After being sidetracked this afternoon to the Hershey Medical Center ER for a pulmonary embolism work-up (which came back gloriously normal), my dad is HOME. It was a looooong looooong loooong day. Did I mention long?
Between gathering everything together to get him out of rehab, spending the afternoon in the ER, getting him settled in at Meme's house, going back out to fill prescriptions and pick up some necessities, this little chickadee is SPENT.
My dad handled the day's activities really well though. I thought after all this hullabaloo (that's right I said "hullabaloo", it's a fun word, try it) that he would be extra fatigued and extra irritable. He was definitely tired but not as much as I expected and he only had a couple of irritable moments. One was when someone tried to take his pillow away and then about five times when I was trying to fix his hair. He HATES when I fuss over his hair but I swear it's like a compulsion. His hair defies gravity right now. It's like supercharged static electric bedhead. I feel compelled to comb it but I have to be really quick to sneak the comb in before he swats me away. When we were getting ready to leave the ER, Marty was the one who got Dad out of bed and into the wheelchair. Marty said "I'll help you get your coat on, but don't worry - I won't touch your hair". Apparently that went over well, my dad gave a big grin and turned to shake his hand.
He slept a lot this evening but got up to eat a big dinner. After just one evening at home I already notice a change in his affect. He's a bit brighter, more engaged. Our conversations were longer and more two-sided.
Tonight I'm going to sleep over here at Meme's on the couch to make sure that his first night out of the hospital goes well, but I have no doubt it will. It's kind of like a fun sleepover!
Friday, December 30, 2011
Thursday, December 29, 2011
The Old Oak Tree
My cousin Shannon recently sent me this poem in a card and it spoke to me on so many levels. I've wanted to share it here for awhile now:
A mighty wind blew night and day.
It stole the oak tree's leaves away.
Then snapped its boughs and pulled its bark
until the oak was tired and stark.
But still the oak tree held its ground
while other trees fell all around.
The weary wind gave up and spoke,
"How can you still be standing, Oak?"
The oak tree said, "I know that you
can break each branch of mine in two,
carry each leaf away,
shake my limbs, and make me sway.
But I have roots stretched in the earth,
growing stronger since my birth.
You'll never touch them, for you see,
They are the deepest part of me.
Until today, I wasn't sure
of just how much I could endure.
But now I've found, with thanks to you,
I'm stronger than I ever knew".
12/29
Tomorrow is the big day! We've spent the last couple of days gathering things together for my dad's discharge, talking to all the doctors/therapists/nurses, arranging follow-up visits, and being generally quite busy. I'm just excited that after a total of 26 days of hospitalization/rehab that he will get to go HOME.
Now, as promised - photos from our visit to Dad on Christmas day!
Now, as promised - photos from our visit to Dad on Christmas day!
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| Finn in his Christmas sweater vest |
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| Zoey & Pop Pop, we brought him Christmas breakfast |
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| The kids gave him handmade and handpainted gifts |
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| Zoey & Finn love their Pop Pop |
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| Finn, Daddy, and Zoey having coloring fun |
Tuesday, December 27, 2011
12/27
Dad is being discharged Friday!!!!! Although he will likely still be tired and fatigued for several more weeks and has limitations with what he can do, he's able to get around well enough now to go home and manage his care outpatient. This is great news! Now, the doctors and therapists told me that their first choice is to have my dad come home with me. However, my Dad wants to go back to his room at Meme's house and Meme feels strongly about being comfortable with him coming to her house. I do think that going back to his familiar bedroom and surroundings will be beneficial to him. Those things will likely facilitate his comfort and encourage his return to daily life. So the plan is to have him go back home to Meme's and I'll go there a ton every day to help out. I'll also drive him to his outpatient rehab, which will be twice a week for both speech therapy and physical therapy. I talked to his healthcare team and they're on board with that plan. I can't wait for Friday! I think he'll be MUCH happier being at home versus a hospital/rehab setting.
Monday, December 26, 2011
12/26
Merry belated Christmas! I missed making a blog entry yesterday due to being so busy but we had a great holiday. We visited Dad in the morning, opened gifts and had breakfast. All year his number one Christmas wish has been for the Harry Potter box set of DVDs, he remembered that yesterday and gave a big smile when he opened them. I'm thinking of finding a DVD player to bring in so that he can watch them in the evening. The kids also made him a couple of handmade and hand painted wooden gifts. When we gave him a little wooden chest that the kids painted, Zoey said "This is for Pop Pop so that he can feel better!". So cute!! I visited him again in the evening, he actually had several visitors which was really nice. I was worried that he may feel a bit isolated over the holiday, but there was so much family representation, it was great. I took a few pictures, I'll try to put them up tomorrow.
Overall he's really doing well. Until this point he's really resisted getting out of bed much at all except for the therapy sessions, I think because he's just so tired. But I've been doing a lot of encouragement and a lot of talking to him and I saw a difference today. He got up and brushed teeth in the bathroom instead of in the bed AND... he shaved today! Twice! You may not know this but I've been pestering my dad on a daily basis to shave and clean up his beard. I know he's tired, but I think looking scruffy just encourages you to lay in bed more, whereas feeling all clean & pretty (or handsome in his case!) gives you more motivation to get up and do things. So either because he's feeling better or getting tired of my nagging, he said out of the blue "I think I'll shave today". He walked in the bathroom and did it all himself, and much to my relief didn't cut his face off or require an ER visit. The guy has been in bed for three weeks, I had no idea how good his aim would be with a sharp razor. Thankfully he did fine.
The only thing is that he's coming around enough to start to feel really irritated by being cooped up there. He's a very independent person so it goes against his grain to follow someone else's rigid schedule. He gets impatient with the fact that they have a bed alarm on him when he's in bed, it starts screeching when he gets out of bed alone. (Because he's still a bit unsteady on his feet, they just don't want him walking anywhere without staff keeping an eye on him to make sure he doesn't fall). He very much wants to get back to his own schedule and I can tell he's irritated by feeling like he's being "babysat". But honestly that's a great sign. It's probably frustrating for the rehab staff (especially when he pulled out his PICC line, again, because it was beeping for too long and he was tired of it) but it shows that he's making progress by becoming aware of his surroundings and yearning for his own routine and pace. And he's much more aware than people realize. I think sometimes people might assume that because he's quiet and lays in bed so much that he may not be processing everything, but he really is taking in a great deal. Sure, a lot of times when he's quiet and in bed with his eyes closed, he's sleeping. But many times he's thinking. He'll be laying there and then suddenly say "what's the name of the river that runs through Harrisburg?". Last night at 2am he rang the call bell and asked the nurse "what's the name of the German car that begins with an "s"? She probably thought that was a really bizarre thing to do at 2am. I personally think that it's awesome. I have no doubt that he was laying there, thinking and processing, putting his brain to work. So woohoo for progress and for him thinking of German cars at 2am!
Saturday, December 24, 2011
12/24 11:30pm
This blog post gets a big giant "WOOHOO!!" written all over it.
My dad had a great night. It was by far the most "himself" I've seen him yet. We visited him tonight and he was alert and so much more interactive. Until now his affect was pretty flat and he mostly only talked when asked direct questions, and gave very brief responses, often needing a little prompting. Tonight he was much brighter, more alert, and actually engaged in conversation. It was absolutely awesome to see him smiling and laughing a bit. For the first time he started asking questions and initiating more conversations too, wondering where his truck is, directing us to find the Christmas presents he had bought for the kids. Although he couldn't remember exactly what he bought the kids, he knew where the presents were located. He ate a great dinner. AND he got in the shower tonight with no resistance whatsoever. I'm sure after all that he was definitely spent and probably ended up sleeping for the rest of the night.
But in honor of such a fantastic evening, this blurry silly photo is me doing the Dance of Joy in his room:
My dad had a great night. It was by far the most "himself" I've seen him yet. We visited him tonight and he was alert and so much more interactive. Until now his affect was pretty flat and he mostly only talked when asked direct questions, and gave very brief responses, often needing a little prompting. Tonight he was much brighter, more alert, and actually engaged in conversation. It was absolutely awesome to see him smiling and laughing a bit. For the first time he started asking questions and initiating more conversations too, wondering where his truck is, directing us to find the Christmas presents he had bought for the kids. Although he couldn't remember exactly what he bought the kids, he knew where the presents were located. He ate a great dinner. AND he got in the shower tonight with no resistance whatsoever. I'm sure after all that he was definitely spent and probably ended up sleeping for the rest of the night.
But in honor of such a fantastic evening, this blurry silly photo is me doing the Dance of Joy in his room:
Oh, and thanks for sending all the cards to him! He has been reading them every day as they come in. And they make for nice decor in the rom:
12/24
Although he continues to be tired and need a lot of encouragement to get out of bed, he got a glowing recommendation from the speech therapist this morning. I wasn't at that particular session, but she said that he scored 100% on all the problems she had him working on. She said that his attention to detail is improving and that next week she wants to start more complex activities.
I was there for his OT session, which went well. He spent some time doing arm exercises on a machine that sort of looked like pedals on a bike. You grab the handles with each hand and push forward/cycle as if you were pedaling a bike, just with your hands. Then he worked on a large puzzle and did perfectly. It was a large empty mat with rows of holes and he had a big bucket of colored pins. Then they gave him a photograph with specific design/color patterns that he had to duplicate with the colored pins on his mat.
In PT he did some hip exercises, practiced more with the stairs, and did a lot of walking.
Because today was a weekend, his schedule was a bit different and they had him do all three sessions back-to-back. I was initially worried about that. He's just so fatigued I thought there was no way he would make it through. I thought for sure by the 3rd hour he was going to tell that therapist exactly where she could shove that bucket of colored pins. But he chugged along and did well. He didn't even complain that much about wanting to get back in bed, ha.
We are a bit concerned that he's still not eating enough though. Due to the fatigue, it's hard to get him motivated to do a lot of things and eating is one of them. He's lost about 20 pounds since this all started. So I collaborated with the nurses and dietician, he's going to get some nutrition shakes every day and they're going to try to push him to eat small snacks throughout the day. I plan to do my part by smuggling in cookies. Tonight for Christmas Eve, I have a huge platter of shrimp, stuffed shells, meatballs, and various desserts to bring in. That's gotta be better than hospital food!
I was there for his OT session, which went well. He spent some time doing arm exercises on a machine that sort of looked like pedals on a bike. You grab the handles with each hand and push forward/cycle as if you were pedaling a bike, just with your hands. Then he worked on a large puzzle and did perfectly. It was a large empty mat with rows of holes and he had a big bucket of colored pins. Then they gave him a photograph with specific design/color patterns that he had to duplicate with the colored pins on his mat.
In PT he did some hip exercises, practiced more with the stairs, and did a lot of walking.
Because today was a weekend, his schedule was a bit different and they had him do all three sessions back-to-back. I was initially worried about that. He's just so fatigued I thought there was no way he would make it through. I thought for sure by the 3rd hour he was going to tell that therapist exactly where she could shove that bucket of colored pins. But he chugged along and did well. He didn't even complain that much about wanting to get back in bed, ha.
We are a bit concerned that he's still not eating enough though. Due to the fatigue, it's hard to get him motivated to do a lot of things and eating is one of them. He's lost about 20 pounds since this all started. So I collaborated with the nurses and dietician, he's going to get some nutrition shakes every day and they're going to try to push him to eat small snacks throughout the day. I plan to do my part by smuggling in cookies. Tonight for Christmas Eve, I have a huge platter of shrimp, stuffed shells, meatballs, and various desserts to bring in. That's gotta be better than hospital food!
Friday, December 23, 2011
12/23
Between getting some last-minute things together for Christmas and having to work tonight, I didn't get to spend a whole lot of time with Dad today. But I sat with him for his PT session and he did really well. He's walking steadier and not shuffling his feet now. He practiced steps for the first time today, he did ok. He tried to go up them a little too fast and was a bit unsteady. Not bad for his first attempt though!
Longer update coming tomorrow.
Thursday, December 22, 2011
12/22
Dad was really engaged and alert in speech therapy this morning, they had him doing a lot of math problems. He added and multiplied several numbers together, all with decimal points. They gave him the option to use a calculator, which he declined in favor of doing them in his head. However, he got tired after that and wasn't as motivated in PT. He still did well with his exercises, but he made sure we all knew that he would rather be in bed with a heating pad on his neck. The neck pain/stiffness is still very much present. For those of you who don't know, neck pain/stiffness goes along with his brain infection. This happens when the meninges (the membranes that cover the brain) are irritated. When he first became ill, his neck was completely rigid and locked to the side. It was so stiff we couldn't even move it. As the days have gone by and the medication has taken effect, it has been improving. He has a good range of motion and better mobility with it now. But it still causes him a lot of discomfort.
Oh, and while I'm thinking about it, I wanted to pass on that the speech therapists think it's a good idea (and I agree) to limit visiting during his speech therapy sessions. All of the cognitive exercises are a big mental drain, it takes all of his concentration on them. Since right now he's very sensitive to distraction, it's probably a better idea not to visit during those sessions (9-10am). But starting at 10am, please come on down and visit! The more friendly faces the better.
Oh, and while I'm thinking about it, I wanted to pass on that the speech therapists think it's a good idea (and I agree) to limit visiting during his speech therapy sessions. All of the cognitive exercises are a big mental drain, it takes all of his concentration on them. Since right now he's very sensitive to distraction, it's probably a better idea not to visit during those sessions (9-10am). But starting at 10am, please come on down and visit! The more friendly faces the better.
Wednesday, December 21, 2011
12/21
Today was the first full day of rehab. It was long, therapeutic, illuminating, and exhausting for my dad. By the end of the day, he was SPENT.
His days at rehab will have a predictable schedule, he has a set routine for all of his therapies. I think Dad will really respond well to this, if you know him at all then you know he thrives on predictable daily routines. So the days will look like this:
7:30 - Breakfast
9:00 - Speech Therapy
10:00 - Physical Therapy
11:30 - Lunch
1:00 - Occupational Therpay
4:30 - Dinner
For breakfast and lunch he eats in one of the activity rooms with a group of other patients and the speech therapists. He does well eating on his own, but he'll eat in there mostly just to get supervision to make sure he eats enough. He's so fatigued that he often doesn't have a lot of energy to eat, so that's definitely an area that we've been encouraging.
I've learned a lot already about the speech therapy hour. Honestly before today I really had no idea what speech therapy even was, I thought it was just literally about speech and talking. But it's SO much more. It's heavily about cognition, memory/recollection, language usage, attention to detail, executive/higher level thinking. Today was his official evaluation and he did quite well, I didn't know he was already capable of all this stuff until today when I watched his evaluation. They asked him all the basic orientation questions, which he got correct. They showed him flashcards of objects, he answered those all correctly. Then they conducted an official cognition test. He had to read a paragraph and answer questions about it, listen to a story and answer questions, do two mazes, then do spatial relations exercises. For one, there were circles and triangles of varying sizes on a paper, he had to draw a line from the smallest circle to the smallest triangle, then to the next largest circle and the next largest triangle, and so on. I personally found it challenging but he did just fine. His biggest problem was speed. Each section was timed and he usually took longer than the allotted time to think through the answers. He usually got everything correct, it just took him a little while to reach the answer. This doesn't bother me though, he's still so tired and trying to heal. The fact that he got the answers RIGHT is what I think is awesome. And get this, one of his exercises was to to name as many words beginning with the letter "M" as he could within 60 seconds. If it were me doing the test, I would have named things like money, man, mail, mom. Easy stuff. What are some of the words my dad came up with? Mammogram, monotone, manuscript, maelstrom. Seriously - MAELSTROM. Even with a swollen infected brain, he named maelstrom as an "m" word. So I'd say his thinking cap is doing pretty darn good, all things considered.
At the end of that hour though he was VERY tired, so they didn't push him all that much in PT. He walked around the gym with his walker a couple of times and did some leg exercises. I missed the OT session, but they said it went ok. I came back at dinner time, we smuggled him in some junky fast food and brought Zoey and Finn to see him. Once again, he lit up at seeing his grandkids. He became more alert, smiled and watched them play, and really enjoyed Zoey sitting on his lap to eat.
It wasn't long before he was tired again though, so the kids went home with Marty and I made it my mission to get Dad into the shower. Today marked 17 days since he'd had a proper shower, those bed sponge baths just don't do the trick. I demanded that he let the aide help him wash the funk off, for ALL of our sakes. Well this was no easy feat. My dad is ridiculously stubborn when he has his mind set on (or against) something and he was NOT in the mood to get up and take a shower. After much encouragement, begging, and finally bribery he agreed and the aide helped him get washed up. Although he wouldn't admit it at the time, he had to feel much better getting cleaned up. Now hopefully later this week he'll let me help him trim/shave his beard and he'll look good as new.
Overall, I think one of his biggest barriers right now is the fatigue. He's constantly so tired and almost always has his eyes shut. The fatigue prevents him from thinking quickly, prevents him from being in the mood to eat much, prevents him from doing much physical, prevents him from being attentive. I wish I knew how long he would be so tired, but I'm guessing it's like everything else with this healing process - it just takes an indeterminate amount of time. And patience. Lots and lots of that.
His days at rehab will have a predictable schedule, he has a set routine for all of his therapies. I think Dad will really respond well to this, if you know him at all then you know he thrives on predictable daily routines. So the days will look like this:
7:30 - Breakfast
9:00 - Speech Therapy
10:00 - Physical Therapy
11:30 - Lunch
1:00 - Occupational Therpay
4:30 - Dinner
For breakfast and lunch he eats in one of the activity rooms with a group of other patients and the speech therapists. He does well eating on his own, but he'll eat in there mostly just to get supervision to make sure he eats enough. He's so fatigued that he often doesn't have a lot of energy to eat, so that's definitely an area that we've been encouraging.
I've learned a lot already about the speech therapy hour. Honestly before today I really had no idea what speech therapy even was, I thought it was just literally about speech and talking. But it's SO much more. It's heavily about cognition, memory/recollection, language usage, attention to detail, executive/higher level thinking. Today was his official evaluation and he did quite well, I didn't know he was already capable of all this stuff until today when I watched his evaluation. They asked him all the basic orientation questions, which he got correct. They showed him flashcards of objects, he answered those all correctly. Then they conducted an official cognition test. He had to read a paragraph and answer questions about it, listen to a story and answer questions, do two mazes, then do spatial relations exercises. For one, there were circles and triangles of varying sizes on a paper, he had to draw a line from the smallest circle to the smallest triangle, then to the next largest circle and the next largest triangle, and so on. I personally found it challenging but he did just fine. His biggest problem was speed. Each section was timed and he usually took longer than the allotted time to think through the answers. He usually got everything correct, it just took him a little while to reach the answer. This doesn't bother me though, he's still so tired and trying to heal. The fact that he got the answers RIGHT is what I think is awesome. And get this, one of his exercises was to to name as many words beginning with the letter "M" as he could within 60 seconds. If it were me doing the test, I would have named things like money, man, mail, mom. Easy stuff. What are some of the words my dad came up with? Mammogram, monotone, manuscript, maelstrom. Seriously - MAELSTROM. Even with a swollen infected brain, he named maelstrom as an "m" word. So I'd say his thinking cap is doing pretty darn good, all things considered.
At the end of that hour though he was VERY tired, so they didn't push him all that much in PT. He walked around the gym with his walker a couple of times and did some leg exercises. I missed the OT session, but they said it went ok. I came back at dinner time, we smuggled him in some junky fast food and brought Zoey and Finn to see him. Once again, he lit up at seeing his grandkids. He became more alert, smiled and watched them play, and really enjoyed Zoey sitting on his lap to eat.
It wasn't long before he was tired again though, so the kids went home with Marty and I made it my mission to get Dad into the shower. Today marked 17 days since he'd had a proper shower, those bed sponge baths just don't do the trick. I demanded that he let the aide help him wash the funk off, for ALL of our sakes. Well this was no easy feat. My dad is ridiculously stubborn when he has his mind set on (or against) something and he was NOT in the mood to get up and take a shower. After much encouragement, begging, and finally bribery he agreed and the aide helped him get washed up. Although he wouldn't admit it at the time, he had to feel much better getting cleaned up. Now hopefully later this week he'll let me help him trim/shave his beard and he'll look good as new.
Overall, I think one of his biggest barriers right now is the fatigue. He's constantly so tired and almost always has his eyes shut. The fatigue prevents him from thinking quickly, prevents him from being in the mood to eat much, prevents him from doing much physical, prevents him from being attentive. I wish I knew how long he would be so tired, but I'm guessing it's like everything else with this healing process - it just takes an indeterminate amount of time. And patience. Lots and lots of that.
Tuesday, December 20, 2011
12/20
Goodbye hospitalization, hello rehab! We are all so glad to be out of the hospital and on to the next phase of Dad's recovery process.
But before I talk about that, I've had some people asking for an address to mail cards to my Dad. I really think he would enjoy getting them, the cards he's already received are lined up on his window sill and certainly bring some life and warmth to his room. Especially during this holiday time. So if you'd like to mail him a card:
John Urich
Room 289 W
Helen M Simpson Rehabilitation Hospital
4300 Londonderry Road
Harrisburg, PA 17109
As you know, the rehab hospital is part of Community General Osteopathic Hospital, but they said it's not necessary to include that in the address.
Ok, now that's out of the way,what a big day today was! I went to HMC early this morning to pick him up and had conversations with his neurologist, internal medicine doctor, and infectious disease doctor. Everyone said the same thing, that he's having a positive recovery but that it will just continue to take time. His Keppra (antiseizure medicine) dose was decreased and I found out that he will stay on it for 6 months. He has had no seizure activity at all since his initial diagnosis, but due to the fact that the area of his brain that's injured is a hot-spot for seizures and that he still has a good bit of brain swelling/irritation he needs to take the medicine as a precaution. He will receive the Acyclovir (antiviral medicine) in his PICC line until at least December 26th. He will follow up with the HMC neurologist and infectious disease doctors in mid-January. No further MRI or LP (lumbar puncture) is needed at this time as long as he continues to improve clinically.
He's still so tired and wants to spend the majority of the day in bed with his eyes closed, so it was a big day for him getting transferred. After talking to a million different people at HMC, I loaded him in the car to drive to Osteo. I was so excited to be blowing that clambake, I think I drove away a little... ahem, vigorously. He perked up to tell me to take it easy and quit driving crazy. I told him if I had known that's all it took to wake him up, I would have started doing donuts in the parking lot much earlier.
We got him settled in his new room, he has the bed by the window. He had a roommate this morning but they were discharged, so I'm not sure when/if he may be getting another roommate. His new doctor, Dr. Morganstein, came to see him right away. I really like Dr. Morganstein, he's caring, thorough, really smart, and just seems like a great doctor. He also had an assessment by the Osteo neurologist, who will be seeing him while he's at the rehab facility. Then he went down to the gym for evaluations by the PT and OT therapists. He did really well, once again I'm happy to post that he improves every single day. He still used the walker, but he walked even farther today than yesterday. He was steadier on his feet and faster too. They had him do exercises to demonstrate his fine motor skills and overall strength. Although I can tell he's definitely still weak, I thought he did really well considering he's been in a hospital for the past 15 days, the vast majority of that time laying in bed. They also asked him a lot of questions to assess his memory and cognition. He answered them all correctly (though it often took some time for the answer to come to him) except he couldn't recall his phone number or email address. But I had to laugh because the physical therapist asked him what his number one goal was that he wanted to work on while at the rehab hospital, and his answer was "to escape".
After getting back to his room and eating dinner, he had a particularly alert period. As I mentioned before, he's typically VERY tired. Healing the brain is so intensive that it's normal for him to be fatigued and want to sleep a lot. So it's really nice when he perks up, opens his eyes, and has a nice period of alertness. Tonight was the closest I've seen him to his old self. His affect was brighter, he was quicker to interact, and for the first time he actually initiated a little dialogue. Normally you have to ask him a direct question to get him to say much. He looked at me out of the blue and said "Just so you know, my phone number is ____ and my email address is jurich347@gmail.com" (I had to put a blank for the phone number because I can't even remember it, ha!). This is SO my dad. I have no doubt that when he was asked those two questions in PT and couldn't remember the answers right away, it bothered him. And it's no surprise that his brain went to work on figuring it out and wouldn't rest until it did.
We were also talking about how my dad's boss Rick was going to come visit this week and my grandmother said "Oh, is he the one from Chicago?" and he immediately corrected her and said "Philadelphia". We were talking about his co-worker Greg and how he sent two giant bags of this DELICIOUS coffee that's unique to Louisiana, I couldn't remember the name of the brand and Dad was quick to tell me what it was. And he got a big chuckle out of an email from Greg that I read aloud, over all their inside jokes. Simple things like this would have taken longer for him to react to just a few days ago, so it's encouraging to see positive progress. Then after about half an hour of that wakeful period, he zonked back out to sleep for pretty much the rest of the night.
Tomorrow starts his first official day at rehab. He will have at least three hours of therapy a day, broken up into smaller chunks of time. He will meet with the speech therapist at 9am for an evaluation of his speech and swallowing. Then at 10am he will have his first full one-hour PT session. He'll have an hour-long OT session in the afternoon. I'm looking forward to seeing how this new level of activity will help improve his recovery.
But before I talk about that, I've had some people asking for an address to mail cards to my Dad. I really think he would enjoy getting them, the cards he's already received are lined up on his window sill and certainly bring some life and warmth to his room. Especially during this holiday time. So if you'd like to mail him a card:
John Urich
Room 289 W
Helen M Simpson Rehabilitation Hospital
4300 Londonderry Road
Harrisburg, PA 17109
As you know, the rehab hospital is part of Community General Osteopathic Hospital, but they said it's not necessary to include that in the address.
Ok, now that's out of the way,what a big day today was! I went to HMC early this morning to pick him up and had conversations with his neurologist, internal medicine doctor, and infectious disease doctor. Everyone said the same thing, that he's having a positive recovery but that it will just continue to take time. His Keppra (antiseizure medicine) dose was decreased and I found out that he will stay on it for 6 months. He has had no seizure activity at all since his initial diagnosis, but due to the fact that the area of his brain that's injured is a hot-spot for seizures and that he still has a good bit of brain swelling/irritation he needs to take the medicine as a precaution. He will receive the Acyclovir (antiviral medicine) in his PICC line until at least December 26th. He will follow up with the HMC neurologist and infectious disease doctors in mid-January. No further MRI or LP (lumbar puncture) is needed at this time as long as he continues to improve clinically.
He's still so tired and wants to spend the majority of the day in bed with his eyes closed, so it was a big day for him getting transferred. After talking to a million different people at HMC, I loaded him in the car to drive to Osteo. I was so excited to be blowing that clambake, I think I drove away a little... ahem, vigorously. He perked up to tell me to take it easy and quit driving crazy. I told him if I had known that's all it took to wake him up, I would have started doing donuts in the parking lot much earlier.
We got him settled in his new room, he has the bed by the window. He had a roommate this morning but they were discharged, so I'm not sure when/if he may be getting another roommate. His new doctor, Dr. Morganstein, came to see him right away. I really like Dr. Morganstein, he's caring, thorough, really smart, and just seems like a great doctor. He also had an assessment by the Osteo neurologist, who will be seeing him while he's at the rehab facility. Then he went down to the gym for evaluations by the PT and OT therapists. He did really well, once again I'm happy to post that he improves every single day. He still used the walker, but he walked even farther today than yesterday. He was steadier on his feet and faster too. They had him do exercises to demonstrate his fine motor skills and overall strength. Although I can tell he's definitely still weak, I thought he did really well considering he's been in a hospital for the past 15 days, the vast majority of that time laying in bed. They also asked him a lot of questions to assess his memory and cognition. He answered them all correctly (though it often took some time for the answer to come to him) except he couldn't recall his phone number or email address. But I had to laugh because the physical therapist asked him what his number one goal was that he wanted to work on while at the rehab hospital, and his answer was "to escape".
After getting back to his room and eating dinner, he had a particularly alert period. As I mentioned before, he's typically VERY tired. Healing the brain is so intensive that it's normal for him to be fatigued and want to sleep a lot. So it's really nice when he perks up, opens his eyes, and has a nice period of alertness. Tonight was the closest I've seen him to his old self. His affect was brighter, he was quicker to interact, and for the first time he actually initiated a little dialogue. Normally you have to ask him a direct question to get him to say much. He looked at me out of the blue and said "Just so you know, my phone number is ____ and my email address is jurich347@gmail.com" (I had to put a blank for the phone number because I can't even remember it, ha!). This is SO my dad. I have no doubt that when he was asked those two questions in PT and couldn't remember the answers right away, it bothered him. And it's no surprise that his brain went to work on figuring it out and wouldn't rest until it did.
We were also talking about how my dad's boss Rick was going to come visit this week and my grandmother said "Oh, is he the one from Chicago?" and he immediately corrected her and said "Philadelphia". We were talking about his co-worker Greg and how he sent two giant bags of this DELICIOUS coffee that's unique to Louisiana, I couldn't remember the name of the brand and Dad was quick to tell me what it was. And he got a big chuckle out of an email from Greg that I read aloud, over all their inside jokes. Simple things like this would have taken longer for him to react to just a few days ago, so it's encouraging to see positive progress. Then after about half an hour of that wakeful period, he zonked back out to sleep for pretty much the rest of the night.
Tomorrow starts his first official day at rehab. He will have at least three hours of therapy a day, broken up into smaller chunks of time. He will meet with the speech therapist at 9am for an evaluation of his speech and swallowing. Then at 10am he will have his first full one-hour PT session. He'll have an hour-long OT session in the afternoon. I'm looking forward to seeing how this new level of activity will help improve his recovery.
Monday, December 19, 2011
12/19 2:30pm
This is a quick post from my phone, I'm in my dad's room and headed down to work in the ER in a couple minutes. But big news - he is being discharged from HMC to Osteo Rehab tomorrow 12/20 at 10am!! I'm so excited. Further news to come tomorrow but I wanted to get the word out about his transfer. He's still in 6255 at HMC and feel free to visit anytime today/tonight. Then I'll let everyone know when he's all settled in at Osteo and ready for your visits there. Yay!
Sunday, December 18, 2011
12/18 1:00pm
Dad had a good morning. We had some "salon time", washing his hair and giving him a pedicure. I threatened to paint his toenails since he was defenseless, but I was a good girl and resisted. He was able to brush his teeth and floss all on his own. He had his best PT session yet, after doing some leg exercises he walked with a walker out of his room and halfway down the hall. Then he came back to his room and walked the same distance again only this time without the walker and only using the assistance of the physical therapist. He's getting stronger every day. He also had a visit from Meme and Gary Hall, it's great to have such wonderful family and friends to lift his spirits.
He's also talking a bit more, using more complex sentences and words. Although he's definitely still foggy, particularly with his short term memory. He seems pretty good with recalling a lot of things from his long term memory, but for example each day I need to remind him why he's in the hospital and what the plan is. From what I understand of his encephalitis, that is very much to be expected. He's also still very tired and spends a lot of time sleeping, also consistent with recovering from encephalitis. In addition to the physical fatigue of being in bed for 14 days now, his brain gets tired quickly and needs a lot of rest to recover and rebuild. I notice he's quick to get overstimulated. He likes a little bit of music, but before very long he needs it turned off because it's just too much for him. He can concentrate on brief direct conversations for a short time when there are no other distractions, but when there are other people talking in the background it gets more difficult for him. If you ask him a question right now, it's better to ask him a question with clear specific choices. For example, if I ask an open-ended question like "what do you want for breakfast?", his brain starts working hard thinking first what breakfast is, then cataloguing every breakfast item he can remember, and THEN trying to decide a preference between all of those things. It's something that is incredibly simple for all of us, but very taxing for someone whose brain is healing. So right now it's much better to give him clear choices and say "would you like oatmeal or would you like yogurt?".
But again, today is better than yesterday. I know that his recovery is expected to take many more weeks and months, he may likely still be getting things back after a year. But he continues to head in the right direction.
He's also talking a bit more, using more complex sentences and words. Although he's definitely still foggy, particularly with his short term memory. He seems pretty good with recalling a lot of things from his long term memory, but for example each day I need to remind him why he's in the hospital and what the plan is. From what I understand of his encephalitis, that is very much to be expected. He's also still very tired and spends a lot of time sleeping, also consistent with recovering from encephalitis. In addition to the physical fatigue of being in bed for 14 days now, his brain gets tired quickly and needs a lot of rest to recover and rebuild. I notice he's quick to get overstimulated. He likes a little bit of music, but before very long he needs it turned off because it's just too much for him. He can concentrate on brief direct conversations for a short time when there are no other distractions, but when there are other people talking in the background it gets more difficult for him. If you ask him a question right now, it's better to ask him a question with clear specific choices. For example, if I ask an open-ended question like "what do you want for breakfast?", his brain starts working hard thinking first what breakfast is, then cataloguing every breakfast item he can remember, and THEN trying to decide a preference between all of those things. It's something that is incredibly simple for all of us, but very taxing for someone whose brain is healing. So right now it's much better to give him clear choices and say "would you like oatmeal or would you like yogurt?".
But again, today is better than yesterday. I know that his recovery is expected to take many more weeks and months, he may likely still be getting things back after a year. But he continues to head in the right direction.
Saturday, December 17, 2011
12/17
Tonight's update is going to be a quick one, after a long day I'm falling asleep on my laptop.
I met with his doctors this afternoon, they seem optimistic about transferring him to Osteo Rehab early next week.
The attending physician is FINALLY putting in the official neurology consult, to have him evaluated by the HMC neuro team. I asked two questions, which his general medicine MD is going to defer to the neuro service. 1) Can we discontinue his Keppra (antiseizure medicine) since he's had no evidence of seizure activity and his last EEG was clear. 2) At what point do we need to re-scan his head, either CT or MRI, to determine how the infectious process is clearing? Hopefully we'll get those answers in the next day or two.
He's still very tired and spends much of the day sleeping, but did better walking today. I think he's going to do really well with the PT in rehab.
Ok, I'm spent. More of an update coming tomorrow!
I met with his doctors this afternoon, they seem optimistic about transferring him to Osteo Rehab early next week.
The attending physician is FINALLY putting in the official neurology consult, to have him evaluated by the HMC neuro team. I asked two questions, which his general medicine MD is going to defer to the neuro service. 1) Can we discontinue his Keppra (antiseizure medicine) since he's had no evidence of seizure activity and his last EEG was clear. 2) At what point do we need to re-scan his head, either CT or MRI, to determine how the infectious process is clearing? Hopefully we'll get those answers in the next day or two.
He's still very tired and spends much of the day sleeping, but did better walking today. I think he's going to do really well with the PT in rehab.
Ok, I'm spent. More of an update coming tomorrow!
Friday, December 16, 2011
12/16
What. A. Day. This day was a huge mix of great joy and enormous frustration.
First, I went to Penn State Hershey Rehab at 10am (as I was instructed by the rehab liaison) for an appointment to tour the facility. Apparently no one was available and I ended up sitting in the lobby for almost an hour. Finally I checked in with the secretary (for the 3rd time) only to be told "well, I don't know if anyone will be free any time soon, I guess you could just come back later". Frustrating, given that I currently have about 35 hours worth of things to do in a 24 hour day, so my hours are precious. And I walked out of the building to find a parking ticket on my car.
Then I found out that several faxes that I sent out two days ago, containing important and time-sensitive information about my dad's care, were never received. Apparently there was a problem with the fax I was using and didn't realize it. Or maybe I was just sleep-deprived and didn't have the brain capacity to push the buttons correctly. Either way, it caused a delay in things that I needed to get done.
I visited Dad later in the morning and found out that he had somehow pulled out his brand new PICC line in the middle of the night. So for now he has a peripheral IV in his hand, but will need to get another PICC line placed in the next couple of days. The rest of the visit went really well though. We washed his hair and I primped him for what I call his "fancy salon time". Then he stood up with assistance and easily walked (with help) over to his recliner to sit down. He ate a great lunch. PT and OT came and he did really well with his exercises and walking with a walker. Great continued improvement, I'm so proud of him.
Then I went and did tours of both Penn State Rehab and the Osteopathic Hospital Rehab. I'll just say up front that we're going with Osteo. I really did keep an open mind about Penn State Rehab, despite the incident this morning. I actually would have preferred to go with them, because that would have been a really good continuity of care from HMC. However, Penn State Rehab seems much more geared towards people with physical injuries, like patients recovering from a knee or hip replacement, instead of people recovering from brain injuries. There are lots of resources for people recovering from physical injuries and it seems like a bright, new, friendly place to do that. But there's a "brain injury" wing and it's just kind of creepy. It's a locked hallway and it honestly sort of feels like jail. Nothing like trying to get the rest of your memory back while spending time in rehab prison! Also, they are pretty strict with visiting hours. They are from 8am - 8pm, however they "strongly discourage" any visiting outside of 4pm - 8pm. Family is not permitted to be present during any of the daily therapy sessions. The good thing about it though is that all the patient rooms are private. That's nice. But the private rooms and good continuity of care is really all that it had going for it.
Osteo on the other hand, is ALL ABOUT incorporating family into a patient's therapy and plan of care. They strongly encourage family to be present during any and all PT/OT sessions so that the family is better equipped to facilitate a patient's care at home. They seem to really believe in a cooperative effort between staff and family. There are no visiting hours and no visiting restrictions, family/friends may be present at any time. There are no specific wings, the rooms are organized in a big square around the nursing station. They are shared double-rooms though, that's the one thing I don't like. Private rooms would be much nicer. But the layout is really nice and there are so many places for people to hang out socially in between sessions, there are TV rooms, a piano room, comfy places to be outside of their individual room. There is also a pool where people can do aquatic exercise. Not to mention that one of my co-workers in the ER gave Osteo a glowing recommendation from when her dad was there almost two years ago. I was very intrigued when she was telling me how great it was, and after touring the facility I can see exactly what she's talking about. Overall I feel like it's going to be really conducive to his healing. It just has the atmosphere of "healthy people recover here", versus Penn State Rehab's wing where it felt like "sick people stay here".
I left Osteo feeling pretty excited... and then got a text from Marty that he had an injury at work and his right middle finger got mangled. I'll spare the details but he fractured, lacerated, AND partially amputated a small part of it. So then he got a lot of repairing, trimming, 14 stitches, a splint, and has an appointment on Monday at the hand clinic to find out about getting pins put in. For now he is unable to get the splint wet, move his finger, or basically even use his right hand at all. This means he is going to be extremely limited with how he can help out around the house. My plate just keeps getting fuller. I'm starting to feel like I wanna know who I ticked off in the cosmos.
So then I went home and found Zoey to be bouncing off the walls. She has been cooped up for so long, she's accustomed to me taking her out almost daily. I whisked her up and figured I'd take her to Hershey Park to Christmas at Candy Lane. She's been asking to go and I thought the time outdoors would be great for both of us. The whole car ride over there she was cheering for Hershey Park, she was SO excited to go on the rides. We literally were singing "Her-Shey Park!, Her-Shey Park!" in the car. We walked up to the gate.... and it was closed. The park didn't open for another hour and a half. It felt sort of like when the Griswolds got to Wally World. After all the build-up, she was NOT a happy toddler. But luckily Chocolate World was open, so we just went there. After we went on the ride I said "You know what Zoey, the hospital is close by, do you want to go see Pop Pop?" She literally squealed and said "POP POP!!! I wanna see Pop Pop!!". Since he's out of the ICU and stable, I thought it was a great idea. And I was so right.
You should have seen him when she walked into his room. He opened his eyes and his whole face lit up in a huge smile, he said so clear and easy "Hey Zoey, Pop Pop loves you" and he grinned for so long. She had a lot of fun bringing him things to eat and drink and he had a good dinner. Previously I just held the utensils for him, but he managed it on his own tonight and did really well. More great progress. He also got a kick out of her bouncing around the room trying to push all the buttons on EVERYTHING. She managed to sneak in the shower and pull the nurse cord twice without me realizing it. I'm sure they love us there. When he got tired again and started to fall back to sleep, Zoey crawled into bed next to him to watch TV. It was so precious, I can't even tell you.
First, I went to Penn State Hershey Rehab at 10am (as I was instructed by the rehab liaison) for an appointment to tour the facility. Apparently no one was available and I ended up sitting in the lobby for almost an hour. Finally I checked in with the secretary (for the 3rd time) only to be told "well, I don't know if anyone will be free any time soon, I guess you could just come back later". Frustrating, given that I currently have about 35 hours worth of things to do in a 24 hour day, so my hours are precious. And I walked out of the building to find a parking ticket on my car.
Then I found out that several faxes that I sent out two days ago, containing important and time-sensitive information about my dad's care, were never received. Apparently there was a problem with the fax I was using and didn't realize it. Or maybe I was just sleep-deprived and didn't have the brain capacity to push the buttons correctly. Either way, it caused a delay in things that I needed to get done.
I visited Dad later in the morning and found out that he had somehow pulled out his brand new PICC line in the middle of the night. So for now he has a peripheral IV in his hand, but will need to get another PICC line placed in the next couple of days. The rest of the visit went really well though. We washed his hair and I primped him for what I call his "fancy salon time". Then he stood up with assistance and easily walked (with help) over to his recliner to sit down. He ate a great lunch. PT and OT came and he did really well with his exercises and walking with a walker. Great continued improvement, I'm so proud of him.
Then I went and did tours of both Penn State Rehab and the Osteopathic Hospital Rehab. I'll just say up front that we're going with Osteo. I really did keep an open mind about Penn State Rehab, despite the incident this morning. I actually would have preferred to go with them, because that would have been a really good continuity of care from HMC. However, Penn State Rehab seems much more geared towards people with physical injuries, like patients recovering from a knee or hip replacement, instead of people recovering from brain injuries. There are lots of resources for people recovering from physical injuries and it seems like a bright, new, friendly place to do that. But there's a "brain injury" wing and it's just kind of creepy. It's a locked hallway and it honestly sort of feels like jail. Nothing like trying to get the rest of your memory back while spending time in rehab prison! Also, they are pretty strict with visiting hours. They are from 8am - 8pm, however they "strongly discourage" any visiting outside of 4pm - 8pm. Family is not permitted to be present during any of the daily therapy sessions. The good thing about it though is that all the patient rooms are private. That's nice. But the private rooms and good continuity of care is really all that it had going for it.
Osteo on the other hand, is ALL ABOUT incorporating family into a patient's therapy and plan of care. They strongly encourage family to be present during any and all PT/OT sessions so that the family is better equipped to facilitate a patient's care at home. They seem to really believe in a cooperative effort between staff and family. There are no visiting hours and no visiting restrictions, family/friends may be present at any time. There are no specific wings, the rooms are organized in a big square around the nursing station. They are shared double-rooms though, that's the one thing I don't like. Private rooms would be much nicer. But the layout is really nice and there are so many places for people to hang out socially in between sessions, there are TV rooms, a piano room, comfy places to be outside of their individual room. There is also a pool where people can do aquatic exercise. Not to mention that one of my co-workers in the ER gave Osteo a glowing recommendation from when her dad was there almost two years ago. I was very intrigued when she was telling me how great it was, and after touring the facility I can see exactly what she's talking about. Overall I feel like it's going to be really conducive to his healing. It just has the atmosphere of "healthy people recover here", versus Penn State Rehab's wing where it felt like "sick people stay here".
I left Osteo feeling pretty excited... and then got a text from Marty that he had an injury at work and his right middle finger got mangled. I'll spare the details but he fractured, lacerated, AND partially amputated a small part of it. So then he got a lot of repairing, trimming, 14 stitches, a splint, and has an appointment on Monday at the hand clinic to find out about getting pins put in. For now he is unable to get the splint wet, move his finger, or basically even use his right hand at all. This means he is going to be extremely limited with how he can help out around the house. My plate just keeps getting fuller. I'm starting to feel like I wanna know who I ticked off in the cosmos.
So then I went home and found Zoey to be bouncing off the walls. She has been cooped up for so long, she's accustomed to me taking her out almost daily. I whisked her up and figured I'd take her to Hershey Park to Christmas at Candy Lane. She's been asking to go and I thought the time outdoors would be great for both of us. The whole car ride over there she was cheering for Hershey Park, she was SO excited to go on the rides. We literally were singing "Her-Shey Park!, Her-Shey Park!" in the car. We walked up to the gate.... and it was closed. The park didn't open for another hour and a half. It felt sort of like when the Griswolds got to Wally World. After all the build-up, she was NOT a happy toddler. But luckily Chocolate World was open, so we just went there. After we went on the ride I said "You know what Zoey, the hospital is close by, do you want to go see Pop Pop?" She literally squealed and said "POP POP!!! I wanna see Pop Pop!!". Since he's out of the ICU and stable, I thought it was a great idea. And I was so right.
You should have seen him when she walked into his room. He opened his eyes and his whole face lit up in a huge smile, he said so clear and easy "Hey Zoey, Pop Pop loves you" and he grinned for so long. She had a lot of fun bringing him things to eat and drink and he had a good dinner. Previously I just held the utensils for him, but he managed it on his own tonight and did really well. More great progress. He also got a kick out of her bouncing around the room trying to push all the buttons on EVERYTHING. She managed to sneak in the shower and pull the nurse cord twice without me realizing it. I'm sure they love us there. When he got tired again and started to fall back to sleep, Zoey crawled into bed next to him to watch TV. It was so precious, I can't even tell you.
But of course, in keeping with this day of ups and downs, just as we were getting ready to leave, Zoey had an accident and peed EVERYWHERE. Her pants were soaked. Her socks were soaked. Her shoes were soaked. The floor was soaked. This is the first time she's EVER had an accident in public. She's done so well since she got potty trained last summer, I don't know what happened. I guess she was so excited to see Pop Pop that it just snuck up on her like some kind of ninja pee. So then she was upset and saying "but I don't wanna wear these wet pants!". I debated stripping her down and trying to creatively wrap her in a towel to leave the building, but my toddler origami skills are lacking. So I just bundled her up over her wet clothes so she'd be warm and not look like an obviously pee-soaked little kid, and figured she'd have to just suck it up. Well of course the whole way out of the building, she's yelling to every single passer-by "I peed on myself! I peed on the floor!". It was an interesting walk to the car.
Never a dull moment around here, that's for sure.
Thursday, December 15, 2011
12/15 5:00pm
After 11 days in intensive care, all of my Dad's "acute" medical needs have been met and he has been downgraded to floor status!
He is now in room 6255.
Just two short days ago he was on a ventilator, receiving nutrition via feeding tube, had a central IV line, foley & zassi catheters, and connected to continuous cardiac monitoring. Now he has none of those things. He is breathing well on his own. He is allowed to drink anything and eat small pieces of food. Today I gave him some jello and a little vegetable broth. He informed me that the broth was awful but the jello was "tolerable". Ha! Later tonight I plan to bring him some dinner to see if he'll eat a little more. The central IV line was removed and they put a PICC line in his arm so that he can continue to receive IV Acyclovir (antiviral) for another 10 days. He is allowed to perform all bodily functions on his own. You may not think that's a big deal but it seriously is. Coming from someone who had to contend with a foley catheter when I was in the hospital pregnant with Finn, the glory of being able to pee on your own is never overrated! And he's not actually connected to anything, no tubes, no wires. It's nice to see him looking "normally" again.
So now I'm looking ahead to getting him placed at a rehab center to continue to work on and develop his brain and motor skills. I'm touring Penn State Rehab tomorrow and also have a consult with the Osteopathic Hospital Rehab liaison. He's not quite ready for discharge yet, he needs some more time in the hospital to get more alert and moving about a bit more. But we're getting close. And that's awesome considering that a few days ago I thought it could be several more weeks until he may be ready!
He is now in room 6255.
Just two short days ago he was on a ventilator, receiving nutrition via feeding tube, had a central IV line, foley & zassi catheters, and connected to continuous cardiac monitoring. Now he has none of those things. He is breathing well on his own. He is allowed to drink anything and eat small pieces of food. Today I gave him some jello and a little vegetable broth. He informed me that the broth was awful but the jello was "tolerable". Ha! Later tonight I plan to bring him some dinner to see if he'll eat a little more. The central IV line was removed and they put a PICC line in his arm so that he can continue to receive IV Acyclovir (antiviral) for another 10 days. He is allowed to perform all bodily functions on his own. You may not think that's a big deal but it seriously is. Coming from someone who had to contend with a foley catheter when I was in the hospital pregnant with Finn, the glory of being able to pee on your own is never overrated! And he's not actually connected to anything, no tubes, no wires. It's nice to see him looking "normally" again.
So now I'm looking ahead to getting him placed at a rehab center to continue to work on and develop his brain and motor skills. I'm touring Penn State Rehab tomorrow and also have a consult with the Osteopathic Hospital Rehab liaison. He's not quite ready for discharge yet, he needs some more time in the hospital to get more alert and moving about a bit more. But we're getting close. And that's awesome considering that a few days ago I thought it could be several more weeks until he may be ready!
Wednesday, December 14, 2011
12/14 10:00pm
I wasn't exactly sure what to expect today. I feel like there has been this great anticipation for getting my dad off the ventilator, and a huge celebration when we finally did. Rightfully so, it was a great milestone and I am SO relieved to have reached it. But getting him off the ventilator is really only the first very small step. Removing the tube in his throat does not fix the infection in his brain. But removing the tube in his throat does make it possible for us to really start the recovery process.
He has a lesion in his temporal lobe from the viral infection and that will take time to heal. The temporal lobe of the brain controls things like memory, language comprehension, categorizing words, and naming things/people. Knowing that and understanding that it's a very slow healing process, my expectation for today was wide open. Even though he showed great promise last night, I just didn't know how it would go.
He is still exhausted and definitely jumbled a bit in the old noggin, but honestly all things considered he's doing excellent. I knew going into this that he may come off the ventilator and potentially not talk at all for weeks, he may not recognize me for awhile, he may have extensive problems with speech. But he's absolutely exceeded my expectations and is doing so well.
The fact that he's even talking at all already, much less in full sentences is really good. He answers many questions correctly when asked, but sometimes is off just slightly. Like this morning he guessed January for the month and 2012 for the year. Or one time he gave his birthday but was off by two days. He does have a slight change to his speech. He also doesn't seem to have any recall of the days leading up to his illness. But he was easily able to say that he went to college at Penn State and answer "Finn" when asked who his grandson is. It just takes him some time to come to the answer and then say it. He had some trouble remembering "Zoey" at first, but he did ultimately remember her name on his own. When I showed him some photos, he couldn't always name everyone in the photo but I'm certain he knows who they are, the words just have a hard time coming to him in this very early phase of the healing process.
And that's something that's important to emphasize. It's so early in the healing process. His brain still has an infection in it, which he continues to receive medication for. It will be a slow process of weeks and months to get him well. But he's definitely on the right road.
As for me, I've had lots of questions asking how I'm doing and I'm chugging along one day at a time too. Today was my first full day back at work. It was an emotional day, I found myself bursting into tears for no good reason at all throughout the morning. Someone asked me for a paper towel and out of nowhere the water works started. It actually made me laugh, it was so ridiculous. So there I was, laughing and crying all at the same time, over a stupid paper towel. Just a lot of emotions running rampant that apparently decide to release themselves whenever they wanted! But despite how overloaded I feel, I was glad to get my brain wrapped around something different for awhile. And it's great that I can just run upstairs and see my Dad whenever I want. I've said it so many times already, but I'm SO glad to be back here.
And I do love how proactive HMC is in his care. They were very assertive with getting him off the ventilator. And on his first full day off the vent, he already had OT/PT (occupational therapy/physical therapy) in his room to work on his mobility. But I find it funny that he wouldn't get out of bed for PT, then later his nurse said he took it upon himself to get out of bed all on his own. Figures he'd want to do it on his own terms! But at least now we know he CAN get out of bed and walk a bit.
I think what he needs most right now is lots of love, positivity, support, and patience. He will continue to get better over the weeks that come, but he needs our familiar faces and kind encouraging words. We must be patient because although he's not at his best today, he's so much better than where he was a week ago, and HE WILL GET THERE. I know it. And let's all remind him of it too.
He has a lesion in his temporal lobe from the viral infection and that will take time to heal. The temporal lobe of the brain controls things like memory, language comprehension, categorizing words, and naming things/people. Knowing that and understanding that it's a very slow healing process, my expectation for today was wide open. Even though he showed great promise last night, I just didn't know how it would go.
He is still exhausted and definitely jumbled a bit in the old noggin, but honestly all things considered he's doing excellent. I knew going into this that he may come off the ventilator and potentially not talk at all for weeks, he may not recognize me for awhile, he may have extensive problems with speech. But he's absolutely exceeded my expectations and is doing so well.
The fact that he's even talking at all already, much less in full sentences is really good. He answers many questions correctly when asked, but sometimes is off just slightly. Like this morning he guessed January for the month and 2012 for the year. Or one time he gave his birthday but was off by two days. He does have a slight change to his speech. He also doesn't seem to have any recall of the days leading up to his illness. But he was easily able to say that he went to college at Penn State and answer "Finn" when asked who his grandson is. It just takes him some time to come to the answer and then say it. He had some trouble remembering "Zoey" at first, but he did ultimately remember her name on his own. When I showed him some photos, he couldn't always name everyone in the photo but I'm certain he knows who they are, the words just have a hard time coming to him in this very early phase of the healing process.
And that's something that's important to emphasize. It's so early in the healing process. His brain still has an infection in it, which he continues to receive medication for. It will be a slow process of weeks and months to get him well. But he's definitely on the right road.
As for me, I've had lots of questions asking how I'm doing and I'm chugging along one day at a time too. Today was my first full day back at work. It was an emotional day, I found myself bursting into tears for no good reason at all throughout the morning. Someone asked me for a paper towel and out of nowhere the water works started. It actually made me laugh, it was so ridiculous. So there I was, laughing and crying all at the same time, over a stupid paper towel. Just a lot of emotions running rampant that apparently decide to release themselves whenever they wanted! But despite how overloaded I feel, I was glad to get my brain wrapped around something different for awhile. And it's great that I can just run upstairs and see my Dad whenever I want. I've said it so many times already, but I'm SO glad to be back here.
And I do love how proactive HMC is in his care. They were very assertive with getting him off the ventilator. And on his first full day off the vent, he already had OT/PT (occupational therapy/physical therapy) in his room to work on his mobility. But I find it funny that he wouldn't get out of bed for PT, then later his nurse said he took it upon himself to get out of bed all on his own. Figures he'd want to do it on his own terms! But at least now we know he CAN get out of bed and walk a bit.
I think what he needs most right now is lots of love, positivity, support, and patience. He will continue to get better over the weeks that come, but he needs our familiar faces and kind encouraging words. We must be patient because although he's not at his best today, he's so much better than where he was a week ago, and HE WILL GET THERE. I know it. And let's all remind him of it too.
Tuesday, December 13, 2011
12/13 5:00pm
After 9 days of being intubated, HE'S OFF THE VENTILATOR!!!
He was extubated at around 4:00pm today and so far doing well. He had a LOT of junky mucus in his throat where the tube was, so he needed a good bit of suctioning to get all that crap out.
His throat is sore from the tube, he's extremely hoarse, and he still seems incredibly tired so he didn't talk a whole lot. But he knew who I was, knew that he was he was in Hershey at the hospital, and guessed the year to be 2012. So not too bad. We haven't pushed him to talk a whole lot, he still really needs a lot of rest.
But finally getting him off the ventilator is a big stepping stone.
He was extubated at around 4:00pm today and so far doing well. He had a LOT of junky mucus in his throat where the tube was, so he needed a good bit of suctioning to get all that crap out.
His throat is sore from the tube, he's extremely hoarse, and he still seems incredibly tired so he didn't talk a whole lot. But he knew who I was, knew that he was he was in Hershey at the hospital, and guessed the year to be 2012. So not too bad. We haven't pushed him to talk a whole lot, he still really needs a lot of rest.
But finally getting him off the ventilator is a big stepping stone.
Monday, December 12, 2011
12/12 9:30pm
Today Dad had his sedation turned off at 10:30am and as of 9:30pm it's still off and he's doing well! The plan is to see how he does overnight and if there are no issues, they think there is a strong possibility of him getting extubated (having the breathing tube removed) tomorrow. I'm really crossing my fingers because I'm so ready for him to get off the vent.
We've been weaning the sedation more and more all week and he's gotten increasingly more responsive. After it was turned off this morning he opened his eyes for the first time. I can't describe that feeling. The relief I felt at watching him do such a seemingly simple thing was powerful. Through this very difficult ordeal, I've truly come to treasure each and every milestone. He didn't keep his eyes open long, but he did open them several times throughout the day. And for the third day in a row, he was able to grasp hands on command and slightly nod his head to a couple of questions.
They have these big puffy white mittens on his hands, their purpose is simply for protection, so that he doesn't accidentally pull out any tubes/wires/etc while he may still be disoriented. Today I started taking the mittens off for increments of time while I was at the bedside since I could watch him closely and assure his safety. I figured it would be nice for his hands to get a break from those things. He immediately grasped one of my hands. He definitely knows I'm here. During these particularly alert times, I made sure to tell him of all the people thinking of him, praying for him, calling/texting/emailing about him, and visiting him. He has a heck of a support network.
In other good news, they discontinued the silly contact precautions. So no one is wearing the yellow gowns anymore to go in the room. They didn't discontinue the precautions requiring us a wear masks yet, but I think that's coming soon.
We've been weaning the sedation more and more all week and he's gotten increasingly more responsive. After it was turned off this morning he opened his eyes for the first time. I can't describe that feeling. The relief I felt at watching him do such a seemingly simple thing was powerful. Through this very difficult ordeal, I've truly come to treasure each and every milestone. He didn't keep his eyes open long, but he did open them several times throughout the day. And for the third day in a row, he was able to grasp hands on command and slightly nod his head to a couple of questions.
They have these big puffy white mittens on his hands, their purpose is simply for protection, so that he doesn't accidentally pull out any tubes/wires/etc while he may still be disoriented. Today I started taking the mittens off for increments of time while I was at the bedside since I could watch him closely and assure his safety. I figured it would be nice for his hands to get a break from those things. He immediately grasped one of my hands. He definitely knows I'm here. During these particularly alert times, I made sure to tell him of all the people thinking of him, praying for him, calling/texting/emailing about him, and visiting him. He has a heck of a support network.
In other good news, they discontinued the silly contact precautions. So no one is wearing the yellow gowns anymore to go in the room. They didn't discontinue the precautions requiring us a wear masks yet, but I think that's coming soon.
Sunday, December 11, 2011
Another note about visitation
If you visit Dad over the next couple of days, you will notice there are "isolation precautions" in place and you will see the nurses/staff wearing yellow gowns and face masks when they go in the room. We use the term "isolation precautions" to refer to the measures taken (i.e. gown, gloves, mask, etc) when a patient may have a potentially infectious illness.
But I would like to stress that absolutely nothing has changed with my Dad except for the physician team, which changes out on Sundays. Last week's team was very comfortable skipping any isolation measures since they are very assured of his diagnosis, which is not infectious. However this week's physician team came on shift today and basically said "well, we should put him on isolation precautions until we have all of the results back from the spinal fluid tests that confirms that nothing is infectious, just in case". But they even said it's 99.9% likely that all of that is really unnecessary, it's just a precaution, dotting i's and crossing t's. It's funny because even the Infectious Disease team that came to evaluate him said it was silly.
So all those results should be back in the next couple days, until then we'll just all have to be diligent with behaving and putting on the stuff that the nurses/staff ask us to. Probably just face masks, which they'll provide you with. Hopefully it won't be for long.
But I would like to stress that absolutely nothing has changed with my Dad except for the physician team, which changes out on Sundays. Last week's team was very comfortable skipping any isolation measures since they are very assured of his diagnosis, which is not infectious. However this week's physician team came on shift today and basically said "well, we should put him on isolation precautions until we have all of the results back from the spinal fluid tests that confirms that nothing is infectious, just in case". But they even said it's 99.9% likely that all of that is really unnecessary, it's just a precaution, dotting i's and crossing t's. It's funny because even the Infectious Disease team that came to evaluate him said it was silly.
So all those results should be back in the next couple days, until then we'll just all have to be diligent with behaving and putting on the stuff that the nurses/staff ask us to. Probably just face masks, which they'll provide you with. Hopefully it won't be for long.
12/11 3:00pm
My Dad had several visits from family throughout the day, I'm sure he can hear your words and feel the love!
This morning was another good step in a positive direction. He had sedation turned off for a couple hours this morning and he was able to better follow commands and respond to us during that time, even better than yesterday. He was able to press down with his feet when directed and nod/shake his head in response to questions. They weren't big or vigorous movements by any means, they were small but they were absolutely there.
One of the things I asked him is if he's having pain, specifically in his head and neck. The facial grimaces he makes when his head is moved and the way he behaves made me really feel like his head and neck are causing him some pain. With the meningeal irritation he has and small amount of bleeding in the brain (which is very normal with the viral process that he has going on), this discomfort is to be expected. So I spoke with the resident and he now will receive some small scheduled doses of pain medicine. I know this healing process will take a long time and I'd like him to be as comfortable as possible.
Other than the brief "sedation vacations" in the morning, he continues to receive light sedation throughout the day until he has healed well enough to tolerate without it. He remains on the ventilator, but he continues to breathe totally on his own and the vent is just there for support.
Something else I did for him today was to play him some music. He has two particular favorite songs, "Dixie Road" by Lee Greenwood and "Don't Stop" by Fleetwood Mac. I played them both several times on my iPhone for him and he really seemed to respond to it.
This morning was another good step in a positive direction. He had sedation turned off for a couple hours this morning and he was able to better follow commands and respond to us during that time, even better than yesterday. He was able to press down with his feet when directed and nod/shake his head in response to questions. They weren't big or vigorous movements by any means, they were small but they were absolutely there.
One of the things I asked him is if he's having pain, specifically in his head and neck. The facial grimaces he makes when his head is moved and the way he behaves made me really feel like his head and neck are causing him some pain. With the meningeal irritation he has and small amount of bleeding in the brain (which is very normal with the viral process that he has going on), this discomfort is to be expected. So I spoke with the resident and he now will receive some small scheduled doses of pain medicine. I know this healing process will take a long time and I'd like him to be as comfortable as possible.
Other than the brief "sedation vacations" in the morning, he continues to receive light sedation throughout the day until he has healed well enough to tolerate without it. He remains on the ventilator, but he continues to breathe totally on his own and the vent is just there for support.
Something else I did for him today was to play him some music. He has two particular favorite songs, "Dixie Road" by Lee Greenwood and "Don't Stop" by Fleetwood Mac. I played them both several times on my iPhone for him and he really seemed to respond to it.
"Don't Stop" - Fleetwood Mac
If you wake up and don't want to smile,
If it takes just a little while,
Open your eyes and look at the day,
You'll see things in a different way.
Don't stop, thinking about tomorrow,
Don't stop, it'll soon be here,
It'll be, better than before,
Yesterday's gone, yesterday's gone.
Why not think about times to come,
And not about the things that you've done,
If your life was bad to you,
Just think what tomorrow will do.
Don't stop, thinking about tomorrow,
Don't stop, it'll soon be here,
It'll be, better than before,
Yesterday's gone, yesterday's gone.
All I want is to see you smile,
If it takes just a little while,
I know you don't believe that it's true,
I never meant any harm to you.
Don't stop, thinking about tomorrow,
Don't stop, it'll soon be here,
It'll be, better than before,
Yesterday's gone, yesterday's gone.
Don't you look back,
Don't you look back.
If it takes just a little while,
Open your eyes and look at the day,
You'll see things in a different way.
Don't stop, thinking about tomorrow,
Don't stop, it'll soon be here,
It'll be, better than before,
Yesterday's gone, yesterday's gone.
Why not think about times to come,
And not about the things that you've done,
If your life was bad to you,
Just think what tomorrow will do.
Don't stop, thinking about tomorrow,
Don't stop, it'll soon be here,
It'll be, better than before,
Yesterday's gone, yesterday's gone.
All I want is to see you smile,
If it takes just a little while,
I know you don't believe that it's true,
I never meant any harm to you.
Don't stop, thinking about tomorrow,
Don't stop, it'll soon be here,
It'll be, better than before,
Yesterday's gone, yesterday's gone.
Don't you look back,
Don't you look back.
Saturday, December 10, 2011
12/10 1:00pm
This was the best morning yet since this whole awful mess started. Dad was off sedation for awhile this morning and was able to squeeze hands on command and nod "yes" to questions, though he wasn't in the mood to open his eyes. That makes me over the moon because although I've felt his presence in there this entire time, it's wonderful to see tangible proof that he's in there and aware. He definitely does NOT like the breathing tube though (not that I can blame him), hopefully in the next couple of days we'll be able to get it removed.
In telling people the kind of person my dad is over the past couple days, I've shared a couple of times how involved he is with both of his grandkids. One of the things he does is take Zoey to preschool and pick her up. He gets so into her preschool and learning that he has a little calendar in his room of all of Zoey's "big preschool events". For "nature day" all the kids were supposed to bring in a nature item, and he offered to help her go collect something. All the other kids brought in leaves or sticks. My dad and Zoey went and collected walnuts. But it doesn't end there. They made an entire "walnut display", showcasing walnuts completely in the shell, walnuts cut in half so that you could see the inside pod, walnuts with the inside pod opened so that you could see the walnut pieces that we all are familiar with eating, and then a store-bought bag of walnuts. He thought the kids would be interested in seeing where the walnuts they eat actually come from. And Zoey got a huge kick out of it.
Her preschool also has "color day" on Thursdays. Each color day, they wear a shirt of the specified color and bring in a show-and-tell item. So on Yellow Day, all the kids show up wearing yellow shirts. Well, my dad honored each and every color day too, he always wore yellow on Yellow Day, orange on Orange Day, etc. I always thought that was completely adorable and really showed how much he truly is an amazing grandfather.
Here's a picture of him taken with the kids last 4th of July:
Friday, December 9, 2011
12/9
Apologies in the delay for an update, it was such a busy day that I literally haven't stopped moving since waking up this morning. I spent a lot of the day in the hospital and had numerous meetings with people to go over various paperwork for my dad, etc. Then I went to the grocery store to get some things for my grandmother, who has a very nasty case of pneumonia. I brought that stuff to her house, visited, and made sure she was ok. Then I drove back home to get the kids fed, bathed, and in bed and after that immediately went back to the hospital to check on my dad and visit one last time for the night. And now here I am! Almost falling asleep at the keyboard.
But it was a good day in that I came to better terms with my dad's illness and got a better understanding of what to expect for his recovery. I've mentioned Cathy before, she is the chief neurology resident at HMC, the wife of one of my ER clinical head nurses, an excellent baker, and a sweetheart of a person. She stopped by to explain some things to me about the virus that has infected his brain and caused the encephalitis. The take-home message is that the brain takes a long time to heal, we need to take it one day at a time, he's receiving the treatment that he needs, and all things considered my dad really does look great for where he is in this very early phase of the healing process.
If you think about it, first there is an infection on/in the brain. Then it swells up in reaction, while trying to the fight the infection. Unfortunately the brain is enclosed in a container, so you also end up with pressure and some heat from the fever. Even in a perfect scenario where there isn't any permanent damage from all of those things, the brain still has to get over what it just went through. And the brain isn't just a one-function organ, i.e. a pump like the heart or an air-exchanger like the lungs. It has a LOT of different functions, many of them inter-related via electric signals and chemical messages. Not only that, but the very things that make those chemicals and monitor their levels are also in the brain. So, it takes awhile for all those things to get back to where they belong, or at least as close to that as possible.
So this is my reminder to myself to be patient. My dad is healing every day but we have a long road ahead, hopefully with continued positive changes. He may be intubated/sedated for another week. He may be in the hospital for several weeks. His recovery may be months or longer. He may have some resulting problems with his memory or physical issues. Or he may not. We really don't know any of that right now. We just have to take it one day at a time and be the best support for him that we can be.
But it was a good day in that I came to better terms with my dad's illness and got a better understanding of what to expect for his recovery. I've mentioned Cathy before, she is the chief neurology resident at HMC, the wife of one of my ER clinical head nurses, an excellent baker, and a sweetheart of a person. She stopped by to explain some things to me about the virus that has infected his brain and caused the encephalitis. The take-home message is that the brain takes a long time to heal, we need to take it one day at a time, he's receiving the treatment that he needs, and all things considered my dad really does look great for where he is in this very early phase of the healing process.
If you think about it, first there is an infection on/in the brain. Then it swells up in reaction, while trying to the fight the infection. Unfortunately the brain is enclosed in a container, so you also end up with pressure and some heat from the fever. Even in a perfect scenario where there isn't any permanent damage from all of those things, the brain still has to get over what it just went through. And the brain isn't just a one-function organ, i.e. a pump like the heart or an air-exchanger like the lungs. It has a LOT of different functions, many of them inter-related via electric signals and chemical messages. Not only that, but the very things that make those chemicals and monitor their levels are also in the brain. So, it takes awhile for all those things to get back to where they belong, or at least as close to that as possible.
So this is my reminder to myself to be patient. My dad is healing every day but we have a long road ahead, hopefully with continued positive changes. He may be intubated/sedated for another week. He may be in the hospital for several weeks. His recovery may be months or longer. He may have some resulting problems with his memory or physical issues. Or he may not. We really don't know any of that right now. We just have to take it one day at a time and be the best support for him that we can be.
Thursday, December 8, 2011
A note about visitation
I know there are many friends/family who want to visit him. I welcome that and think that family presence is so meaningful to the healing process. I know that he can hear your voices. Although his eyes are closed, he is in there.
Just be cognizant of a few things while he is in the ICU (and especially newly there, when the treatment team is still working very hard to get him off the ventilator and determine his plan of care).
- No more than 2 people at a time at the bedside. The whole team needs space to work and take the best care of him.
- In these first few days at HMC while the team is figuring out his plan of care, visits will likely be brief.
- Expect that it's possible when you arrive, he may be at a test, undergoing a procedure, or receiving care that may make him unavailable for a visit. It's also possible that visits may need to be cut short for these same reasons. It is an intensive care unit, so there is often a lot going on with patients throughout the day. Check in with his nurses, they will be a good resource to let you know what he has going on.
- Visiting hours are from 9am - 9pm. Shift change is often at 7pm. So if you visit in the evening, expect that if you have any questions around the 7:00 hour, it may take some time for the oncoming nurse to get report and get "the lay of the land".
As he gets better and does not require such intensive care, visits can then get longer and more frequent. Let's all hope and pray for that to come quickly!
Again, I am so glad to be home and so glad that now he can receive our family's wonderful support.
Just be cognizant of a few things while he is in the ICU (and especially newly there, when the treatment team is still working very hard to get him off the ventilator and determine his plan of care).
- No more than 2 people at a time at the bedside. The whole team needs space to work and take the best care of him.
- In these first few days at HMC while the team is figuring out his plan of care, visits will likely be brief.
- Expect that it's possible when you arrive, he may be at a test, undergoing a procedure, or receiving care that may make him unavailable for a visit. It's also possible that visits may need to be cut short for these same reasons. It is an intensive care unit, so there is often a lot going on with patients throughout the day. Check in with his nurses, they will be a good resource to let you know what he has going on.
- Visiting hours are from 9am - 9pm. Shift change is often at 7pm. So if you visit in the evening, expect that if you have any questions around the 7:00 hour, it may take some time for the oncoming nurse to get report and get "the lay of the land".
As he gets better and does not require such intensive care, visits can then get longer and more frequent. Let's all hope and pray for that to come quickly!
Again, I am so glad to be home and so glad that now he can receive our family's wonderful support.
12/8 9:30pm
We had a very full afternoon and evening getting my Dad settled in at HMC. Everyone was fabulous and I just felt continually so relieved to be back at my home hospital and so LOVED.
Two of the goals for this evening were: 1) start to wean him off sedation to do a good neurological exam and 2) start working towards getting him off the ventilator. Today his lungs started to sound a little coarse, so we definitely want to get the breathing tube out as soon as we can in order to avoid any potential developing pneumonia.
His propofol (sedation drip) was first decreased and then totally turned off for 2 hours tonight, the longest he's gone without sedation since he was intubated Sunday night. I sat with him the whole time and although he did not become alert, he showed many promising signs. He turned his head towards my voice and raised his eyebrows, moved all extremities (with very good tone, the left-sided flaccidity seems to have disappeared which is great), grimaced and bit down on his breathing tube, and after I asked him to open his eyes he appeared to be trying very hard to do so. He fluttered his eyes many times with a look of great consternation. When he seemed to be getting agitated, he responded very well and calmed down after I soothed him and asked him to relax. His pupils are still pinpoint, but reactive (albeit a bit sluggishly).
He did well the first hour or so but then became increasingly agitated. His fever had gone back up to 102, he was getting moved around in bed a lot, and he was getting a lot of poking and prodding with IV sticks, so he was pretty uncomfortable. Both of his peripheral IV sites from the hospital in Louisiana needed to be removed due to the fact that they had run their course (one most certainly was getting some phlebitis), and he turned out to be a bit of a difficult stick. His nurse, myself, and my friend Autumn from the ER all worked to get another IV line in him, ultimately in his foot.
But because of his less than fabulous IV access, he ultimately needed a central IV line (which most ICU patients have anyway and I'm surprised he hadn't already gotten). So due to that fact and also that he will get an MRI tonight (which requires him to hold completely still) we re-started his sedation. I'm glad we did because he looked MUCH more comfortable afterwards. I could tell that last hour was hard on him and he truly looked like he just needed to rest. So the plan at this point is to try to remove sedation again tomorrow and see how it goes.
As far as getting him off the ventilator, it goes hand in hand with removing him from sedation. However, we did adjust his vent settings to more closely mimic his own natural breathing which should help ease the transition.
When I left tonight, they were putting his central line in and he was then going to MRI. Hopefully I'll have news of the MRI in the morning.
I came home and Zoey was still awake, which was fantastic. We hugged and cuddled and my whole soul just felt lighter. I laid down with her to snuggle while she was falling asleep and she turned to me and said "Mommy, Pop Pop is very sick. He's in the hops-piddle. But he loves me very much". Yeah, that pretty much made me get completely teary-eyed. Zoey loves her Pop Pop so much and I want him to get better as soon as possible so that he can come home to her.
12/8 4:00pm
We're back!!!
My dad tolerated the flight beautifully, no problems at all. The flight on the jet took just two hours and it went by really fast. His flight crew was awesome, they were a husband-wife duo. The wife was the flight nurse and the husband was the paramedic. They've been married for 32 years and flying together for over 20 years. They had some really great stories and were just wonderful people to get to know. After we landed at HIA the first thing I saw getting off the plane was the HMC ambulance and I just felt this huge flood of relief. Just seeing our own familiar crew gave me a great sense of home.
We got him up to the MICU, where he was immediately and thoroughly assessed by his physicians and nurses. We're still in the process of getting him settled in but the plan is to try to see if we can wake him up (by weaning him off sedation) to better assess his mental status and also try to get him off the ventilator. The physicians feel like he's doing a good job protecting his airway and want to take the breathing tube out as soon as possible to prevent any complications from it, such as pneumonia etc. I am in wholehearted agreement with this.
He is in room 6155 and friends/family can start visiting him tomorrow, barring any issues that come up. Tonight will be too full for visitation with getting him settled in, I know the staff have a lot of work to do to get acquainted with him and set a plan for the care that he will need. But visiting hours are 9am - 9pm, only 2 people may visit at one time. Please feel free to come see him starting tomorrow.
Thank you for the continued support and prayers, we are so glad to be HOME.
My dad tolerated the flight beautifully, no problems at all. The flight on the jet took just two hours and it went by really fast. His flight crew was awesome, they were a husband-wife duo. The wife was the flight nurse and the husband was the paramedic. They've been married for 32 years and flying together for over 20 years. They had some really great stories and were just wonderful people to get to know. After we landed at HIA the first thing I saw getting off the plane was the HMC ambulance and I just felt this huge flood of relief. Just seeing our own familiar crew gave me a great sense of home.
We got him up to the MICU, where he was immediately and thoroughly assessed by his physicians and nurses. We're still in the process of getting him settled in but the plan is to try to see if we can wake him up (by weaning him off sedation) to better assess his mental status and also try to get him off the ventilator. The physicians feel like he's doing a good job protecting his airway and want to take the breathing tube out as soon as possible to prevent any complications from it, such as pneumonia etc. I am in wholehearted agreement with this.
He is in room 6155 and friends/family can start visiting him tomorrow, barring any issues that come up. Tonight will be too full for visitation with getting him settled in, I know the staff have a lot of work to do to get acquainted with him and set a plan for the care that he will need. But visiting hours are 9am - 9pm, only 2 people may visit at one time. Please feel free to come see him starting tomorrow.
Thank you for the continued support and prayers, we are so glad to be HOME.
12/8 7:00am
I'm here in my Dad's room awaiting the flight crew's arrival, we're ready to go! We should be getting into HMC this afternoon. To all family/friends that I know are anxious to visit, I'll let you know as soon as you are able. That may likely not be today, as it will take some time to get him settled in and assessed by various physicians. But I promise I will let you know what room he is in and when you can see him.
Wish us a safe journey!
12/7 9:00pm
Update: Apparently it's snowing in Harrisburg so they are delaying flight until 8:30am. That's ok, we're still coming home!
And get this: I get to go on the flight with him!!! I've always wondered what it would be like to fly with Life Lion. Now this is a different medical flight service, but it will still be cool. And I'll feel better getting to stay at my Dad's side.
12/7 7:00pm
I'm sorry it took me all day to finally post an update, I truly haven't had a spare minute in this busy busy day. In term of my Dad's condition, it is basically unchanged but I have some great news:
My dad is being air-flighted back to Pennsylvania, TONIGHT!!!!!!!
I cannot even begin the express the relief I feel. The relief of getting him to Hershey Medical Center, where I know the resources are amazing. The relief of having fresh eyes looking at his case. The relief of GOING HOME.
I owe such a huge thank-you to my work-family, without them this early transfer would not have been possible. My nurse manager Lynn, clinical head Josh, his wife Cathy who is the chief neurology resident, and many others all worked hard on getting my dad accepted as a patient at HMC (where open beds are difficult to obtain, especially in such very small amount of time) and secured flight transport THE SAME DAY. My manager Lynn stayed several hours late after work to do everything necessary to secure his flight transport. I am so blown away by their care, compassion, and dedication. I think there's a reason that when I packed my bags Sunday night in a panicked tearful rush, that the only shirts I packed were my HMC ER t-shirts. I couldn't be more proud to wear mine today.
12/7 9:00am
The night shift nurse called me at 6:00am to give me a morning update, my Dad had a good night. Temperature is down to 99, systolic blood pressure is back down to the 120s. Blood work came back and sodium is at 130, which is holding steady. His WBC came down to 7. Everything else is the same.
She said he still didn't really follow verbal commands yet, but that he appeared several times to be trying to open his eyes. Great news!
It's a possibility that we'll get results back today on his spinal fluid that was sent out, if the tests were negative. If any of the tests were positive, the lab has to repeat them and those results will take another couple days.
Heading into the hospital now to wait for visiting hours to start.
12/6 11:00pm
Although it was fairly uneventful, I feel like the remainder of the day went much better.
First, at my 5:00 visit I saw that Evil Nurse had left the building. YAY. And in her place was a really nice and very competent nurse named Chris. Chris had already turned my dad's Propofol down to a lower dose, which I was happy about. Earlier in the day I had verbalized to Evil Nurse that I thought he might be on too much sedation due to the new onset of pinpoint pupils. Plus, he really does quite well at a lower dose of Propofol, he stays sedated enough to be comfortable but isn't snowed. My theory on sedation is the least amount to achieve the desired effect is ideal. So I was planning to see how he was doing at the next visit before I advocated for tapering that down. But Chris came on shift and did that right away anyway so that made things easy.
The fever finally came down to 100 (from 103) so Chris did away with the cooling blankets and ice and my dad no longer seems agitated.
No new lab results or test results came back since my last update.
Another good sign happened at the end of the night, soon before I was getting ready to leave at 10:00. He started to move his arm and legs and wrinkle his brow, so I started talking to him more and he really seemed to respond to my voice. I asked him to squeeze my hand and he gave me two squeezes, although not quite as firm as the night before. But then I asked him if he could open his eyes and he immediately fluttered his eyes. He did that on command three times, the last time his eyes were about 1/3 way open. I have no doubt that he knows I'm here and I am so thankful and glad for that. I hope that gives him comfort and healing strength.
Overall I had a big improvement in mood after having some really good and motivating conversations with friends and family and receiving so many wonderful texts, phone calls, and emails. I feel so unbelievably lucky to have so many amazing people who care. I made myself go to Applebee's and finally eat a little something. Then I went to my last visit with him for the day feeling very positive, uplifted, and energized. I gave him a bunch of pep talks tonight and I may have sung "Eye of the Tiger" in his ear. Nothing says "All right let's kick this infection's ass" like a little 'Eye of the Tiger' dagnabbit.
There are two things that I want to talk to the doctor about tomorrow though. I noticed tonight that he's getting a little scleral edema (swelling on the outside corner of both eyes). I'm thinking it's probably just a result of him being sedated on the ventilator though. Maybe some increased pressure, not being able to close his eyes completely, and maybe not getting good enough eye care. So I want to address what we can do about that. I also noticed he had a couple higher blood pressures tonight so I want to watch that trend. Overall his systolic BP has been 110s/120s but this evening it was 130s/140s for a couple hours. I'll see tomorrow morning if those were isolated or if he's starting to trend high, which we may need to address.
I'm hoping for a good day tomorrow, again I'm anxious to hear how he does when they do the "Sedation Vacation" in the morning. I'm extra excited and anxious too because one of my best friends, Sunita, is flying in late tomorrow night. I can't tell you how thrilled I am. AND I just found out that Kristen and Dawn bought Marty an airline ticket so that he could come be with me Friday night through Sunday evening. Do I have the best friends or what?
12/6 3:00pm
My afternoon visit was much like the first one. Not much to update other than he still has 103 fever. He's getting Tylenol around the clock and has cooling blankets on.
I'm looking ahead into what needs to be done to get him transferred back to PA. It's no small feat that's for sure. They gave me about 60 pages of information to read and applications to fill out, none of which I can comprehend at this moment. Now that the adrenalin from yesterday has worn off, I've gone back to focusing on breathing and taking each moment at a time. I did try to eat but I'm just not hungry. I've been carrying around this banana since yesterday, but it's sort of sad and smelly now. I should probably stop putting it in my sweatshirt pocket. Mostly today I've done a lot of sitting, staring, and spacing out. Making additions to this blog actually really helps, it gives me a bit of purpose when I'm sitting in the hall waiting for visiting hours to start again. This is just one of those times where being alone in Louisiana without my family/friends here just stinks. I really can't wait until he's stable enough to transfer back home.
I'm also still thinking of my grandmother every day, who's still in the hospital at home with pneumonia. Her spirits are high though and she sounds like she's doing well. She's a firecracker.
In somewhat humorous news, after I took a shower this morning and opened my suitcase, I realized the only thing I packed to wear were my HMC ER work t-shirts. I wasn't really thinking at the time. Well, I guess I'm an HMC representative no matter where I go.
12/6 12:00pm
I just came from visiting with my Dad. Apparently when they turned off his sedation this morning to evaluate his mental status (they call it a "sedation vacation"), he still didn't follow any commands, had some tremors, and seemed fairly agitated so he will continue to be on the ventilator for now. The doc said he thinks the cooling blanket and ice packs they were using to get his fever down were likely a contributing factor in agitating him and making him uncomfortable so I guess it's a good thing he stays sedated for at least another day while he rides this out. I just hate to see him on the vent and I'm very much wanting to see how he's going to be when he finally wakes up. Due to the agitation, he's on a higher dose of Propofol today and is more heavily sedated so he didn't move much at all when I was in there and did not grab my hand this time. However, the doctor said it's a very reliable and good sign that he grabbed my hand on command several times last night when he was only lightly sedated.
Still waiting on the official EEG reading, but the doc said it looks to be normal and without any seizure activity. Lungs are fine, heart is fine, kidneys are fine. It seems the only thing currently affected is his neurological status from the presumed encephalitis.
I don't like his nurse today. It all started when she snapped at me for closing his door so that I could visit in private (which I did all day yesterday), she said she needed to be able to see his ventilator at all times to make sure it didn't alarm. I really tried not to be a smart-ass and say as sweet as possible "isn't that what the alarm bells are for?" and assured her that I could hit the call bell if his vent alarmed. She did finally agree to that and shut the door with an audible "harumph". She won't let me visit outside of visiting hours, like the nurses yesterday and last night did. Visiting hours are very narrow windows, you can only be at the bedside 10-11a, 1-2p, 5-6p, and 9-10p. Four hours a day isn't very much, especially when you have no where else to go. So right now I'm just sitting in the waiting room until I can go back in.
Then she gave me misinformation about my Dad's lab results. I specifically wanted to know about his sodium level, which has been low. Low sodium can cause a lot of things, like confusion, headache, irritability, muscle spasms/weakness, restlessness, etc. It can have some very serious effects if it gets too low. So I just want to make sure he's trending in the right direction or maintaining. Normal sodium is 135-145. On arrival he was 125 and last night he was 130, so definitely going the right way. The nurse told me this morning it went back down to 121. This was very concerning to me and she blew it off completely. I had her call the doctor (which took forever, since she apparently had a priority to sit at the desk and drink coffee), when he came he explained that his sodium was not 121, it was 127. I could have chucked a chair at that nurse. It may not sound like a big difference, but it is. 127 is hovering where he has been, which tells me that he's basically maintaining. 121 is a clear shift in the wrong direction. So there's a big difference. The doctor even said he would be very concerned if it had been 121 and we would have made some changes based on that. So yeah, the nurse should probably not be giving out inaccurate lab information. UGH.
Then, she hung his IV Acyclovir (antiviral medicine) at the wrong rate on the IV pump. She took down his other medicine, which was going at a rate double what the Acyclovir was, and forgot to adjust the rate for the new medication. I pointed it out and she fixed it, and it would not likely have caused much problem if he'd gotten Acyclovir at double the rate he was supposed to, but sheesh. Like we need any other potential problems right now. All the nurses up until now have been fantastic. But I'm going to watch this one like a hawk.
So basically in a nut shell, no real change yet. But he's definitely not getting any worse, he's maintaining. The doctor said with patients like my dad, who he has a strong optimistic outlook for, we also need to start thinking about the complications that can come about from spending so much time in the bed. He showed me how to better position his head and stretch his neck muscles so that he doesn't get muscular issues from having his head tilted in the same position for too long. And as a nurse, I already know a lot of interventions for overall positioning so I'll work on some of those things too. I guess I was hoping to see some marked improvement after last night's uplifting visit, but I think I need some patience. Patience has never been my strong suit!
12/6 7:00am
Every morning at 6am the night shift ICU nurse calls to give you an update on how the night went. He said it was basically uneventful and there are no new changes. Dad's fever came down to 100 with cooling blankets and Tylenol but never really broke.
The plan for today is to do an EEG this morning to check for any seizure activity, temporarily turn off the Propofol (sedation drip) to see if he's any more lucid and able to better follow commands, and at some point today get an MRI. They said until now they didn't know if he was stable enough to get an MRI, he couldn't tolerate being moved down there and spend an hour in the MRI scanner. But they said they think he'll do ok with it today. I'm hoping that may give us some more answers, or at least rule out some things.
Visiting hours start in 2 hours. So I'll head into the hospital soon.
Also, one of the hotel staff, Barbara, came by to see how he was this morning. Barbara is an amazing person. She's the one who found my dad. She stayed with him until the paramedics took him to the hospital. She's the one who searched for my dad's phone to get my number and call me to tell me what was happening. She even drove over to the hospital and sat in the ER to give me an any updates that they would tell her and kept calling me to tell me what was going on. If it wouldn't have been for Barbara I wouldn't have known anything at all and would have been much more hysterical. So she is awesome. She said that all the hotel staff here really love my Dad, he always stops at the desk to talk to them and brings them Hershey bars from home.
12/5: The Beginning
Most of you know by now that my dad is in the ICU in Baton Rouge and is very ill. Thank you all very much for your love and support, we need it right now and it is so appreciated.
I'm so tired from being up for 2 days straight, taking 3 flights, and spending all day in the hospital. I'm in a bit of a fog so forgive me if I begin to ramble. But I'll try to fill you in on everything that has happened so far, so this initial entry will probably be lengthy. I plan to update this site frequently whenever I visit him or hear anything, so future updates will be shorter.
Background:
My dad has been working out of town in the Baton Rouge area for just a couple weeks on a short assignment. He was due to come home in 2 weeks. This is what I know of that led up to this event:
Thursday 12/1: Per his coworker, he had decreased appetite and was wearing glasses instead of contacts, which isn't typical.
Friday 12/2: Onset of chills, headache, nausea, dizziness, sweating, and dry mouth.
Saturday 12/3: We spoke on the phone and he said he was starting to feel a little better, but still sounded a little "off".
Sunday 12/4: We emailed back and forth and I got a normal logical email from him at 2:30pm stating everything was fine and he was planning on following up with the doctor in the morning. Then at approximately 9:00pm he was found totally disoriented and confused banging on doors in the hotel hallway. The paramedic also said that he had left-sided weakness and a left-deviating gaze and was unable to answer any questions correctly or communicate coherently whatsoever. Initially we were very concerned that he was having a stroke.
Upon arrival to the ER, he received a CT which was normal. His initial bloodwork showed an increased white blood cell count of 20 (indicating infection), sodium was 125, and liver enzymes were mildly elevated. Stroke was ruled out in favor of an infectious process, suspicion at that time was meningitis. He had no hallmark rash, but presented with fever of 103 and very rigid stiff neck. He remained confused, had some seizure activity on EEG, and became increasingly lethargic, all of which led the physicians to intubate him (put in a breathing tube) to protect his airway.
After a very sleepless night, I got on the first flight out of Harrisburg and got here to Baton Rouge this afternoon.
I spoke with the doctor and they are still unclear what is causing this. It appears there are different opinions depending on which doctor you ask. One swears it must be viral meningitis, one swears it is likely west nile virus. All that's clear to me is that he has some serious infectious process going on, whether viral or bacterial I don't know. But they did a spinal tap and the cerebrospinal fluid does not support bacterial meningitis, which is a good thing. The spinal fluid has been sent out to test for West Nile Virus, Rocky Mountain Spotted Fever, and some other stuff too that I quite honestly tuned out. He is currently taking IV Acyclovir (antiviral), Vancomycin (antibiotic), Keppra (antiseizure), Propofol (sedation) and normal saline (maintenance fluids).
Bloodwork this afternoon continued to show a further elevated WBC, but the sodium has improved to 130 which is closer to normal. He has had no further seizure activity since last night. Blood cultures have been sent out, results should come back in a day or so. His urine showed no sign of infection.
He remains on the ventilator, however he is also able to breathe above the vent (on his own) so that is a good thing. But he apparently will stay on the ventilator until he is able to better follow commands. The nurse said she momentarily stopped the Propofol (the sedative drip) this morning to see how he would do, and at that time he was not able to follow commands very well. Mostly he just tried to pull out his breathing tube. I'm hoping after another 24 hours of medication that he'll respond a little better tomorrow. I'm anxious to know once the sedation is removed, what his mental status will be like and what he'll be capable of.
In terms of his left-sided weakness, the initial report I got was that his left side was very flaccid and that even when he was fighting the vent and breathing tube, he wasn't lifting his left arm at all, he was only moving the right side. The doctor said that basically whatever infection is going on has affected his nervous system, thus the limb paralysis. During my first visit I saw this to be true. But then later in the afternoon I saw that although he still favored his right arm, he was definitely moving and lifting the left arm too. This evening I saw him moving his left arm much more. That is a good thing.
He still has a fever. This afternoon his fever stayed at 103 despite Tylenol. The night shift nurse had a cooling blanket and some ice packs on and that started to make a difference before I left.
As for mental status, although he is sedated on Propofol I believe that he was responding well to my voice. When I first got there and was talking to him and holding his hand, he squeezed my hand in return. At first I thought it might be a coincidence and I was afraid to get my hopes up. But this evening, I was talking in his ear about Zoey and Finn and how much they love him. And explaining to him that he was in the hospital and what was happening. I asked him to squeeze my hand if he understood. He furrowed his brow and squeezed my hand. It looked like it took effort, but he did that 3 different times when I asked. He squeezed my hand in a very specific way. That makes me feel good.
As for MY mental status, well this whole thing has been very easy to write so far because that stuff is all very clinical. But I've run the gamut of emotions all day. There were times I felt like all I could do was barely breathe and make it through from one moment to the next. Not knowing exactly what we're dealing with or what kind of prognosis we face is difficult. Honestly, I'm really in no position to share much, I'm just exhausted. And it isn't easy being out here all alone, with no friends and family and nearby.
But I am overwhelmed by the kindness of friends and family who have been calling, texting, and emailing throughout this challenging day. I'm sorry if I haven't gotten back to you but I've gotten each message and I love you all. And thank you for the calls about my grandmother as well. She has also been ill and has been admitted to a hospital in PA for further tests, she is in my thoughts all day as well.
I was also so comforted by all the calls I got from my Dad's coworkers and the hotel staff who are all concerned for him and who have nothing but amazing kind words to say. One of his co-workers met me at the hospital to talk and give me a "goodie bag" that his wife put together. Thank you. Thank you everyone.
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