Dad has been at the rehabilitation facility since Thursday evening. His appetite has gotten much better and he tends to eat most of, if not all, of his meals. Mikayla brought home almost 3 pounds of blueberries from their trip to Michigan and Mom has been bringing him some every day... and they're almost gone.
Therapy usually comes in at least once a day, and on Friday he took around 12 steps. Saturday he went down to the therapy room and walked the parallel bars. He also walked across the room and got out of the chair with him doing most of the work. Therapy does tend to wear him out and he's usually ready for a nap afterwards.
When the weather cooperates, Mom and Dad will go out and sit in the courtyard for a while. Dad does still have some confusion, especially when it comes to what time of the day it is. I'm sure part of this is from being in a "hospital environment" however they did speak with the doctor on site who said part of it could still be from the past seizures or it could be from his medication. We're going to let his body rest a while longer and see if there is any change.
Overall, Dad seems to be doing MUCH better over the past couple of days. If anyone is interested in visiting, let Mom or I know and we will figure out a good time. The center has a 24/7 visiting policy however he does have therapy during the day. We have a follow up appointment with his team of doctors on Thursday and hopefully we'll get a future game plan.
The Family
07/26/2015
Monday, August 29, 2016
Monday, August 22, 2016
Monday Afternoon Update
So we're obviously still in the hospital but Dad seems to be doing MUCH better than he was a couple of days ago. He is making a lot more jokes and giving all the nurses and other stuff lots of trouble. The nurse just asked him if he needed anything else and he asked for the winning power ball ticket and he'd give her a quarter if she found it. He's still hallucinating a little bit, earlier he saw balloons where there were no balloons, but he's been talking up a storm and makes sense a good majority of the time.
Dad said that while he was having these "spells" he could hear everyone and knew what was going on in the room, hence why he was able to squeeze the doctors hands when they asked. But he said it was like having a foot in two separate universes, one was the real one and the second was where all the hallucinations were happening. He does seem to remember most of what happened in the real world while he was in his alternate universe.
The results from the spinal tap came out negative, so he was taken out of isolation on Saturday (yay no meningitis). They did take all the wires off his head from the EEG today and he was very happy about that. We haven't gotten the results back from that yet. At this point, we're mainly looking at seizures being the culprit for all of this, but we haven't gotten a for sure answer yet.
He has started to eat more than he was a couple days ago, for lunch today he had part of a turkey burger, applesauce, lemonade, and of course, orange sherbet. He's also had a sweet tooth (not enough orange sherbet I guess) and has been asking for candy.
Once they determine Dad is well enough to leave the hospital, he will be going to a local rehab facility for a short stay. It took a little convincing from Mom and I to get Dad on board but we feel as though this is going to be his best option to get his strength back as quickly as possible. He's very determined to go back home!
Dad said that while he was having these "spells" he could hear everyone and knew what was going on in the room, hence why he was able to squeeze the doctors hands when they asked. But he said it was like having a foot in two separate universes, one was the real one and the second was where all the hallucinations were happening. He does seem to remember most of what happened in the real world while he was in his alternate universe.
The results from the spinal tap came out negative, so he was taken out of isolation on Saturday (yay no meningitis). They did take all the wires off his head from the EEG today and he was very happy about that. We haven't gotten the results back from that yet. At this point, we're mainly looking at seizures being the culprit for all of this, but we haven't gotten a for sure answer yet.
He has started to eat more than he was a couple days ago, for lunch today he had part of a turkey burger, applesauce, lemonade, and of course, orange sherbet. He's also had a sweet tooth (not enough orange sherbet I guess) and has been asking for candy.
Once they determine Dad is well enough to leave the hospital, he will be going to a local rehab facility for a short stay. It took a little convincing from Mom and I to get Dad on board but we feel as though this is going to be his best option to get his strength back as quickly as possible. He's very determined to go back home!
Saturday, August 20, 2016
Saturday Morning Update
Not much to update, but Dad did start having seizures yesterday. They took him down for his spinal tap around 2:30 pm and while he was having that done, he had a seizure. His floor nurse happened to be with him, however he was not hooked up to the EEG at the time so unfortunately that seizure was not recorded. He had another seizure around 6:30 pm right before Mom and I were leaving and he was on the EEG that time. The only noticeable symptom is his eyelids fluttering, however his eyes are mostly closed during it. A few minutes after his seizure ended, I asked him if he was okay and he said he was and that he felt fine.
Even with the 24 hour EEG and his seizure, they were able to finish the spinal tap. It's going to be several days before we get the results, which means he will be in isolation for several more days.
Dad's currently on antibiotics, anti seizure medications, and fluids. He's not really eating or drinking now and they've switched all his other medications to IV instead of pills because he wasn't able to swallow water.
Mom and I are figuring that this is going to be a pretty lengthy hospital stay and I'm figuring there won't be much to update until Monday at the earliest. Thanks to everyone for your support. <3
Even with the 24 hour EEG and his seizure, they were able to finish the spinal tap. It's going to be several days before we get the results, which means he will be in isolation for several more days.
Dad's currently on antibiotics, anti seizure medications, and fluids. He's not really eating or drinking now and they've switched all his other medications to IV instead of pills because he wasn't able to swallow water.
Mom and I are figuring that this is going to be a pretty lengthy hospital stay and I'm figuring there won't be much to update until Monday at the earliest. Thanks to everyone for your support. <3
Friday, August 19, 2016
August Hospital Stay
So we're back in the hospital again. I have no idea where to even start so I guess I'll just start at the beginning, that usually seems to work.
Late Wednesday night (the 17th), Mom noticed Dad staring off at the fireplace in the living room and seemed very dazed and didn't really answer questions, other than an occasional yes or no. He said he knew who Mom was but couldn't remember her name or his name. Mom called an ambulance and while she was waiting for them, she called me. I was down in Springfield, MO for a fishing trip with my boyfriend and once she said the ambulance was there, Jim and I packed up our bags real quick and started the drive home. Dad was transported to Barnes Jewish in St. Peters and was still there by the time we got up there, around 2:45am on Thursday morning. They did a CT scan and blood work which all came back looking normal. At that point, they felt like he was pretty stable and decided to make the transfer to Big Barnes, once they had a room ready for him. He was transported to Barnes St. Louis between 5:30-6:30 am Thursday morning.
By the time Mom and I got to the hospital, he was in a room in a part of the hospital we didn't even have patient rooms! Any other time he's been in the hospital, he's been on the south campus so naturally, that's where we went. Turns out they had him on the north campus, which is the same building he's gotten treatments and radiation in. He's even on the same floor where his doctors offices are, just on the other half! Mom and I had a nice 25 minute walk from one campus to the other.
Thursday morning he had an EEG which monitors brain activity. The test lasts about 20 minutes and records brain activity while the technician notes what he's doing physically. Those results came back fairly normal, which means during the time they were recording, he did not have any seizures. However, this only provides a snapshot of what's going on right at that moment, and doesn't give much information as to what might have happened in the past. They were able to rule out a stroke, based on his eye movements and a couple other things.
He didn't really eat much yesterday but we were able to feed him a couple bites of mashed potatoes and some orange sherbet. Later yesterday afternoon, he said he NEEDED some orange sherbet and ate another container of it. He also ate some Thrive, which is basically ice cream with protein and nutrients added to it. Around dinner time, we asked him if he'd like a strawberry Ensure drink and while he didn't say yes or no, I put the straw up to his lips and he drank the whole thing.
It's really hard to explain what Dad is like right now but I'll do the best I can. He is laying in a bed and tends to lean to the right, which seems to be a little bit better today. He'll look at you for a short amount of time, then he'll go and stare off into the corner or at the ceiling and not respond to any questions. During a neurology exam, they were yelling his name, pinching him, hitting him on the chest trying to get him to answer a question. Then out of nowhere, he'll answer a question or make a statement and he's back for just a couple minutes but then he's gone again. He has made several jokes over the past day or two but he really doesn't have a conversation. Even when he's off in his own world, the doctors have asked him to squeeze their hands and he'll do that.
At this point, they're testing for several things. He did have an MRI this morning, which we haven't gotten the official results but the doctor did say they look comparable to the MRI he had last Monday. Dr. Ansstas (his medical oncologist) was in this morning and said that he doesn't believe whatever is going on right now is caused from the necrosis that he's had. With how well he's been doing and no real change on the MRI, it doesn't make sense for that to be the cause. If there's anything different in the official results, Dr. Ansstas will let us know.
They put in a PIC line this morning, which is a different type of IV. It goes from just above the elbow into the chest area. They'll be able to draw blood from it, give him all his meds, and any contrast he may need for future testing. They've switched all his medication to IV meds because the nurse said he's not able to swallow pills right now. They've got him on fluids right now, and have given him several different vitamins and extra nutrition. They have increased his anti seizure medication and started antibiotics as a precaution until they figure out what's going on.
Right now he's in an isolation room, which means everyone else needs to wear a gown, mask, and gloves while in his room. They're concerned about infection or possible meningitis and will do a spinal tap at some point to rule those out. They're also starting another EEG, this time with video and audio recording, which will last approximately 24 hours. He's going to have many wires glued to his head and then they're going to put a head wrap on to maintain the location of the wires. Once they have all the recordings, they'll match up his brain activity with whatever is going on physically and try to find some correlation. With him having the 24 hour EEG, we have no ETA on when he'll have the spinal tap done.
He does seem to be hallucinating a little bit today, but he also hasn't slept at all since all of this started. His neurologist was going to make a note for them to give him meds to help him sleep tonight. When we got to the hospital today, I told him he needed to sleep and he said he couldn't because he needed to count the bolts. Mom and I think that he maybe thought he was at work. A few minutes after that, I asked him if he was at work and he said that "he's always working" but then he said he knew he was at Barnes St. Louis. I also asked him if he knew who I was, and he did.
At this point, Mom and I have decided that we don't want visitors coming to the hospital due to the fact that he's in isolation but once he is out, visitors will be welcome. We have no idea when he'll be home but obviously visitors will be welcomed then too. We do have decent cell service in this part of the hospital but if you text us and we don't respond, send us a Facebook message. There is Wi-Fi in the entire hospital and sometimes that's the best way to get a hold of us. We appreciate all the thoughts and prayers from everyone and I will continue to update the blog as we learn more!
Late Wednesday night (the 17th), Mom noticed Dad staring off at the fireplace in the living room and seemed very dazed and didn't really answer questions, other than an occasional yes or no. He said he knew who Mom was but couldn't remember her name or his name. Mom called an ambulance and while she was waiting for them, she called me. I was down in Springfield, MO for a fishing trip with my boyfriend and once she said the ambulance was there, Jim and I packed up our bags real quick and started the drive home. Dad was transported to Barnes Jewish in St. Peters and was still there by the time we got up there, around 2:45am on Thursday morning. They did a CT scan and blood work which all came back looking normal. At that point, they felt like he was pretty stable and decided to make the transfer to Big Barnes, once they had a room ready for him. He was transported to Barnes St. Louis between 5:30-6:30 am Thursday morning.
By the time Mom and I got to the hospital, he was in a room in a part of the hospital we didn't even have patient rooms! Any other time he's been in the hospital, he's been on the south campus so naturally, that's where we went. Turns out they had him on the north campus, which is the same building he's gotten treatments and radiation in. He's even on the same floor where his doctors offices are, just on the other half! Mom and I had a nice 25 minute walk from one campus to the other.
Thursday morning he had an EEG which monitors brain activity. The test lasts about 20 minutes and records brain activity while the technician notes what he's doing physically. Those results came back fairly normal, which means during the time they were recording, he did not have any seizures. However, this only provides a snapshot of what's going on right at that moment, and doesn't give much information as to what might have happened in the past. They were able to rule out a stroke, based on his eye movements and a couple other things.
He didn't really eat much yesterday but we were able to feed him a couple bites of mashed potatoes and some orange sherbet. Later yesterday afternoon, he said he NEEDED some orange sherbet and ate another container of it. He also ate some Thrive, which is basically ice cream with protein and nutrients added to it. Around dinner time, we asked him if he'd like a strawberry Ensure drink and while he didn't say yes or no, I put the straw up to his lips and he drank the whole thing.
It's really hard to explain what Dad is like right now but I'll do the best I can. He is laying in a bed and tends to lean to the right, which seems to be a little bit better today. He'll look at you for a short amount of time, then he'll go and stare off into the corner or at the ceiling and not respond to any questions. During a neurology exam, they were yelling his name, pinching him, hitting him on the chest trying to get him to answer a question. Then out of nowhere, he'll answer a question or make a statement and he's back for just a couple minutes but then he's gone again. He has made several jokes over the past day or two but he really doesn't have a conversation. Even when he's off in his own world, the doctors have asked him to squeeze their hands and he'll do that.
At this point, they're testing for several things. He did have an MRI this morning, which we haven't gotten the official results but the doctor did say they look comparable to the MRI he had last Monday. Dr. Ansstas (his medical oncologist) was in this morning and said that he doesn't believe whatever is going on right now is caused from the necrosis that he's had. With how well he's been doing and no real change on the MRI, it doesn't make sense for that to be the cause. If there's anything different in the official results, Dr. Ansstas will let us know.
They put in a PIC line this morning, which is a different type of IV. It goes from just above the elbow into the chest area. They'll be able to draw blood from it, give him all his meds, and any contrast he may need for future testing. They've switched all his medication to IV meds because the nurse said he's not able to swallow pills right now. They've got him on fluids right now, and have given him several different vitamins and extra nutrition. They have increased his anti seizure medication and started antibiotics as a precaution until they figure out what's going on.
Right now he's in an isolation room, which means everyone else needs to wear a gown, mask, and gloves while in his room. They're concerned about infection or possible meningitis and will do a spinal tap at some point to rule those out. They're also starting another EEG, this time with video and audio recording, which will last approximately 24 hours. He's going to have many wires glued to his head and then they're going to put a head wrap on to maintain the location of the wires. Once they have all the recordings, they'll match up his brain activity with whatever is going on physically and try to find some correlation. With him having the 24 hour EEG, we have no ETA on when he'll have the spinal tap done.
He does seem to be hallucinating a little bit today, but he also hasn't slept at all since all of this started. His neurologist was going to make a note for them to give him meds to help him sleep tonight. When we got to the hospital today, I told him he needed to sleep and he said he couldn't because he needed to count the bolts. Mom and I think that he maybe thought he was at work. A few minutes after that, I asked him if he was at work and he said that "he's always working" but then he said he knew he was at Barnes St. Louis. I also asked him if he knew who I was, and he did.
At this point, Mom and I have decided that we don't want visitors coming to the hospital due to the fact that he's in isolation but once he is out, visitors will be welcome. We have no idea when he'll be home but obviously visitors will be welcomed then too. We do have decent cell service in this part of the hospital but if you text us and we don't respond, send us a Facebook message. There is Wi-Fi in the entire hospital and sometimes that's the best way to get a hold of us. We appreciate all the thoughts and prayers from everyone and I will continue to update the blog as we learn more!
Monday, August 15, 2016
MRI Results-Mid August
First off, I want to say THANK YOU to all that have donated to Pedal the Cause.. I've hit my minimum fundraising but I would love to go above and beyond! Training has been going really well and I'm contemplating increasing my mileage but we shall see! The link is below if anyone still wants to donate!
http://stlouis.pedalthecause.org/riders_profile.jsp?MemberID=79161
We had appointments with neurology and medical oncology last Wednesday, August 10th, which happened to be the one year "anniversary" of Dad's surgery! There was no major changes comparing this MRI with the last, however the second spot appears to be getting larger. Both doctors agree that it's probably necrosis, although there's no way of knowing for sure (see the previous post for more information on necrosis).
Although this part of his brain is looking a little worse, the doctors said we have to look at that as only a piece of the puzzle and not the whole puzzle. Perfusion studies (how the body delivers blood) show that there's not much blood flow to the area and Dad is doing really well clinically. Looking at all of those pieces, the doctors seem to be really pleased with how Dad is responding to treatment. We will continue the same course of treatment as long as the disease continues to respond. Our next MRI/appointment round will be in 8 weeks!
http://stlouis.pedalthecause.org/riders_profile.jsp?MemberID=79161
We had appointments with neurology and medical oncology last Wednesday, August 10th, which happened to be the one year "anniversary" of Dad's surgery! There was no major changes comparing this MRI with the last, however the second spot appears to be getting larger. Both doctors agree that it's probably necrosis, although there's no way of knowing for sure (see the previous post for more information on necrosis).
Although this part of his brain is looking a little worse, the doctors said we have to look at that as only a piece of the puzzle and not the whole puzzle. Perfusion studies (how the body delivers blood) show that there's not much blood flow to the area and Dad is doing really well clinically. Looking at all of those pieces, the doctors seem to be really pleased with how Dad is responding to treatment. We will continue the same course of treatment as long as the disease continues to respond. Our next MRI/appointment round will be in 8 weeks!
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