover them because the doctor who wrote the prescriptions wasn't covered by that insurance - who has ever heard of that??!??! I called Rachel to ask what to and she said that one of them was Mark's seizure medicine and that he really needed it. The pharmacy said that they could fill only a few days worth while we got the prescriptions written by another doctor. I thought about that for a second and thought, that is the last thing Rachel needs right now. So I just filled them and paid for them. I then warned Rachel about getting prescriptions from the correct doctor so that it will be covered :-).
Mark is scheduled to receive out-patient physical, occupational and speech therapy. They are happy that it will be out-patient instead of Home Health because they think Mark will be more challenged that way - more equipment to have him work with.
Mark slept a bunch once he got home and felt much better on Wednesday! Elaine, bless her wonderful heart, took Emily and Annie today - which gave me a great chance to get a bunch done around the house. The downstairs is all cleaned, vacuumed, laundry done, bathroom scrubbed.... it's looking great! I also did a few loads of Rachel and Mark's clothes. I also emptied their car and ran it to a car wash to get it cleaned inside and out - is looks awesome now!!! Mark and Rachel even ran an errand in the morning - then Mark came home and took a nap :-). They took a walk around the block in the afternoon as well. He just said that he is feeling really good.
I've set up two different companies to come and put in new fences - one wrought iron at the end of the carport and the new stairs and the other one a vinyl company to put in a vinyl, scalloped, white picket fence from the east end of the carport, along the driveway to the street and along the street to the corner where the lilacs start. They should both be done in about a month. Then I set up an electrician to come and fix the breaker box - that thing is probably 50 years old!!!
I'm leaving tomorrow, Thursday, late afternoon and will return to work on Friday. The new clerk had worked 3 days before I left her and I hear she has done great in my absence.
Before Mark was released about 15 different people, doctors and nurses stopped by to check him out - cardiologist, oncologist, radiologist, neurologist, family practice (twice), social services, physical therapy (twice), dietitian, nurse (2 different ones), tech, nurse's assistant, medical equipment coordinator (for a cane)..... just yesterday - and they all said he was good to go home :-).
Mark really was discharged yesterday, Tuesday, and arrived home at about 6:30pm. There were 3 prescriptions that needed to be filled, so I headed to the pharmacy. Once there they told me that they couldn't use Mark's insurance to cover them because the doctor who wrote the prescriptions wasn't covered by that insurance - who has ever heard of that??!??! I called Rachel to ask what to and she said that one of them was Mark's seizure medicine and that he really needed it. The pharmacy said that they could fill only a few days worth while we got the prescriptions written by another doctor. I thought about that for a second and thought, that is the last thing Rachel needs right now. So I just filled them and paid for them. I then warned Rachel about getting prescriptions from the correct doctor so that it will be covered :-).
Mark is scheduled to receive out-patient physical, occupational and speech therapy. They are happy that it will be out-patient instead of Home Health because they think Mark will be more challenged that way - more equipment to have him work with.
Mark slept a bunch once he got home and felt much better on Wednesday! Elaine, bless her wonderful heart, took Emily and Annie today - which gave me a great chance to get a bunch done around the house. The downstairs is all cleaned, vacuumed, laundry done, bathroom scrubbed.... it's looking great! I also did a few loads of Rachel and Mark's clothes. I also emptied their car and ran it to a car wash to get it cleaned inside and out - is looks awesome now!!! Mark and Rachel even ran an errand in the morning - then Mark came home and took a nap :-). They took a walk around the block in the afternoon as well. He just said that he is feeling really good.
I've set up two different companies to come and put in new fences - one wrought iron at the end of the carport and the new stairs and the other one a vinyl company to put in a vinyl, scalloped, white picket fence from the east end of the carport, along the driveway to the street and along the street to the corner where the lilacs start. They should both be done in about a month. Then I set up an electrician to come and fix the breaker box - that thing is probably 50 years old!!!
I'm leaving tomorrow, Thursday, late afternoon and will return to work on Friday. The new clerk had worked 3 days before I left her and I hear she has done great in my absence.
The Hospital: Days 4-6
I'm way behind on updating everyone, and life has been overly tiring lately, so I'm going to cheat and use e-mails that my mom sent out to my immediate family during some of the recent drama. I'm sorry for not getting this done sooner, but the few spare minutes I've had to myself I've spent keeping myself sane and not worrying about this here blog... Hopefully life will calm down at some point and I'll be able to get back on top of things. I'm not holding my breath though, so I recommend you don't either :)
Tues Oct 22nd:
Hi All,
I don't think I've written for a few days, so here you go:
On Sunday, Mark was rather agitated and restless, probably from the seizure medicine. He would fuss with his blanket, inching it up until all of the blanket was by his head. He had a hard time staying in one spot in bed, tossing and turning, getting on his hands and knees, trying to get out of bed..... Elaine timed it and the longest he stayed in one place was 45 seconds.
I made roast beef, potatoes & gravy and stuffing for Sunday dinner. Nate & Brooke, Doug, Katie and even Rachel were there for dinner. LaMont and Elaine came a bit late, but they ate as well. Julibeth took a turn with Mark at the hospital so everyone else could come. It was nice to have everyone together and chat. We had a nice time.
On Monday morning Rachel sent me a text that said, "They have moved Mark to the cardiovascular ICU. His heart rate dropped down into the 30s overnight - even going down into the 20s. The move was a precautionary one, everything else looked fine. Turns out the seizure meds can cause a drop in heart rate, so they're waiting for those to get out of his system and see where he stands. Guess it is time to try a third seizure drug...:)" [editors note: There was exactly one other case reported to the FDA of that med dropping the heart rate. Mark apparently was a rare case, and the doc said he would try to make sure he made another report so there would be two :) ]
Mark did just fine while on that floor and by Monday evening he was back on the regular floor - once a room opened up for him. Mark is approved to have a nurse stay with him 24/7 and the last few nights Rachel and the Schofields have taken advantage of that - it has given them all a much needed break and rest.
Mark has been doing good today and all the doctors have agreed to discharge him and send him home. There is still paperwork that needs to be done, but Mark should be home by early evening and get to sleep in his own bed - without nurses disturbing him during the night. There is 'group' tonight and he would love to attend, but Rachel's not sure they will be home in time to go or if Mark will really be up for it.
I'm planning on staying for a day or two to make sure that Mark (and Rachel) are really doing okay before I leave - and that Mark doesn't continue to have seizures and need to go back. So I might head home on Thursday evening.
The kids will be happy to have their mom and dad home again - but who they REALLY want (and who doesn't) is Nikki! The girls ask to hold her when she is home and when they visited the hospital.
Tues Oct 22nd:
Hi All,
I don't think I've written for a few days, so here you go:
On Sunday, Mark was rather agitated and restless, probably from the seizure medicine. He would fuss with his blanket, inching it up until all of the blanket was by his head. He had a hard time staying in one spot in bed, tossing and turning, getting on his hands and knees, trying to get out of bed..... Elaine timed it and the longest he stayed in one place was 45 seconds.
I made roast beef, potatoes & gravy and stuffing for Sunday dinner. Nate & Brooke, Doug, Katie and even Rachel were there for dinner. LaMont and Elaine came a bit late, but they ate as well. Julibeth took a turn with Mark at the hospital so everyone else could come. It was nice to have everyone together and chat. We had a nice time.
On Monday morning Rachel sent me a text that said, "They have moved Mark to the cardiovascular ICU. His heart rate dropped down into the 30s overnight - even going down into the 20s. The move was a precautionary one, everything else looked fine. Turns out the seizure meds can cause a drop in heart rate, so they're waiting for those to get out of his system and see where he stands. Guess it is time to try a third seizure drug...:)" [editors note: There was exactly one other case reported to the FDA of that med dropping the heart rate. Mark apparently was a rare case, and the doc said he would try to make sure he made another report so there would be two :) ]
Mark did just fine while on that floor and by Monday evening he was back on the regular floor - once a room opened up for him. Mark is approved to have a nurse stay with him 24/7 and the last few nights Rachel and the Schofields have taken advantage of that - it has given them all a much needed break and rest.
Mark has been doing good today and all the doctors have agreed to discharge him and send him home. There is still paperwork that needs to be done, but Mark should be home by early evening and get to sleep in his own bed - without nurses disturbing him during the night. There is 'group' tonight and he would love to attend, but Rachel's not sure they will be home in time to go or if Mark will really be up for it.
I'm planning on staying for a day or two to make sure that Mark (and Rachel) are really doing okay before I leave - and that Mark doesn't continue to have seizures and need to go back. So I might head home on Thursday evening.
The kids will be happy to have their mom and dad home again - but who they REALLY want (and who doesn't) is Nikki! The girls ask to hold her when she is home and when they visited the hospital.
In the Hospital: Days 1-2
I'm way behind on updating everyone, and life has been overly tiring lately, so I'm going to cheat and use e-mails that my mom sent out to my immediate family during some of the recent drama. I'm sorry for not getting this done sooner, but the few spare minutes I've had to myself I've spent keeping myself sane and not worrying about this here blog... Hopefully life will calm down at some point and I'll be able to get back on top of things. I'm not holding my breath though, so I recommend you don't either :)
Fri Oct 19th:
Hi All,
I arrived in Utah late last night and found Rachel, Katie and Doug all on Rachel's bed talking. I took Nikki from Katie and joined them :-). We talked about Mark and when I asked how he was today Rachel said that he knew who she was. She then said, but to understand that you need to watch the video of Mark that I took.
Rachel handed me her phone so that I could watch. Mark was sitting on the couch with a back cushion from the couch in his hands. His was repeatedly trying to unzip it, then zip, then unzip.... He turned it over and around in his hands. When Rachel asked him to zip it up, he just looked at her blankly. After she repeated it a few times, he did so. Then she took that cushion away from him. Mark immediately picked up a smaller pillows from the couch and checked the edges, turning it over and around looking for a zipper and checking out the seams. Rachel asked Mark what day it was, what year is was, who was the President, the names of their children.... and Mark just looked at her blankly after each question.
Then Elaine came into the room and stood in front of Mark. Rachel asked Mark who she was. Mark stopped picking at the pillow and pointed at her. Rachel said, I didn't ask where she was, but who she was and again Mark pointed at her. He was unable to answer any questions, but he did seem to recognize his mother. Rachel said that this went on for about an hour.
Rachel then explained the seizures the way the doctors did. There are 2 parts to the seizures, the 1st part is the seizure itself. Mark has had the seizures with others in the room, but no one has realized it was happening when it happened. The 2nd part are the after effects - fidgety, unresponsive, non-verable, blank stares.... - which can last 30 - 60 minutes.
The doctor said to think of the 1st part like a wildfire and the 2nd part like trying to move into a burnt down house. A spark causes the seizure which is like a fire going crazy in your brain - this lasts from 30-90 seconds. Once that part is done, your brain is like a burnt down house and the second part is the person trying to figure it out, make sense of it and deal with it. The anti seizure medicine is like spreading fire retardant everywhere to try to stop the spark from igniting and starting the fire in the first place (we think the swelling in his brain set up the perfect conditions for a 'fire'). Dr Rich also started Mark on steroids again, to help with the brain swelling - he said that he hoped that would stop the spark from even forming. They expect Mark to be on anti-seizure medicine for at least a year.
We finally stopped talking at 11:30 and all went to bed (Doug left) and I got to be in charge of Nikki during the night - such tough duty :-). In the morning Rachel left for the hospital early, hoping to be there when the doctor made his rounds - she guessed around 7am. I slept in the front room with Nikki, who Rachel took with her - and I heard the kids getting breakfast sometime after that, but I was able to go right back to sleep. I did get up later and enjoyed watching the kids play their pretend games in the family room!
Katie and I decided to take the kids to see Monster's University at 12:30. Annie fell asleep on my lap and Emily liked to hold my arm and wrap her arms around it. When the good team won the competition, Jason's arms shot up in the air while he yelled YES!!!! A little later, during a scary part he said that he didn't want to watch the movie anymore, so I invited him into my (by then) empty lap and he was just fine.
After the movie I left Katie with the kids and headed to the hospital to visit Mark, Rachel and the Schofield's - it didn't hurt that the BYU football game was on and could be seen at the hospital :-). Mark was awake, alert and knew who I was. He was able to carry on a conversation with the nurse who came in and then shortly afterwards was getting his words mixed up, inter-changing beginning sounds of words and even making up words. His language and attentiveness went in and out and up and down.
Elaine pointed out that Mark doesn't like to be touched, except by Rachel. Rachel suggested warning him and asking permission to touch him when helping him get out of bed. Lamont told me that he was rather concerned about Mark and hoped that he wouldn't leave the hospital when he was still so confused. A little later Mark told Rachel that she had letters in her hair. When she asked him what he meant, he pointed to the top of her head and said that there were letters there. When Rachel asked him what the letters spelled Mark said Michelin. When Lamont said "what did he say?" Rachel responded that she had a tire company's name on her head. The nurse was in the room during this time and asked if Mark had been hallucinating before this. Elaine said that Mark told her there was a man in the room the night before - when no one was there. The nurse made note that Mark was hallucinating - I don't know if the staff and doctors knew that before. Lamont asked the nurse if they would send Mark home when he was still like that and the nurse said no.
Elaine and Lamont left the room during half time and Rachel left to go to the bathroom. Mark and I had a good conversation at first, but then he started mixing up and making up words and telling stories than weren't real. He was in a good mood, just not quite himself. Elaine and Lamont both told me that it is hard to see him like this. Mark got up to the use the bathroom and then the physical therapist came in and had Mark walk down the hall for a bit. Mark was doing okay, a little weak on the left side, but not bad. Then both Rachel and Elaine saw a small difference in how he walked and that he didn't look at Rachel anymore. When Mark got back into bed he was really flushed - which is what happens when he has a seizure - so they think that is what made the difference on the walk.
I was encouraged when the physical therapist was working with Mark and he was able to move both arms, both legs, both feet..... After surgery he wasn't able to move both, so I was glad to see that he hadn't lost that ability. Mark has some moments when he is doing great and other moments when he seems confused and dazed. I haven't seen the non-responsive (except on the video), so hopefully they are getting the medicine to the right dosage to help and not make him sleep all the time.
I left the hospital after the game, bought pizza and went home to eat dinner with the kids. Katie had a ward Halloween party tonight and took the 4 kids with her. They had a BLAST (but don't ask Jason, when he got home he said it was boring!!!!). While they were gone I emptied the dishwasher, filled it again, washed some dishes and then cleaned the playroom. All in all a good evening all around. Katie is now reading to the kids.
I don't know when Mark will be released from the hospital, but I thinking that I should stay at least until he comes home. With Mark in the hospital, Rachel and his parents want to be with him and I would be helpful at home with the kids - especially if it goes into the coming week. So we'll see how Mark progresses. Right now I have a plane ticket to fly home on Monday night, but Lisa said that I would be able to see in their eyes if I needed to stay longer and that I should if I needed to :-). Everyone at Meadow Park is telling me that family comes first, so I'm here at least as long as Mark is in the hospital. Hopefully the clerk who has had the job for 3 days and the principal that subs for Lisa when she is gone can hold down the fort :-).
Fri Oct 19th:
Hi All,
I arrived in Utah late last night and found Rachel, Katie and Doug all on Rachel's bed talking. I took Nikki from Katie and joined them :-). We talked about Mark and when I asked how he was today Rachel said that he knew who she was. She then said, but to understand that you need to watch the video of Mark that I took.
Rachel handed me her phone so that I could watch. Mark was sitting on the couch with a back cushion from the couch in his hands. His was repeatedly trying to unzip it, then zip, then unzip.... He turned it over and around in his hands. When Rachel asked him to zip it up, he just looked at her blankly. After she repeated it a few times, he did so. Then she took that cushion away from him. Mark immediately picked up a smaller pillows from the couch and checked the edges, turning it over and around looking for a zipper and checking out the seams. Rachel asked Mark what day it was, what year is was, who was the President, the names of their children.... and Mark just looked at her blankly after each question.
Then Elaine came into the room and stood in front of Mark. Rachel asked Mark who she was. Mark stopped picking at the pillow and pointed at her. Rachel said, I didn't ask where she was, but who she was and again Mark pointed at her. He was unable to answer any questions, but he did seem to recognize his mother. Rachel said that this went on for about an hour.
Rachel then explained the seizures the way the doctors did. There are 2 parts to the seizures, the 1st part is the seizure itself. Mark has had the seizures with others in the room, but no one has realized it was happening when it happened. The 2nd part are the after effects - fidgety, unresponsive, non-verable, blank stares.... - which can last 30 - 60 minutes.
The doctor said to think of the 1st part like a wildfire and the 2nd part like trying to move into a burnt down house. A spark causes the seizure which is like a fire going crazy in your brain - this lasts from 30-90 seconds. Once that part is done, your brain is like a burnt down house and the second part is the person trying to figure it out, make sense of it and deal with it. The anti seizure medicine is like spreading fire retardant everywhere to try to stop the spark from igniting and starting the fire in the first place (we think the swelling in his brain set up the perfect conditions for a 'fire'). Dr Rich also started Mark on steroids again, to help with the brain swelling - he said that he hoped that would stop the spark from even forming. They expect Mark to be on anti-seizure medicine for at least a year.
We finally stopped talking at 11:30 and all went to bed (Doug left) and I got to be in charge of Nikki during the night - such tough duty :-). In the morning Rachel left for the hospital early, hoping to be there when the doctor made his rounds - she guessed around 7am. I slept in the front room with Nikki, who Rachel took with her - and I heard the kids getting breakfast sometime after that, but I was able to go right back to sleep. I did get up later and enjoyed watching the kids play their pretend games in the family room!
Katie and I decided to take the kids to see Monster's University at 12:30. Annie fell asleep on my lap and Emily liked to hold my arm and wrap her arms around it. When the good team won the competition, Jason's arms shot up in the air while he yelled YES!!!! A little later, during a scary part he said that he didn't want to watch the movie anymore, so I invited him into my (by then) empty lap and he was just fine.
After the movie I left Katie with the kids and headed to the hospital to visit Mark, Rachel and the Schofield's - it didn't hurt that the BYU football game was on and could be seen at the hospital :-). Mark was awake, alert and knew who I was. He was able to carry on a conversation with the nurse who came in and then shortly afterwards was getting his words mixed up, inter-changing beginning sounds of words and even making up words. His language and attentiveness went in and out and up and down.
Elaine pointed out that Mark doesn't like to be touched, except by Rachel. Rachel suggested warning him and asking permission to touch him when helping him get out of bed. Lamont told me that he was rather concerned about Mark and hoped that he wouldn't leave the hospital when he was still so confused. A little later Mark told Rachel that she had letters in her hair. When she asked him what he meant, he pointed to the top of her head and said that there were letters there. When Rachel asked him what the letters spelled Mark said Michelin. When Lamont said "what did he say?" Rachel responded that she had a tire company's name on her head. The nurse was in the room during this time and asked if Mark had been hallucinating before this. Elaine said that Mark told her there was a man in the room the night before - when no one was there. The nurse made note that Mark was hallucinating - I don't know if the staff and doctors knew that before. Lamont asked the nurse if they would send Mark home when he was still like that and the nurse said no.
Elaine and Lamont left the room during half time and Rachel left to go to the bathroom. Mark and I had a good conversation at first, but then he started mixing up and making up words and telling stories than weren't real. He was in a good mood, just not quite himself. Elaine and Lamont both told me that it is hard to see him like this. Mark got up to the use the bathroom and then the physical therapist came in and had Mark walk down the hall for a bit. Mark was doing okay, a little weak on the left side, but not bad. Then both Rachel and Elaine saw a small difference in how he walked and that he didn't look at Rachel anymore. When Mark got back into bed he was really flushed - which is what happens when he has a seizure - so they think that is what made the difference on the walk.
I was encouraged when the physical therapist was working with Mark and he was able to move both arms, both legs, both feet..... After surgery he wasn't able to move both, so I was glad to see that he hadn't lost that ability. Mark has some moments when he is doing great and other moments when he seems confused and dazed. I haven't seen the non-responsive (except on the video), so hopefully they are getting the medicine to the right dosage to help and not make him sleep all the time.
I left the hospital after the game, bought pizza and went home to eat dinner with the kids. Katie had a ward Halloween party tonight and took the 4 kids with her. They had a BLAST (but don't ask Jason, when he got home he said it was boring!!!!). While they were gone I emptied the dishwasher, filled it again, washed some dishes and then cleaned the playroom. All in all a good evening all around. Katie is now reading to the kids.
I don't know when Mark will be released from the hospital, but I thinking that I should stay at least until he comes home. With Mark in the hospital, Rachel and his parents want to be with him and I would be helpful at home with the kids - especially if it goes into the coming week. So we'll see how Mark progresses. Right now I have a plane ticket to fly home on Monday night, but Lisa said that I would be able to see in their eyes if I needed to stay longer and that I should if I needed to :-). Everyone at Meadow Park is telling me that family comes first, so I'm here at least as long as Mark is in the hospital. Hopefully the clerk who has had the job for 3 days and the principal that subs for Lisa when she is gone can hold down the fort :-).
ER the Second
I'm way behind on updating everyone, and life has been overly tiring lately, so I'm going to cheat and use e-mails that my mom sent out to my immediate family during some of the recent drama. I'm sorry for not getting this done sooner, but the few spare minutes I've had to myself I've spent keeping myself sane and not worrying about this here blog... Hopefully life will calm down at some point and I'll be able to get back on top of things. I'm not holding my breath though, so I recommend you don't either :)
Thurs Oct 17th:
Hi All,
I got a text from Rachel at 12:47 that said, "And...We're back in the ER, but this time Dr. Rich told us to come. Same type of episode. I have a video of it! :-)"
I little while later when I asked how Mark was doing, she replied, "He's responsive again, we're waiting for the doc."
When I asked if she had called Dr. Rich when it happened and how it had lasted she said, "Called Dr. Rich from home. I didn't want to bring him to the ER just to have him get better again. He told me to come here (well, his nurse did). The episode seemed to last somewhere between 1/2 hour to a full hour. I'd have to check times on my phone to be sure. I checked. It was close to an hour."
At 3:25 I learned, "They're admitting him to get his fluids up and they're giving him steroids to try to see if they can get the brain swelling down. We're expecting an overnight stay and if he's drinking normally in the morning they'll send him home."
The newest news: "They're still working on admitting him. He had another episode while the docs were here just a minute ago (glad they were here to see it!!!). I think they were ordering another test on his way out to a room (still in the ER) so it could be a bit still."
On Tuesday night Dad and were talking and I said that I felt that I should go to Provo once a month and take a day or two off of work to make it a longer weekend and help Rachel out with anything that she needed.... kids, laundry, bathrooms, vacuuming, meals........ So yesterday I texted the 2 co-principals and asked for permission to miss work this Monday. I planned to fly to UT on Friday evening and back home on Monday evening. Then I got the texts from Rachel today and I'm glad that I already had plans in place.
I'll keep you posted with any other updates I get.
Thurs Oct 17th:
Hi All,
I got a text from Rachel at 12:47 that said, "And...We're back in the ER, but this time Dr. Rich told us to come. Same type of episode. I have a video of it! :-)"
I little while later when I asked how Mark was doing, she replied, "He's responsive again, we're waiting for the doc."
When I asked if she had called Dr. Rich when it happened and how it had lasted she said, "Called Dr. Rich from home. I didn't want to bring him to the ER just to have him get better again. He told me to come here (well, his nurse did). The episode seemed to last somewhere between 1/2 hour to a full hour. I'd have to check times on my phone to be sure. I checked. It was close to an hour."
At 3:25 I learned, "They're admitting him to get his fluids up and they're giving him steroids to try to see if they can get the brain swelling down. We're expecting an overnight stay and if he's drinking normally in the morning they'll send him home."
The newest news: "They're still working on admitting him. He had another episode while the docs were here just a minute ago (glad they were here to see it!!!). I think they were ordering another test on his way out to a room (still in the ER) so it could be a bit still."
On Tuesday night Dad and were talking and I said that I felt that I should go to Provo once a month and take a day or two off of work to make it a longer weekend and help Rachel out with anything that she needed.... kids, laundry, bathrooms, vacuuming, meals........ So yesterday I texted the 2 co-principals and asked for permission to miss work this Monday. I planned to fly to UT on Friday evening and back home on Monday evening. Then I got the texts from Rachel today and I'm glad that I already had plans in place.
I'll keep you posted with any other updates I get.
Update after Seizures
I'm way behind on updating everyone, and life has been overly tiring lately, so I'm going to cheat and use e-mails that my mom sent out to my immediate family during some of the recent drama. I'm sorry for not getting this done sooner, but the few spare minutes I've had to myself I've spent keeping myself sane and not worrying about this here blog... Hopefully life will calm down at some point and I'll be able to get back on top of things. I'm not holding my breath though, so I recommend you don't either :)
Wed Oct 16th:
Hi All,
I spoke with Rachel tonight to get an update about Mark. Here it is:
Mark woke up at 8am when Rachel's alarm went off - and she wasn't in the room. He came out of the bedroom, talked a bit and wanted to get some breakfast. So Mark headed to the kitchen for some cereal and went to grab a bowl and plate, when Rachel asked him why he was getting a plate, he said that he really wanted a spoon - Rachel replied that they do look alike :-).
Mark ate some cereal and then rested in the egg chair. He fell sleep again and slept until the kids came home from school [editors note: another alarm]. He woke up again and ate some more cereal. Rachel commented that Mark is eating more than he has in a while and all they need to do it tell him it is breakfast time and get him to eat some cereal. Mark slept most of the day and woke up this evening, and came out of the bedroom without an alarm going off, when I was talking with Rachel. [I was wrong, there was an alarm...]
Rachel said that Mark is reminding her of his post surgery phase, trying to make jokes, but they don't always make sense. Mark left the light on in the van, which caused the battery to die, and he said that he didn't leave the light on - it was Katie. Katie, that wasn't in the van, didn't have a key to it and couldn't possibly have done it. Mark said that he had to blame the younger sister for something :-). [It was really funny talking with him that night! We laughed together for an hour or so before he was tired and went back to bed]
Rachel is still wondering if what is going on is seizures or effects of radiation and brain swelling. Rachel saw the scans last Tuesday and they showed major swelling and effects of the radiation - to the point that they did more scans, with different contrast, to make sure that it wasn't the tumor growing again. The ER doctor said that most of the things that Mark was doing could be explained by seizures, but not all of them. Rachel is hoping to have some tests run to find the cause of what is going on - seizures or swelling/radiation effects. She wants to make sure of the cause and find the right way to treat it. She is giving Mark the seizure medicine and will ask Dr. Rich about her questions on Monday during their appointment.
When LaMont was telling a family member what was going on with Mark this week he said that he had seen signs of it on Saturday while they were camping. Mark's eyes had glazed over and he wasn't himself for a bit. He also seems to lose time sometimes as well.
Wed Oct 16th:
Hi All,
I spoke with Rachel tonight to get an update about Mark. Here it is:
Mark woke up at 8am when Rachel's alarm went off - and she wasn't in the room. He came out of the bedroom, talked a bit and wanted to get some breakfast. So Mark headed to the kitchen for some cereal and went to grab a bowl and plate, when Rachel asked him why he was getting a plate, he said that he really wanted a spoon - Rachel replied that they do look alike :-).
Mark ate some cereal and then rested in the egg chair. He fell sleep again and slept until the kids came home from school [editors note: another alarm]. He woke up again and ate some more cereal. Rachel commented that Mark is eating more than he has in a while and all they need to do it tell him it is breakfast time and get him to eat some cereal. Mark slept most of the day and woke up this evening, and came out of the bedroom without an alarm going off, when I was talking with Rachel. [I was wrong, there was an alarm...]
Rachel said that Mark is reminding her of his post surgery phase, trying to make jokes, but they don't always make sense. Mark left the light on in the van, which caused the battery to die, and he said that he didn't leave the light on - it was Katie. Katie, that wasn't in the van, didn't have a key to it and couldn't possibly have done it. Mark said that he had to blame the younger sister for something :-). [It was really funny talking with him that night! We laughed together for an hour or so before he was tired and went back to bed]
Rachel is still wondering if what is going on is seizures or effects of radiation and brain swelling. Rachel saw the scans last Tuesday and they showed major swelling and effects of the radiation - to the point that they did more scans, with different contrast, to make sure that it wasn't the tumor growing again. The ER doctor said that most of the things that Mark was doing could be explained by seizures, but not all of them. Rachel is hoping to have some tests run to find the cause of what is going on - seizures or swelling/radiation effects. She wants to make sure of the cause and find the right way to treat it. She is giving Mark the seizure medicine and will ask Dr. Rich about her questions on Monday during their appointment.
When LaMont was telling a family member what was going on with Mark this week he said that he had seen signs of it on Saturday while they were camping. Mark's eyes had glazed over and he wasn't himself for a bit. He also seems to lose time sometimes as well.
The ER
I'm way behind on updating everyone, and life has been overly tiring lately, so I'm going to cheat and use e-mails that my mom sent out to my immediate family during some of the recent drama. I'm sorry for not getting this done sooner, but the few spare minutes I've had to myself I've spent keeping myself sane and not worrying about this here blog... Hopefully life will calm down at some point and I'll be able to get back on top of things. I'm not holding my breath though, so I recommend you don't either :)
Tues Oct 15th:
Hi All,
I got a text from Rachel this afternoon letting me know that she was in the ER with Mark. The ER doctors suspected that Mark was having seizures and were giving him meds through an IV, saying that Mark will need to take anti-seizure medicine for the foreseeable short-term future. [editors note: a year or so, depending on how he does]
I spoke with Rachel later in the afternoon and found out some of what happened during the day that led them to the ER. Elaine reported to Rachel that on Sunday Mark was driving erratically to church, swerving between lanes and almost hitting parked cars. Rachel had some errands to run today and was going to have Mark drive so she could see how he was doing and see if he could drive himself to work and other places.
When Rachel was ready to go, Mark said that he had bent down to pick something up and felt dizzy. Rachel waited for 15 minutes or so and Mark then told her to go without him. So Rachel ran to the post office while Elaine stayed home with the family. While Rachel was gone Elaine asked Mark a question and Mark was not able to give a verbal answer and was drooling - he was awake, but fidgeting strangely and unresponsive.
Elaine called Rachel and Rachel told her to get Mark to the ER and she would meet them there. Then Rachel realized that Elaine didn't have a car, the battery in the van was dead [again] because a light was left on overnight. So Elaine called LaMont at work, who beat Rachel getting to the house. LaMont and Elaine had a hard time getting Mark to the car, they had to give directions over and over again and then had to tell Mark which leg to lift and move so that he could walk, then had to help Mark get his legs into the car.
Rachel and Elaine left Emily and Annie with a neighbor, Shelly and Jason were at school, so they took Nikki and went to the hospital. After Mark was given the meds and was discharged, he threw up on the way to the car. When I spoke with Rachel tonight, Mark had been asleep since leaving the hospital and she expected him to sleep through the night as well.
They have an appointment to see Mark's oncologist on Monday and were given a name of a neurologist to see. Rachel called to get an appointment and first available was Nov 26!!??!?!? Hopefully the oncologist might know someone else or be able to pull some strings to get Mark seen sooner.
Elaine, earlier in the day, had asked Rachel if she would be okay if she didn't stay the night - Elaine has been living there since Nikki was born. Needless to say Elaine is still there, bless her wonderful heart!!!! I'm sure that she and LaMont were rather worried today when they saw Mark in that kind of condition. Thank goodness for wonderful, loving families.
Please keep Rachel and Mark in your prayers. There will be more tests and exams while trying to figure out exactly what is going on and what can be done to help Mark the best.
Tues Oct 15th:
Hi All,
I got a text from Rachel this afternoon letting me know that she was in the ER with Mark. The ER doctors suspected that Mark was having seizures and were giving him meds through an IV, saying that Mark will need to take anti-seizure medicine for the foreseeable short-term future. [editors note: a year or so, depending on how he does]
I spoke with Rachel later in the afternoon and found out some of what happened during the day that led them to the ER. Elaine reported to Rachel that on Sunday Mark was driving erratically to church, swerving between lanes and almost hitting parked cars. Rachel had some errands to run today and was going to have Mark drive so she could see how he was doing and see if he could drive himself to work and other places.
When Rachel was ready to go, Mark said that he had bent down to pick something up and felt dizzy. Rachel waited for 15 minutes or so and Mark then told her to go without him. So Rachel ran to the post office while Elaine stayed home with the family. While Rachel was gone Elaine asked Mark a question and Mark was not able to give a verbal answer and was drooling - he was awake, but fidgeting strangely and unresponsive.
Elaine called Rachel and Rachel told her to get Mark to the ER and she would meet them there. Then Rachel realized that Elaine didn't have a car, the battery in the van was dead [again] because a light was left on overnight. So Elaine called LaMont at work, who beat Rachel getting to the house. LaMont and Elaine had a hard time getting Mark to the car, they had to give directions over and over again and then had to tell Mark which leg to lift and move so that he could walk, then had to help Mark get his legs into the car.
Rachel and Elaine left Emily and Annie with a neighbor, Shelly and Jason were at school, so they took Nikki and went to the hospital. After Mark was given the meds and was discharged, he threw up on the way to the car. When I spoke with Rachel tonight, Mark had been asleep since leaving the hospital and she expected him to sleep through the night as well.
They have an appointment to see Mark's oncologist on Monday and were given a name of a neurologist to see. Rachel called to get an appointment and first available was Nov 26!!??!?!? Hopefully the oncologist might know someone else or be able to pull some strings to get Mark seen sooner.
Elaine, earlier in the day, had asked Rachel if she would be okay if she didn't stay the night - Elaine has been living there since Nikki was born. Needless to say Elaine is still there, bless her wonderful heart!!!! I'm sure that she and LaMont were rather worried today when they saw Mark in that kind of condition. Thank goodness for wonderful, loving families.
Please keep Rachel and Mark in your prayers. There will be more tests and exams while trying to figure out exactly what is going on and what can be done to help Mark the best.
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