Extra chairs are hard to come by in the LTAC, so we've put a couple of folding chairs into the coat closet right next to the door. There is also space to hang up your coats in the closet. All the comforts of home!
We've also put a notebook out for folks to let Ed know that you were there - it'll give folks more space than the poster board. We left the notebook and the magazines on the little table by the bulletin board when we left, but the nurses may need to move things around, so you may need to hunt a little. Today the magazines were in the top drawer of Ed's bedside table.
Ed's rash is looking much better today, so we're grateful for that.
If anyone is having problems posting to the blog, you might try internet explorer rather than firefox - at least that's the rumor!
Thanks for stopping by and saying hi to Ed!
Saturday, January 31, 2009
Friday, January 30, 2009
a few notes on visiting
I forgot to mention -- all hours are visiting hours at Select Specialty. :) If you arrive after 8 pm (or before 5 am), you'll need to use the ER entrance, and get a visitor's pass by talking to the guard on duty there, but that's about it.
If you're reading or talking to Dad, try to speak up a bit -- we've noticed that the neurosurgeon, when asking Dad to do something like keep his eye open, speaks very loudly right into his ear.
A few of Dad's visitors have left some reading material in the room, including a number of Guideposts magazines and a book of Robert Frost's poems: thank you!! Feel free to bring your own, of course, or just chat about your day. We also have a CD player in the room -- if it's too loud when you come in, feel free to pause it or turn it down. In a couple of days we should have a DVD player in there too, and same goes --feel free to pause it when you come in, and hit play on your way out.
If you're reading or talking to Dad, try to speak up a bit -- we've noticed that the neurosurgeon, when asking Dad to do something like keep his eye open, speaks very loudly right into his ear.
A few of Dad's visitors have left some reading material in the room, including a number of Guideposts magazines and a book of Robert Frost's poems: thank you!! Feel free to bring your own, of course, or just chat about your day. We also have a CD player in the room -- if it's too loud when you come in, feel free to pause it or turn it down. In a couple of days we should have a DVD player in there too, and same goes --feel free to pause it when you come in, and hit play on your way out.
Thursday, January 29, 2009
movin' on up
Dad has officially moved up in the world!, to Select Specialty Hospital on the 5th floor of P/SL. He's in the "B" wing, so to visit him now, follow signs to the B elevator, take it to the 5th floor, and he's in room 5204! (Well, I'm only really sure about the "04" part of his room number, but that should be enough to get you to the right place. I'll come back and correct this post later if I figure out that it's wrong.)
The nice thing about Select is that they do "passive" physical therapy. Mom & Dawn have more information about all this, but the range of things that they can do is pretty impressive. I think they plan to start by having Dad sit upright in a chair, rather than reclined in a bed, since "upright" is a more natural position for the brain to settle into its proper place in the skull cavity. I've heard that they can also do passive standing and even walking, though I think that's a ways off for us yet. For now, I think they will just move Dad's arms & legs about, in motions that would be like weight-lifting if he were able to actively, rather than passively, participate.
Dad wasn't very "twitchy" today, which is always discouraging even though we sort of expected it -- we figured that the move from ICU to Select would wear him out. He did, however, move his head to the side quite quickly and strongly when I leaned down to kiss his cheek goodnight. It really startled me! Dad hit me in the face, with his face! We think it was probably just that my hair was tickling his (right) cheek, since I was able to get Dad to replicate the movement by moving my hair across his face. It's still very hard for us to tell what's reflex and what's intentional, which is part of why I'm praying so hard for him to open his eyes. But, we'll just keep hanging in there, hoping and praying and thanking God every day for all of you! The cards, comments, visits, food, hugs, caring and prayers are definitely a part of what's keeping us going. Thank you.
The nice thing about Select is that they do "passive" physical therapy. Mom & Dawn have more information about all this, but the range of things that they can do is pretty impressive. I think they plan to start by having Dad sit upright in a chair, rather than reclined in a bed, since "upright" is a more natural position for the brain to settle into its proper place in the skull cavity. I've heard that they can also do passive standing and even walking, though I think that's a ways off for us yet. For now, I think they will just move Dad's arms & legs about, in motions that would be like weight-lifting if he were able to actively, rather than passively, participate.
Dad wasn't very "twitchy" today, which is always discouraging even though we sort of expected it -- we figured that the move from ICU to Select would wear him out. He did, however, move his head to the side quite quickly and strongly when I leaned down to kiss his cheek goodnight. It really startled me! Dad hit me in the face, with his face! We think it was probably just that my hair was tickling his (right) cheek, since I was able to get Dad to replicate the movement by moving my hair across his face. It's still very hard for us to tell what's reflex and what's intentional, which is part of why I'm praying so hard for him to open his eyes. But, we'll just keep hanging in there, hoping and praying and thanking God every day for all of you! The cards, comments, visits, food, hugs, caring and prayers are definitely a part of what's keeping us going. Thank you.
Wednesday, January 28, 2009
hats off!
After the surgery on Saturday to put Dad's brain flap back in, they'd re-wrapped his head in gauze. But, today I walked in to see that they'd taken his turban-hat back off! Yay! I much prefer seeing Dad that way -- much more like himself, crazyhair and all!
I also heard that they're looking at tomorrow to transfer Dad up to the LCAT, which we think is great news. He's off the ventilator, his O2-saturation levels are fantastic, his heart rate and blood pressure are pretty normal, they should be able to get him back up to goal levels (68 ml/hr) for his feeding sometime tonight, and his temperature is actually a little below average! He's doing ok on the Lasix -- they're getting more liquid out of him, but his legs and now hands and maybe neck are quite swollen, sigh.
He's still flickering his eyelids, which we like to see, and starting to move his mouth+tongue more. A couple of times, I closed his mouth by pushing his chin up, then waited a few seconds and let go of his chin...and Dad would close his mouth on his own for us. We cheered and clapped for him, and were silly and sang him the "Chin Up" song from Charlotte's Web:
I also heard that they're looking at tomorrow to transfer Dad up to the LCAT, which we think is great news. He's off the ventilator, his O2-saturation levels are fantastic, his heart rate and blood pressure are pretty normal, they should be able to get him back up to goal levels (68 ml/hr) for his feeding sometime tonight, and his temperature is actually a little below average! He's doing ok on the Lasix -- they're getting more liquid out of him, but his legs and now hands and maybe neck are quite swollen, sigh.
He's still flickering his eyelids, which we like to see, and starting to move his mouth+tongue more. A couple of times, I closed his mouth by pushing his chin up, then waited a few seconds and let go of his chin...and Dad would close his mouth on his own for us. We cheered and clapped for him, and were silly and sang him the "Chin Up" song from Charlotte's Web:
Chin up, chin upOn her way home from the hospital, Dawn said that Dad was less active while she and Brian were there, so it does seem to come and go. If he's not too twitchy while you're there, it may just be that he's not "warmed up" yet or "tired out" from maybe being active earlier. They also said there was some blood in his urine, which may be an effect of the Lasix?, but still, it'd be nice if his whole system would just go back to normal.
Everybody loves a happy face
Wear it, share it
It’ll brighten up the darkest place
Twinkle, sparkle
Let a little sunshine in
You’ll be on the right side
Looking at the bright side
Up with your chinny chin chin!
lasix
Okay folks, it looks like Dad is slated to stay in the ICU for at least one more day. His legs continue to be super-swollen, and he's not peeing enough (TMI, sorry!!!), so they're giving him Lasix today.* Hopefully that works to reduce the swelling, without causing any side effects.
While we certainly appreciate the small steps that Dad is making -- it's much better than sliding backwards!!! -- we would really really really love to see him open his eyes. That would seem like a huge miracle to us, and would be a super positive sign. Other signs would be okay too, like dilating his pupils or jerking away from pain stimulus rather than pronating (which, for those who've been wondering, is "rolling" the arms and legs inward, rather than jerking upward away from the pain). But if anyone feels like praying for a miracle, I'm definitely voting for eye-opening. Or, heck, while we're at it, let's just pray that Dad wakes the heck up!!!!!! :)
*which, I've been informed, is different than Lasiks. ;)
While we certainly appreciate the small steps that Dad is making -- it's much better than sliding backwards!!! -- we would really really really love to see him open his eyes. That would seem like a huge miracle to us, and would be a super positive sign. Other signs would be okay too, like dilating his pupils or jerking away from pain stimulus rather than pronating (which, for those who've been wondering, is "rolling" the arms and legs inward, rather than jerking upward away from the pain). But if anyone feels like praying for a miracle, I'm definitely voting for eye-opening. Or, heck, while we're at it, let's just pray that Dad wakes the heck up!!!!!! :)
*which, I've been informed, is different than Lasiks. ;)
Tuesday, January 27, 2009
still stable
Ed continued to keep his blood pressure and heart rate and hematocrit looking good today, so they took him off the ventilator and he's breathing on his own. They're just re-starting his feeding, so he's just on 10 ml per hour. His legs continue to be quite swollen, so prayers for him to reduce his fluid retention (as well as to wake up!) would be appreciated.
The surgeon is scheduled to be back in town tomorrow, so we may have more information about when Ed will likely move over to the Select Specialty LTAC.
Visitors are quite welcome, since we're back in the game of having stimulating conversations and delightful reading sessions around Ed. If you come to the ICU and Ed has been moved up to the LTAC, the ICU staff should be able to point you over to the "B elevators" that go up to Select Specialty (on 5th floor).
The surgeon is scheduled to be back in town tomorrow, so we may have more information about when Ed will likely move over to the Select Specialty LTAC.
Visitors are quite welcome, since we're back in the game of having stimulating conversations and delightful reading sessions around Ed. If you come to the ICU and Ed has been moved up to the LTAC, the ICU staff should be able to point you over to the "B elevators" that go up to Select Specialty (on 5th floor).
Monday, January 26, 2009
re-stabilizing
Hello from Denver, once again! Some good news for you all: Dad seems to have re-stabilized. His blood pressure is back up to 106/69. His heart rate is back down to 80ish, down from 110 last night. His hematocrit numbers are back up to 33 -- normal for Dad would be about 40, and last night it was around 20, so he's getting there. His temperature is at 100, down from 103 last night. So, he's nowhere near perfect and certainly not out of the woods yet, but definitely better. We'd like to ask for prayers that things continue in this trend toward stabilization & healing.
Dad's legs are quite swollen, which apparently is common for patients who've been on their back so long, but can't be comfortable. They've taken him off the anti-seizure drug, which is a little scary to us but they thought that might be causing the rash.
We'll be at the hospital most of tomorrow, but if Dad continues to appear stable then I think other visitors would be fine too. :)
Dad's legs are quite swollen, which apparently is common for patients who've been on their back so long, but can't be comfortable. They've taken him off the anti-seizure drug, which is a little scary to us but they thought that might be causing the rash.
We'll be at the hospital most of tomorrow, but if Dad continues to appear stable then I think other visitors would be fine too. :)
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