On Monday, October 17th Rinne had surgery to remove a tumor from the right side of her brain. The tumor was removed without incident. The doctor was ready to close, when the brain suddenly started bleeding. As the doctor looked for the source of the bleed, he then found vessles that were no longer receiving blood. At first he thought the bleed was the result of an anuerysm, but none was found. The source of the blood is still not clear, but the lack of blood to the brain is a stroke. She experienced a major stroke. In addition to the stroke, her brain is swollen, which is a big concern.
Rinne has a catheter to drain excess fluid from her brain, is intubated, and sedated. She is in ICU, and the nurse has asked that visitors are limited to immediate family. Prayers are needed!
Tuesday, October 18th:
The doctor was very optimistic today. He said the brain swelling has gone down markedly. He also said they lowered her sedation, and was able to get a response from her left arm and leg. Very good news.
Wednesday, October 19th:
Update 1: The doctor said that Rinne was no better or worse than yesterday. He said he doesn't like to keep patients on the sedation medicine he had her on for a long time, so he changed medication. When they lowered her dose, and tried to get her to respond, she didn't. The new medicine is known to cause a longer state of sleepiness when the dose is lowered, so it may be that, but he is unsure if that is the cause right now. He said they are still concerned with swelling, and that she is not out of the woods yet. He said it can get worse before it gets better. Keep the prayers coming!
Update 2: They did a CT scan today. The doctor said he didn't see anything on the scan that he didn't expect to see. There is still bleeding, and the pressure in her brain is up, but that is expected for what she is going through. They lowered her sedation again, and we spent some time trying to get her to respond with her left arm and leg. This time sucessfully! The activity however, increased the pressure and they had to raise her sedation level again.
Thursday, October 20th:
Update 1: The doctor said Rinne is the same today as she was yesterday. Still swollen, and pressure doing well. She is running a little fever today however. He is trying to determine when would be the best time to remove her from the ventilator. He said she might be ready in a day or two. On the other hand, he prefers doing things like that on the weekdays, because there are generally more doctors and medical personnel available on weekdays, in the event it doesn't go as well as we hope. He said it's looking good, she is looking good, all things considered.
Update 2: The nurse said that she gave Rinne a "sedation vacation" for a about 15 minutes, and she did well. She also said that because today is the 3rd day post op, that this will probably be her worst day. I think that means tomorrow and from then on, things should start getting better every day.
Update 3: Rinne's fever is up to 102. :(
Friday, October 21st:
Update 1: They can control Rinne's fever some with Tylenol. However, it was up when I went in to visit her this morning. The fever indicates infection, so they are giving her antibiotics. Her brain pressure is also up a bit, so we have to be quiet and let her rest when we visit her. They are taking Rinne for another CT scan this morning. The doctor is in surgery, so we haven't talked to him yet.
Update 2: CT scan showed the swelling was worse than it was on Monday. They will not be removing the breathing tube this weekend. And her fever is back up. But he said it usually gets worse before it gets better and usually happens between 48-72 hours or two to three days but then said her hard time just came a bit later. So please pray for her that this is the worst it gets so it can only get better from here on out!
Update 3: Rinne had a temperature of 102.9 this evening. They put ice packs on her chest and cold rags on her arms to help bring it down. Josh said before he left at 6:20 that she felt cooler while holding her hand. She responded well to medicine for the intercranial pressure (ICP) today, and now it is lower for the most part. (Note: Acceptable ICP level is 0-15. Rinne's level was 29 & 30 this morning. This evening it was 9-14! yay! Talking to her sometimes raises this level, which is why we had to let her rest.)
Saturday, October 22nd:
Update 1: Rinne is the same today as yesterday. No change. ICP was up a bit again today, but she responded well to meds. She is still heavily sedated, so the doc was not able to get her to move her left side today. He said because she was able to in the beginning, that's a good sign, but we have to wait to see what damage was done when she comes around. CT scan again today, but he doesn't expect to see any changes yet. They were able to determine which bacteria has her fever up, and now have her on the right antibiotic for that.
Update 2: The doctor had taken Rinne off the one sedation medication that he doesn't like to leave patients on for a long time. However, whenever he does this, her ICP raises. So he put her back on it today. (Note: That sedative is Propofol)
Update 3: They just took blood for testing, blood pressure is 103/67 ICP is 20. They also just gave her lowpressor to lower her pulse rate. Changed from 126 to 99. Her temp is 102+.
Sunday, October 23rd:
Update 1: The doctor said Rinne is doing better today. He feels comfortable about her for the first time this week. Her ICP level is good today. They will do another CT scan tomorrow. He still wants us not to talk to her, as her brain needs to rest to heal.
Update 2: Rinne's temp is now 99.3! :) The nurse told Rinne to open her eyes, and she did! She closed them again right away, and didn't follow any other commands, but opening her eyes for the first time is soooooo exciting!
Update 3: They are lowering the sedative very slowly and she has opened her eyes multiple times now. :) :) :)
Monday, October 24th:
Update 1: Rinne is moving her right arm a lot this morning, apparently trying to get the restraint off. She opened her eyes a little while I was in there, but not enough to see into them. Her pressure is 14-17, which is good considering all the moving around she is doing. When I kissed her forehead, she felt a little warm. The nurse said her fever spiked this morning, so they gave her more tylenol. Come on antibiotics... do your job!!
Update 2: Josh & Mom just visited with her, and got more information. They don't want Rinne to be uncomfortable and fight the restraint all day, so they gave her morphine to help make her comfortable, rather than upping her sedation. They also started weaning her off the ventilator, by adjusted a setting to allow to start breathing on her own a little bit.
Update 3: Rinne is still running a 101 temp. The good news is, she opened her eyes wider this afternoon, and responded to Kim's voice when she was talking to her. Her ICP is now at 10!
Tuesday, October 25th:
Update 1: When I visited this morning, they had given her something to keep her comfortable, so she was sleeping. Mom & I just went back to visit, but they asked us to wait for an hour or so. They are lowering her ventilator oxygen level again.. 2 more step downs in the next hour. They want her to stay calm during this process. If she does well, and her blood work comes back ok, they will remove the vent today! :)
Update 2: She is now off of the vent AND off the sedation, and breathing well on her own : ) She is also awake, although still sleepy. It was hard to tell if she recognized us or could see us, so Mom told Rinne to squeeze her hand if she could see her - she did!
Update 3: They had to re-intubate Rinne. :( We don't know any details yet.
Update 4: They re-intubated Rinne because was not able to get enough oxygen on her own, nor was she able to cough and clear her airway on her own when told. They feel she would benefit with a tracheotomy until she can accomplish what she needs to do. They will perform the tracheostomy tomorrow. Right now she is sedated again. Her vitals and ICP are all looking good. ICP is now at 10. Brain swelling is coming down. After she is trached, they will be able to take her off the sedation again.
Wednesday, October 26th:
Update 1: They are planning the tracheostomy for this afternoon. They will also give her a gastrostomy feeding tube, I believe at the same time. The doc also feels the pressure monitor and drain tube have almost been in too long. He is determining when to remove them. Her ICP was 8 when I went in there, and 5 by the time I left, which means the pressure is going down. She was a little bit awake while I visited this morning.
Update 2: The tracheostomy went well. There is a little swelling at the surgery site, but that's normal after this procedure. They still have her sedated, because of the swelling, and because her ICP was up. They were able to bring her fever down, but called in an infectious disease doctor to try to get a handle on her fever, because it was up to 102+ again this morning. They scheduled her feeding tube for Friday at 3pm to make sure they have a latex free tube for her. Whenever we ask how long the trache or feeding tube will be needed, they say there is no way of telling.... but also mention sometimes it could be permanent, we just don't know right now. I know Rinne, she will exceed everybody's expectations! Keep. those prayers coming to give her strength!
Thursday, October 27th:
Update 1: Rinne was pretty sleepy today, and not responding much, even though they are lowering her sedation. Still has a fever. They did another CT scan this morning, but we haven't seen the doctor yet today to hear the results. He is doing surgery today (on other patients) so it may be a while before we see him.
Update 2: Rinne opened her eyes several times today, and squeezed hands of most who asked her to. She has tears. On one hand, I hope that means she is cognitive, on the other hand I hope it's involuntary and she is not sad.
The medical insurance called and said the docs have set up transferring her to a ventilated dependant rehab next week. Haven't heard from the doc yet, so we don't have any details, except it will be on Reche Canyon in colton. It sounds like they will try to wean her off the ventilator there. We are going tomorrow to check out the place and pre-register her.
Friday, October 28th:
Update 1: Rinne's ICP was up this morning, so the nurse asked us to let her rest this morning. The doctor plans to replace the drain and the monitor in her head today. He was hoping to remove it, but because her pressure goes up when they close the drain, she can't go without it yet.
Update 2: Rinne got her new brain catheter and monitor today. The doctor said if they continue to need to drain fluid from her brain, they will put in a permanent shunt, which will drain the fluid internally to her stomach or abdomen (I think he said stomach, but the research I'm doing says abdomen... maybe he was talking in layman terms to us). He says there is a moderate chance of that happening.
After a nurse and the social worker assigned to us made it sound like Rinne may not ever recover enough to make decisions on her own, the doctor reassured us that is not true. He expects her to be able to walk again (with some deficit to her left leg and arm). He said area of the brain that is used for cognitive thinking was affected a little tiny bit. He also said that the communication area of the brain was not affected by the stroke... she will be able to talk.
The 3pm feeding tube procedure has not happened yet, but the nurse said that can happen anytime, even during the middle of the night.
Both yesterday and today, I played a song for Rinne, and sang it to her. Today while I sang to her, she opened her eyes, and squeezed my hand. This is my song for my amazing sister, who has *always* been there for me:
Saturday, October 29th:
Update 1: Rinne now has her gastrostomy feeding tube in place, and they lowered her sedation a little more. However, she is still very sleepy, probably because with the lowered sedation, they are now giving her morphine again to keep her comfortable. Her temp is under 100 for the second day now. That's a good thing.... maybe it will continue that way. Normally the respirator is set for 12 breaths per minute. Yesterday and today they lowered her respirator to 4 breaths per minute. She is breathing around 17 breaths per minute, which means she is taking 13 breaths per minute on her own. Yay!
Update 2: The doctor came in and took Rinne off all sedation. Even though he didn't wait the 30 minutes he said it would take for her to become more aware, he asked her to move her thumb, and she did! He then asked her to move her toes, and she did! Wooooo-hooo Rinne!
Sunday, October 30th:
Update 1: We visited with Rinne for a few minutes this morning. However, they had just given her morphine, so she sleepy again. The doctor is going to have a filter put in her main vein as a precaution to stop any potential blood clots from causing problems. Blood clots can form and break loose when a person is not active. He is also going to ask the hospital rehab to come look at Rinne and start physical therapy.
Update 2: Rinne had her eyes open a lot today. So nice to see those beautiful eyes so much today! The doctor gave us permission to have 2 or 3 people visit at once and spend as long as we want in her room. We can watch TV, and talk to each other. The physical therapist came in and worked on the range of motion of Rinne's arms and legs. Her cultures came back a little higher today, so the doctor said he expects her fever to rise again. They are adjusting her antibiotics again. They did an ultrasound of her legs, looking for blood clots and found none. They will inplant the vascular filter though as planned. They did another CT scan which also looked good.
Monday, October 31st:
The doctor allowed Rinne's brain pressure to get a little lower, hoping it will help her come around a little more... it appears to be working! She raised her hand to touch Mom's face today.
Tuesday, November 1st:
Well, even though it's been 2 days since they have taken Rinne off sedation, she has not waken up very much. She kept her eyes closed almost all day yesterday. Even when her eyes are open, we are not sure if she is focusing or comprehending what she is seeing. I think she may have raised her hand toward Mom's voice yesterday. If I move my head in front of her, she doesn't follow my movement with her eyes. The doctor said she is slow to coming around, maybe from the previous radiation therapy in 1997. Only time will tell. Please keep those prayers coming.
The good news is, they had the respirator set for what they call "CPAP" - where the machine was not actually giving her breaths. She was taking 14-17 breaths per minute all on her own, for 14 hours yesterday. This morning they put a trache collar on her, which means instead of having an oxygen tube going directly to her trache, there is a loose cuff over the trache opening. As she breathes in, she takes in the pure oxygen from the cuff. The cuff is loose enough where she receives some room air at the same time. They will try her on this for 2 hours this morning. This is good progress!
Wednesday, November 2nd:
Rinne opened her eyes a little more today, but still not knowingly watching anything happening around the room. A couple times today her breathing became shallow and more rapid. I was able to talk her into relaxing and slow her breathing down, so she did respond in that way. I don't know if it was the soothing voice, or if she could understand what I was asking her to do.
They did another CT scan today. They are clamping off the drain tube from her head, and will do another CT scan tomorrow or the next day to see how much fluid she has in her head. This will determine if they need to put in the shunt.
Today they put the trache collar on Rinne for 3 hours, and she did well breathing without the respirator again today.
Thursday, November 3rd:
Rinne is the same today as yesterday. She continues to do well during the times she is off the vent, and on the trache collar, for 3 hour blocks at a time.
They have the drain tube clamped, and so far her ICP (IntraCranial Pressure) has stayed down. It was at about 4 this morning.
Friday, November 4th:
Update 1: Today, while I was singing to Rinne this morning, she turned her eyes from the ceiling toward me for a minute. yay! She also smiled for the nurse when she told her too. She continues doing well on the trache collar also. They are going to do a 4 hour block on the collar this morning, and probably again tonight.
Update 2: Rinne was doing so well with the trache collar, they decided to leave her on it for 8 hours, instead of two 4 hour blocks of time. She was moving around a little more today... lifting her right hand, and moving her right foot around a bit. Forgot to mention that she grimmaced while I was singing to her earlier too... she knew I was off key on that note! lol
Saturday, November 5th:
Rinne is awake more often and for longer periods of time today. She looks at us when we talk to her now. Art asked her if she can see him clearly, to squeeze his hand and she did. When he asked her if she can see the TV clearly, she looked at the TV and appeared to be trying to focus on it. She's moving her right hand and foot a lot today. She actually picked up her right leg off the bed. She also moved her left foot. They did a CT scan with contrast today. With the results of that, they decided they can remove the catheter from her head. She apparently will not need the shunt! :) She also has a clean bill of infection.... no more pneumonia.
Sunday, November 6th:
Rinne continues to be more awake, and is aware of the what we say to her. She raised her right hand up, and then worked to get it up to her face today. The doctor told us today that she will be able to move out of ICU very soon, and start working toward getting her to sit up.
Monday, November 7th:
First I would like to send a big thank you to all the wonderful nurses, doctors and staff in the ICU at Inland Valley, for taking such good care of Rinne!
Rinne is doing soooo good today. We asked her to nod her head if the answer was yes to a question we were asking her, and she did. She was fidgety in bed, so we asked her if she was uncomfortable, and I'm sure she did the sign for no. She reached up and touched her head with her right hand, reached out toward me, and she also scratched her left shoulder. She also felt her trache tube. She didn't pull on it, but I think she was checking it out.
The doctor feels she is doing well enough to move to rehab tomorrow! He is going to double check with her other doctors, and make sure they also feel she is ready to move, so we won't know for sure until tomorrow. When she moves, I will post the address and information of where she is here, so you all will know. :)
Tuesday, November 8th:
Rinne is all cleared and ready to roll. Heading north to Reche Canyon Rehabilitation in Colton. I'll post address and directions here soon.
Rinne is all settled in. This is where she is now:
Reche Canyon Rehabilitation & Health Care Center
1350 Reche Canyon Road
Colton, CA 92324
If you want to visit (and don't have a smart phone or GPS), directions can be found here.
Thursday, November 10th:
Hi everyone. Sorry I didn't get a chance to update yesterday. Cellphone reception at rehab is not very good. I'll probably update in the evenings now after I get home.
Rinne continues to become a little more awake and aware each day. She follows commands and answers questions with a nod about 50% of the time. She has to consistantly follow commands before they wean her from the oxygen supplied through the trache, or start giving her liquids by mouth.
I was able to copy a bunch of Rinne's pictures from her computer onto a memory card, and play them as a slide show on her TV in her room at the rehab facility. She seems to be enjoying watching that. We also brought her a radio so she can listen to country music. :)
Today when Mom went to give her a kiss, she puckered up to kiss back. :)
Saturday, November 12th:
Rinne has been a bit sleepy and not really making much eye contact yesterday or today. I wonder if she needed (needs) a little down time. Her pulse was up, which indicates pain, so they gave her morphine yesterday afternoon... which might also contribute to not responding much. She waved good-bye to Josh and Bree last night when they were ready to leave, so even if she is taking time off, she is still with us. :)
Today Art worked with her legs a little - much like physical therapy does....passive range of motion. He then asked her to push against his hand with her left foot, and she did several times, with a fair amount of strength!
Tuesday, November 15th:
Rinne has been more awake on and off the last couple days. Her heart rate has been up, which could indicate pain, so they gave her morphine yesterday. Her heart rate continued to be high even after the morphine, which might indicate anxiety, so they gave her something for that last night and today. So, she is now a sleepy girl again. They also noticed she has increased chest secretions, and a chest xray revealed pneumonia again. So I guess it's good that she is sleeping more so her body can fight off the pneumonia.
Wednesday, November 16th:
Rinne was way more awake today. I gave her a dry erase marker to see how she would do with it. She turned it in her hand to hold it the right way! I then held the dry erase board in front of her & she tried writing! Her hand was a bit too shaky, & the writing was too small to read, but it is a huge step for her! Thank you all for your continued prayers.... they are working! :)
Friday, November 18th:
This afternoon we have a meeting with the rehab staff. They've been evaluating Rinne, and will let us know the treatment plan. They will also answer any questions we have. I'll let you all know what they say. Today is Art's birthday, so depending how this evening goes, I may not be able to update until tomorrow.
Saturday, November 19th:
The plan for Rinne is when the pneumonia is gone, and the secretions clear, they will change her trache tube to a speaking valve. That is a one way valve which will allow her to breathe in through the trache, but she'll have to exahale through her mouth. That will allow the air to pass through the vocal cords, which is needed to talk. Actual rehab won't start until she can follow commands consistantly. The rest of the meeting was mainly about what the insurance will cover, and gave us an idea of what to think about, and how to get the most of her "covered" days at rehab. If she is weaned from the trache, and not ready to rehab, we may take her home until the time she is ready.
In the meantime we hope if we work with her more, and ask her to respond to us more, she might be ready to rehab by the time she is weaned from the trache. The 20/20 special about Gabby Giffords was an inspiration, and we are ready to try seeing what we can do to help her. The problem is the medicine they have her on makes her sleepy. We can be with her for hours and sometimes only get 20 good awake minutes with her. I pray that she will be ready and have the strength to start working soon.
Note: Gabby Giffords was the Arizona Congresswomen shot in the head January 8th, 2011. She was shot on the left side of the head, which affected the right side of her body, but also affected her speech, because the control for that is on the left side (Rinne's stroke was on the right side). Gabby has made remarkable progress since the shooting. The program shows video of her progress, including how her husband helped her early on. If anyone wants a copy of the Gabby Giffords story on CD, let me know (txt my cell, or use email link at bottom of this page). You can also watch the 20/20 special online at:
Monday, November 21st:
Thank you to everyone who joined me in prayer to make Rinne more aware. Saturday afternoon when Art and I got there, she was wide awake. Wanda, Darrell, Curt, Karen, & Dave were already there with her. I sat next to her and told her "You have a lot of people visiting you today.... it's like a party in here!" and she got a big smile!
Yesterday, I told her we need to start working with her to see how much she understands what we say to her. I laid some items on the bed next to her. I asked her to pick up the lotion. At first she just touched and felt all the items. The nurse came in, and while she and I were talking, Rinne grabbed hold of the lotion. I told her that's good, but it doesn't count until she picks it up... so she did! Yay!
Today she tried over and over to tell me something... but I wasn't getting it. She tried to mouth a word, but I couldn't read her lips. She tried a couple signs, but I still didn't understand. Even though I never figured that one out, there were other things she was able to communicate to me. She is definitely more awake, aware and getting better every day!
Tuesday, November 22nd:
Update 1: Rinne was a sleepy gal today. We didn't get to visit much with her. Art and I did however receive training on working range of motion on her arms and legs. She pretty much slept through that too.
Update 2: She was a sleepy gal again tonight. She opened her eyes, but didn't interact much. I really miss her being to talk... I know she would say how much this sucks! Art and I did the range of motion (ROM) exercises with her arms and legs and gave her some lovin'. Hope that's enough for now.
Friday, November 25th:
Update 1: Hope everybody had a Happy Thanksgiving! Lots to be thankful for. :) Rinne has been more awake the last couple days. Our visit this morning was *amazing*. The physical therapist came in to give us a training on working her legs. While she was there, Art asked about sitting her up... so she helped us sit her up on the side of her bed. Rinne got a huge smile on her face. We asked her if she was dizzy, and she mouthed "a little bit". We let her enjoy the moment for 2 or 3 minutes, then laid her back in bed. We'll sit her up again this afternoon.
We were taking turns brushing her hair out. Because she has so much, it was tangled, taking a long time, and she kept wincing. I held the brush in front of her, and asked if she wanted to do it. She took the brush, looked at it for a few seconds, then reached over and brushed my hair. Thank you Rinne!
She was really talking a lot today. We can't tell what she is saying because the air escapes through the trache before going through her vocal cords, but there is a little barely audible sound, and her lips were going like cRaZy today. At one point when we were all trying to guess, she got a big smile and practically laughed. We asked if that's funny, and she got an even bigger smile, and pointed to Bob. Ohhhhh.... Bob is funny! It was great sharing a laugh with her!
Update 2: This afternoon Rinne was just as awake, and just as talkative as she was earlier today. Even though we still can't hear what she is saying, we can make out a few words. She told us her glasses are in her purse at home... and also told us there are instructions on (or near) the refrigerator. I believe she mentioned instructions because she is thinking of things that need to be taken care of because she is not at home! We also sat her up on the edge of the bed again. :)
Monday, November 28th:
The respiratory therapist came in and put the speaking valve in Rinne's trache for about 15 minutes today. We were able to hear her more clearly. It took her about a minute to answer a couple questions that the therapist asked her, but she got the answers right! On the other hand, a couple questions she didn't answer at all. She didn't do very well in her "applesauce" test when they tried to feed her a little. The physical therapist also visited Rinne to assess her ability to sit up and follow commands. It didn't look like they were very successful. Later, her nurse said the medicine she receives about 9am makes her sleepy. That would explain why we can't wake her before 1pm. She was barely awake when they came in to assess her, but after they left she seemed more awake. I think we need to see if we can get her medicine time changed so she will be more awake during the day when the therapists are there.
Tuesday, November 29th:
Ok everybody, big news... today after the physical therapists had Rinne sit on the side of her bed for a while, and exercised her balance, they got her up on her feet! She did pretty good at participating in the process! She also was able to keep the speaking valve in a couple times for about an hour each time. She talks a lot, and definitely still has a sense of humor! To top the day off, we took her outside for a stroll in a chair! Big day! Wore me out! LOL.
Saturday, December 3th:
Hi everyone! Sorry there hasn't been many updates lately. Now that she is more awake, and interacting with us more, we are spending more time with her. :)
It has now been 47 days since her surgery! Rinne continues to progress everyday. The day after they tried the speaking valve on her, they capped off her trache. They then gave her oxygen through a cannula in her nose, but within an hour we could tell she was not going to leave that on. They monitored her oxygen level, and determined she didn't need extra oxygen afterall. :) Soooo, since then her trache has been capped, and no oxygen. Yay! They are testing her swallowing abilities. They add blue food coloring to the little bit of soft food they give her. Later, they suction her lungs, and if nothing blue is extracted, that means she is swallowing properly and not aspirating what she eats. The respiratory therapist said she possibly might have the trache removed in about 3 days (from today).
She sure talks a lot... just needs to work on her volume. Some of the things she says sometimes doesn't make a lot of sense at first... but if we think about it, she is expressing what is going on in her mind, as they occur to her. I don't think we process our thoughts in complete sentences, and with careful consideration of each word. If we listen to the concept of her thoughts, it's easy to see she is figuring things out quite well.
Her sense of humor is very good, and she loves a good laugh. She is also still very witty, and is quick to add a funny comment. I've always loved that about her, and glad to see she still has it! :)
The day after the physical therapist helped her stand (in my last update), they took her to the rehab room to practice standing (her first day in the rehab room!). They helped her stand up for a minute or two three times. Even though she can not get to the standing position by herself, and they need to hold her up, she did her part in helping. Her head is still a little heavy for her, and she has to consciously lift it to look straight ahead, she does with little guidance. She felt a bit dizzy and nausiated, but she hung in there! The next day, the nausia got to her, so they decided to just work with her sitting on the side of the bed for a few days before going back to standing up again. Good news though, Art helped her stand to transfer her in and out of a wheelchair yesterday, and she did it with no nausia.
A big thank you to everyone for all your support! All of your gifts, time, and prayers have helped tremendously. There is no doubt in our minds how much Rinne is loved, and we wouldn't be able to do it without you.
Wednesday, December 7th:
Rinne continues to progress. They haven't removed the trache yet, but I'm not sure the speech therapist has been there yesterday or today. The speech therapist is who needs to evaluate Rinne while she eats and drinks. Soooo close!
She speaks often about preschool matters, and people she worked with at the preschool. Coordinating the preschool was truly a job she knew well, and loved.
She can now hold her head up for long periods of time while in the wheelchair. They no longer feel the need to put her in a high back wheel chair. Occasionally she gets tired, so we help hold her head for a few minutes, then she is on her own again.
Rinne has what they call "left side neglect," which we hear is common for people who have had a stroke on the right side of their brain. Evidently, they tend to forget about the afflicted side. Rinne constantly has her head and eyes turned right. We have been working on getting her to look straight ahead. In the last couple days she has improved a great deal.
Monday, December 12th:
Today when we arrived at Reche Rehab, we found Rinne was missing something... her trache!!! They removed it this morning! woooo-hoooo! We are so happy for her, as I'm sure you all are too! I think this will mean she will be able to start drinking and eating soon.
She also asked a specific question today, about something I wrote on her dry erase board yesterday. I like to leave her little messages on her board, just in case she wakes in the middle of the night, and looks around her room. I had written "You did good" ... and today she asked "what does 'you did good' mean?" ... her first question about the here and now! She's made comments about things she hears in the hall while she talks, but this time it was a question, as if she was looking for an answer. I believe this to be a new level of brain connection for her!
Friday, December 16th:
This week has flown by! The therapist are giving us more excercises to do with Rinne daily. There are not enough hours in a day to do everything. I can see why they say those with support recover quicker and more completely. Some are physical exercises, others for the brain. When asked to answer questions, such as her address & the names of people in her family, she is able to answer about 50% of the time. Prompting helps. Her brain cells are starting to connect the dots, but it's going to take some work. The speech therapist gave us 4 pages of brain exercises to go over with her. Most of them are deep seeded things, such as nursery rhymes, days of the week, months of the year, the alphabet, and songs most people know (such as Row, Row, Row Your Boat). She can accomplish some of these with prompting and encouragement. Also exercises like 'touch your nose' (she does), 'touch your ear' (she does), then ask her 'touch your nose then your ear' (this she can not do this 2 step process yet).
We have a tradition of having our family Christmas party on the Saturday about a week before Christmas. Tomorrow is our party. A couple weeks ago, we were hoping that Rinne would be able to have a day pass to come to the party. Unfortunately we won't be able to do that. So, we are planning to get all visit her between 1pm - 3pm tomorrow, so she can be a part of this important family gathering. :)
Tomorrow will be 2 months since her surgery. Wow!
Monday, December 19th:
I had to post again so soon because yesterday was an exciting day... while standing at the parallel bars, the physical therapist helped Rinne take 3 steps! She is still not able to stand on her own... the therapist estimated that she is holding about 50% of Rinne's weight, but Rinne is doing the other 50%. They physically moved her feet forward to simulate the steps, but Rinne tried to participate in that too.
Also, while running through the brain exercises, and asking her the questions we are to ask daily, she was able to tell us her complete street address, and her full name without prompting!
Another good day! :)
Tuesday, December 20th:
Rinne was able to answer more basic questions correctly yesterday -- maybe 80% that were asked of her! yay! She also was able to complete the 2 step directions... Art asked her to touch his nose, then he asked her to touch his ear, then he asked her to touch his nose and his ear, and she did it! She also noted that was a "follow directions test" LOL. She is coming around more and more every day!
We are wondering if anyone who is visiting Rinne, would be willing to play these brain exercise games with her during your visits? We believe the more often, the more she will benefit. If you can help once a week, or every other week, or even once a month, let us know by either calling me (Cindy) at 951.243.4741, or Art at 951.243.4469, or us. We will meet with you and go over the exercises that the speech therapist showed us. Thank you so much! :)
Saturday, December 24th:
Rinne did very good on the objects game yesterday. She either knew what they were called, or what they were used for, on the dozen items we showed her. She knew both on most of them, and was also able to tell me if they were items from her house or ours!
Physical therapy continues to help Rinne stand and take steps. It's a bit of work for her, but she actually lifts her right foot a little bit to take steps! Her sitting balance also continues to improve, and she can hold her head up for lonnng periods of time now. Even when starts to doze off sitting in the wheelchair! lol.
They also started giving her pureed food, and nector thick liquids. She'll now get 3 meals a day. Right now she is only taking a couple bites of each item, but really enjoyed the apple juice. Eventually the liquids will get thinner, and the foods more solid, as her swallowing muscles get stronger. We can't leave her juice next to her when we are not there, but anyone visiting her can offer her drinks of her special liquids while visiting now.
Merry Christmas to all. Thank you for your love and prayers!
Sunday, December 25th:
Merry Christmas everyone!
Monday, December 26th:
Well, Rinne decided to get up out of bed this morning, when nobody was there to help her. She slid to the floor, and landed in a sitting-up position luckily. She didn't get hurt, and hopefully she doesn't make a habit of that! She didn't remember getting out of bed when we asked her about it later, but that's expected right now because her short term memory isn't working well.
She did well with her "brain exercise games" today. She is able to answer more and more questions correctly every day. However, when we asked where she works, she told us "at the preschool" ... but she hasn't worked there for a while. That may give us an idea that her memory deficit goes beyond just since the surgery.
Friday, December 30th:
Every week the physical therapy department has a patient evaluation meeting. They determined that Rinne is not ready for the amount of physical therapy she is receiving because of her inability to focus on what they are asking her to do. They will continue to work range of motion with her arms and legs, and strength building. They will evaluate her again in 2 weeks.
In the meantime, we'll need to work more brain games with her so her short term memory brain cells reconnect, and encourage her to follow directions. She followed a 3 step direction process yesterday when Art asked her to. The 3 steps were: touch your ear, then your chin, then your nose. He gave her the simple directions first, then asked her to do all three. He also did the same on his face while asking her so she would have the visual of what he wanted her to do. The goal is to follow the directions without being given the simple directions first, and without the visual. Without going to physical therapy for an hour during our visit, we'll have more time to work on these kind of exercises.
They've also decided to lower the amount of her substance through the feeding tube to see if she'll do a better job eating meals during the day. We can now give her thin liquids like water and whatever we want, but her solids still have to be pureed.
Monday, January 2, 2012:
Josh asked Rinne today what her New Years resolution is... she said "To fix it." When he asked her fix what, she said "My left side that isn't working right now." This is a big step for Rinne! It shows awareness of right now! Wow!
Happy New Year everyone!
Sunday, January 8, 2012:
Rinne continues to show more and more awareness of what is going on with her right now.... although, she doesn't always remember those things very long. It's sort of like the movie "50 First Dates". She is somewhere between 10 second Tom and Lucy, who could remember until she went to sleep. We'll sometimes talk to Rinne about something, or have her do something, and she'll not recall it an hour later.
Somethings she does remember however. I've been playing memory games with her. One day, I put paper towel in front of her, and wrote A E I O U on it. I had her say the letters with me. I told her those were vowels. I asked her to remember those, folded it in front of her and set it aside. After 2 minutes, I set the folded paper towel in front of her, and asked her what I wrote on there... she remembered! She remembered them 5 minutes after that... 10 minutes after that, and 20 minutes after that! Out of curiosity, I pulled the same paper towel out the next day, and without unfolding it, asked her if she remembered what was written on it. After a little thinking, she said A E I O W... she was so close. I'm sure she says W because after we talked about those being the vowels, she added that sometimes Y and W are vowels too. Every couple days I pull the folded paper towel out and ask her about it. Every time she remembers! (but answers A E I O W).
I started another memory game with her. I wrote the number 1 on an index card in front of her. I turned over the card and wrote the word "sun", and drew a picture of a sun. Telling her that sun rhymes with one, and I wanted her to remember that picture. For some reason, that is not sticking. Maybe because it is not deep seeded like the vowels are.
A couple days ago, while getting her ready to transfer from the wheelchair to the bed, Rinne was able to raise her left leg off the foot rest a couple inches! Art, in his elation, while telling her how great that accomplishment was, then moved feet up and down as if she was marching (she was still seated). One up, the other down, then visa versa. He noticed she was participating, even if not realizing it. She was actually trying to lift her left leg every time it was that legs turn to lift! He got the idea that maybe a bicycle peddling device could be used from the wheelchair. I had one at one time, so he knew that it existed. He asked physical therapy about it, and guess what... they had one! Yesterday, we set it up in front of her wheelchair and she peddled it!!! Occasionally she needed a little help when the left leg had to do it's job, but very little, and she did it! Unfortunately, an hour later, she didn't remember that she did that. But it's all coming back, a little at a time, and I'm sure that will improve too. I recorded a video of her peddling, so I'll show that to her to see if that helps her remember.
Speaking of videos... with a little prompting, Rinne knows that she is at Reche Rehab... but has not been sure that is not home. On Wednesday, while at her house, I did a video walkthru of her house. She couldn't watch the whole video in one sitting.... she closed the computer half way through... but eventually agreed to watch the rest. At first, because I narrated the video while making it, we had the sound down, and asked her if she recognized the front of the house, and the cars parked in the driveway. She was not able to answer correctly, so we turned the sound up, and just let her watch, and hear what I had to say as I recorded it. She didn't say anything while she watched, but must have absorbed it. Later, when we got her back to her room, she asked "so how long will I be here?" Another big awareness for her!! Yay!
Ok, I may have missed a few days of posting, but I may have made up for that! LOL
God bless you all!
Thursday, January 26, 2012:
Hi Everybody, sorry it's been so long since the last update. Art and I were out of town for a week. We enjoyed spending time with our friends at the bus conversion rally in Quartzsite, AZ. Rinne was in good hands while we were gone. A big thank you to everybody who has been there for her! She has a lot of loving people who care in a lot of different ways. We are all so blessed!
Rinne continues to progress a little every day. Although she still needs support while standing, and moving the left leg forward, she is able to go the length of the parallel bars now taking baby steps with her right leg!
She is also able to recite the alphabet, count, and other brain games with very little prompting now. These still need to be done daily though, as she tends to have times when the thought connections are not as clear.
The big news for the day ... we are making arrangements to bring her home in about two weeks!! More details to follow. :)
Monday, January 30, 2012:
Ok, we are set to bring Rinne home on Saturday, February 11th. We have no idea what time, and probably won't until we are actually driving away from Rehab that day. Feel free to stop by on that afternoon for her homecoming. :)
Thursday, February 9, 2012:
Ok, everything is coming together to bring Rinne home on Saturday. As we mentioned before, everybody is welcome to come by and say hi. :) We still don't know what time we'll get back to the house, but there will be at least a couple people there all day, so if you get there before she does, that's ok too. We would also like to extend the invitation to Sunday too, if that works better for you.
Monday, February 20, 2012:
Yay, Rinne is home and we are all getting settled and into a routine! She has made *aMaZiNg* progress since coming home! Although we can not seem to convince her that this is HER house (and not ours), she knows everything about it. Because we can't yet get her up the stairs, I took pictures of her room, bathroom and closet from many different angles, and showed them to her on the computer so she could see it. She recognised everything in those pictures as her room. When we ask her where to find an item, she can tell us. If we ask her about things done around the house since she moved here, she can tell us about what was involved in doing it.
Her memory is very much improving. She now remembers that she transfered from the preschool to the district office some time ago, and can tell us about things that happened even the week before the surgery. She hasn't quite grasped that it's been 4 months since her surgery though (can you believe it? - I can't!). It's understandable why that concept of time doesn't exist for her. We are still need to work on short term memory, but that also is coming back!
Her thoughts are becoming clearer, and when she talks about something, if it comes out all jumbled, she says "that didn't make sense." lol.
She is coming back to us more and more each day! Thank you everyone! Thank you God!
Tuesday, March 13, 2012:
Sorry it's been so long since the last update. Every day is like a new adventure around here. We are however starting to settle into a routine. Our day consists of morning bathing & dressing. G-tube feeding 3 or 4 times a day depending on how much she is able to eat by mouth. A couple weeks ago eating 100 calories a day was a struggle ... she can now manage to eat 100 - 300 calories a day! She also can eat just about anything that is not very chewy. She naps for 2 - 3 hours between 11 - 4pm. It still takes two people to care for her (one with muscles to move her around, and a female to help with private things - some activities take both people at the same time), so Art and I usually take turns running errands while she naps. She receives in home physical therapy 3 times a week. She has just been approved for occupational therapy, so we'll work that in too.
Rinne continues to improve a little each day in many areas. Her memory has improved the most! She remembers many of the day to day things, and also can recall events many days after they occurred. She does have a fair amount of confusion and attention deficit though. Some of which she remembers did not really happen, and imagines things that are not really there. Even though she knows everything about this house, we can not convince her this is her house. The neuro doc thinks maybe she still has pressure in her brain from excess fluid. She had an MRI yesterday, and will have a lumbar puncture next Monday. The doctor said many patients become less confused within a few minutes after the puncture. If this is the case with Rinne, she may need a permanent shunt to drain the fluid and keep the pressure down.
Her long term memory is excellent. She is her sharpest when she has visitors and they are able to chat about things that have been a part of her life for a long time. She is on her game, and is very witty! She looks forward to those visits!
Physically she is gaining more control of her left leg. You can tell it is work for her, but she can now put her left foot up to and down from the foot rest in the wheelchair. We are soooo happy about everything she is able to accomplish, even if they seem like baby steps at the time. Yesterday, almost as if Rinne was saying "you think that's something... watch this..." while sitting in the wheelchair, she swung her left foot in front of her from the ground to Art's knee (a good 18" up)! Imagine our surprise!! Thank you for your continued prayers and support! Rinne sure has a lot of people who love her!
Tuesday, March 20, 2012:
Rinne tolerated the lumbar puncture well yesterday. She said the only thing she felt was when they rubbed something that felt like jelly on her back. No pain, and no residual effects! Yay!
The doctor said the pressure measured normal to low.... which means high pressure is not causing her confusion. He said even normal pressure could add to confusion, so he drained a bit and asked us to let him know if it makes a difference over the next few days.
Wednesday, May 30, 2012:
My Dear Sweet Little Sister,
I am soooo sorry for what you are going through now. I wish I could take all of your pain, and all of your troubles away. When we were growing up, because I was a few years older than you, I always loved taking care of you, and helping you learn about life. After you grew up, you became an independent woman. You have been through so much in your life and have handled it all! You've done a wonderful job taking care of yourself and raising your boys! Look at all you have accomplished! I am amazed by you!
The cancer in the 90's gave you a challenge that you met and conquered! Unfortunately, as time went on, the radiation left you with new challenges. Just as you were trying to figure out how to deal with those, this happened. The doctor feels these surgery complications may be a result of that radiation.
So now you have more challenges.... but I know you... I know you can muster the energy and the motivation to conquer these too! Take as much time as you need. We will all be here for you! In the meantime, let me hold you like I did in this picture. Let me protect you, and kiss you gently on the head. Let me help you through this.... because I love you more than you know.
Cindy, age 6 ~~ Rinne, about 3 to 5 months
Thank you Mom for finding and sending this picture, I LOVE it! Thank you also for being here and not only helping Rinne, but helping Art and I too.
Art, you have the patience of Job! I love how you wake up every morning like it's a brand new day. I would not be able to help Rinne without you. You are awesome, and I am soooo blessed to have you in my life.
Thank you everybody who continues to help, whether its physically, emotionally, financially or in prayer. Every bit of support is soooo much appreciated.
Sincerely, and with love,
In many ways Rinne continues to progress. She is using her legs more and taking steps to get from one seat to another throughout the day. She still needs help getting into a standing position, and help holding her balance as she takes those steps. It's still a delicate operation to help her walk as left leg is still weak, and her ankle is not "anatomically correct" so we are worried that she might sprain it. She received her new leg brace yesterday. Hopefully, this will help take away the worry of further injuries, and she'll be able to progress more with mobility.
Unfortunately, in other areas Rinne seems to be regressing a bit. I'm going to mention these right now only because Art and I are both surprised that this is part of the results of stroke. Whenever we have heard about stroke victims before, we only heard about the paralysis, or weakness on one side, or difficulty with speech.
Rinne has even less interest in eating than she used to. She was making progress eating by mouth and increasing her calorie count. We were able to skip g-tube feedings, until she started eating less and losing weight.
We hear it is very common for people with right-hemispheric strokes to not recognize their limitations. Rinne is not an exception. She thinks she can (and has) walked wherever and whenever she wants.... which takes away her motivation to get better.
Cognitively, she seems to be having more trouble as time goes on. We plan to talk to her neurosurgeon about this, but found this can happen to 1 out of 4 stroke victims.
We still have a lot of hope for Rinne, and ask that everyone continues with their prayers. She needs it now as much as she did in the beginning!
Thank you soooooo much!
Wednesday, August 8, 2012:
We thought you all would like to see the progress in the last few months! The first video was done in March, and the second video was taken yesterday.
Wednesday, October 17, 2012:
Rinne's brain tumor surgery, and resulting stroke was one year ago today. What a year this has been for her! She is making it through it though!
Rinne's mobility continues to improve. She is getting around the house very well with her cane now! Even though she still needs a person to walk with her to make sure she doesn't run into walls and furniture that is still not easily visible on her left side, her wheelchair is not needed, and no longer available to her when she is hanging out at the house.
Funny thing happened when we started requiring her to walk everywhere she wanted to go. It may be coincidence, or maybe not, but her mind seems to be clearing a bit too!!!
With occupational therapy, and exercising between sessions, Rinne is also getting some purposeful movement in her upper left arm!
The gastroenterologist is sending Rinne for a barium swallow test to make sure she can take her nutrition orally with no problems. We know she will pass this test with flying colors, because she is able to eat anything - and is now able to eat about 600-700 calories a day. Once this test is done, we will stop giving her g-tube feedings for a few days or so, and see if she gets hungry enough to maintain her weight. We may have to continue giving her water through her g-tube, but hopefully she'll get thirsty enough to drink more soon, then there will be no need for the g-tube!
One of the coolest things I've noticed very recently is that she and I are starting to finish one anothers sentences, and think alike again! I can't tell you how much that warms my heart!
As you can tell, she has come a long way! Thank you everyone, for your continued prayers and support! God bless you all!
Internet Explorer, refresh = F5
Firefox, reload = ctrl R
We are wondering if anyone who is visiting Rinne, would be willing to play these brain exercise games with her during your visits? We believe the more often, the more she will benefit. If you can help once a week, or every other week, or even once a month, let us know by either calling me (Cindy) at 951.243.4741, or Art at 951.243.4469, or us. We will meet with you and go over the exercises that the speech therapist showed us. Thank you so much! :)
We established a fund to help Rinne with expenses during this difficult time. If you can help, click here. We understand if you are not able help at this time. We know these are difficult times for a lot of people. Prayers are still very much needed and appreciated! Thank you everyone for being there for her and for us.