Thursday, April 30, 2009
I spent the morning with Mommom and then made a B line for the hospital after Nick, Mom's nurse, called with the exciting news. Once we got there, Nick stayed a large amount of time with us talking about the exam from earlier in the day. Unfortunatly, that morning was when Mom spent most of her awake time. So, by the time we all arrived, she was worn out from the day. We got a few moments with her while her eyes were open. Chuck used the opportunity to write open your mouth...she tried but didn't quite get there. He shared the words I love you on the white board before she drifted off back to sleep.
So what does all this mean???
Apparently two huge pieces of information about Mom and her recovery:
1. She comprehends. We know she can read and comprehend. We are also pretty sure she can hear and comprehend but, that connection in her brain might not be as strong to allow her to respond.
2. The connection between a command (what she read) and her ability to respond is present. She may not physically be able to do what is asked, but she does try.
We are still waiting to hear from insurance...they notoriously take a long time for this step. Once we hear from them, Mom can be moved to "Select Care". There she will begin receiving physical and occupational therapy while she continues to heal.
Continue to pray for healing. God has been so good thus far! We would love to see more breakthroughs like yesterday.
Wednesday, April 29, 2009
When he was in examining Lynne this morning, he was trying to talk to her and even though her eyes were open, she wasn't responding to him. So, he thought he would try something different.
He grabbed a piece of paper, and on it wrote, "Blink your eyes." He held it up to Lynne, she read it, and blinked her eyes.
He took it again, wrote, "Raise your eyebrows." Lynne read it, and raised her eyebrows.
"Blink twice." She blinked twice.
They told Chuck to pick up a white board on his way to the hospital today, because they have discovered a way to communicate with his wife! This is such encouraging news for all of us! It's felt pretty gloomy, tiring and desperate lately. All I know right now is here on the post. I'm sure Leigh will do a more lengthy one later tonight with more details.
Praise the Lord! Lynne is still in the fight!
Friday, April 24, 2009
Chuck, John, and I were back visiting Mom today, and we were shouting and squeezing her hands, trying to get any sort of a response from her. She opened and closed her eyes a few times before "really" opening them to look at us. It is hard for her to keep them open for too long. Well, I could see the corners of her mouth twitching. She has been twitching her nose as well. I made a comment about her smiling to me and then she actually did...it was like one of those smiles you get from her when she is just humoring you...but I'll take it. I asked her to smile for John, and she gave the same sort of smile. Then she did it for Chuck and later for Mommom.
Select care observed her today. I don't know how it went but the nurse mentioned something about waiting for insurance approval once Mom was observed. Select care is on another floor in the hospital where they would care for Mom's needs like her trach and begin physical therapy. It is not rehab...yet.
Today was a pretty good day. I wanted to cry when she was attempting to smile, and she made that version of a smile came out. It was beautiful! yay for today's accomplishments!
Thursday, April 23, 2009
She was a bit more awake on Wednesday. Not a whole lot more. She would sit and look at Me, Chuck, or Mommom, sometimes even cutting her eyes to follow us across the room. She wrinkled her nose up a lot as if something smelled bad or her nose itched. Could have been either reason I guess. Mom was continually saying "Sorry, I smell" before any of the strokes happened that left her in the current condition. After a month of sponge baths, surgeries, and only swabbing out your mouth, I'm sure she doesn't feel as clean as she would like. The girls however, have done an amazing job of taking care of Mom, bathing her, brushing her hair, and treating her and us with the utmost kindness day in and day out. They are wonderful and have come to be friends in a way through all of this.
So we will see how Day 31 goes. That is our one month marker. Hard to believe March 23 is when it all began. Now it is April...I look forward to sharing more later.
Tuesday, April 21, 2009
She should also have more awake time. The meds they are giving her (forgive me, the name has slipped out of my head for the moment) should on average kick in on the third day. Tomorrow will be day three, and the effects should make her keep her eyes open for longer periods throughout the day.
Thats it for now. She is pretty much the same with the exception of the two surgeries she had today and the possibility of more awake time tomorrow. I am looking forward to moving forward.
Monday, April 20, 2009
They will begin giving her a medicine to "boost" her awareness. It takes awhile to get into her system so it may be some time before we see results.
Not a ton of new things to report. Mom is still holding her own each day. It was another day of pretty much the same. I can't believe it has been almost a month. It has for sure been the longest month of my life yet, I find myself looking back and wondering where did the month go?...Is it really almost May? I am saddened that the tulips have come and gone, the dogwoods are at the end of their blooming period, and all the bare branches of trees are now filled with bright green growth. Mom didn't get to see any of it happen. Her favorite time of year has come and is slipping out. A fresh start to sping...new life everywhere. I pray that we see renewal and new life with Mom soon as well.
Sunday, April 19, 2009
On Tuesday, Mom will be getting her trach put in as well as a feeding tube (peg line). I think they have finally decided that she needs to move on from the tube and she is not able to without assistance. So, that leaves us with the tracheotomy.
The doctor has also ordered special shoes for Mom to wear in her bed. Her feet have "dropped" from not using them for a month now. The condition can be part of the effects of her strokes. I'm sure there is a long road of recovery with her feet and legs. She most likely will need to learn how to walk again.
I really am excited about this week....if the aneurysm, vasospasms and strokes, as well as the seizures are all behind us, then this week should be one of wakefulness and some form of assessment on where she is in all of this. I know realistically we are looking at months of recovery but, if we have our Mom, and Chuck has his wife, I will take it and run with it. I really want Mom to be one of the "success stories" that we have heard so many of from friends, family, and medical teams.
Keep praying and I'll keep posting to let you know how it is going!
Saturday, April 18, 2009
The day went well. It was for the most part, consistently the same as previous days this week. Not much is changing, which is just fine for now. Her EEGs for the last few days DO show that the seizures have pretty much stopped. Fantastic. She is still not awake enough to remove the tube and handle any "secretions" she may have. They are afraid of her choking...so, as of today, Dr. Anyanwu spoke to Chuck and said most likely (again) Mom will be getting a tracheotomy and feeding tube this week. They were giving her time to wake up a bit and become more coherent a couple of days ago. Thus, pushing back the surgeries. However, they have reached the end of the period of time where it is safe to have the tube in. Now, they must change it out.
It has been neat to get to know the personality of Dr. Anyanwu during the last few weeks. Chuck has really taken to him and trusts his decisions. He even has a sense of humor, which definately jives with Chuck. Today, Dr. Anyanwu popped his head in after working with another patient, one in which he had to put on special clothes and protective gear for. He looked at Chuck and pointed towards Mom saying, "She looking at you! Talk to her!". Mom was apparently just sitting there with her eyes open and Chuck hadn't quite noticed at the time. Another time during an exam yesterday, he was pinching and poking Mom to wake her up shouting (in his Nigerian accent which makes it more fun to listen to)..."Mrs. Rendleman, Mrs. REndleman, can you open your eyes, Mrs. Rendleman, open your eyes!" He is so loud during these exams, you can hear him way down the hall. He then encouraged Chuck to get in her face and yell, "I love you, open your eyes,...honey, open your eyes for me." I just really love how he is caring for our family right now. "tell her you love her" he would say to Chuck...thats just awesome!
I am anxious to see her tomorrow after not being at the hospital today.
Chuck spent the morning there then slipped out to Statesville to bring us his tiller so that we could till and plant new grass over our front yard. He then returned to the hospital, possibly making a birthday party for their neighbors at some point as well. He is a busy man and loves my Mom so so very much. I am so thankful everyday for the gift he is as a husband for her and for the father he is to Joe, Andy, John, and myself.
Continue to lift Mom up in prayer, this is not over yet. She is fighting, and I am both encouraged and hopeful for the future.
Thursday, April 16, 2009
He is "very very excited" about the results of the MRI. It shows there is no more damage made since the last MRI taken. There was a small, small (almost not worth mentioning) stoke that has happened during the last week or so. However, it is nothing to worry about.
The EEG from yesterday showed that Mom is still having seizures. They have decreased with strength and frequency (showing that the meds are working). She will have another EEG today and we will hear results tomorrow. The rash she had from the dilantan has cleared up considerably and a new medicine has been started. Dr. Anyanwu explained that her lack of consciousness we are seeing with Mom could be contributed to the seizures. Once they end we should she a return to open eyes and awareness. If not, there is a medicine that they can give that would give a boost of energy for her.
They decided to hold off the tracheotomy and feeding tube for a little while longer. They believe that Mom is just right around the corner from being able to get off the breathing machine. They want to wait and see how she feels once the seizures stop. That is good that they want to just hang in because she really must be so close to being ready!
I am so happy to hear this news. Again small steps is all I am asking for. We will get there soon enough!
Wednesday, April 15, 2009
So, I happen to think the world of my son. And of course I should. He is beautiful in every way possible...yes, even at 12, 2, and 4 in the morning these days (I just don't spend too much time doting on him during those hours) I'm okay with others enjoying his smiles, giggles, and oohing and aaahhing over him. I've gotten used to it. But, come on crazy Jason's cleaning lady! You just finished clearing the trash off tables and carting your trash bin to the back. Somehow, you think it is okay to take your dirty palms and place them on both of Miles cheeks to squeeze his little face into a version of a fat kid....while he is eating.
You think this is okay?
And what about you crazy pink hospital lady from Vermont where everyone is "crunchy"? I don't know where your hands have been either. Why are you touching my sons face and head! Seriously.
Next time I'm just going to touch your face. Will that be acceptable? Maybe I'll forget to wash my hands and leave you with a mystery of where my hands have been...
Next time please by all means comment on the cuteness of my son. Ooohh and Aaahh. We are pretty amazed at the things he does everyday. But, please, please, if you must touch him. ASK or just reach for his foot. At least its covered in a sock!
Mom's fever went back down as well as her white blood cell count (which is why they expected an infection of some sort). Dr. Anyanwu decided not to move the central line to the opposite side of her neck after all. That was reassuring news to hear.
Unfortunately, the EEG showed that she is having seizures. They are continuing with the plan to switch seizure medicine since the other has caused a rash on her body. She is receiving it now, and it is a locked box above her head...guess it must be some "good" stuff.
She is still having trouble being coherent enough to remove the tube. Pulmonary still remains confident in her ability to breathe. So, Dr. Anyanwu is meeting with the respiratory team to decide on a course of action. Most likely, meaning pretty definitely, Mom will be getting a trach put in as well as a feeding tube to her abdomen. Now, I know this sounds scary, and we were hoping to avoid these things from happening but this does not mean horrible things for Mom. Dr. Anyanwu agreed that it seems nerve racking but spoke of positives for both of these medical necessities. First, we need to remove as much as we can from her head. She is trying to get better, and by taking away all these extra tubes and lines, she will fight possible infection in those areas (because they have been there so long), and she will look a whole lot better. She will be more comfortable with the trach in, and it should not effect her ability to communicate when she starts talking again.
He believes that she is trying to squeeze his hand when he asks for it. That's wonderful news because, it would mean she is understanding the instructions and the valuable "real estate" in her brain has been spared. An MRI was ordered today, and we will hear the results tomorrow. It should confirm where any injured areas are from strokes.
So, tomorrow is a big day. Dr. Anyanwu wants to meet with us to talk about what the immediate future looks like. I like that we have a vision of the next days and week. It is so much better than hour to hour, day by day.
Tuesday, April 14, 2009
I did get an update via Chuck and here is how Mom is doing...
She is still running a temperature. I have not said too much about it lately because it was so low during the past week. However, today it was slightly above 100. Dr. Anyanwu decided to remove the central line that is currently in her neck on her right side. It has been there since her last procedure as a precaution in case they had to go back in. He is going to replace it with a new line on her other side. The reason she may be running a fever could be contributed by a possible infection from the old line.
Another EEG had been ordered to check for any seizure activity. She has been on medicine to prevent any seizures. The last one we are aware of is the one she had during her last procedure (the same one that the current central line is from). The medicine that she was taking needs to be switched due to a rash she has developed over her abdomen.
All TCD numbers continue to be at an appropriate level.
She is still not very awake and aware even though she is barely on any additional help that would cause her to be this drousey. So, pulmanary, who still says her breathing looks great, has not pulled the breathing tube. She remains on CPAP.
Finally, the last bit of news...she squeezed with her left hand! Then the doctor asked her to put up 2 fingers. I think that was a bit too hard for the moment so, Dr. Anyanwu asked her to give a thumbs up. She tried, didn't quite get there but tried I'll take it!
I plan on being at the hospital again tomorrow, and will write again as news develops.
Monday, April 13, 2009
Before discussing details about Mom, Dr. Anyanwu asked Chuck "How do you think she is doing?"
Chuck answered "I think she is doing well"
Dr. Anyanwu chimed in, "I do too".
Awesome. So, hear we go.
Mom is holding steady. When we arrived this morning she was still on CPAP from yesterday. They never turned it off the whole night! Pulmonary still confirmed that they were ready to see her independent of the respiratory machine. The hold up here is still on the fact that she is not awake enough. They are also concerned that with the amount of fluid she is still holding, it could be too heavy for her body to support on her own. The fluid could put too much pressure on her lungs and cause complications. The CPAP offers backup if that happens.
Speaking of complications, Dr. Anyanwu discussed what the immediate road ahead could look like. He said that the two stages we have ventured through (1 = aneurysm, 2= vasospasms/strokes) were extremely dangerous. This next stage we are getting to is also dangerous...maybe not at the same level but, dangerous none the less. This would include risks to the heart and lungs. With all the meds and fluids, these organs can be placed at risk. We need to keep assessments going in these areas to prevent any complication...not that there are. We just don't want to see pneumonia, or clots...etc.
He ordered ultrasounds on each of her legs and arms to see if there could be any clots that may prevent Mom from having function of her extremities. They found two clots but they are in "superficial" veins and are not in need of any invasive treatments. They are not worried about them traveling to her heart.
The only pain med Mom was receiving today was given in small doses. This made her awake periods longer and more frequent. This is good, and we want this to occur. However, I find that when I am back with her and she wakes up, it is hard to watch as she chews, gags, coughs, and panics for just a second before calming down. I'm always reminding her to "stay calm, don't bite." It's difficult. I feel we are heading into a few tough days as she is brought into a better state of conciousness, while getting ready to be free of the respitory machine. I'm sure it is so uncomfortable having a tube down your throat and a device holding your tongue down. I would freak, too!
So, I am anticipating tomorrow. It may be the day that she is free of being intubated. Pulmonary is going to assess first thing in the morning so that if there are any complications, they will still be there for their shift hours and can avoid calling in someone. I'm okay if it happens tomorrow or the next day. I would rather the team working on Mom be certain and confidant that she is ready. Though I am anxious...I can wait.
So, how is she doing?
I think she is doing well.
Be still before the Lord and wait patiently for Him...
Sunday, April 12, 2009
We didn't get to the hospital till around lunchtime today. Miles let us sleep in till 9 (thank you!) and we took our time from there getting ready and out of the house. No church for us today. I missed it. Anyway, I digress. We got there as Chuck and John were heading out to pick up Mommom and bring her back to the hospital. We were holding down the fort till then.
Leigh went on in to sit with Lynne, and I sat out in the waiting room with Miles. We didn't really want to leave Lynne's room unattended because we were anxious to hear what Dr. Green had to say while doing her rounds. Eventually Chuck, John and Mommom came back, and then we left for lunch around 2. Still hadn't seen Dr. Green yet.
When we get back from lunch, we find out that she made her visit with Lynne while we were gone. Stinks we missed her, but things are looking better. Lynne's TCD levels held the same today. That one is still a bit over 100, but all the others are great and we're really happy to be where we are. Currently they're weaning her off of different sedatives and pain meds, as well as all of the fluids they had her on. Honestly I don't have any idea what the names are for all of them. What I do know is that when I was in the room with her this afternoon, she opened her eyes more than I've seen her do in almost a week. And that is great to see. It seemed like she was looking at us more to, not just staring off into space.
They've begun the process of more aggressively dumping fluids out of her body, but her skin is still so swollen. When you touch her hand or arm, you can't help but think how uncomfortable that must me for her. I hope for her sake this goes quickly.
She still has the tube in her throat for the CPAP. As she was awake more, that caused more of a problem earlier in the day as she would gag and bite down on it. I can only imagine what it would be like to constantly have a garden hose down my throat. Still, by the end of the day she was fighting it less, although still awake from time to time.
Tomorrow is a big day for the CPAP. Technically they're only supposed to leave it in for 10 days. Today is day 10. Tomorrow we hope they'll be able to remove it and avoid the tracheotomy. That's not the end of the world, just one more thing. She has to be conscious enough to breathe well on her own and cough to clear her lungs if they're going to remove it.
Dr. Anyanwu is going to be back tomorrow, and we look forward to seeing him and hearing what he has to say. As soon as we post more, we'll put in here.
I'm sure this post is scattered. We feel scattered. Still today was a good day. It was the first time in a while we had the chance to see Lynne with open eyes, and that's a huge blessing. Small steps forward, that's what we hope and pray for. Patiently waiting, hoping. Thank you so much to all of you who continue to support us in this.
Saturday, April 11, 2009
Today her TCD numbers were all below 100 except for that pesky left central cerebral artery which registered in at 109...that is still good. They are continuing to try to get the combo of pain meds just right. When it is not a good balance, Mom just chews and gnaws on the tube that is helping her breathe. She chews so hard that Jess, our nurse, was afraid she was going to hurt herself. So, they had to up the dosage to keep her sedated. Pulmonary came by and said her lungs sounded great, which means that their happy about the amount of...errr lack of fluid she had in her lungs. I guess the lasex she received helped her get rid of some of that extra fluid. Dr. Chase did not dump anymore fluid after last night. I'm sure she is still just waiting and making sure the vasospasm period is finished. In addition, Mom's hemoglobin count was down so she received some blood to help with that.
I'm making this post short tonight. I'm spent and in need of rest,and Miles is not sleeping too well these days. Seems that the hours spent at the hospital are wearing on him. I have hope in the redemption of this but it is wearing on us all....
Friday, April 10, 2009
Before we left most of everything stayed the same. However, there was one change with Mom. While giving her a bath, Chasity noticed Mom began to wheeze just a bit. Staying on top of things, she called respiratory. They checked Mom out and decided to take her off the CPAP for the evening (they usually do anyhow, they just did it sooner tonight) The fluid that has been pumped into Mom is starting to get into her lungs. Dr. Chase was aware of this previously in the day thus the decision to start meds to release fluids tomorrow...as long as TCD levels were still down. Well, since the lungs were being affected more during this evening, Dr. Chase decided to begin dumping fluids before we got the morning TCD numbers. Please pray that Mom's numbers are down again tomorrow, and that they do not have to pump more fluid into her tomorrow morning to make up for what they got rid of tonight.
To recap. If tomorrow we have low TCD numbers then Mom gets to get rid of a lot of the fluid she is retaining. THEN..we can look at being on the presedex to feel good and be awake...Awake will influence being taken off the respirator and avoiding a tracheotomy (surgical procedures on the neck to open a direct airway through an incision in the trachea (the windpipe). Which can stay for a long period of time.
Most of everything is the same as earlier today except we did not anticipate having to start "dumping" the extra fluid in Mom's body just yet. Pray that her TCD numbers are down so that we did not backslide on her treatment with tonight's medicine. Also, please pray for Chuck. He began working again from 7-11ish (before the morning rounds and visiting hours) and stays through the evening visiting hours. It is tiring mentally, physically, and spritually being at Mom's side let alone resuming his work responsibility. Family has left and returned home which leaves Chuck and myself for everyday visits and Mommom and John as often as they can get to Forsyth. Being exhausted can lead to sickness and that just isn't desirable. Continue to Pray also for the other families there. We have met and speak with several families that are going through the same things (aneurysms, strokes, and uncertain futures)We are not alone and the reality of this weighs heavily on my heart everyday.
As always, will post more at tomorrow's visit
TCD's are down to very acceptable levels. It appears the vasospasms have stopped, but they want to give it one more day before making any aggressive changes. If tomorrow's readings are in the same area as today, they'll begin addressing other areas that they've been unable to take care of until the vasospasms were under control.
Then, we can treat the swelling of her body due to fluid intake by dumping the 3+ extra liters they've pumped into her. The first way would be by decreasing the amount they're putting into her and letting the body urinate at a natural rate. Tomorrow if things come back good, they'll give her medicine which will make her urinate abundantly so that large amounts of fluid will move out of her and her swelling will decrease.
Later today, they'll take her off diprovan; from that point respiratory is ready to reevaluate ventialtion and possibly pull the respirator off on Monday. This is all based on her state of consiousness and we'll find out more in the coming days.
If she's unable to maintain concsiousness so to breathe on her own and cough, then they'll be forced to put in a permanenet breathing and feeding tube. This would last anywhere from a week to a month--there's no real timetable, but generally when they put one in it stays for a length of time.
Dr. Chase said the next two days are very important for Lynne, that she would continue to respond will to the treatment they are giving her. Monday is the big day where we'll know what direction we're going next. Thanks for all the prayers, and we'll keep you posted.
The plan has been to keep mom on CPAP for longer periods of time each day, eventually weaning her off the respitory assistance all together. They had made the decision to slowly take her off the diprovan anestesia (slower working) and switch to the fentinal (fast working). However, Mom seems to fight the tube in her mouth/throat when she's on the fentinal so she has been needing morphine to help with the irritation she feels towards it. So, today Chastity talked to the doctor who suggested precedex to see if that works in place of the combination of fentinal and morphine. This drug isn't as much a sedative as a "feel good" sort of drug.
We haven't talked to the doctor yet today, but we're optimistic with this news and anxious for Mom to start being awake more. We'll post more after speaking to the doctor later today.
Thursday, April 9, 2009
So far today Lynne is doing the same as yesterday, if not a little bit better. Her TCD numbers are down a little bit, but she still is over 200 in one vessel. Not good yet, but better than yesterday.
Also, the new medicine they're using to keep her sedated is not quite as strong as the old stuff. Now, when you come in to talk to her she'll open her eyes and look around briefly before falling back asleep. She's still sedated so there isn't much more than that.
That really is about it. We're all pretty tired, but getting used to it I guess. Tomorrow we're getting brake work done in Winston as opposed to Statesville. It's just easier, and right now so much of a day gets spent there.
Thank you for all the continued prayers and support. Even in the midst of this becoming a somewhat normal part of life, it isn't much easier. Things like TV shows, songs and things you read can sneak up in a moment and bring back the hurt and the tears.
A quick window into how geeky I am: I'm reading Tolkein's The Fellowship of the Ring right now. There are several types of individuals who play major roles, and the Elves are perhaps the most revered, magical and mysterious ones in there. Here's what one character had to say about elves after meeting them and being asked if he liked them:
"They seem a bit above my likes and dislikes, so to speak," answered Sam slowly. "It don't seem to matter what I think about them. They are quite different from what I expected-so old and young, and so gay and sad, as it were."
This is the sort of thing that leaps of the page at me and threatens to push the tears through. Most of the people I admire most in life could be summed up by that short description. At the same time old and young, happy and sad. And above the opinion of others. I feel that times like these with Lynne reveal these qualities in us, as well as grow them. I don't think God is causing any of this to accomplish it. But I do think the Holy Spirit uses it.
I don't have anything else beyond that right now. I'm sure Leigh will post more later tonight.
Wednesday, April 8, 2009
The doppler report is in. Her TCD numbers are all below 100 except for 2 of her arteries. The left central cerebral artery we are concerned with is showing a TCD number of 214. Still higher than we would like however, it is coming down. We just want to maintain that pattern. Soon, we hope to be seeing TCD numbers even lower. Most numbers we are seeing are below 100 and one artery slightly over 100.
So, there you go. Good news on TCD Levels. We are fighting this.
The plan for today is to stay with the previous plan for treatment. It seems to be working. They switched Mom's sedation meds to one that is fast working. So, if they want her to wake up, it is almost instantly instead of over multiple minutes. This should help her wake up and focus sooner during an examination.
Tiffany, a Starbucks friend of Mom and Chuck's, stopped by today to see Mom. I know Mom would be so excited to see her and have some of the salted hot chocolate she brought....Sorry Mom, I split it with Mommom...I owe you one when you get out.
The CT scan went well. They did not see anything new which is an answer to prayer. We are still waiting for today's TCD numbers. Regina the nurse, had no way of knowing when they would roll into her room with the doppler. I guess I'll just wait and see after the neuro quiet time lets up at 4:00 for visitation hours. When we know I will post.
She is resting calmly in her room, and visits are short and sweet these days. I find myself being so impatiant. I want so badly for this vasospasm time to pass and to get onto recovery. I'm anxious for Mom to walk and to talk. But for now. I'm still thankful for today.
Tuesday, April 7, 2009
Forgive me for the delay in this post. I have been at the hospital all day but without the computer. Brad needs it for work and decided to stay home today to get some things done for club tonight. So, here is how today went...
I got to see three doctors today! The first doctor was a doctor that was in charge of making sure Mom is breathing just right. He said from his end (meaning what he is supposed to check out..) everything looked great. They decided to start the process of quitting the intubation on Mom. Mom would now be breathing on her own for several hours a day, eventually getting to the point where she is independent without the machine at all. Right now the machine is helping her if she fails to take a deep enough or frequent enough breath. She needs to be off sedation to be without the tube completely. This way she can help cough and expell the device and so any "leftovers" in her lungs do not choke her.
Doctor number 2 was Dr. Brown. He is the doctor that did the coiling procedure on Mom after her aneurism (or aneurysm) two weeks ago. His visit was quick, briefing us on the TCD numbers from today. They were down slightly with one artery still hovering at a higher than liked level. So, we would continue to watch.
Doctor number 3 was Dr. Greene. Today was my first incounter with her. She shared great information, listened to questions, offered explinations, and spoke about other examples of patients she had seen. Overall a very informative exam time. Here is the info she shared...
Mom's TCD numbers are holding steady, actually slightly down from prievious tests (as explained by Dr. Brown) However, the left middle cerebral artery is the artery that is still high. This is so close to the "real estate" in her brain we are wanting to preserve. It very scary to me to hear this sort of news. Dr. Greene explained that she is very focused on the patient and her observations of behavior changes from day to day (as well as the nurse's). She explained that sometimes numbers don't always mean the worst, but a change is a person's responses (extra sleepiness, staring, lack of movement...etc), is more likely to signal a problem. Since Mom's numbers were down, she would just observe. She also explained that we have no way of knowing where Mom's TCD numbers would have been on that artery before the aneurism. It may have always been weak due to desease or defect. (which by the way is a heretitory issue and family should also get checked out).
She checked Mom's pupils, movement, and grips on her hands. Mom had only movement on her right side when it was a reflex, a reaction to the place Dr. Greene pinched or poked. She had slight movement on her own with her left foot.
Dr. Greene is continuing to keep Mom sedated but for shorter and shorter amouts of times. Hopefully, we will get to a place where she sleeps when she wants to and not when encouraged with medicine. HHH therepy will continue. HHH therapy stands for hypervolemic-hypertensive-hemodilution therapy; basically this means keep the fluids (and therefore blood pressure or, more correctly, the mean arterial pressure) of a vasospasm patient up, and the concentration (or viscosity) of the patient's blood down. Together, this pattern of blood properties is associated with improved brain blood flow. She also started another med to make sure Mom retains more of the fluid that she is getting through IV. Right now she is 2 L ahead of where she needs to be and that is great for fighting the vasospasms.
There is a CT scan ordered for tomorrow morning. Remember a brain CAT scan in a patient suspected of having vasospasm may show new strokes in the distribution of the artery or arteries. We don't want any of those. She told us about some of the damage Mom already has which is damage to the frontal part of the brain. That part is personality and motivation. In the future (love those words) we could see her struggle in these two areas when in social situations or when trying to get her to move body parts. But, she encouraged us with a story of a lady that was just like Mom four years ago who is now walking and talking and living her life again!
She of course reitterated that things can change day to day. We have seen that with Mom. She was sitting up in bed beginning to talk again and feeding herself just a week ago before the vasospasm and strokes kicked in. So, we need to be aware... That said, she did say "I feel she'll pull through this."
So now, we will just keep on with day to day. I'll ride this bit of a good day and anticipate the next. Please know, this fight is continuing every minute. Thank you for all your prayers and petitions to Christ. Please continue to pray without ceasing!
Monday, April 6, 2009
Her TDC levels are back up over 2.00, which is not good. They've raised her blood pressure to help fight through, and are continuing to keep her intibated and sedated for now.
Apparently Dr. Anyanwu is out of town all week and Dr. Green has taken over Lynne's care. Chuck had the chance to meet with her earlier today. Lynne responded to being pinched again today, which is good, but didn't move her limbs when they briefly brought her out of sedation.
Chuck asked Dr. Green why Lynne's vasospasms haven't ended yet, especially when we were told that after 14 days we should be out of the woods. Dr. Green said that sometimes cases are more severe and can last as long as 21 days, and that's Lynne's spasms are just worse than they normally are.
Otherwise, everything is still the same. I'm sure that Leigh will post in more detail this evening after she gets home. Her and Chuck are there at the hospital with a various assortment of family (I'm not exactly sure who's coming or going today). This up and down (even while this one is less dramatic) is really tiring. Good day, bad day, good day, bad day. Please pray that Lynne's TCD numbers would go back down and stay there, and for the family to be encouraged in the midst of the setback.
Sunday, April 5, 2009
For those of you that don't know, my Mom and I are super close. I talk to her every day while Miles goes down for his first nap of the day. We discuss anything and everything. Sometimes I feel a bit guilty when I realize we have been on the phone 10 minutes, and I have yet to finish spitting out my woes of the day before asking how her day has been. Last time I called her was two Mondays ago when Chuck answered. I was later than usual calling. Making the call around 11 am instead of 10...I missed hearing her voice that day. So, I decided to call today.
Of course I knew I would get her voice mail...but I wanted to hear her voice so badly. I think this is the longest I have been without a phone conversation since hiking Tahoe 5 years ago. I loved hearing her cheerful message. It's all I needed. I wanted to leave a message for her but decided instead that I would whisper in her ear.
I would tell her how much I love her and can't wait to see her home soon. I would tell her of the beautiful day outside and how I am excited to sit outside in the grass with her as we did last summer when I was big and round and lonely with Brad away at camp. How, Miles is taking "assisted" steps in the waiting room, and Uncle John is trying to feed him mints from Olive Garden. I don't like saying I can't wait for this to happen or that to occur (though I do find myself there often)... but instead, I want to live in the moment of today. I'm happy.
Happy that Mom has TCD numbers slightly lower than yesterday, that her fever is down, that she looks so incredibly peaceful in bed today. Her color is good, and she responds to stimulus from Dr. Hecht. In conversation today he discussed a MRI later in the week. An MRI to use for "where to go from here". We're going somewhere. I'm happy.
We are still in the middle of a very hard place. I am aware we are not exactly where we would like to be just yet. But I am hopeful it will be soon.
Because it is the weekend, doctors are here but not "around" as they are during the week. Dr. Chase is on call, as well as Dr. Hecht. If we don't see them, then that is good. We saw them last Sunday before Mom went in for her second procedure. I don't want to see them if it means something needs to be done or fixed. For now she rests, and her body is trying to fix itself. I want that to happen.
Just before our way out to lunch, Chuck and the Greens slipped into Mom's room to rub her arm and say hello. For those of you that know Dave, its like pulling teeth to get him to talk or befriend someone he does not know....yeah right. With all the talking in the room, apparently Mom opened her eyes. While we were out to lunch, the doppler people came in and got new readings for the day. Dr. Chase came and examined her. She was pleased and told the nurse to stay with what was being done. It was working, and she did not want to change a thing. The best news is that Mom's TCD numbers are all down a bit more than yesterday. (oh yeah, we also found out today that the TCD numbers we saw for yesterday were not accurate and those numbers were down as well) As of now, the trend for the last three days has been positive with these numbers and their decrease. Praise Jesus!
Tomorrow, Dr. Anyanwu will be back and we will see what he has to say. Please continue with your prayers. I want to continue on this plateau and then go up from there. We just can't bear to hear anything other than that.
The Lord is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy and I will give thanks to him in song.
Thank you for today.
Saturday, April 4, 2009
Leigh and I are heading home at 5:30 to take the evening off, but we'll post whatever new news there is tonight before bed.
Leigh and Chuck did get to have a conversation with Dr. Hecht this morning. He came in and turned off the medication that keeps her sedated so he could test her responses to physical stimulus. After pinching and poking her hands, feet, arms and legs she flinched and moved both left and right sides of the body, which is very encouraging. While she was unsedated, she opened her eyes and Chuck, Leigh and I got to speak to her a bit before she went back to sleep.
The levels are looking good right now. I know levels is sort of a vague term, but we're an uneducated bunch. They do feel like they're making progress with her vasospasms as well as the brain swelling. Apparently, the medication used when treating the brainswelling encourages vasospasms, and when you treat vasospasms medically it encourages brainswelling. Vasospasms cause strokes, and brainswelling causes seizures. Doesn't it seem like it would probably work that way? They've had a hard time balancing the medications for these two problems and finding the sweet spot in between. Today they feel like they've gotten things where they want to be.
Also, her temperature is down to 98.6 today. Chuck says that's the first time he's seen it there since we first got here.
Later today they'll do another doppler measuring the TCD levels and that will tell us a lot about the vasospasms. Until then, we're just hanging in hopeful for another good day.
Friday, April 3, 2009
Dave and Peggy Green being in town to encourage us. John showing up in time for lunch and being gullible enough to let me stick a dirty diaper in the back of his car. Mommom walking all the way to the car in the parking garage from the waiting room (don't think we didn't notice). Uncle Tommy driving in spur of the moment...thank you so much for that. Jeanie driving in as well, whether Chuck liked it or not. Miles, the happiest baby alive (who is taking steps when his hands are held) killed some oatmeal, apples, sweet potatoes, peas and washed it all down with a sip of Leigh's finest vintage.
And most importantly, Lynne held her own today. Nothing changed. She's still intibated. Still sedated. Still waiting.
There were no emergency procedures, no rushed phone calls, no tears on the drive home or in crappy fishtank waiting rooms. We have a lot to be thankful for, and I'm going to take it.
This evening they gave her a bath, to help cool her down (she's still running that fever) but other than that nothing medically has changed from the previous post.
On the way home tonight, Leigh and I talked some about how hard this is, and how tired we are. I don't know when I've been so tired, and I've done a lot of tiring things for days on end. Nothing comes close to this. I think one of the reasons we feel so tired is because of the guilt that you can feel. Guilt that we get to go home and sleep in our beds while Chuck and Lynne have to be apart. Guilt that we can rest while Lynne has to stay in the hospital. Guilt for being frustrated with family. Guilt for having to think about things like eating, paying bills, making money to pay bills, taking care of kids, cutting the grass, going to class, the list goes on. Guilt sucks.
And I think God may agree.
I'm no theologian. I haven't been to school for years (at least not with any real success) studying scripture. I've read a few books, I try to read the Bible and do what God asks in it. I love Christ and want to love Him more. And here's what I think is true about Him and guilt--Christ isn't interested in making us feel guilty.
Seven days out of ten my favorite verse in the Bible is John 10:10. "The thief comes to kill, steal, and destroy; I have come that you would have life and have it to the full." Now stay with me here . . .
Guilt doesn't seem to have much in common with life and fullness. It seems much closer to theft and destruction. It drives a wedge between you and the person making you feel guilty. It's a tool of power and oppression not a gift bringing life. I'm not saying that God has no ideas of right and wrong, and that He doesn't care what we do. What I'm saying is that He is more interested in conviction, something that results in a change in behavior for the better, not just making us feel bad to manipulate us. That's not my God. Conviction is life giving. Guilt is life taking.
What does any of this have to do with Lynne?
I think that God doesn't want us to feel guilty any more than Lynne would. He is offering full life, and guilt isn't going to give that to anyone. Today was a good, life giving day for us and Lynne. The doctors were encouraged. We were encouraged. I'm thankful for today.
Tomorrow we'll drive in early to meet with the doctor again in the morning. We'll post again afterwards. Thank you for all the prayers and support--it's good to know you're in it with us.
"The Lord is my portion," says my soul, "therefore I will hope in him."
New mercies for today. That is what I have to believe.
After a sleepless night, and once again preparing for a trip to the hospital (husband and baby in tow) Chuck gave me a call. Jess (LOVE HER!) is Mom's nurse again for today, called Chuck as he was on his way to the hospital. She informed that Mom's breathing was a bit labored and after a quick word with Dr. A, they had decided to intibate her. She didn't want us to be shocked when we walked in this morning. My heart sank.
Brad and I got on the road to Forsyth hospital and shortly after being on the road, Jess called me. She was seeking consent for a new arterial line to be placed in Mom's arm. An arterial line, or art-line, is a thin catheter inserted into an artery. It is most commonly used in intensive care medicine to monitor the blood pressure real-time (rather than by intermittent measurement) Yes. Of course.
After waiting in the waiting room (appropriate name...) Jess called Chuck and said the A line was in and we could go back to see Mom. This was perhaps the hardest of all visits, to see her intibated, lines from all parts of her body, connected to machines...My heart ached. Dr. Anyanwu slipped in her room and asked us to step outside to talk about Mom.
Here is what he said...
He pulled up her MRI from yesterday. This is the one that showed the strokes that she had over the last few days. He used the pictures on the screen and pointed to the bright white areas of her brain. These were the strokes she had. He pointed to the larger of the strokes and explained that this occured in the area that affects speech. It was a large one (my words...after looking at the MRI pictures and comparing them to the other visable strokes on the MRI). This area is next to the area that allows her to comprehend speech, to understand language. This area is viatal for any sort of recovery to be possible. We DO NOT want another stroke especially in this area. Dr. A is continuing to give meds for treatment of the vasospasms (which lead to strokes) as well as increasing her blood pressure, and meds to prevent anymore seizures.
He pointed to a group of numbers. These Transcranial Doppler (TCD) numbers measure the intensity of the vasospasms. The higher the number, the thicker the walls of the blood vessel meaning the more deflated the vessel is. The lower the number, the more blood moving through, inflating the vessel making the walls thinner. The blood vessels on one side showed 2.8 something and the other slightly lower 2. 6 something. Dr. Anyanwu told us that these numbers were way too high. He wanted to see numbers lower than 1. So, he went on and said "I'm optimistic". However, we are in the throes of it right now. Dr. A said that she is on the fence and could go either way. Her vasospasm numbers were lower this morning. One was .96, and the other was 1.7. I didn't ask what contributed to this. I guess it could be the meds from Dr. Hecht's procedure yesterday or just the tapering off at the end of the natural plateau of vasospasms. He repeated that we just need to continue this for 72 hours. To quote him, "If we can make it through the next 3 days without a stroke, I'll claim victory." Then we can begin recovery. Recovery....I love talking about recovery!
He also showed pictures of the CT scan and there seemed to be no activity. Great. Chuck spoke up and told Dr. Anyanwu,"I believe that God has enabled your hands to care for her at this time." Dr. A said, "I believe that too."
Answer me when I call, O God of my righteousness! You have given me relief when I was in distress. Be gracious to me and hear my prayer!
We continue to sit and wait. Currently, Mom is getting and EEG to check the brain for any seizures. Will blog later. Continue to pray!
Thursday, April 2, 2009
Dr. Hecht said that while he has seen patients recover from this place to a funtional, independant life, he'd be lying if he didn't tell us he was very concerned and he encouraged us to pray. Lynne has taken a turn for the worse since Monday with the vaso spasms. They are causing strokes in what Dr. Hecht called the "high rent" real estate of the brain--the areas that control speaking and motor skills. He said that if we cannot keep strokes from happening there then Lynne could become a vegetable or pass away.
Right now she's back in her room resting and sedated. He left the catheder in her leg so they can do the procedure quickly in the next few days if they need to. We asked about the 4,7,10,12 day timeline of the spasms, and how we should, in theory, be seeing the end of them soon. He sort of sighed and said that there were no hard and fast rules for that timeline--that those mile markers were only general trends. Lynne's seem to be running much more severe than average. There's no way to predict that, it's just how it is. He said that if we can make it through the next three days without any more strokes then that would be good.
I don't really know what to say. We all feel so helpless, and like every time we have something to be encouraged about we end up getting kicked in the teeth. We're all really scared right now. Dave and Peggy Green just got here to stay with Chuck. I don't know how long they'll be here, but Leigh and I are glad to see them. Please pray for Lynne, Chuck, Leigh, Joe, Andy, John and Mommom and everyone else in the family. We're all pretty scared right now.
Angioplasty is the technique of mechanically widening a narrowed or obstructed blood vessel. Apparently this procedure is very risky. Dr. Hecht explained that the skin of the brain is so delicate that it can tear. This would be difficult to correct and in that case, death is most likely to happen from bleeding in the brain.
Dr. Hecht came out and spoke with Chuck to expain what he discovered once getting inside Mom's head. The good news is that the blood vessels that are affected currently are not the large main ones but the smaller vessels. This means that angioplasty is not an options...So, that risk of tearing was gone. However, now these smaller blood vessels need to be treated, and the way to do that is through chemicals as was done on Sunday afternoon.
So, here we sit waiting another 45 minutes for the results from Dr. Hecht. We know that this is necessary to save Mom's ability to use her motor skills. We'll let you know more after we talk to him.
Then, he pulled down the pictures of Winston and Lucy (again, dogs not grandkids) and she was able to identify them and say "Winston" and "Lucy!" This is so huge!
They're taking her in to do the MRI right now, and then Dr. Anyanwu is going to examine her again afterward. We'll update tonight
Chuck gave consent for them to place an arterial line back in. These are used to give the doctors perfectly accurate real time measurements of her blood pressure. High blood pressure is one of the main things they use to combat the vasospasms. Think of a garden hose being stepped on--one of the ways to fight the force of the foot pushing down on the hose is to increase the pressure of the water inside the hose. Same thing with the vessels in the brain. Lynne originally had a arterial line in her right arm, but it kept coming lose when she would move around. Putting it back in will help the docs find that sweet spot between too high and not high enough.
They've also ordered an MRI. First one she's had since coming in. I guess we'll find out more about what they're looking for with it when they get it back.
Chuck ran into Dr. Anyanwu in the hallway and got a chance to talk to him about Lynne. He said that after his examination, he thinks that Lynne is definitely no worse than yesterday, and if anything is a little bit better. Dr. A asked Chuck if he thinks Lynne recognizes him when visiting, and Chuck said, "Absolutely." It just seems like she can't get it out.
More encouraging news--Nurse Jess is back! She reminds me of Mary Stuart, and we love having her there. While examining Lynne earlier, they were trying to get her to move her arms and legs by pinching her knee and triceps. Apparently, Lynne can say "Ouch" really well! This is good for us to hear.
Later today Dr. Anyanwu is going to examine her again, and said we'll go from there. All in all, sounds like a good morning. We'll update again this evening after Leigh visits.
Wednesday, April 1, 2009
We heard the results of the EEG. Apparently she is not having seizures; that's good news. Also, her fever is coming down into the high 90's. All the tests they've run point to the fever being driven by her brain, not by any sort of infection. Any inability she has to control her body seems to be a result of the aneurism/stroke.
Just to remind everyone about the doctors and nurses role in this: the only thing they can do is monitor where she is in the midst of this. They told us in the beginning that there was nothing they could do to either predict or prevent the vaso spasms. All they can do is react to them when they happen and treat them as necessary.
Tonight was the first time I've been able to see Lynne since Sunday. For those of you who don't know, Sunday was a good day, the great day. It was the day where Lynne said she was feeling "Delightful" and seemed most like herself. Between then and now things have changed dramaticly. Now, the most communication you can get from her is "uhuh" or "uh-uh" for yes and no. This is so defeating for everyone, most of all Lynne. when you look at her, it's so apparent that there's more she wants to get out, and that the connection just isn't right and the words can't make it to her lips.
She does respond. Earlier today she really enjoyed pictures of those dang dogs. I shouldn't say that, I like the dogs. But they are the biggest pictures in the room now (sorry to all the kids and grandkids). And, as Leigh told her mom about a conversation with our friend Miriam about aneurism victims and the brain's ability to heal, she was very focused on what she was saying. She went on to tell her about Romans 8, and how the Spirit prays for us when we don't have the words, and how the Spirit was praying for Lynne now. Lynne's eyes were wide open and watching Leigh as she told her that. But there are no words. Nothing can make it out yet.
Now, I recognize that I am a perpetual optimist. I also know that I know nothing about medicine. Setting all that aside, when Lynne began this journey more than a week ago, she had very little control of her left side, and spoke very little. We saw dramatic progress before the second stroke took her to where she is now. For the moment, she isn't talking, but her left hand works, better than it did a week ago. I have to believe that healing is taking place there beneath the surface, and that this isn't over for Lynne.
Tomorrow is a new day. New mercies. New restoration. This is where we have to live. Fighting our way past Day 12. Saturday. If you pray, please pray with us for this day, and that God would restore Lynne. Leigh keeps thinking of Romans 8:26. For me it's the blind man in Bethsaida. Jesus, after spitting on his eyes, asked him what he could see. He said, "people, but they look like trees." Things were blurry. Not all the way fixed. Then, he laid hands on him, and after that he could see clearly. Perfectly. 10 minutes earlier he was completely blind. My God is one that restores things that are broken, heals people who are sick, and comforts those who are hurting. And he doesn't do things halfway. He and I don't always see eye to eye on what things should look like. But, I have to trust that his ways are better than mine. And I know that he is with Lynne right now.
I know that this is the sort of stuff that generally pisses people off about Christians. Honestly, that makes sense to me, because it makes me angry when I hear it from others who quote Romans 8:28 without giving it any real thought. That doesn't mean it isn't true though. And it's where I have to live, because the alternative has nothing for me. I'm going to continue to hold hope that God is at work in Lynne's life, and in ours who wait with her here and around the country.
He has ordered an EEG to see if there's any evidence of seizures. There are no outward signs of them, but they think that this could be causing her exhaustion and inability to focus. Also, this allows them to measure more directly how her brain responds to certain movements, thought patterns, etc. and will allow them to more accurately diagnose and treat her in the future.
He has ordered another ultrasound to make sure that everything is healing OK. As I understand it, this is the same thing they do every morning already.
Evidence points to the fact that Lynne had a stroke sometime in the past few days, which would explain the change in demeanor. We saw a huge personality shift, as well as a decrease in communication between Sunday and Monday, and the speculation is that it may have happened somewhere in there. Also Lynne is now less able to control the right side of her body, also pointing to the possibility of a Stroke. The doctor was very clear in saying that if she had a stroke, it was a small one and not something we should be extremely concerned about. Kind of weird, I know, but we have to trust him.
If they feel it's necessary, they make a small opening in her head to insert a probe allowing them to monitor the pressure inside her brain directly. I don't know when this decision will be made, or what the determining factors will be. I'm sure we'll find out more later today or tomorrow.
Dr. Anyawoo keeps reminding us of the initial conversation he had with us. In it, he told us that there were many high risk days between Day 1 and Day 12. Today is Day 10. Saturday is the big mile marker we're shooting for. Ups and downs of varying degrees were to be expected between Day 1 and 12, and these days cannot be reliably used to gauge progress or regression. The doctor was very clear that this is something to be expected; after Saturday we'll begin looking at diagnosing where Lynne is and treating her more aggressively.
Right now, Lynne is very sleepy, like it was back in the beginning. My understanding though, is that sleep is important for the healing process. We continue to hold out hope that better days are ahead. We'll update again later today as we know more.
Chuck, Mommom, and I left for lunch about 12 and returned at one. We retuned with a cup of coffee (plenty of half and half in hand) and some girl scout cookies for Mom. Hoping to cheer her up, we also brought in her glasses so she could see the pictures and notes that now decorate her room. She held the coffee and sucked it down fast and resonded with a uhuh when we asked if she would like a second cup. Mom's spirits seem to be down still since Sunday. Each day is like a roller coaster of emotion and we find ourselves leaving each visit commenting on the condition of her spirit during a visit. Other than the satisfaction that she seemed to have from the snack, there was not much responding to comments made be Chuck or myself. She just stared at the clock like she was waiting for a certain time. Was it for visiting hours to be finished, dinner to come, or her just keeping track of the time as it passes? Her heart seems so focused on the clock. I asked what she was waiting for and I had no response. I asked if she knew what time it was and she responded 2:20, but nothing else. We asked Dr. Chase earlier if the staff watched out for saddness and what do they do about it with patients. She assured us that they were all trained to keep up with the ups and downs of patients and that Mom was just sleepy. Apparently the location of the aneurism affects personality and that it was normal for us to see a difference in her interaction.
Chuck had to leave for work and we worked out a schedule that I would stay for the 4 to 530 visit with Mom. When I walked in, Rachel had bathed Mom and shampooed her hair. She pointed at the pictures sitting on the table across for Mom and stated that she tried to comb it like the pictures. What a blessing to have someone care for Mom like that after the previous day's nurse. She was pretty spent by this point and I decided to sit silently next to her so that if she woke up, she would see me and feel conforted. She slept most of the visiting hour and only awoke when Rachel came to give her her medicine. We worked together to wake her up long enough to drink her apple juice that contained her medicine. Then she looked at me for a bit. I took this opportunity to try to talk with her asking questions that she could not answer with an uhuh or an uthuh. She moved her lips like she was thinking of the words to say but would not let any words out. I asked if she felt angry. Her eyes just seem so cold. It's getting tough to see this since if any of you know my Mom, she is the person who is always positive to a sickening level at times. I let her doze off again and touched her arm as I left to say the visiting time was over and Chuck would be returning for the next visiting time.
Chuck came back to Mom's room about 8:00 and brought her daily treat. Today was banana pudding. He turned on the t.v. to watch the Mentalist, a show that they usually enjoy together on Tuesday nights. She continued to watch the clock and tv. Chuch watched her look back and forth. He asked the time, she didn't answer. She refused to feed herself, so Chuck decided to feed her so that she would get her nutrition. We don't want the feeding tube back, so if she won't feed herself, then we will do it for her. Sorry doctors...We just want to care for her like she would with us. At 10, Chuck got up and let her know that he was going to be kicked out for the night because the visiting time was over. He turned off the light and she closed her eyes and fell back to sleep.