Kissing Many Things Goodbye Today! And a Great Big HELLO!!!!!!

Today they removed Linda's trach and catheter, and since she passed her swallowing test, we expect to see her nasogastric tube (NG tube) go, too!

This whole time, Linda's been receiving nutrition either through her IV or through her NG tube, but now they're saying she may get ACTUAL FOOD tonight for dinner since she's passed the swallowing test today.

Beforehand, the nurse explained that for the swallow test, they would take her to the x-ray department and feed her radioactively-tagged foods of varying textures. As she swallowed the foods, they watch on the scans to see if they go down properly and not into her lungs, etc. I joked with her, "Wow Linda, there's good news and bad news. The good news is that you get to eat real food! The bad news is that it's all radioactive." She looked at me and shrugged her shoulders and said, "I don't care!" with a big goofy smile. Yay, Linda! It's good to see her sense of humor is back.

Other big news, maybe the biggest, is that Linda seems to be making and retaining new memories quite well now. It's literally like she "woke up" some time over the last few days. She's remembering conversations about her rehab choices, and which tests and medications she's had, and when her kids and grandkids have been in to see her, and everything else that's happened. She has no recollection from before the weekend, and it's unlikely she will remember that, but that's pretty normal. And really, most of that stuff was awfully unpleasant. If she had to "lose" some time from her life, I can't think of three crummier weeks! We'll just chalk that up to taking out the trash, and move on. ;-)

I asked her if she knew that she is doing much better than everyone has expected her to, and she said, "I figured I must be, because anytime someone comes in who doesn't see me every day they say, 'WOW, you look really great!!!!!'" Hee hee! Yep, she really is looking good.

She says she's still pretty overwhelmed by the hospital routine (which is essentially all new to her) but that she may be ready for visitors sometime soon. Keep checking here and we'll keep you posted. I know a lot of folks want to come and see her, so we'll try to get that moving as soon as she's up to it. You guys are really neat people! Linda's blessed to have so many people praying for her, caring about her and checking up on her :-)

We believe that Linda will be moved tomorrow. Of course, nothing's ever sure in a hospital setting until after it's done, but that's what they're saying today. They're not saying where she's going yet, but the smart money at this point is on the LTAC that Davin described yesterday. We'll keep you updated as we find out what's happening.

Day 21 : Moving on up (soon, or not!) and no more trach!

Great news today, Linda's lungs are looking clear and much improved today. She's going to be getting rid of the trach! That's one item I know she won't miss, although it served her very well over the last 3 weeks. I asked her if she wanted to keep it as as souvenir, but she declined...

Otherwise, she's in good spirits. She told Brian and I that she's overall very positive, only occasionally upset, and is motivated to work hard to get better and get home!

We're getting very close to changing phases from acute surgery and post-surgical care to rehabilitation and therapy. This is great news that we've been preparing for at least a couple weeks. I believe she will be moving on in a couple days or so.

On the other hand, hospitals have their own rhythm and gait to them, and it's just best to go with it sometimes - we are still not certain just what type of care will be best for Linda and exactly when she will be ready to go, but Brian and I took a tour of the most likely place today. It's what's known as an LTAC (Long Term Acute Care), which is designed for stays of 25-30 days on average and focuses on therapy and rehab more so than a short term acute care hospital would (where a typical stay is 5-7 days). So what we really know for sure is that we don't know exactly where or when, but that moving from this hospital to therapy/rehab is going to be a huge improvement and will help her get back to the life that she had.

Look Who's Talking!

Linda had a trial run with the Passy-Muir valve today, and she was able to talk for 15 minutes! The speech therapist kept her going, asking her questions about her house, and her dog, and stuff that she likes to do, etc. It was SO NICE to hear her speaking! They said they'll try it for a little longer every day, and soon she'll be talking like a champ and using the valve all the time that she's awake.

Right now her voice is very rusty, and it was a lot of effort to speak. So, she was out for a nap after the 15 minutes. But she was so happy to just be able to talk out loud. I actually got pretty teary, I was so excited for her. And PROUD of her! What a big step this is!

The valve works by allowing air to go in through it, but not go out. So, when she breathes out, the air passes the trach and goes up through her vocal chords and out her mouth, just like normal speech. So, if she wanted to, she could talk on the phone or into a microphone, and it would sound just like anyone else.

While the valve was on her trach, they used a nasal cannula to deliver oxygen to her. So, the oxygen wasn't going into the trach, it was going up her nose. Her saturation was excellent the whole time, which bodes well for her getting off of the trach entirely, hopefully soon. Yay!

AMAZING NEWS!!!! I believe Linda remembered something today from yesterday. I may be reading too much into this, so I'll tell you all what happened and you can decide what you think.

Yesterday, one of the respiratory therapists came in to do the regular trach cares, and she didn't like the placement of Linda's pulse oximeter or "pulse ox." She took the old one off of her Linda's finger, and put a new one on her ear lobe. The therapist and I chatted a bit, because I'd never seen one on an ear lobe before, and she explained all the places you can put them.

Today, the same respiratory therapist came in to check on the supplies in Linda's room. As she walked in front of Linda, Linda looked at her, blinked a couple of times, then slowly moved to point to her earlobe and the pulse ox. I said, "Yes, Linda, she's the person who put your pulse ox on your earlobe, you do remember that?" She smiled and nodded her head.

I really do think she remembered her from yesterday! If so, that's the first time I've seen that happen. Hopefully we'll see more of that. Keep praying, your prayers are working!

Meanwhile, back in lung news... Later today they're planning to do a procedure called a thoracentesis. They'll use ultrasound to find pockets of fluid that are outside of her lungs, but inside her chest cavity. Then, they'll use a local anesthetic, and insert a needle or catheter and draw out that fluid. The doctor said that this will allow her lungs to inflate more fully, so she can breathe better and cough more efficiently. Hopefully, this will help resolve her aspiration pneumonia more quickly, since her lungs are causing her so much trouble right now.

Linda asked me to read out loud to her today from a book called Spontaneous Evolution. We read two chapters, and it's pretty interesting so far. That's the first time she's asked for a read-aloud, and she seemed pretty on track with paying attention. We even "discussed" it a bit, through her notes. I thought that was a tremendous bit of fun, and something she just wouldn't have been up for even a week ago.

The only weird, downer bit of news today is that last night she had a period of abnormal heart rhythm called atrial fibrillation, or "afib." They're saying that it's not really a big deal, and they've added a medication to help keep it under control. I just don't like adding new problems at this stage of the game.

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!

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.

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:


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

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

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.

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.