This is all from Linda!
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Thanks Giving for a Series of Miracles
For all your kind thoughts and prayers, thank you. They worked!
I don’t have memory of what happened at the early and middle stages of the aneurism, brain surgery, and recovery, so I’ve been learning from this blog created and kept by my family. Here are some of the things I know about and am thankful for, at this time approaching Thanksgiving. It seems like I’ve been through not just one, but a series of miracles. Warning: this is long – there were a lot of miracles!
I am thankful:
* That I am still alive in the world to serve and see what happens next
* That after the stroke, my brain and mind work well, that I am not paralyzed on one side of my body, that I can speak normally.
* That the aneurism (with no previous warning signs) “just happened” to occur at work and that my office mate “just happened” to promptly find me unconscious on the floor, with difficulty breathing. If the burst aneurism had happened at home, I probably wouldn’t be around to write this.
* That co-workers promptly called 911 and checked on me. It “just happened” that the ambulance responded quickly and the hospital was nearby. I was difficult to intubate, which can happen with people with severe obstructive sleep apnea. My kids were told that I was without oxygen for 12 minutes. Since people can go only 3 to 5 minutes without oxygen without brain damage, either the 12 minute estimate was wrong, or there really was another miracle regarding my brain.
* That a tracheotomy done in emergency at the hospital allowed me to breathe.
* The saying goes “it isn’t brain surgery” –but wait, it is in this case. It “just happened” that Dr. Alexander Mason became my neurosurgeon. He was with the Cleveland Clinic and later as part of a fellowship did 200 aneurysm surgeries in one year. I’ve heard that some surgeons don’t want to do aneurysms because the fatality rate is so high, and those who survive surgery are “never the same.” He spoke frankly with my children, who were responsible for deciding whether to agree to surgery. (I had filled out legal papers previously.)
* I showed no movement on my left side and the prospects for recovery from future surgery didn’t look promising. When my kids returned to the hospital and asked how I was doing, the staff said “she’s writing!” Because of the trach, I couldn’t speak. Apparently I was in and out of consciousness and “just happened” to respond to questions by writing answers. That was enough for my kids to make the decision to agree to surgery.
* Throughout, my sons and daughters-in-law made wise decisions, ran interference with the hospital and my treatments, and were loving and supportive, visiting frequently.
* The surgeon and his team clipped the burst aneurism, and “just happened” to treat another one in even a more difficult place, that looked like it would burst in the future. I’m so glad for Dr. Mason’s skill.
* There is a risk of potentially deadly vasospasms particularly for 21 days after surgery, but I “just happened” to avoid one. ICU went well. I’m glad I don’t remember being on a ventilator. I was sedated for weeks. When I finally woke up and stayed awake, I found tubes everywhere, which were eventually removed as I became more functional.
* Almost all hospital staff who interacted with me said “you look great.” Good thing I didn’t see my swollen state after surgery! A couple of healthcare professionals called me a miracle. As the ICU aide wheeled me to rehab, he said excitedly ”we don’t send many people directly to rehab!”. Eventually I was able to speak with the trach, and eventually the trach apparatus was removed and the throat opening healed. Eventually my voice became more like its former self.
* After 6 weeks, I was finally able to leave the hospital. I was home for a weekend but awoke on Monday morning with a swollen, sore leg. It “just happened” that I had an appointment with my family doctor that day. She promptly sent me to Imaging for an ultrasound, and I was promptly admitted to hospital Emergency and then the hospital for several large, potentially deadly blood clots. She said a couple of times that she was so glad I saw her that day. Me too. See what I mean about a series of miracles?
* I completed at-home visits from a home healthcare service providing nursing and more physical and speech therapy assistance. Follow-up visits with the neurosurgeon, pulmonologist, cardiologist, and family doctor were scheduled. I graduated from a walker to a cane to good balance. I’m daily regaining muscle strength after being confined to a bed for six weeks.
* The hospital bill alone is almost $300,000, not counting doctors, radiology, labs, and the ambulance. Just one CT head scan is $4,000 and I had several, with one more scheduled soon. I’m grateful for healthcare insurance from work and Medicare.
* Your caring and love, cards and flowers, brightened the experience and still are very encouraging and treasured.
Thank you, God! Let’s celebrate Thanksgiving!
Linda
Tuesday, November 24, 2009
Saturday, October 31, 2009
Just a quick update!
Linda was released from the hospital for the second time on Wednesday and is home and doing well now!
Davin was up there yesterday doing some minor errands and he says she's been able to stop the shots she was receiving to break up the blood clot in her leg, and is able to take oral medication instead. What a relief!
Also, he said that she's getting around better inside her home, and needs the walker less than she did even at the beginning of the week. Every day is a little better, which is especially amazing considering that some people with her level of complications at the beginning might still not even be conscious yet. It seems like it's been a long time, but it's just over six weeks since her stroke. We are definitely counting our blessings!
Davin was up there yesterday doing some minor errands and he says she's been able to stop the shots she was receiving to break up the blood clot in her leg, and is able to take oral medication instead. What a relief!
Also, he said that she's getting around better inside her home, and needs the walker less than she did even at the beginning of the week. Every day is a little better, which is especially amazing considering that some people with her level of complications at the beginning might still not even be conscious yet. It seems like it's been a long time, but it's just over six weeks since her stroke. We are definitely counting our blessings!
Tuesday, October 27, 2009
Linda Back in Hospital
Dear Faithful Readers,
Linda was discharged from the Boulder Community Hospital rehab center on Friday, Oct. 23. The transition home was fairly exhausting for her though she did sleep some 14-16 hours within the first 24 hours of her return. This was very relieving to her since she had experienced significant difficulties getting sleep in the hospital. Saturday was spent mostly resting though she did have a visit from one of the home care nurses who walked through some minimal physical tests and paperwork. Supposedly, Linda is to have fairly regular visits from a nurse with this service to monitor her progress along with several therapists who will visit each week, several times a week for occupational, speech, and physical therapy. On Sunday she was able to get up more often and was able to get a few things for herself, take her medication, and be generally more ambulatory. She was still fairly easily fatigued as it is definitely a different story to function at home vs. the hospital. It's definitely going to be a process of healing though she is definitely remaining strong, positive, and trying to become more and more active. However ....
**NEWSFLASH**
On Monday, we took Linda for a routine follow-up with her family doctor. Her doctor identified what she believed to be a blood clot in Linda's leg. We immediately went down to imaging for an ultrasound and the results proved that she indeed had a large cluster of blood clots. Then, on the advice and instruction of her doctor, Linda was admitted to the hospital via Emergency so that she could receive treatment for the blood clot. Originally, she was only to be there for about 24 hours, but we received news this afternoon that the doctors are worried about her blood sugar levels and want to continue monitoring her reaction to the blood thinner. So, please, prayers that she makes it over this hiccup in her recovery process. We will keep you posted when more information becomes available.
PS>Brian and I are still here at Linda's so if you need to get her a message, you can call her home and we will relay. She has really appreciated all the cards and well wishes!
Linda was discharged from the Boulder Community Hospital rehab center on Friday, Oct. 23. The transition home was fairly exhausting for her though she did sleep some 14-16 hours within the first 24 hours of her return. This was very relieving to her since she had experienced significant difficulties getting sleep in the hospital. Saturday was spent mostly resting though she did have a visit from one of the home care nurses who walked through some minimal physical tests and paperwork. Supposedly, Linda is to have fairly regular visits from a nurse with this service to monitor her progress along with several therapists who will visit each week, several times a week for occupational, speech, and physical therapy. On Sunday she was able to get up more often and was able to get a few things for herself, take her medication, and be generally more ambulatory. She was still fairly easily fatigued as it is definitely a different story to function at home vs. the hospital. It's definitely going to be a process of healing though she is definitely remaining strong, positive, and trying to become more and more active. However ....
**NEWSFLASH**
On Monday, we took Linda for a routine follow-up with her family doctor. Her doctor identified what she believed to be a blood clot in Linda's leg. We immediately went down to imaging for an ultrasound and the results proved that she indeed had a large cluster of blood clots. Then, on the advice and instruction of her doctor, Linda was admitted to the hospital via Emergency so that she could receive treatment for the blood clot. Originally, she was only to be there for about 24 hours, but we received news this afternoon that the doctors are worried about her blood sugar levels and want to continue monitoring her reaction to the blood thinner. So, please, prayers that she makes it over this hiccup in her recovery process. We will keep you posted when more information becomes available.
PS>Brian and I are still here at Linda's so if you need to get her a message, you can call her home and we will relay. She has really appreciated all the cards and well wishes!
Friday, October 23, 2009
Today's the Day!
Barring any more delays, Linda should be home today! We are so grateful for the prayers and well-wishes. It has been an amazing journey so far, and we have all been blessed by all of you.
Yay!
Yay!
Tuesday, October 20, 2009
Linda's coming home!
This is the news everyone, including Linda, has been waiting for: she's coming home! Linda will be home this Thursday - that's right, in two days. She will be able to do most of what she needs by herself since her recovery has gone so well. There will be some tasks Alicia and I will help with at first, but Linda has already handled this healing process so well. She will still be working with a therapist for the foreseeable future and her physical mobility is still a work in progress. But, she seems to have not let everything that has happened slow her down any more than it had to. And, she's been motivated and active in doing therapy, along with having enough patience to give herself the time she needs to heal. I'm so proud of her for handling it all so well! And I'm just excited for her to be back home. She so deserves it. See you soon, Linda!
Wednesday, October 14, 2009
Hello, Linda!
We had a very special reader today, as Linda was able to log in from the hospital and catch up on her back story. Hey there, Linda!
Hopefully she'll be able to log on soon and put in some updates of her own :-)
Until then, she wanted me to let you all know that she is getting some practice in with using her cane instead of a walker, so she can be done with that soon. They're having her work on going up and down stairs and try to use her CPAP machine at night, all in the hopes of (drum roll please) sending her *HOME* late next week. Can you believe that?
There is still a lot to be done before she can come home, but she's making great strides in rehab. She's walking much better than she was on Sunday when I saw her, and I was surprised then by her ability. Things are changing fast!
Also, we brought Scruffles up for a visit for the first time, and they were quite happy to see each other. We're praying that it won't be long until they're back together full time.
Hopefully she'll be able to log on soon and put in some updates of her own :-)
Until then, she wanted me to let you all know that she is getting some practice in with using her cane instead of a walker, so she can be done with that soon. They're having her work on going up and down stairs and try to use her CPAP machine at night, all in the hopes of (drum roll please) sending her *HOME* late next week. Can you believe that?
There is still a lot to be done before she can come home, but she's making great strides in rehab. She's walking much better than she was on Sunday when I saw her, and I was surprised then by her ability. Things are changing fast!
Also, we brought Scruffles up for a visit for the first time, and they were quite happy to see each other. We're praying that it won't be long until they're back together full time.
Monday, October 12, 2009
Flowers!
Jon Rush reminded me... YES, Linda can receive flowers now that she's out of the ICU. She has more shelf space and a large window, and the rules are more generous on the rehab floor.
Thank you Jon. :-)
Thank you Jon. :-)
Sunday, October 11, 2009
Movin' on Up!
Linda is out of the ICU! Woooooohoooooooooooo!!!!!!!!!!!!!
She spent her first full day on the Rehab floor yesterday, and is poised to take the place over! She's still in the same hospital, but in a totally different area, where all of the patients are there for long-term physical rehab. Linda's getting all different kinds of therapy, and it adds up to several hours a day. It makes me tired just thinking about it, and I'm sure I'm not the only one!
Today she let us know that she can wear her own clothes and shoes, and she needs them for her exercises, so Anya and I brought some up for her. (Alicia had packed them, and did a wonderful job, throwing in some extras that were very welcomed. Big hand for Alicia!)
While we were there, we got to watch part of a P/T session. They had her walk down the hall (she used a walker, but only for balance) and lay on a large adjustable, elevating gym mat. The mat was pretty neat, she could do all of the "floor" exercises, without having to get down to or up from the floor. She's rockin' and rollin' and really wants to get back to her old level of intensity. It's good to see her moving so much, after all that time when she could only lie there.
She's eating in the dining area with the other rehab patients, so she can meet some other people now. The Neuro-Trauma ICU was an amazing unit, but it isn't really designed for patients like Linda, who have social needs as well as medical ones.
Hopefully in the next few days we'll find out more about how long Linda will be in this segment of her treatment, and what may come next. She had a battery of tests of Friday, but they haven't been analyzed yet. When they are, the docs and the folks from all the different branches of therapy will meet and hammer out a treatment plan.
The updates will probably be a little fewer and farther between while she's in rehab. She's not able to do her own updates yet, but she doesn't have the time or need for us to visit her daily like we did when she was in the ICU. Plus, blessedly, things aren't happening with nearly the intensity they used to! We'll still keep you updated as often as we can, though.
Thanks again for everyone who's been praying for Linda and sending positive thoughts. They're all making a real difference in her life!
She spent her first full day on the Rehab floor yesterday, and is poised to take the place over! She's still in the same hospital, but in a totally different area, where all of the patients are there for long-term physical rehab. Linda's getting all different kinds of therapy, and it adds up to several hours a day. It makes me tired just thinking about it, and I'm sure I'm not the only one!
Today she let us know that she can wear her own clothes and shoes, and she needs them for her exercises, so Anya and I brought some up for her. (Alicia had packed them, and did a wonderful job, throwing in some extras that were very welcomed. Big hand for Alicia!)
While we were there, we got to watch part of a P/T session. They had her walk down the hall (she used a walker, but only for balance) and lay on a large adjustable, elevating gym mat. The mat was pretty neat, she could do all of the "floor" exercises, without having to get down to or up from the floor. She's rockin' and rollin' and really wants to get back to her old level of intensity. It's good to see her moving so much, after all that time when she could only lie there.
She's eating in the dining area with the other rehab patients, so she can meet some other people now. The Neuro-Trauma ICU was an amazing unit, but it isn't really designed for patients like Linda, who have social needs as well as medical ones.
Hopefully in the next few days we'll find out more about how long Linda will be in this segment of her treatment, and what may come next. She had a battery of tests of Friday, but they haven't been analyzed yet. When they are, the docs and the folks from all the different branches of therapy will meet and hammer out a treatment plan.
The updates will probably be a little fewer and farther between while she's in rehab. She's not able to do her own updates yet, but she doesn't have the time or need for us to visit her daily like we did when she was in the ICU. Plus, blessedly, things aren't happening with nearly the intensity they used to! We'll still keep you updated as often as we can, though.
Thanks again for everyone who's been praying for Linda and sending positive thoughts. They're all making a real difference in her life!
Wednesday, October 7, 2009
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.
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.
Tuesday, October 6, 2009
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.
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.
Sunday, October 4, 2009
Wants to pack her bags!
Linda had a good day, her nurse said he's surprised at how quickly she's getting stronger with standing and walking. She's nowhere near back to normal, but he said it can come back quickly once it starts. Words of encouragement!
The best part of the day was she remembered something she asked me to bring Saturday, right when I walked in she asked without being prompted! I hope this means her post-aneurysm memory is getting back on track.
We talked (yes, talked! She's able to talk thru her trach now, even without the Passy-Muir valve) about going to the rehab center, getting out of ICU. I think she's excited. She asked for me to pack up her clothes, pictures and magazines into her suit case! I told her and she knows she's not going to leave for at least a few days, but I think its her way of saying "I'm ready!"
The feeding tube is probably going to go away soon, based on how well she's doing with swallowing/breathing. We're all ready for that, sooner the better.
That's all for now, thanks for your prayers and support.
The best part of the day was she remembered something she asked me to bring Saturday, right when I walked in she asked without being prompted! I hope this means her post-aneurysm memory is getting back on track.
We talked (yes, talked! She's able to talk thru her trach now, even without the Passy-Muir valve) about going to the rehab center, getting out of ICU. I think she's excited. She asked for me to pack up her clothes, pictures and magazines into her suit case! I told her and she knows she's not going to leave for at least a few days, but I think its her way of saying "I'm ready!"
The feeding tube is probably going to go away soon, based on how well she's doing with swallowing/breathing. We're all ready for that, sooner the better.
That's all for now, thanks for your prayers and support.
Saturday, October 3, 2009
DJAMST in to see Linda
Davin and the all the kids and I were healthy enough to get in to see Linda today. She calls just DJAMST, because it's all of our first initials in order (Davin, Jen, Anya, Maya, Sage and Tiernan.) Her room in the ICU is pretty small, but it's still larger than our pop up camper, so we made it work for about 20 minutes. Then the kids and I cleared out so Davin could have some 1 on 1 time with his mom.
Linda was on her Passy-Muir valve again, and this time she was talking like a champ. She's still on the quiet side, but she can belt out full sentences and complex thoughts. It was really good for the kids to be able to hear her, I think they are feeling much better about how she's doing now.
She had some advice for all of us. She wants us to stay active and keep our bodies in good shape. Also, to know to remember that God made us, and that we can rely on Him to help us.
She also told us that she's SHOCKED at how weak she is. Because she spent the first week and a half or so just laying in bed under sedation, and she hasn't been able to do much since then, she's lost a lot of muscle mass. She still doesn't remember how long she's been in the hospital (19 days) and so it's even more surprising to her how much muscle she's lost. So, to sit up, get to a standing position and walk a few steps to a chair is tremendously difficult for her now. The P/T folks are working her out a couple of times a day now, and hopefully she'll be strong again soon.
A bit of bad news today; we don't have her glasses! We have her reading glasses! I've noticed that she can't see the items taped on the walls, or the clock, etc, and I wasn't sure why. Today she told us that she's got the wrong glasses. They're better than nothing, but she can't see anything farther away than an arm's length. Since Brian and Alicia have looked in every nook and cranny in her house for her glasses, and we know her coworkers have checked all over the office, we believe her glasses may have been lost in the ER. We need to find her eye doctor and see what it will take to get her a replacement set. Poor thing!
Also, because the incision from her brain surgery is healed up, and the ventriculostomy is out, they said they can wash her hair later today. This will be her first real shampoo since the aneurysm. She looks fine, but she's had blood and betadyne and everything else in her hair, and I bet she doesn't even realize how much better that will make her feel to get clean. Yay for shampoo!
BIG NEWS!!!! Her nurse stopped Davin and started to tell him about the process to move her to a rehab center. It's good to get more information about this, since it could be happening soon, maybe even in the next week! We don't know how long she'll be there, but it's a big step on the way to going home.
Linda was on her Passy-Muir valve again, and this time she was talking like a champ. She's still on the quiet side, but she can belt out full sentences and complex thoughts. It was really good for the kids to be able to hear her, I think they are feeling much better about how she's doing now.
She had some advice for all of us. She wants us to stay active and keep our bodies in good shape. Also, to know to remember that God made us, and that we can rely on Him to help us.
She also told us that she's SHOCKED at how weak she is. Because she spent the first week and a half or so just laying in bed under sedation, and she hasn't been able to do much since then, she's lost a lot of muscle mass. She still doesn't remember how long she's been in the hospital (19 days) and so it's even more surprising to her how much muscle she's lost. So, to sit up, get to a standing position and walk a few steps to a chair is tremendously difficult for her now. The P/T folks are working her out a couple of times a day now, and hopefully she'll be strong again soon.
A bit of bad news today; we don't have her glasses! We have her reading glasses! I've noticed that she can't see the items taped on the walls, or the clock, etc, and I wasn't sure why. Today she told us that she's got the wrong glasses. They're better than nothing, but she can't see anything farther away than an arm's length. Since Brian and Alicia have looked in every nook and cranny in her house for her glasses, and we know her coworkers have checked all over the office, we believe her glasses may have been lost in the ER. We need to find her eye doctor and see what it will take to get her a replacement set. Poor thing!
Also, because the incision from her brain surgery is healed up, and the ventriculostomy is out, they said they can wash her hair later today. This will be her first real shampoo since the aneurysm. She looks fine, but she's had blood and betadyne and everything else in her hair, and I bet she doesn't even realize how much better that will make her feel to get clean. Yay for shampoo!
BIG NEWS!!!! Her nurse stopped Davin and started to tell him about the process to move her to a rehab center. It's good to get more information about this, since it could be happening soon, maybe even in the next week! We don't know how long she'll be there, but it's a big step on the way to going home.
Friday, October 2, 2009
Better breathing!
At midnight a lot of fluid was drawn from Mom’s lungs, & earlier at about 4 pm more had been drawn from the other side. This will help Mom’s overall oxygenation. No wonder she’s been coughing so much! The suctioning made her throat sore & she told me so. A cardiologist will review her condition & medications tomorrow & make any needed changes. She is receiving medication for heart arrhythmia and others for heart health maintenance. Today Mom also sat on the side of the bed - a good amount of activity.
Mom gave me some advice today! She said I am overqualified for my job & to make sure I don’t get stuck there. She said not to work overtime this week but to take overtime after that for the money. I reassured her that Davin and I were seeing to her financial matters as well as the details of her insurance and benefits. Mom also opened cards from Benita Woody, Susan Buhr, and from Gloria, Dave, Allaina, Bruce & Provence from NSIDC. She was so happy to read those and know friends were thinking of her.
Mom gave me some advice today! She said I am overqualified for my job & to make sure I don’t get stuck there. She said not to work overtime this week but to take overtime after that for the money. I reassured her that Davin and I were seeing to her financial matters as well as the details of her insurance and benefits. Mom also opened cards from Benita Woody, Susan Buhr, and from Gloria, Dave, Allaina, Bruce & Provence from NSIDC. She was so happy to read those and know friends were thinking of her.
ZZzzzzzzzzzzzzzz
Not a lot to report from my visit, because Linda slept the whole time. I asked the nurse if that was OK, because in the past they've asked us to keep her up, but he said that it's fine. So I let her saw logs to her heart's content. If you can't sleep away a lazy Friday, what good is a stay in the ICU anyway?
She did wake up for about 8 minutes on the Passy-Muir valve, which knocked her right back out.
Also, we got news about her thoracentesis from yesterday. They were only able to do one side, and hope to do they other side later today. Even so, they pulled out 600 ml. That's 20 oz. of fluid they found in her chest cavity, just on one side, preventing her lungs from expanding. Think about that the next time you're drinking a 20 oz. bottle of soda, that's a little scary, isn't it?
Poor thing!
She did wake up for about 8 minutes on the Passy-Muir valve, which knocked her right back out.
Also, we got news about her thoracentesis from yesterday. They were only able to do one side, and hope to do they other side later today. Even so, they pulled out 600 ml. That's 20 oz. of fluid they found in her chest cavity, just on one side, preventing her lungs from expanding. Think about that the next time you're drinking a 20 oz. bottle of soda, that's a little scary, isn't it?
Poor thing!
Thursday, October 1, 2009
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.
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.
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!
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.
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.
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.
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:
Isn't he a cute dog? My kids say he looks like a cloud! :-)
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! :-)
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.
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.
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
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.
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.
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.
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