Wednesday, September 30, 2009

Day 15 Post-Aneurysm

Today we had some pretty great news! The ventriculostomy was removed this morning, because they aren't worried about her intracranial pressure any more. That's HUGE!

Also, they took the staples out of the incision on the side of her head. She looks much more Grandmotherish now, and decidedly less Frankensteinish without them. I'm not sure she ever got a chance to see them, but knowing Linda she wouldn't have liked them and would be glad to have them gone gone gone.

And, one of the neurosurgeons stopped by to talk to her for a bit this afternoon and said that she's doing great. He said that, since she's made it 2/3s of the way through the 21 days with no vasospasms, that her odds of having any now are much lower. Not that she's over the risk, by any means, but that's the best news we've had in that area, so I'm just going to take a minute to do a little happy dance over here...

Funky, funky, cha cha cha! Wheeeeeeee!!!!!!

OK, I'm back, and we're into the less exciting stuff now.

She still doesn't seem to be making any new memories, but her old memories are pretty rock solid! She wrote down the names of some of my family members from out of state, and some other folks, and asked all about them. That was good to see. She had no idea where Scruffles was, though, and needed to be reminded that he's safe at home with us, getting his food and medicine. The nurses assure us that this is normal, and will slowly get better.

Right now, the big worry is that she's not breathing very well. When she had the aneurysm, she vomited and and inhaled some of the contents of her stomach. This is very common, and it's called aspiration pneumonia. They've treated her from the beginning with antibiotics, but it can take a while for the lungs to clear all that stuff out, and in the meantime it just gets more and more irritated in there, so it can make itself worse.

Until they can get her lungs a little more cleared out, and get her breathing a little better (on less oxygen), they can't put the Passy-Muir Valve in her trach that would allow her to speak as well as use it to breathe. They're hoping that as soon as tomorrow, they can start transitioning her, but it will depend on how well she's doing.

If you're the praying type, this would be a good thing to pray for. She is incredibly frustrated with the communications options available to her, and being able to speak would alleviate so much stress!

There's not a lot of space in her room for flowers, and the ICU is very touchy about them, so we're asking people to wait until she's either in a different part of the hospital or back home to send any. She's loving the cards that are coming in, though, and she likes to look through them and see who's written to her. Since she can't really remember who all has made contact with her since she's been in the joint, cards are a good way for her to be reminded as many times as it takes that you've thought of her :-)

If you'd like to send a card and you have her home address, that's perfect! Brian and Alicia are staying at her house and are checking her mail and will get it to her as soon as they are in to see her. If you don't have her address, you can email me at hipmama1970@gmail.com and I'll send you an address to use.

Thanks for keeping Linda in your thoughts and prayers!

Friday, September 25, 2009

Medications reduced

Mom seemed greatly improved today. This was the first time I’d seen her so since the aneurysm. She asked relevant questions about what had happened to her. This was an improvement over the questions and comments she wrote previously to all of us, some of which seemed out of context. She communicated frustration with being in the hospital & not being able to speak or eat. She communicated this in a much more expressive way than I had seen since the aneurysm. As a slight testament to her level of awareness, she asked Alicia and me to get her dinner from Noodles. We told her we did wish that she could have the same thing for dinner that we were having, but that she was already receiving plenty of nutrients through her feeding tube and as long as she had the trach tube, she would not be able to eat normal food. She asked how long she would be in the hospital; she wants to go home. I can imagine how she feels.

Mom is no longer receiving the stronger pain medications or sedative, and, as a result, is much clearer in her statements and questions (through writing). I am writing left-handed since Mom is asleep & holding my right (I am right-handed) & I don’t want to take my hand away. This must be how she feels when trying to write. She is going to continue receiving an anti-biotic. The nurses have been trying to get an update from Dr. King about replacing the trach with one which will allow some speech. The nurse Lisa said it would be OK to rotate the bed tomorrow so that Mom could look out the window at the sky. The cuff of the trach will be deflated tomorrow to allow breathing through the nose and mouth and see if she can still clear fluid from the lungs that way. If so, it will be a step toward respiratory recovery.

9/25 Memory Continues to Improve

Brian and I are currently at BCH so you're getting this update real-time if you're reading this now. I arrived earlier this afternoon and Brian arrived shortly after getting off work.

Linda was wide awake when I arrived though fairly exhausted as she apparently had a rough night, not sleeping at all. This is due to her normal sleep cycle being off, most likely from the reaction her body is having to being off some of the stronger meds, as Jen mentioned earlier. In some ways, she's going through a bit of withdrawal and her body is still just trying to recover from all the trauma of what she has been through. I asked if it could be related to her sleep apnea, but apparently they have completely bypassed that problem with the traech.

Her hands do shake quite a bit which is challenging for Linda. She lifted her hands, at one point, to show me how they shake and gave me a face that seemed to say "Here's one more thing I've got to deal with right now that's uncomfortable and annoying." I explained to her that it could be withdrawal from the strong meds that she was on and that her body is just trying to heal and that it probably won't be a permanent condition.

Also, she has been pulling on tubes, but that is somewhat normal, according to the nurses. As she wakes up more and more she's becoming increasingly aware of just how uncomfortable she is and how much she is not in control of what is happening so it is all confusing and frustrating, I'm sure.  Also, and I'm sorry if this has already been mentioned, she is going through what is called ICU psychosis.

According to the nurse, she did sit up on the side of her bed this morning and is doing really well with her exercises and stretching. Go Linda!

I brought her some flowers from her garden and that seemed to lift her spirits. :-) She indicated she wanted them on the tray that fits over the bed so she could have them close and touched them on and off for several minutes. Thanks for encouraging me to do this, Jen. It definitely had a positive impact as did receiving a card from a group of friends. She read the card thoroughly and seemed truly touched.

I asked her if she remembered how long she would be in ICU and why and she shook her head no so unfortunately that information didn't seem to stick from the other day. However, she's also sleep deprived and I know that my memory seems to go a bit when I'm sleep deprived and stressed and she's had much more trauma than anything I've ever experienced so it's really not suprising that she has some gaps. I did explain to her that she would be in the ICU for a little over a week at least, but that she is truly improving day by day. In fact, I told her, in several cases I read concerning people who'd had the same surgery she had, people didn't wake up for weeks so she's doing remarkably well.

She does have a bit of a temperature, but that is most likely due to blood on the brain, according to the nurse.

She's writing a lot and most of the time I can make it out and a lot of her questions deal with how long before she can have real food, get some of the tubes out, go home, see Scruffles, talk, and finish dealing with all of this. She must feel very uncomfortable and exhausted about all of this, but she's staying strong and dealing with it all amazingly, I think.

At one point the nurse asked her if she'd ever taken anything to help her sleep and she wrote that she doesn't take anything because she tends to have chemical allergies. Her ability to answer such detailed, memory-based questions and the fact that she has regained a lot of motor control enough to open pens, open and apply chapstick, put on her glassees, do her feet and leg exercises, and pick up the remote point to daily improvements.

We also "talked" about the time she and Brian and I went to see Harry Potter for my birthday in July and she remembered both that outing and the fact that we saw a lot of previews that day for movies we wanted to see. She also seemed to remember the photo of the grandkids and Scruffles and we taped that to the wall so she could see it easily from her bed. She liked that. She also wrote a lot of details about Scruffles, the medicine he's on and how much he weighs so it seems she clearly has and is retaining memories ... again, one day at a time.

She wrote about the new Denver Post building or perhaps it had to do with the new Denver Post paper ... I'm not sure what that meant so if anyone knows if this is a recent story or event that took place in the news, please post a comment. She was watching the news earlier so she may have seen a story.

Also, she's been given some medicine to help her cough to keep the fluid and congestion out of her lungs so she's coughing quite a bit which requires a clearing of the traech tubes, but the nurse on duty is very good at helping with this.

She's also really looking forward to a visit from Davin and the kids tomorrow and, hopefully soon, Scruffles.

Oh, and the respiratory therapist was in here today checking on her and making sure everything was working properly and cleaning out her traech site. They said everything basically looks good though it was clearly uncomfortable for Linda while they moved around and cleaned the traech. She bore it well though.

I think the most upsetting aspect of all this is being unable to communicate as much as she would like and having limited mobility and just dealing with the sheer immensity of all that is happening to her. So, prayers for strength for her are definitely of need.

I'm sure Brian will have more to post later as he was in the room when Dr. Smith came in to check on her.

Thank you, all of you, for your thoughts and prayers! She loves hearing from people so if you have a message to send her or a card, please do send them as it helps her not to feel isolated.

Thursday, September 24, 2009

9/24 Getting Better All the Time

Linda is still off the ventilator, and they will move her into a smaller trach today or tomorrow. This is good news because this means that soon she will be able to eat and (trumpet fanfare) TALK!!!!

The hospital has a couple of boards she can use, one has a series of useful phrases she can point to, and the other has the alphabet, kind of like a ouija board only it's for brain injured people instead of dead people :-/ She doesn't like them, though, and waves them away preferring to write us notes, and mouth words and do some pretty talented pantomime. If there is a World Series of Charades, I'm putting my money on Linda, because she can get just about any idea across just by acting it out, it's pretty fascinating to watch!

Even so, I'm sure she'll be glad to put her inner mime back in the invisible box and resume regular speech with people. Hopefully that will be really soon, because she gets frustrated when we don't understand what she's trying to say, in spite of her talent. :-( It would bug me too, so I really try, but some concepts are just too complicated.

Today she is also off of the painkiller they've had her on, and her memory does seem to be improving. Also, she seems less agitated, which I was noticing really seemed to go hand in hand with the painkiller.

As she asked the nurses questions, the information seemed to "stick" better today. One of the nurses told her that she'd be in the hospital for 21 days at least, because that's the risk period for the vasospasms. That really stuck in her head, and later when her minister came by for a visit, she indicated it to him. That was AWESOME to see, because I feel like we're starting get a handle on where Linda is actually at in her head, without all the medications messing her up. I imagine we'll get an even better picture when she starts talking.

She's having a few issues with her day/night cycle. The nurse says that's really common, and they'll probably start giving her medication to help her keep them straight. Hopefully it will not affect her like the other meds did. They say that at night she agitated and wound up and doing odd things that aren't like her during the day, and that this is pretty normal for neurosurgery patients in the ICU for as long as she has been and will be. That can't be easy to deal with for her, and I hope that as she can do more things for herself this will alleviate some of the stress she's experiencing, right now she's pretty powerless.

Wednesday, September 23, 2009

9/23, a doozy of a day!

Today brought a lot of good news, and a fair bit of change.

The best news is that Linda is off of the ventilator. She still has the trach, and now they're saying that she probably will even after she's home, but there is no pressure through it. They are giving her a little extra oxygen to help her, but all the power behind the breathing, every time she draws a breath, is all her. That's GREAT NEWS!!!! Sometimes these patients take a very long time to breathe on their own, so again Linda is amazing us all.

With the ventilator gone, she was also able to get rid of the sedative they were keeping her on. If you think about it, it'd have to be pretty unpleasant to have a machine blow your lungs up like balloons 14-20 times a minute, right? So they keep ventilated patients on a sedative so they don't freak out during the process.

The sedative they had her on, propofol, is the same one that supposedly had a role in Michael Jackson's death. So, it apparently has a new nickname in the medical profession, "Jackson Juice." Hee hee! I was glad to see the Jackson Juice go, because it kept her groggy, and because it makes it very difficult for patients to remember anything while it's being administered. There's no way to tell where her brain function is with this kind of drug in her system. So, farewell propofol, I hope we never need to cross paths again!

Because she isn't on the propofol today, she was awake most of our visit, which was a real treat! But it was a little troubling, too. She's still on the painkiller, so that's affecting her memory, and I'm not sure how long the propofol will take to get out of her system, but it was obvious that today, at least, her memory is not at all together.

She seems really sharp on everything before the aneurysm, but nothing since. She doesn't know why she's in the hospital, and she's terribly worried that no one is taking care of her dog. It's very sweet, she asks about Scruffles's care more than anything else, because she doesn't remember that she's already asked and been told that he's safe and living with Davin and the kids and I right now. She's afraid that everyone's forgotten him, and he's in her house alone, suffering. Isn't that a horrible thought?

So, today I took a photo of the kids with Scruffles and I brought it to her at the hospital, so she can look at it. So far, she doesn't seem to remember that the photo is there, but I am hoping that will change as the propofol leaves her system, and hopefully as the painkiller goes, too.

Here's the photo:
Kids with Scruffles

Isn't he a cute dog? My kids say he looks like a cloud! :-)

Tuesday, September 22, 2009

New trach soon

Mom was awake when I walked in and smiled when she saw me. Right away she asked to have paper and a pen, and she asked about her red purse (backpack), and I let her know that we had picked it up. We have been helping her memory by reminding her where her belongings are, and the doctors and nurses have said it is normal that she will not yet be able to remember things from day to day, due both to the trauma and some of the strong medications she’s receiving. We decided not to show her the notes she had written before, since they don’t yet help her understand what’s been happening & which things have been taken care of. It’s understandable with the sedative she’s been given.

Physical therapy went fine again today, and she stood for a short time. Doing that really tires her out. Rich, the nurse, said she might get a different trach tomorrow or Thursday which will not have the cuff so that she can speak and breathe through her nose & mouth. The nurse also gave her a small dose of a stronger pain medicine, but kept the amount low so as not to limit her ability to respond when doing exercises & cognitive testing. She was also receiving an anti-biotic for reducing any lung infection, in addition to two medications to protect against vasospasm.

9/22 First Day of Fall

And it looks it! It's a cold, wet gray day.

Unfortunately, the view from Linda's room is mostly sky, the bottom half of the window is frosted white. So, when the sky is all hazy gray, the window isn't much to look at. :-P

Today, Linda had much less swelling, but her right eye (the side where they did the surgery) is still mostly swollen shut. She spent most of the visit sleeping. Not much of a change from yesterday.

Monday, September 21, 2009

Monday 9/21 (Last Day of Summer)

Linda's new room has a nice view!

Today they are working more on getting her off of the ventilator, so between the CPAP trials (trying for 4 times a day) and getting her standing on her own (!) she was pretty worn out. Most of my visit was spent trying to keep quiet and not bug her.

Linda didn't write any notes today, but there were some from last night. Some of the time she seemed pretty well connected to reality, other times less so. Her nurse today said that's very common with the medications she's on. Two in particular can cause these problems, and they will go away when she can get off of the ventilator.

So, when she's off of the vent she can get away from the meds that can be causing a little loopiness, AND she will have the kind of trach that will allow her to talk. No more of this note-writing nonsense! Two excellent reasons to pray for her to have the strength for that, and to keep rooting her on. :-)

I got a chance to speak with the hospital social worker today, too, and she helped me to sort out what insurance issues we need to pin down right away, and what questions we need to ask at Linda's work. That was really helpful. If you have a loved one who's going to be in the hospital for a while, ask to see the social worker, they know all the ins and outs and can point you in the right direction!

Other news for today, the nurse told us that they may keep her in the ICU until the risk for vasospasms has passed, usually 21 days after the surgery. Since the surgery went so well, the vasospasms are now the big worry. Any time in the next 3 weeks, the blood vessels in her brain could clamp down and cause a stroke, which could lead to brain damage or even death. They're watching carefully for signs of that happening, and taking every precaution, because that could undo all the good news she's had so far.

So, we're just praying and waiting.

THIS JUST IN!!!! Just got word from Brian that he's located her glasses and he's taking them to her right now. We've been looking for them for days. Brian's a HERO!!!! Hopefully he'll tell you all about it when he posts next :-D

Sunday, September 20, 2009

New Room in ICU and a Visit from Her Minister

I visited with the kids today so Linda got to see them and they got to see her since just before her surgery. She's doing better, having made improvements over yesterday. Although I wasn't there to see it, she was able to stand with the help of her therapists and nurses, which is ahead of where they thought she would be!

She had been placed in a room with a ceiling lift to assist patients with standing, because it was assumed she would need it. She doesn't apparently! So she was moved to another room because she is doing so well!

Her writing is improving. At this point because of the trach (ventilator tube) she can't speak - so writing notes is her means of communicating!

David, her minister from Unity church stopped by to see her and said a prayer with her. It meant a lot to her. So many people are praying for her and she has love coming from many different people and faiths.

Saturday, September 19, 2009

Catch up

On the afternoon of September 15th, Linda collapsed at work and was rushed to the hospital. After testing, she was found to have a burst aneurysm in her brain, and she was rushed into surgery to place a ventriculostomy, a tube to relieve the pressure in her brain, and monitor her intracranial pressure.

They also placed a central line, for long term IV access, an arterial line to monitor her blood pressure, and a tracheostomy to keep her airway open.

That first day, we were told she would not likely wake up for some time, and that, because she'd been so difficult to intubate, and had been in such bad shape when she reached the hospital, that most likely she'd pass away, or suffer severe disability because of this event. If she did wake up, it wouldn't be for weeks, or possibly months, and they said she may never regain any sort of meaningful consciousness.

Also, that first night, they noted that she hadn't moved her left side at all, and it was suspected that she had some permanent paralysis on that side.

But, by the next day, she was moving all parts of her body with some amount of purpose, and she could nod and shake her head in answer to simple questions.

The next morning, the 17th, she was far more awake, and writing notes to the family and the doctors and nurses concerning her wishes. The doctors and nurses were shocked and amazed, and we were over the moon!

That same day, she was taken into surgery to repair the burst aneurysm, and another aneurysm they'd found during an angio-CAT scan. We were told that the surgery would probably set her back a bit, since it was another insult to her brain. It added more risk to her recovery, but without it the rupture would eventually repeat and she would be in far worse shape.

The surgery was called "clipping", and would close off the aneurysms so they wouldn't be a danger any more. Dr. Mason performed it while using a tiny microscope, and it went as well as anyone could have hoped.

And, within an hour of the completion of the surgery, Linda was again awake and aware. We always knew she was strong and resourceful, but I don't think anyone knew how deep these qualities went!

Brian and Davin are Linda's sons and Alicia and I are the daughters-in-law. We plan to keep this blog running to update all of the people who are following Linda's story.

Please keep Linda in your prayers while she's on her Mindful Journey.