Friday, September 30, 2011
Kool-Aid is a medical product
Clare needs to pass three swallow tests with a blue die before they will remove the tube that goes down her throat. They put blue Kool-Aid powder on her tongue and small ice chips in her mouth. They deflate the cuff holding the tube in her wind pipe, then as she swallows her very blue saliva, they check her lungs for any blue coloring by suctioning through her trachea. No blue color means she is swalling properly. Today she passed her 1st test. Monday they will do it again and possibly another test on Tuesday. She is really breathing very well on her own and we hope and expect her to earn her "speaking" valve early next week.
Clare's appearance is very thoughtful as she lays there quietly watching things in the room. She still likes to move her left leg and arm. She enjoys rubbing her spiky hair. Physical therapy took her outside yesterday and today and she liked that. Kris was with her and he said she relaxed and fell asleep out in the fresh air. I see such progress every time I visit.
We appreciate Millard County for adopting our kids and making them one of their own. We continue to learn of community support that really humbles us. We hope we can someday meet the friends and employers that have rallied the community to care for our children. This past week there was a fund raiser for Kris and Clare and we understand that many families in Millard County will be eating pizza for the foreseeable future. It is impressive to us that this level of concern exists for people that have only lived in that community a few short months. It's no wonder why Kris and Clare love living in their "new" home so much. We hope they can be back there soon.
Tuesday, September 27, 2011
More Milestones - BIG ones
Physical therapy seems to be accelerating Clare's progress. Her eyes are so much more expressive. She likes to raise her eyebrows and make facial expressions. I am not sure if they are all intentional or if she is rediscovering facial muscles and just trying them out. There are times when I think she recognizes me and other times when I am not sure.
Clare is much more relaxed now and will lay for long periods of time just looking around. I like this much better than the thrashing and the look of panic that we have witnessed in past weeks. That has been really hard for all of us and especially for Kris. Today marked 4 weeks since they put the external fixators into her pelvis. They said they would stay in place 4 to 6 weeks so the next big visible hurdle will be to have these removed.
Any bets on what the first discernible thing Clare says will be? Several of the nurses have warned us that it will be a 4 letter word.
Monday, September 26, 2011
A Hug
She is doing well with her therapy too. She is swallowing a few ice chips and she is following simple instructions and answering questions with blinking her eyes or giving the thumbs up.
She was very awake tonight. Her eyes were bright, and she shows a lot of expression when she is interested, uncomfortable, or irritated. As I was getting ready to leave, I leaned in and told her I loved her. She reached up her left arm and let it fall behind my neck, resting it there in a light hug. What a sweet moment.
I am so grateful for these small miracles.
Saturday, September 24, 2011
More than a kiss
Clare is doing much better on remembering to breath on the ventilator, even when she sleeps. They have backed off one of her pain medications and that has made a big difference. When I walked into the room she turned her head and looked at me. That is new in the last day or so. She is able to better track with her eyes.
I saw physical therapy work with her this morning. Clare was really kind of difficult and wanted to sit up all of the time. That has got to hurt with those rods protruding from her pelvic bones. It was my job to control her left arm. She is very persistent in trying to push and pull and just put that arm everywhere you don't want her to to put it. She knocked the air tube off her trachea 3 times.
When we got her back into bed I was talking to her and she was calm. The therapist was on one side of the bed and I was on the other. I asked Clare if she knew where she was. She nodded her head up and down.! I looked at the therapist and asked if that was a yes. He said, "it sure was." He leaned down and said "Clare are you in pain?" And she shook her head no! We asked her a couple of more questions and she answered them all. This is so much better than the blinking code that neither of us could figure out. The therapist asked her to open her mouth and she did. He told her she could not talk but to "mouth the word HI to your dad." She did!
I asked her if she could see me and she closed one eye, then the other, and back again. She did this over and over as if she was looking out each eye to show me she could do it. I put her glasses on and asked if she could see better. She continued to look through one eye then the other.
This afternoon she smiled twice for Dan when he visited and also gave Kris two kisses. I told Kris it was about time she did something for him. Clare usually does things for others and Kris jokingly says that she will never do anything for him. She did tonight! I am really looking forward to what this week will bring.
The doctors have told us that this time can be violent at times and we have seen that. She is coming out of a very confusing place and she is becoming more aware of what is going on around her. But wow what a 48 hours. She is doing great.
Thank you for your kind thoughts and continued prayers. We feel it and I believe Clare is now feeling it. We have prayed long and hard for a miracle and we are witnessing it happening every day. It has been a very long 5 weeks. But in other ways as I look back it all mushes together because there are so few things/events to gauge time by.
Thursday, September 22, 2011
What is a 'normal' day
Clare is not resting as much as she once did. Not by choice but because she has a full staff committed to helping her get better. There are respiratory therapists that work out her lungs, physical therapists that put her on a tilt board and work out her body, occupational therapist that help her remember skills and work with foam balls and wet washcloths, speech therapists that are teaching her to swallow, dieticians that balance what is going in and out, a case worker that coordinates family, medical personnel and the insurance company and let’s not forget her nurses. I came down this afternoon hoping that Kris and I would be able to meet with the doctor and we met with the doctor and almost every one of the directors that are over her care. We timed it just right and spent over an hour talking with them.
Clare is making noticeable progress every day. She is moving her arms in controlled purposeful ways. She is getting better at following simple instructions. Of course her awareness drifts in and out but that is to be expected. As the physical therapist put it, “she may have 2 good days this week, 3 good days next week, and then every day will be a good day.” They are all very encouraging and positive about this long process Clare is going through. They are careful to point out that it will take a long time to get back to daily life, but they all seem to think it is probable and for that we are thankful. Kris looks stronger and healing. Today everything is going in the right direction.
Her hair is growing
When I was with her last night, her left eye was bright and expressive. She arches her eyebrows and looks very alert. I am unsure if she knows me, but I do know that she knows Kris.
I do know that there are a lot of professionals that are working to build her muscles again, and to teach her the basics. My thanks goes whole heartedly out to them, and I pray that they will be inspired to provide the treatment that she needs.
Small steps, every day...Keep up the prayers.
Wednesday, September 21, 2011
A Penny
Whenever I hear the song of a bird or look at the blue, blue sky
Whenever I feel the rain on my face or the wind as it rushes by
Whenever I touch a velvet rose or walk by a lilac tree
I’m glad that I live in this beautiful world
Heavenly Father created for me.
He gave me my eyes that I might see the color of butterfly wings
He gave me my ears that I might hear the magical sound of things
He gave me my life, my mind, my heart I thank him reverently
For all his creations of which I’m a part
Yes I know Heavenly Father loves me.
Clara W. McMaster
My favorite part about running is the peace and quiet I get in my head. It is these times when I connect with my Heavenly Father. As I was running along deserted streets feeling grateful for small things I noticed a penny on the dark road. I didn’t want to burden myself with the weight of this object and ran on past. It kinda bothered me and I thought about turning around and picking up that penny. I didn’t. I was on a mission to run a set distance and that penny would just slow me down. It bothered me. I did a large loop around a neighborhood and found myself going back down the road where I saw the lone penny. It shined brightly on the dark road reflecting in the lights of passing cars. I picked it up this time. It didn’t weigh me down. It actually lifted my spirits. I felt happier the rest of my run. Don’t pass by any pennies today. They may make you happier.
Tuesday, September 20, 2011
One Month
Something else that goes without saying is that we are not professional bloggers doing this for the advertising dollars. Today there really isn't anything new to tell. They are getting into a routine of physical therapy, speech therapy and working her lungs with different settings on the ventilator. By the time we get here in the evening Clare is worn out and we watch her sleep. We will keep this updated when something new comes along, but there might not be something every day to tell.
She is making small progress every day. Some days she doesn't do all of the things she did the day before but she has not slid backwards.
Thank you all for your continued prayers and concerns. We are still grateful for all of the tender mercies that we feel coming our way.
Monday, September 19, 2011
The workouts begin
The good news is that two days of fasting has reduced Clare's liver enzymes. It did not decrease the pancreas enzymes but the doctor says they're mildly elevated and Clare indicated they weren't causing her pain, so he's not concerned about them. They have started feeding her again and I am sure that is making Clare happier.
She did move her fingers and toes on command. When Clare's Grandpa and Grandma visited today they said they thought she tried to smile. I would like to think she did.
Annette's sister Eve was with Clare this afternoon. Physical therapy strapped her on a tilt table and then turned her upright into a standing position to work her legs. Clare raised her arm when they asked her to. Speech therapy came and talked right in her face as well. She was on the tilt table for 2 hours which explains why she is sleeping so well tonight. It was a real workout for her. It was the first time she has done more then just breathe in over 4 weeks. Doing things like this is what her brain needs to help make connections.
Sunday, September 18, 2011
Sept 18th
People keep asking us if Clare is doing well. This is kind of a difficult question to answer. A better question would be "Is Clare still making good progress?" One of the first blog entries that I did said that we compare everything to the past. So when we say she is doing well it is in comparison to where she has been and that she is making steady progress. Coming from a coma score of 3 to 8 is significant progress. Clare will probably have to relearn many things. We won't know the full extent of her injuries for many months to come.
Clare does like to find and focus on the colorful butterfly Char bought her. She is in a very good place to get well. All of the staff is very upbeat and positive about her progress. That is what we need to keep going. Kris spent time at the hospital today and I feel pretty confident that I can speak for all of us when I say thank you for everything that so many are doing to help. Kind thoughts really do go a long way to make this road one we can travel. I am glad we are not traveling it alone.
Saturday, September 17, 2011
We are talking. . . sort of
Clare is making some very encouraging progress every day. Annette has been with her the past two nights so it has been some time since I have spent time with Clare. Being away for a couple of days makes all the baby steps seem bigger. Her eyes are so much brighter today than a couple of days ago. It looks more like she is in there all the time. Today marks 4 weeks since the accident. I hate to look back and see where we have been, but only when I do can I see the progress that both Clare and Kris have made.
The really big thing today is that we can get Clare to respond to us by blinking her eyes. One blink is yes and two blinks is no. Her level of awareness drifts in and out so there are times when she is more responsive to answering us. But when she is aware, she will blink and answer questions. She will even open her mouth for the nurse when they are doing her oral care. Her eyes were open most of the day. When I moved just out of her view she looked annoyed until she could find me again. Any of you that have received the “Clare Glare” know what I mean. I tried to not move too much if she took the effort to find me.
When Bethany and I were talking about her, Clare got annoyed. I asked her if it bothered her when people talk about her in the room. She blinked her eyes emphatically once. We tried best as we could to talk directly to her and stopped talking about her. This made her much more at ease. I asked her if she would like me to tell her about her injuries (she usually gets very agitated when we talk about her injuries) she blinked once. I told her generally of all that had been repaired and how she was healing and time would make her all better. She kept calm the entire time. She knows what is going on around her. Keep that in mind if any of you stop in to visit. Keep the visits short and please do not ask others to recite her condition or status while you are in the room.
I asked Clare if she would watch the BYU UTAH football game with me tonight and she blinked twice. I guess I will be keeping the TV on mute. We have her IPOD next to her bed and her own music playing very softly. Sometimes I cannot hear it over the noise of the equipment in the room, but it seems to sooth her and create a familiar atmosphere. We hung a rainbow colored butterfly mobile above her bed and tucked a picture of Jesus in the ceiling tile. She found them. I don’t know how well she can focus, but it will give her something to work on.
They keep telling us it will be a long road. I am ok with that as long as I know where the road is going.
Friday, September 16, 2011
Elevated Enzymes
Clare has some elevated enzymes again which indicate some issues with her liver, and other organs. They halted her tube feeding for a while today until they can place a new feeding tube into her small bowel. She is continuing with the pressure support mode for breathing during the day which is allowing her to do most of the work. She is also continuing with physical therapy.
Tomorrow Clark will go down to spend time with Clare. Hopefully he will have an opportunity to see her during the day when she is more awake.
Kris is still recovering from the last surgery on his wrist. He was able to spend some time with Clare today. He is so sweet with her. Just a few more days recovering and he will probably be back full time with her.
Thank you all for your continued support and prayers.
Thursday, September 15, 2011
Sept 15
Annette went to the hospital tonight and Clare has been sleeping peacefully. Today they had her ventilator on a setting that allows her to do most all of her own breathing. She did very well from 7:00am to 5:00pm and we are told that doing this will wear her out. They switched to an easier setting for her to rest tonight. They put a pain patch on her and it seems to be controlling the pain better. Tonight our nephew that is a doctor with training in brain and spinal cord injuries visited. I wish Clare was not so calm and would have perform for him. I am glad Clare is resting peacefully but I would have liked to have had a second opinion.
Clare is getting range of motion therapy 5 times a week, one to two times a day. They continue to monitor and attend to the "alert" of the day. There are so many things that they want to keep on top of so they don't become real problems. So far we have done well avoiding big problems.
Kris went to Delta to try and get some recovery in after his surgery. He told me he is anxious to get back here tomorrow to be with Clare.
Nathan had a good idea yesterday that we should hang a colorful poster on the ceiling above her so Clare did not stare at a white ceiling tile all day. Anyone have a large stiff lite picture and a way to suspend it above her? Any ideas?
Thank you for your continued concern and prayers. They are definitely working.
Wednesday, September 14, 2011
What is a "Coma"?
Verbal: None (1) (everyone with a tracheostomy is given a 1)
Motor: Flexion to pain (3)
Total GCS: 8
Tuesday, September 13, 2011
Clare's Angels
Clare had a better day today and Annette and Bethany spent the evening with her. She has been very calm compared to recent days and she kept her eyes open much of the time. We hope she can have more peaceful times. She appears to know we are with her and Annette said it has been a very nice visit most of the night.
We are learning that as she becomes more active, she gets into more trouble and she can do it very quickly. There is some kind of rebirth going on with her and it can be violent at times and come on very suddenly. The nursing staff is very capable, but they are not with her all of the time. We have been glad to have been there on several occasions to care for her or alert others to get in there.
Twice tonight Clare threw up and Annette and Bethany were there to help clean her up. It is at times like this that we think how nice it would be to have more help in being there for her when we cannot be there.
My brother Tom has volunteered to coordinate family and friends that would like to help with being with Clare. It would be one or maximum two people to just sit with her. The intent is to get coverage when we think our families won't be there, and if we do show up then that is OK too. We don't plan very far in advance these days so knowing Clare is covered would help us all out as we try to handle our schedules. Kris would like to spend more time with Clare, but he needs to find time to rest and recover himself. If you would like to be part of this group please email Tom at claresangels@gmail.com and give him your contact information such as phone, cell phone, if you take text messages, your email, and availability to be there.
We continue to be buoyed up by the faith and prayers of so many. We cannot say thank you enough.
Monday, September 12, 2011
Long Road
At this point it is really emotionally taxing. We may have need for friends and family to take short turns in "being there" for Clare, so that Kris (especially) and the rest of us can take a break without feeling that we are abandoning Clare. One of our focuses should be to stay healthy and strong so that we can be there for Clare to assist in her future therapy and to help as she returns to her home. Please check with Kris, Clark, or I before visiting. We don't want to overwhelm Clare as her brain tries to heal itself.
Kris will be having surgery on his wrist tomorrow. He decided to go through the surgery after getting a second opinion today. His dad will be coming up to be with him.
Please all...continue in your prayers. Clare, Kris and our families continue to need them.
Sunday, September 11, 2011
Pain is good?
It is very apparent to me that she does not know what she is doing and she does not know what is going on. We saw Kris just before they took Clare on a transport back to the hospital for another CT Scan. They started a blood thinner yesterday and they want to be sure that there is no hemorrhaging in her brain. The scan came back good and shows improvement. Clare is now back at the specialty hospital.
Evening update: Annette is now down with Clare and Kris. She says that Clare is still "really wild and they finally came in and gave her more pain medication." Clare has a long way to go but all of these changes are what we have been waiting for. It is so hard to watch her in such visible agony and know that it is in her best interest that she is on this path. (There has got to be a life lesson in there somewhere.)
Saturday, September 10, 2011
THAT WAS NOT A BABY STEP
We went back to the hospital and talked to Clare for a couple of hours. We started preparing to leave around 9:00 pm and she again showed her displeasure with the whole situation. But something was different. When we asked her to open her eyes she did. When the nurse had asked her to squeeze her hand, she did. And more importantly, when she asked her to release her hand, she did. Kris got in Clare's face and talked to her. As her eyes were open and gazing at him, he told her how much he loved her. Clare's mouth started moving like she was trying to talk. She did make some noise but as long as she is on the ventilator she can not talk.
It is difficult to explain exactly what happened tonight, but we were definitely communicating with Clare and she was trying to communicate with us. It was a very big step. Things are changing and appear to be changing rapidly in just the day since she was moved to the speciality hospital. We are so grateful for all of your prayers. They are working.
3 Weeks
All of the signs are positive. It is just hard watching her. Clare thrashes in bed and looks like she is in terrible pain, but we know this is what needs to happen and continue to happen as she continues to make progress.
Friday, September 9, 2011
Quick update
We will post more later. For now we need to sleep.
Thursday, September 8, 2011
Oh Mr. Darcy!
Today, in the afternoon, Clare had a feeding tube inserted in her abdomen going straight into her stomach. Clark said that she looked much more comfortable without the tube in her nose and that she looks more like herself. Now that the new tube is placed, they will be watching her to see if she can be moved to the LTC unit. Maybe this will happen tomorrow, and maybe it won't.
Clare is also becoming more active...or maybe it's more agitated. She is really moving her left arm and left leg. She has to have a soft restraint on the left wrist so that she doesn't pull out her ventilator or feeding tube or push on her external fix
ator She is now opening her eyes frequently when she coughs and regularly makes faces to show her discomfort.Kris made the journey to Delta and Meadow yesterday and today. He is scheduled to have surgery on his wrist on Tuesday. We had hoped that all the surgeries were done, but apparently not.
We continue to have family, friends and acquaintances tell us that they are thinking and praying for Clare, Kris, and our families. As amazing as the health care professionals have been, I know that the healing that needs to happen with Clare is in the hands of a higher power. I am so touched when I learn of all the prayers and thoughts that are being directed our way. I truly believe in the power of prayer and have felt it many times in my life. So, regardless of what religion you are or are not, please keep your prayers and positive thoughts coming our way.
Wednesday, September 7, 2011
So. . . that's why it hurts
Kris's information is more interesting. He continues to heal and is pretty much off all pain medication and just tuffing it out. We had a meeting with the medical staff this morning and asked them many questions about Clare and Kris. They decided that Kris should visit with the trauma doctors. Kris has mentioned pretty consistently along the way how his elbow and wrist cause him pain. The standard answer is that his broken shoulder is causing the pain downstream. Well they x ray'd his wrist and found that it is broken and dislodged. So that's why it hurts. He will have it set tonight and then Tuesday they will do surgery and put a plate and screws in it. (and I thought we were done with surgeries)
Clare was restless today. She is moving around a lot more and kind of thrashing in bed. Her eyes remain closed. She did open her eyes once that the nurse noticed. As we are reminded every time a medical professional talks to us, the steps will be very slow and it will take a long time. We like every small step that we get.
9:54pm update. Annette went down this evening to be with Clare. She did open her eyes a few more times this evening.
Tuesday, September 6, 2011
Long Term Care -
Annette, Kris, Char and Rod toured a specialty long term care facility in Orem this evening that Clare may be moved to as soon as tomorrow afternoon. I have mixed emotions about this move. The first emotion I feel is disappointment. We are moving to a long term care facility. That means that the experts do not think she will wake up tonight. On a subconscious level it feels like a portion of hope has been ripped away from me. I know this is not the case but it just feels that way. The faith and hope of others is so important to us right now.
The other emotion I have is that we need to get her to a place that specializes in long term care and one that can help her in every way to be healthier. So I am in favor of moving her. Talk about conflicting emotions but that is what we specialize in lately.
Today I got the shot in my arm that I needed. On the Today Show this morning, someone that Annette and I have known for 7 years was featured. Shelly had a terrible accident this year and now is recovering. It gave me much needed hope today. Maybe it will lift your spirits as well.
http://www.msnbc.msn.com/id/21134540/vp/44407338#44407338
8:25pm update: Annette just called me and said Clarissa opened her eyes. They were looking the same direction this time. Then she closed her eyes again. Annette will help give her a bath to see if they can get her to do it again and call me back. Is it too much to hope for a miracle tonight? Last night as I was walking from one store to another I was overcome with the feeling that everything was going to be alright. I felt peace. It lasted for several minutes as I walked. I am feeling it again now as I type. If you have time please say another prayer for Clare.
9:25pm update: OK here is the rest of the story. Bethany was visiting and they were viewing the above video on her computer next to Clare. While they were watching it, Clare coughed (she does it fairly regularly) and opened her eyes. She blinked 6 or 7 times and then closed her eyes. Her eyeballs were looking in the same direction which is something new. They couldn't get her to do it again. After her bath they gave her more pain medication so she will sleep easier. Like I have said several times before, she is a one trick pony. We will have to wait to see what tomorrow brings.
Monday, September 5, 2011
Labor Day
Sunday, September 4, 2011
Ab Workout?
Today's news-Clare has another new "trick" to add to her repertoire, she lifts her left leg up like she's doing leg lifts, meaning she could have some tight abs by the time she wakes up ;) We were informed she has some thrush in her mouth, which can be treated within 2-3 days by some anti-fungal medications. They said that is pretty typical for patients who are on lots of antibiotics. According to her nurse, it's kind of inevitable to happen at some point no matter how good your oral care is.
Thank you again for all your prayers and those who fasted with Clare and Kris in mind today.
Saturday, September 3, 2011
Two Weeks
Friday, September 2, 2011
Jail Break
