Today was our first full day at home. RJ is feeling better, though still tiring easily, and getting bored. As he put it, "I'm tired but I'm tired of sleeping too."
He spent almost the whole day awake, he showered, and we watched some TV. He got exercise pacing, trying to decide what he wanted to do. He also discovered his glasses may not be right anymore, as he said they are fuzzy (he cleaned them 3 times first). His right hand is still numb too. I'm hoping that slowly recovers as his brain heals, but for now he's trying to do most things left-handed. He'll need help with written work when he goes back to school...
I called doctors to get the follow up appointments, and couldn't manage any of that! The neurosurgeon is waiting for the insurance to clear the follow up CT scan, and can't schedule that until it's okayed. They want the CT before the appointment with the doctor, so we wait. The Hematologists want an appointment a month out, the doctor is on vacation then, so we need to wait for their December calendar.
Always fun, right? I will happily wait for insurance approval as long as they still cover most of the bills! Two nights in ICU, 2 nights in a regular room, 4 CT scans, Hematology & countless lab tests, neurosurgery, anesthesia, OR, meds and so many other things already, not to mention all the follow up blood work, CT scan, and appointments.
Tomorrow I am back to work. Mom & dad are hanging out with RJ while I'm gone :) Nate is doing fine because he doesn't have to be silent, and he gets the x-box to himself :) RJ does offer him advice once in a while, so that part hasn't changed a bit.
October 31, 2011
October 30, 2011
Our Day
RJ and I have had a quiet day today, he's spent most of it dozing in the recliner :)
When he wakes up, he visits for a bit, then it's time for something to eat and back to sleep. His pain has been good, taking only ibuprofen so far and not the Vicodin. Mom & Dad stopped by to bring me ibuprofen, I didn't know I was almost out until he needed it! Luckily I had a single-dose pack in the first aid kit for right then.
Nathan will be home shortly also, I think he will head straight for the X Box :) I would if I were him! He and I are going to hit a movie next weekend, if there's something good on (hope so!)
I have tomorrow off from work, then we are back to usual on Tuesday. Mom &/or Dad will be here with RJ during the day and when I'm at school, and I have a lineup on the counter and in the fridge with easy foods for RJ. I've also invited Ron to visit RJ this week, as I know this has been difficult. I would want to see him the first week home too, had he been going to Ron's instead of here.
When he wakes up, he visits for a bit, then it's time for something to eat and back to sleep. His pain has been good, taking only ibuprofen so far and not the Vicodin. Mom & Dad stopped by to bring me ibuprofen, I didn't know I was almost out until he needed it! Luckily I had a single-dose pack in the first aid kit for right then.
Nathan will be home shortly also, I think he will head straight for the X Box :) I would if I were him! He and I are going to hit a movie next weekend, if there's something good on (hope so!)
I have tomorrow off from work, then we are back to usual on Tuesday. Mom &/or Dad will be here with RJ during the day and when I'm at school, and I have a lineup on the counter and in the fridge with easy foods for RJ. I've also invited Ron to visit RJ this week, as I know this has been difficult. I would want to see him the first week home too, had he been going to Ron's instead of here.
Home!
While on our way to the hospital today, Ron sent me a text that the doctor had been in and said he could go home at any time. He also let me know the nurse was getting RJ's hair washed :) I'm sure that felt wonderful for him!
Mom, dad, and I got there at about 9:30, and by 10:30 we were on our way out. RJ opted to come straight to my house instead of dad's then here later on. (What I'd planned anyway, but due to a difference of opinion, we asked RJ)
We made a quick stop to pick up his meds, then home and settled into the recliner to rest. He woke up and asked for his glasses & lunch, Easy Mac & diced peaches, then put his feet back up for nap time.
We are spending a very quiet afternoon for a bit longer, I asked his dad for a couple hours for him to rest before they come over.
Mom, dad, and I got there at about 9:30, and by 10:30 we were on our way out. RJ opted to come straight to my house instead of dad's then here later on. (What I'd planned anyway, but due to a difference of opinion, we asked RJ)
We made a quick stop to pick up his meds, then home and settled into the recliner to rest. He woke up and asked for his glasses & lunch, Easy Mac & diced peaches, then put his feet back up for nap time.
We are spending a very quiet afternoon for a bit longer, I asked his dad for a couple hours for him to rest before they come over.
October 29, 2011
Almost Home!
Today was a wonderful day, RJ is doing terrific, he has impressed everyone there with his recovery :)
The CT scan this morning was good, there are no problems noted and he is about ready to come home. He walked a circuit of the 7th floor this morning, then sat up in his chair and tried to eat his lunch. His jaw is still very sore with fluid retention in the joint, cheek, and a little under his chin. The incision looks perfect, no redness, drainage, or swelling.
I left him in the care of the excellent staff at 4:30, went to dinner with my mom, dad, brother & sister, picked up a handheld shower head, and then to the grocery store to pick up pudding, applesauce, jello, and sherbet for RJ. The shower head is now installed, a shower chair will be arriving tomorrow (my parents had one, from mom's hip surgery) and RJ should also be coming home tomorrow.
At 8:30 I called Ron to ask how RJ was doing (he was back up there after spending most of the day with Nate). RJ had been for another walk, and was currently up & moving. I did get a chance to talk to RJ, he's happy that he will be able to come home soon.
Tonight I am watching "The King's Speech" and relaxing a little. Mom, dad, and I are returning to the hospital in the morning, so there will be more updates tomorrow.
The CT scan this morning was good, there are no problems noted and he is about ready to come home. He walked a circuit of the 7th floor this morning, then sat up in his chair and tried to eat his lunch. His jaw is still very sore with fluid retention in the joint, cheek, and a little under his chin. The incision looks perfect, no redness, drainage, or swelling.
I left him in the care of the excellent staff at 4:30, went to dinner with my mom, dad, brother & sister, picked up a handheld shower head, and then to the grocery store to pick up pudding, applesauce, jello, and sherbet for RJ. The shower head is now installed, a shower chair will be arriving tomorrow (my parents had one, from mom's hip surgery) and RJ should also be coming home tomorrow.
At 8:30 I called Ron to ask how RJ was doing (he was back up there after spending most of the day with Nate). RJ had been for another walk, and was currently up & moving. I did get a chance to talk to RJ, he's happy that he will be able to come home soon.
Tonight I am watching "The King's Speech" and relaxing a little. Mom, dad, and I are returning to the hospital in the morning, so there will be more updates tomorrow.
October 28, 2011
Out of ICU
Today was a great day :) his CT scan showed more expansion of the brain, the space left is getting very small. The neurosurgeon, Dr. Skarli, came in and removed the bandages and checked the incision and drain. Because of the vast improvement and minimization of the space, he removed the drain and put a stitch in to close it up. RJ bore that very well (no anesthetic, both are painful). Before the doc pulled the drain, I asked RJ if I could take a picture of the incision, he said "as long as you show it to me." That's my boy! He has 32 staples and 1 stitch. I counted the staples. Twice :) I also promised not to post that picture & gross everyone out :)
RJ ate some Jello, but said his jaw was sore and we didn't try the crackers. He got up to the recliner chair and sat up for over an hour before we put the footrest up and reclined it slightly, then he dozed there for about another hour. He tried some Mac & cheese while up, but his jaw was too sore for that.
He was removed from ICU status after the doctor's visit this morning, and moved down a floor in the afternoon once a room opened up. That wore him out, as he rode down in a wheelchair. He transferred from the bed to the recliner, recliner to wheelchair, and wheelchair to bed today, quite a workout!
My mom and dad arrived shortly before 1, they visited with RJ for a bit then we went to lunch. They helped moved all our stuff to the new room, made sure RJ was settled, then we left him to the nurses and went out to the seating area to talk. RJ slept most of the afternoon and evening, in peace & quiet in the new room. He is still on IV fluids to keep him hydrated, but his meds are now oral instead of IV. The heart monitor is off as of just now, with only the O2 monitor remaining. (his lowest stat I've seen is 97%, for my coworkers)
One more CT while we're here, as far as I know, and that will be tomorrow. There's also another blood draw for the hematology docs in the morning, and then we should hear some results as they all come in. (for the nurses I know: I believe it is a PT or PTT they are drawing. I have that info second-hand so I could be wrong too)
RJ ate some Jello, but said his jaw was sore and we didn't try the crackers. He got up to the recliner chair and sat up for over an hour before we put the footrest up and reclined it slightly, then he dozed there for about another hour. He tried some Mac & cheese while up, but his jaw was too sore for that.
He was removed from ICU status after the doctor's visit this morning, and moved down a floor in the afternoon once a room opened up. That wore him out, as he rode down in a wheelchair. He transferred from the bed to the recliner, recliner to wheelchair, and wheelchair to bed today, quite a workout!
My mom and dad arrived shortly before 1, they visited with RJ for a bit then we went to lunch. They helped moved all our stuff to the new room, made sure RJ was settled, then we left him to the nurses and went out to the seating area to talk. RJ slept most of the afternoon and evening, in peace & quiet in the new room. He is still on IV fluids to keep him hydrated, but his meds are now oral instead of IV. The heart monitor is off as of just now, with only the O2 monitor remaining. (his lowest stat I've seen is 97%, for my coworkers)
One more CT while we're here, as far as I know, and that will be tomorrow. There's also another blood draw for the hematology docs in the morning, and then we should hear some results as they all come in. (for the nurses I know: I believe it is a PT or PTT they are drawing. I have that info second-hand so I could be wrong too)
October 27, 2011
Surgery day
RJ underwent surgery this morning. What they hoped would be a simple burr hole & drain turned into the anticipated craniotomy instead. Once inside the skull, the fluid was found to be layers of clotting that has occurred over the last year, and under the membrane instead of over it. With these turns of events, the surgery took 2 1/2 hours instead of the expected 1 hour.
After coming out of surgery, he had a CT scan done again, which we later saw. It showed that the space that had been filled with the clot was now filled with the expanding brain, a very good thing :)
RJ has had many visitors today, while he did the usual post-op doze and talk. He was with it enough to have snappy come-backs for people, and we got him to laugh some too. Now he is resting as much as he can with hourly neuro checks occurring all night tonight. He has an antibiotic, anti nausea med, Kepra, and morphine keeping him hydrated, comfortable, and hopefully free of infection or seizures. He also has a drain that clears fluids and helps re-expand the compressed brain area.
Tomorrow is another CT scan, and maybe some more awake time, we shall see. Before he leaves here we will have evaluations done by therapy, and he may be participating in some therapy here or as an outpatient. All that remains to be seen yet.
After coming out of surgery, he had a CT scan done again, which we later saw. It showed that the space that had been filled with the clot was now filled with the expanding brain, a very good thing :)
RJ has had many visitors today, while he did the usual post-op doze and talk. He was with it enough to have snappy come-backs for people, and we got him to laugh some too. Now he is resting as much as he can with hourly neuro checks occurring all night tonight. He has an antibiotic, anti nausea med, Kepra, and morphine keeping him hydrated, comfortable, and hopefully free of infection or seizures. He also has a drain that clears fluids and helps re-expand the compressed brain area.
Tomorrow is another CT scan, and maybe some more awake time, we shall see. Before he leaves here we will have evaluations done by therapy, and he may be participating in some therapy here or as an outpatient. All that remains to be seen yet.
October 26, 2011
An unexpected turn of events
My oldest son had a migraine the other evening. He's never had them before, and it was preceded by numbness & tingling in his right arm & the right side of his face. Odd, but with a family history on both sides of migraines, not too odd.
Two nights later he tells me he woke up with a skull-splitting migraine and nausea. With 2 in 3 days' time, I called the doctor & scheduled an appointment, which was 2 days later. This morning. The doctor ordered a CT scan, which showed fluid on the brain, and we are now at the hospital awaiting a second CT tonight and surgery to drain the fluid in the morning. He had a brain bleed, with no known cause. No trauma, no bumps, no anything.
Everyone is stumped as to the cause, and lots of bloodwork is being done. There are a lot of questions & not many answers yet for why it happened, but thank heaven it has been found & isn't a tumor. I am trying to stay on the bright side, that will be best for all of us, I think.
Helen DeVos Children's Hospital staff & docs have been great, & he has a Wii for entertainment :)
Two nights later he tells me he woke up with a skull-splitting migraine and nausea. With 2 in 3 days' time, I called the doctor & scheduled an appointment, which was 2 days later. This morning. The doctor ordered a CT scan, which showed fluid on the brain, and we are now at the hospital awaiting a second CT tonight and surgery to drain the fluid in the morning. He had a brain bleed, with no known cause. No trauma, no bumps, no anything.
Everyone is stumped as to the cause, and lots of bloodwork is being done. There are a lot of questions & not many answers yet for why it happened, but thank heaven it has been found & isn't a tumor. I am trying to stay on the bright side, that will be best for all of us, I think.
Helen DeVos Children's Hospital staff & docs have been great, & he has a Wii for entertainment :)
October 15, 2011
Thank You God!
Thank heaven for the gorgeous day today, for Samantha's senior portrait shoot! We were worried it might rain, but we had beautiful blue skies with fluffy clouds & sunshine :) it was windy & cool, but you can't see that in pictures :)
Finishing up dinner now, then home to edit & upload today's photos. Thanks Sammy for asking me to do your photos, I had a ball!
Finishing up dinner now, then home to edit & upload today's photos. Thanks Sammy for asking me to do your photos, I had a ball!
October 13, 2011
What a Day!
So, work was... well, shall we say... interesting... today. Nothing particularly went wrong, just a whole bunch of stuff conspiring to make the day unusual and crazy.
Part of that was the maintenance testing of our locked and alarmed exit doors, causing ridiculously loud alarms throughout the building for an extended period of time. This was closely followed by the AFC homes around us testing their fire alarms, which sends an overhead page in our building (we are required to respond to the houses).
If that wasn't crazy enough, it was the monthly theme meal for the residents, which brings in a lot of visitors and sends more people than normal to the dining room. That huge dining room was packed solid and noisy! I work on a low-stim unit, so this seemed exceedingly loud to me... That might be a hint that I'm getting old. Nah!
On the way home I realized I'd left my house keys with my son (so he could get in the house and not have to wait on the porch for me after school), and he had an after-school club meeting, meaning I was locked out of my own house! Solution: called my mom & we met for coffee, then I picked up my son after his meeting.
At least the iPhone OS5 update went smoothly, and the Red Wings won tonight... Now I just have to hope for a smoother workday tomorrow, and clear weather Saturday afternoon (outdoor portrait shoot). My fingers are crossed!
Part of that was the maintenance testing of our locked and alarmed exit doors, causing ridiculously loud alarms throughout the building for an extended period of time. This was closely followed by the AFC homes around us testing their fire alarms, which sends an overhead page in our building (we are required to respond to the houses).
If that wasn't crazy enough, it was the monthly theme meal for the residents, which brings in a lot of visitors and sends more people than normal to the dining room. That huge dining room was packed solid and noisy! I work on a low-stim unit, so this seemed exceedingly loud to me... That might be a hint that I'm getting old. Nah!
On the way home I realized I'd left my house keys with my son (so he could get in the house and not have to wait on the porch for me after school), and he had an after-school club meeting, meaning I was locked out of my own house! Solution: called my mom & we met for coffee, then I picked up my son after his meeting.
At least the iPhone OS5 update went smoothly, and the Red Wings won tonight... Now I just have to hope for a smoother workday tomorrow, and clear weather Saturday afternoon (outdoor portrait shoot). My fingers are crossed!
October 8, 2011
October 7, 2011
Hockey Season!
Hockey season has begun. Streaming games live online. The Red Wings won their season opener. What does all that mean to me? A very good Friday night at home :)
Yes, I am a hockey fan. Yes, I like when they fight. I like when they slam each other into the glass. I become loud & bloodthirsty when it's hockey season (and at demolition derbies). Maybe this is part of why I like Roller Derby too?
Just another facet of me, take it or leave it. I am a renaissance girl ;)
Yes, I am a hockey fan. Yes, I like when they fight. I like when they slam each other into the glass. I become loud & bloodthirsty when it's hockey season (and at demolition derbies). Maybe this is part of why I like Roller Derby too?
Just another facet of me, take it or leave it. I am a renaissance girl ;)
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