A Follow up on Homelife for Katy

We've been home almost two weeks and we're so thankful to be here. Katy is doing very well. She has rehab in Stanley three times a week. We've been working with UWEC to set her up for online courses this Fall and she will be taking an writing class and a wellness class. 

She never had to have any surgery though they are going to keep an eye on her arm that is numb and if it doesn't get better in a few months, they will do an ultrasound to look and see if the nerve was just stretched or was severed and will decide if they should do something about it. There is still the double vision but they set up her Domo glasses with tape half covering the one side and it helps! She said it's getting better.

She does a lot of logic puzzles and crosswords, etc. and loves doing her speech therapy homework as well. We expect continued success and restoration of her frontal lobe functions as we go along this Fall. In October she will have another neuropsych test to see how she is improving and to get an idea if she might be ready to live on campus for the Spring semester. I am confident her improvements will continue.

In November she will have another MRI to see how her shearing has healed and to make sure all is going well. We have not experienced any seizures and hope never to have that happen. 

Her memory is coming back little by little. Sometimes she'll think of something but is not sure if it's from a real memory or from what people told her.

We are so grateful to everybody for their positive thoughts and prayers, for the cards and letters, Facebook posts and visits. We are thankful for the staff in Marshfield at the hospital and at the Ronald McDonald House and to all the people who donate or collect pop tabs for them. Thank you so much to my mom for helping with the kids and my house and plants and to Rita N for keeping my lawn from growing into a jungle while we were gone. 

We thank God every day for Katy's positive attitude. She never has a bad day, has not felt down on herself, depressed or angry. She appreciates all her friends and her family and has grown spiritually and emotionally so much.

Tuesday is the Big Day!!!

We had our meeting with the team this morning and found out we are getting out of here on Tuesday. It is so exciting to know that we will again get to be in our own home after over two months in the hospital.

Her Neurologist came by and showed Katy the MRI and CTs that she had when she first got here and the follow up CTs so she can see the extent of the injuries. She showed her the injury to her corpus collosum which is deep inside the brain and connects the two sides as well as controls her motor skills. She also showed her the inside of the injury to her right side and explained more about the injury to the frontal lobe which is the processor to what is stored in the brain. She explained how, as amazing as it is to have all the memory stored without a great loss, it must be processed and that is where we still need to heal, along with the motor skills. She also explained that the nerve in her right arm was most likely destroyed and not just damaged and so she will probably have to work around it and learned how to use her muscles while not feeling the use of it. She writes just fine, it's just when she tries to throw something, she can't judge the throw so it doesn't go far.

She also is going to have to add stimulation from the outside slowly. The way they explained it was that the brain normally knows how to organize your focus on what you are doing as well as giving little focus to what is around you. With the damage, every stimuli that is around is getting equal attention and it confuses her processing. We have to heal that area with continuing rest at home as well as keeping her surroundings more quiet and not going anywhere that a lot of stuff is going on. They said to try introducing a trip to the store when we only need a couple of things or going out to eat at a quiet place at first and build up slowly. Sunday we get to go to Taco Bell and the zoo in Marshfield to try another outing. When she gets away from the area she's been used to since she's been here, it gets exhausting for her in a short time.

We will be meeting with UWEC shortly to discuss what we can do this semester online and hopefully return to campus for the second semester. I have to say, with the different campuses that we worked with, UWEC has been the most helpful and accessible of any of them.

Katy has started a blog to put things in her own words.  She's been starting a new blog each day so we're going to get those together so she has one blog page with different posts. I'll continue to keep mine updated with her medical progress and include her own words from her blog. Here is hers from today:

Oh my gosh, I am way too excited. Apparently I am being discharged Tuesday afternoon!! That is the fourteenth and only five days away! I can't wait to be home again! I miss everyone so much!! Especially my family, all my friends, and my wonderful boyfriend Ben! It is so nice that everyone's come to visit, and a special thank you to Ben and Paige for being here so much, we well as Austin and his mom who come once a week. I know Ben does too, and Paige was here for a few days in the beginning - which I am so thankful for. I don't remember it because of my mini case of amnesia.

I also want to thank my mom for all the support. She has been here so much for me. She actually saw the doctors shaking their heads when they saw my MRI or CT and she still stayed so positive for me. She said she wanted to cry but she knew I was too strong-willed NOT to recover.

It's probably going to be a while before I can leave the house. I'm going to try to see if I can work at Subway again, hopefully by easing into being with a lot of people at once. My Wal-Mart trip made me pretty exhausted, but that trip even makes Mom pretty tired.

Also, I am talking to Austin's mom about Austin. He is pretty upset because I found out something and now he thinks I'm upset with him. I just want to state on here that is NOT true. If you think about it, if I hadn't gotten in that car or drove myself, then I wouldn't have been in that accident, meaning that I wouldn't have said that [quite embarrassing] thing to Austin and been so upset with him because I thought he was telling everyone. I mean, technically you have to blame me too because I could have drove I'm sure - I'm not even scared of driving at night like I used to. I probably should have worn my seat belt (I usually do) too. But living in the past doesn't help anything at all. I just don't want him to feel bad, I mean, it was my fault too.

It's so weird not taking naps anymore. I used to be a late sleeper, but now I go to sleep at like 9, wake up around 7:30, and not need naps throughout the day. I wish nap times were at the right time then - like 4ish in the afternoon. Otherwise I don't get good sleep during my therapies.

Another Great Day to Remember

It was a big day for Katy. Her Speech Therapist brought in a folder with a planner and divided tabs. I've never seen her so excited to get anything ever!

Later she had Phys Therapy and they decided it is time she's able to get up and walk without help and without her safety belt. She'll be able to walk on the peds floor whenever she likes and she can go in the bathroom without waiting for help. She was very excited about the freedom.

Tonight we walked over to where I stay and had McDonald's for dinner.

We still hope to be out of here in the next two weeks. Tomorrow she has neuropsych testing to see what she'll be able to do for her continued education this Fall.

Twice today she had a spinning sensation upon lying flat on her back. Otherwise she is feeling really great.

Two...More...Weeks!

We had our weekly meeting with Katy in the room this time. We had a list of questions but every single one of them was addressed before we had to ask. What a great team! Of course Katy's most immediate question was when she can go home. We are shooting for two more weeks. What a blessing that will be! She might even spend her birthday at home on the 17th!!!!

Yesterday when I came in, Katy had a bad burn on her leg from a hot pad that had been heated too long. It was somebody new who hadn't taken care of her yet and it concerned me that she did not feel how much heat there was for a while. 

Katy is doing so well and shows so much appreciation for her healing. We've grown closer and have had some wonderful talks. She knows how many thousands of prayers were made for her, how great the medical staff is and how many people were so positive. Most important of all is her baseline personality, which is pure determination and will. Sure, it gave her minor problems in her life but look what we have now!!! We have Katy here to brighten our days and watch mature and grow into the incredible woman she is destined to be!

She will have her neuro-psych consulting and testing early next week but we already know that she will be home for a while. She will be able to have company but will need to be at home while her vestibular system continues to heal and she regains her decision-making and judgment abilities to full extent. She's got double vision but they said that will heal as well. She alternates an eye patch between eyes when she reads. The doctors said she can't drive or go to concerts for six months while she continues to heal. She will have 3-4 days per week of therapy but we will be able to go to Stanley for that, thankfully.

We will most likely decide to take an online course or two that she will feel confident handling then return to college in the next two semesters.

She will be happy to have visitors at the house. I will be looking for a daybed to put in the living room so she doesn't have to go upstairs in case anybody sees one for sale, it would be most helpful if you'd pass the word along to me. I don't want to spend a whole lot since I'm not working but if there is something reasonable, that would be great. 

Katy's looking forward to seeing people, helping me with cooking and baking and just being comfortable at home! 

We continue to be grateful to everybody for their thoughts and prayers as she continues to heal.

Light at the End of the Tunnel

Katy is now doing so well, we're starting to see the end of her stay here in Marshfield coming up in the next few weeks. She has some neuro & psychology to get through to see where she is and to prepare her for the next steps.

She just gets so much better by the day. As most of you know, she has her computer now and has been on Facebook as well as playing music and games. She can walk really well, do most of her own bathing and getting ready and yesterday had her gastric tube taken out so she's more comfortable. 

She reports problems in her right arm and right leg where she had more damage but we remain grateful that she looks and feels so very well for what she went through.

Katy keeps saying she wants to be a motivational speaker to let people know the dangers out there that she took for granted. We are not sure how this Fall will go; the next 2 or 3 weeks will give us an indication of what we're ready for when we go home. She'll be most likely spending her birthday here but will probably go home soon after!

She has very limited visiting time as she has therapy all day long with a short rest in the middle. If you would like to see about visiting, please message me through Facebook (I'm friends with Katy) or email me.

She gets a little confused still about times and days that haven't been taken so it should come through me.

She is well enough now to be without a 24-hour observer so that was a huge step this week. She'll start Recreational Therapy this week to go along with her other therapies so she'll be even busier.

As for me, I can't wait until we're home again, with the kids, my yard and my own kitchen. Katy's going to help me cook in the kitchen and we'll enjoy the patio as we haven't been able to, being here all summer.

When she is home, she will not be able to go places for a while without me along. She can't drive for 6 months and will need to stick close by until her capacity is back up to 18 years old and she has full capabilities of making sound choices and decisions. She will be able to visit at home though.

A Very Special Guest Blogger Today

As many of you know, they've been letting Katy use a computer for a few times a day to go on Facebook and check in with everybody. She has been coming along amazingly well; I cannot express my gratitude in words that would be worthy of its depth.

She has a goal of August 19th to go home. She came up with that herself and many of the staff say it's good to have a goal. She has them list out what things she needs to accomplish first and she works just as hard as she can to obtain those goals. She is very cooperative with everybody and understands everything they ask will help her.

She told us her eyes are blurry. Once when we were walking, she said it's blurry, and I asked, "Everything?" She said, "Just the things I look at." We both had a great laugh over that one. She actually has double vision still. They have her wear a patch over each eye and switch it but they do say that will correct itself.

She also has pain in her right leg and right arm that is still bothering her but physically she has done so well. She's done remarkably well in her cognitive healing. They have her do math and puzzles and some writing every day. She has been practicing in a book, writing letters to people, until she was able to use the computer and now she's practicing on that. She's also reading a book herself.

We got to walk to Subway together to have dinner. Hopefully soon she won't even need a sitter at night. She probably doesn't now but they have to wait for approval on Monday. On Thursday they usually meet on her case. This Thursday Katy would like to go to the meeting. Hopefully we'll be able to start the neuro therapy this week to begin the process of life afterward.

Here is Katy's first guest blog. I am going to type out exactly what she wrote so when you see that I'm 20, that's her being her charming self. She tells everybody who comes in the room that her mom's 20:

Hello everyone! Thanks for reading my mom's blog :) She is still 20.

I'm aware of everything now, whether it was my mom's really good lemonade, classical music, or The Hunger Games, or a combination of the 3, that I'm aware of everything now. I thought this was a dream, then the past, then the future for a while, but I am convinced myself now that I'm happier here than I was, this is a better life I have created. Ben Deml is really nice AND a great boyfriend.

Sorry that I scared all of you then went into a coma/stupor. Sorry that Austin and I got into an accident. I'm getting a Grand Prix next. I will miss everyone here. Getting popsicles too.

Love, Katy

45 Days - Moving About and Wanting to go Home

Katy wants to get out of here. She is starting to realize that there are goals we need to attain and she is trying harder in her therapies and telling everyone that she is aware now. In PT she unlatched her belt and got up so they put a back secure belt on the chair and told her that safety is one of the goals .

She is walking fairly well with one person supporting and was able to help wash her hair a little yesterday.

She asked to check her Facebook on Sunday so we did that and started to answer some posts but then she started to parrot the posts so I'll wait another few days and try again. We played Yahtzee a little and she's been watching Adventure Time that Paige loaned us and enjoying that. She's trying to read but she says her eyes are blurry so we're getting that checked out.

They are thinking of moving her down in front of the nurse's station again with an alarm bed in case she tries to get up so she doesn't have to have 24-hour observers anymore. That will be nice! 

All the biting is gone and she's not repeating herself anymore, but does repeat her answers to people. Mostly she tells them they are beautiful and saying, "That's good," and less often, "Understandable." Otherwise she talks about her g-tube being removed and going home. She is starting to try and control what she says to people out in the hall. Whew!!! It's nice to see she's aware of it and can refrain from it by herself most of the time. She does take her wheelchair over to the door and waves at everybody she sees.

Her neurologist stopped by and examined her yesterday. Some notes were that her right leg does rest to the right, and she doesn't have as much mobility in her toes. Her right hand also shakes when she reaches for stuff but she doesn't tremble too much anymore when she pushes on her feet. Her right side was where she broke and scraped up her shoulder, had the huge bruise down her leg and the laceration on her head. I can't even think about what she would have gone through that night and I'm so very grateful that she won't remember.

They'll start working on the impulsivity, memory and psychology soon, which is good. Sometimes I don't know what to say when she asks questions. She doesn't seem worried about what she will do this Fall yet but she is still not putting any relevance to time yet. She doesn't remember what her last meal is but she'll ask for chocolate oatmeal every day for breakfast. She talks about whether this is the future or not and asks if she can go back in time and not get into the accident. She also says this is a bad dream and that she will wake up.

Growing up!

Katy greets me in the morning, eats three meals a day, raises and lowers her hospital bed, watches some Adventure Time that Paige was so wonderful to loan her, laughs a lot and talks up a storm. It is really awesome to have nurses or doctors come in who have not seen her for a week, or even a few days, who marvel at the differences. 

However, we still have a long road ahead of us. She gets confused about things, like dressing herself and what she just ate, what she asked about the day before, and some day to day things that get you through life. Looking back on her progression, it's very much like she was starting over; it's like she is going through her first years of life again and learning the very same things, just much faster. Right now she is like a 12- or 13-year-old, without the crankiness.

I do hope and pray that she continues to gain all of her consciousness. School is only several weeks away and even though she is improving so quickly, it's hard to see her getting to that independence she would need. They have been wonderfully though, and we don't have to make a decision until the very end of summer.

This morning she asked me if I would check her Facebook so I will be reading to her all of the posts that everybody has sent since this happened. Thank you for sending them. She will be thrilled. I am sure we will have to do it daily because her short term memory is not all there yet but that's okay!

Cards and Pictures

At the weekly progress meeting for Katy yesterday, the doctors suggested that a great way to show support for Katy while she is in the hospital would be to send a note on a card and a picture of yourself that she could read and recognize. They said it helps her cognitive levels and would be a great addition to her speech therapy. If you would like to, her address here is:

Katrina Baker

Pediatrics

St. Joseph's Children's Hospital

611 St. Joseph's Ave.

Marshfield, WI 54449

Thank you, and thanks for all the cards we have here now!

Eating Solid Foods & Update on Condition

Katy was up in her chair when I came in Monday morning. She smiled and said, "Hi Mom." She had a good night; she had gotten up twice to use the bathroom and slept well. We went outside to the patio and were there a few minutes before she started asking for water. 

We started Katy on some foods and drink Monday. She ate some applesauce, lemon yogurt and butterscotch pudding, and of course, orange juice. We are going to start giving chocolate milk and she'll get to cut down on her tube feedings so eventually we'll be done with that which will make EVERYBODY involved happy.

Katy got to visit with her sisters and grandma Sunday and her dad and brother Monday. 

Katy was confused Monday night. I put blankets on and taken them off at least a thousand times.  Sometimes she wakes up and it seems she feels the dream was reality. Before I had started The Magician's Nephew by C.S. Lewis, I had started reading The Hunger Games by Suzanne Collins to her. She had seen the movie so I thought it might be a good one to read but later on she asked me to make sure her name was taken out of the drawing and I knew exactly what she was talking about. 

As far as TV goes, she's only allowed 10-15 minutes at a time. She really doesn't pay attention that long anyway. I think 5 minutes is tops.

Katy was put on full menu Tuesday! She is doing so well with her eating and drinking. We just have to be careful to go slow. So now she won't have to worry about tube feeding during the day and they'll watch calories so when she's getting enough, they get rid of tube feedings altogether and we can get rid of the stomach tube. Oh happy day!!!

Katy's schedule is such that she eats breakfast as soon as she wakes up, then has a full morning of rehab therapy, rests for a little bit then eats lunch, spends her afternoon with another bout of rehab therapy, rests again then wakes up for dinner. After that she gets a story, maybe 10-15 minutes of TV then goes to bed for the night. She gets extremely tired because even eating takes a long time and everything she does is exhausting. She asks to lie down many times during rehab sessions.

Her general condition now is that physically, she's walking with the help of two people, slowly and a little jerkily, with her right foot turned out. Hopefully that will straighten with time. Her only scars are one under her hair that won't show, and a slight scrape on the shoulder she fractured. I'm sure they will make sure her liver and spleen healed correctly and she's shown no signs of anything contrary. I believe she will just live with the one adrenal gland; I don't think the other one would have healed but we'll find out.

Mentally, she is starting to remember her rehab people that come most often, her family, and a few others who have come to sit with her, as well as pictures of people. She does not remember graduating or her graduation party at my house. She says she knows that she went to UW Marathon this last year.

She knows that she was in an accident from what they have told her but doesn't know the she on the way back to swim at the lake the day of the accident. She knows she has a brain injury. Her humor is very good but she also lost her "sensor" of what is appropriate to say. She does not swear and cuss like most people who go through this injury; instead she counts :-) which I'm sure is no surprise to anybody. Now she has stopped counting for the most part and doesn't bite people anymore. Her bite was involuntary, not in anger. She tells "jokes" to the staff and tells them they're beautiful or wonderful and is very responsive and polite. She asks hundreds of questions.

I know so many people want to visit but for Katy's sake (and we really appreciate the patience of everyone) we still need to keep it to a minimum. She is so busy all day and so exhausted that the other day when she had a visit, she was too tired to eat her dinner, and we are trying so hard to turn that around so she can get out of here. When she does, or is able to handle the rehab and stay a little more energetic, we'll have people down one a day while she eats her dinner. 

Laughing and Walking

After reading that only 10% of severe DAI patients ever wake up, my gratitude has deepened even more. I am blown away and now I see why some of the doctors were so grave when we first got here. I avoided reading too much on it at first and I am glad I did. I would have been horribly worried and that sure wouldn't have helped.

Saturday:

Katy is funny. When I was checking in the mirror she said, "Stop caring how you look. You look good." I asked her what she did in Physical Therapy. She said she took a walk. I asked how many steps and she answered, "applesauce steps," then started laughing. 

Later Saturday afternoon she talked about Nome, Alaska in 1602 then started asking me to play Blue October and End of December or Slipknot and was asking me to look up things on Facebook.

Later she wouldn't stop asking for music but is asking me to play "End of Slipknot." Since she needs a nap I told her after her nap we'll play Slipknot (no screaming though).

Sunday:

Sunday Katy had so many questions. She's also saying things, whatever comes to mind, never mind holding back. She's laughing a lot too. She walked with two of us helping, about 10 feet to the bathroom. She brushed her own hair a few strokes and put on her own lip balm. We also played Candyland with Charlotte. Katy could pick her own cards if I held them in front of her but let me move her guy. 

Katy had kind of a restful day Sunday. She napped some, strolled in the chair once and I read to her a few times from The Magician's Nephew. Good book! Better than the one I'm reading. It seems to put her to sleep but she likes me to read it to her. 

Monday:

Today is like a big day, from her rehab schedule. I think everybody will be pleasantly surprised how she's doing.

Katy was up in her chair when I came in this morning. She smiled and said, "Hi Mom." She had a good night; she had gotten up twice to use the bathroom and slept well. We went outside to the patio and were there a few minutes before she started asking for water. We will finally get to talk with Speech Therapy this morning and they will not get out of here until they write down that she can have water and applesauce. The other ST said she could have these things then the doctors pulled it out from under us because it wasn't written down in the report and Katy, the nurses and I have all been frustrated. They also said they were going to try a tray of different foods this morning to start her diet! That is so exciting for her and because it's a big step in her recovery. The best thing of all is when she is eating well, we can get rid of the leaking stomach tube which she tries to get to all the time.

Sitting and Improved Cognitive Levels

We've seen a big change in the last few days. Katy is talking in meaningful sentences some of the time and asked if I'd take her with me when I go to the store. She also asked if we could go see Grandma and asked if Charlotte could come see her. She is sitting up about 75% on an elbow then needs help the rest of the way.

The last couple of days she has not rested during the day and must do about 200 sit ups a day. We ordered an elbow pad for her because her left elbow was getting pretty red from her sit ups.

I finally broke down and let them talk me into a 7-7 shift. That should keep it the same every day and allow me to get shower and laundry, etc. done at night. Otherwise I'm not even getting 5 hours of sleep. I know it's important to Katy that I am well rested and I'm trying to have the foresight to make sure that happens. It's so easy to go with your instincts and want to help out and be there as much as possible.  They have been asking me a lot lately if I'd like to have a sitter in at 7 every day instead of 11 and I was avoiding it but it's getting a little tough. Thursday evening, during shift change I tried to change her myself and was getting a little frustrated, sniffled and she said, "Mom, are you crying?" Wow. 

Katy has been sleeping better at night, according to her sitters. She doesn't get much sleep during the day so it's nice to still see her resting in the morning. I realize Katy is a "night person" but with the therapy she will have to go through, getting her sleep at night will help her recovery. When she wasn't sleeping at night she was sleeping when they came in for therapy and they can't work with her, meaning we'd be here that much longer.

Yesterday when Jaurdon from Child Life Services came down to see us, as she was leaving, Katy said she would think of her over the weekend. Then Katy said, "Think of me when you're in the bathroom." We started laughing and Katy started laughing too!!!! What a great thing to hear! 

Dear Paige came to sit with her yesterday and Katy asked her to text me to see if she could have some water. It is so awesome that she is calculating like that.

Speaking of calculating, it's disconcerting sometimes to hear her counting over and over again because she can't help it. Hearing her recovery therapy doctor say that she will pass through this phase is keeping me from worrying about it all the time. She does repeat words, put two words together as a different word and puts two words together in a phrase that wouldn't necessarily go together.

At nap time Katy told me she couldn't sleep. I told her she gets medicine later to sleep and she asked me to ask them if she could have some now. Child Life brought in a distraction machine that has a colored bubble tank with fake fish that changes colors.

This morning a little boy named Max is screeching again. He doesn't like to do anything they want him to do. He reminds me of the kids in Walmart who scream when they don't get the toy they want. People come and they go, but Jersey and Max are always here. Hopefully she'll get to go home soon for her sake, and Max will get to go home for our sake.  

Jersey is a little girl from the UP that was hit by a car while riding her bike. Her recovery is very similar and she is such a great little girl. She's been here since early March but might get to go home next week. She has been starting to walk with a walker and is such a trooper. I know everyone here is going to miss her when she gets to leave.

Washing Face and Spanish!

Occupational Therapy had Katy wash her own face a little. 

Speech had her sipping water from a spoon which she loves! She needs to work on her coughing and swallowing but she's getting it….

Speech asked Katy who I was and she said Natalie. When asked what she calls me she said mom. 

Physical Therapy has been taking her to the parallel bars and having her practice shifting her weight but when we had her sitting on the edge of the bed she stood up herself. After PT was done, Katy counted to 150 twice. That came from counting her exercises.

She can't have too much input, such as guests, TV or radio except for 10 minutes once or twice a day. I did put on some Coldplay for her. I'm sure open to suggestions if anybody would like to leave a comment with a band name or two. It just needs to be something kind of mellow like Coldplay.

Everybody said she is doing amazingly great, she is just confused and restless. Dr. M said this will pass as well. She is going through that phase which is common. 

She has been speaking in Spanish as well as English, which is very interesting. 

I have to say that there are some amazing people in this world. If anyone ever wants a worthy cause to donate to, try the Ronald McDonald House Charities. I am floored by the generosity involved, from the volunteers who help organize and watch over the House, the people who donate baby blankets, quilts and time for cleaning public areas of the House to people who donate nightly dinners, such as Wendy's, Domino's Pizza, Subway, Belvedere Supper Club, some local churches and even local families.

Another worthy charity is the Children's Miracle Network. They provide staff at the hospital to help in Pediatrics so kids have a place other than their room to go and play or read or participate in activities.

Reading and Writing

I can't believe today marks a month that we have been in the hospital.

Katy had another great day yesterday. She has started to calm down more of the time, sleep better and have a better sleep/wake pattern, and all her therapies made progress. In her speech therapy she started using her voice a little more instead of whispering but the rest of the day she went back to whispering. She also was able to swallow little spoonfuls of water better than the day before. She is learning to swallow before taking a breath when something is in her mouth.

While that was a blessing, it was really incredible to see her read off a sheet of paper and do some math. Later in our walk, she started repeating, "St. Joseph's," which it took me a little while until I realized she was reading the blue signs in the hospital corridor. Then she started reading them all, "Pediatrics activity," "Outpatient," etc.

PT took her to the parallel bars and helped her shift weight from one leg to another so she can learn to walk again. They also taught her to reach for things.

Later in the day she told us who her brother and sisters are, her mom's name :) and again, her name, address and age. When they asked if she knew she was in Marshfield, she opened her eyes really big but then said, "Thorp." When the Occupational Therapist said she heard Katy likes Math, Katy started listing multiplication tables. Overnight she was saying, "ratios," and talked about, "Robert," so if one of you is Robert from a math class, she was thinking about you!

I did a boo boo. The kid next door was whining very loudly which is a normal thing...you'd have to hear it...and I mumbled "hush that kid up." Katy started repeating it over and over so I was glad she stopped before somebody came back in.

Katy also went outside for the first time in a month. We went to the pediatrics patio and enjoyed a few minutes of the evening with one of the other patients. She enjoyed it for a while then asked to go back in.

Finally, last night she was asking for the nurses. I told her they were in another room with a patient at that time. She said, "I don't care. I'm more important." That's my Katy!

Day 30 - July 10, 2012 Learning to Swallow and More Movement

Katy has had a couple of very restless days. We are trying to put her on a rehab schedule throughout the day but she has a hard time sleeping at night and rolls around. It's really hard to change the schedule of a "night person." Katy was used to working until 1:00 am then staying up, taking a nap and going to school in the morning in Wausau. We just want to make sure she stays as calm and restful as possible when she can so her brain can continue to heal and connect.

She has been agitated and worried about something the last couple of days and repeating that she was afraid to be in trouble. When I asked for what, she replied, "This." To me that meant either she was worried about not showing up for work (she had asked me to drive her to work), or that she was afraid of the expenses of the hospitalization. Besides her worries, she mostly repeats what she hears and says things over and over for a while. She seems to remember people which is so, so great. 

Last evening, she told me she had to explain something to me and said she had a giraffe tattoo. She kept saying she had to explain. I told her that I did indeed know about it now and that all that was important was for her to get better and know that I love her, no matter what…and that she's not in trouble for anything. "Besides," I said, "it's a cute giraffe." It took a while but she finally let that go. If anybody decides to get a tattoo, please, please make sure your parents know. When she had to get an MRI when she got here, I told them there was no tattoo. If it had been made with certain inks, it could have burned her badly.

She has been asking for a drink of water since she could whisper but they want to make sure she can swallow. We tested yesterday morning and she took the first spoonful okay but the second and third made her cough. Hopefully this morning she'll do better and she can work her way off the feeding tube. The cap leaks a lot and is a lot of trouble for the nurses. It's supposed to stay on for 6 weeks before she gets a different one but I'm hoping she starts improving enough that she doesn't even need it soon.

She gets daily visits from Occupational Therapy, Physical Therapy, Speech and Cognitive Therapy and Music Therapy. OT works on making sure her left arm is able to stretch out and that is starting to improve. Her left leg is working just fine now and she can roll to her right and her left, all the way over. PT works with helping her learn to stand and walk again. She's been standing up for 10 seconds and in the standing machine for 10 minutes. It wipes her out. ST works on her swallowing, eating, memory and speech. Right now, we are working on the speech and swallowing. MT comes around once a day and plays really nice guitar music for her. It's very relaxing. We've stopped Respiratory Therapy once again and keep an ear to her lungs. She will only get it as needed. It really bothered her.

Day 28 - July 8, 2012 Two Steps

Katy's personality shows through more every day. She's been saying, "Mom, you should..." already. I'm so familiar with that phrase! Some of the cuter things she's said are, "Mom please drive me to work," "I did so much today," (after her physical therapy this morning), and the best, "Please take out my braids." Well, we tried that for a day but it didn't work so they're back in today. She hasn't complained.

She is also standing with PT just for a short time and taking two steps to get from bed to chair and back. It takes a lot out of her but starting Monday she might be officially in Rehab, which means more focus is on getting her to get back her strength, voice, etc. and live her life.

She keeps asking for a drink of water but they want to make sure her biting is under control and she can swallow well enough to handle drinking. Tomorrow the Speech Therapist is going to review that.

Day 26 - July 6, 2012 - A Glorious Day

Well, it started out when the chaplains came in to say hi; they told Katy that she had pretty hair and she whispered, "Thank you." She followed that with "okay." Right then, Marilyn the speech therapist, came in and worked with her. She asked her name and she said, "Katrina." Are you called, "Katrina?" She answered, "Katy." Where do you go to school: "Thorp." What grade are you in?: "I'm a Senior." After the next question, she kept saying, "I have to go first." She's whispering a lot so it's hard to understand, but thank God, we are all so excited here and I am so very grateful. 

So far at noon she's also said she wants a drink, which we have to wait for speech therapy again, and something about wanting to sit somewhere which I couldn't understand, then something about her giraffe.

She's also wearing her own shorts and t-shirt today.

Day 25 - July 5, 2012

Katy had another CT scan to make sure there wasn't more swelling or fluid but it turned out good. Her neurologist said she doesn't have to have another one until the end of her hospitalization.

We didn't get to escape in the wheelchair yesterday because I guess the doctors have to write an order for it so I asked them last night to please do that. Katy seemed to really like our trips the day before.

She is wiggling around so much that she almost worked herself out of the bed so we adjusted the footboard so she can push herself up. I asked her to do that several times and she did and learned to keep herself from sliding down that way.

She is getting frustrated sometimes. I'm sure it must be because she wants to communicate and hasn't quite figured that out yet. But I am sure she will.

The First Weeks of Recovery

Day 2: Katy was on a lot of machines and monitors her first week.

Day 4: She moved her eyes under her lids and squeezed my hand. She grimaced for one of her caregivers.

Day 5: Her breathing machine was put on "auto" which means it only takes over when she doesn't start her own breath in so many seconds. She was put on intermittent pain medicine for when she showed she was in pain.

Day 6: She was taking just about 100% of her own breaths. She is visibly stressed when fussed with and her blood pressure and heart rate went up when I was on a phone call about the accident.

Day 8: Much of the water she was retaining finally started to go away. She gained the equivalency of 4-1/2 2-litre bottles in water so it was hard to see her knuckles. Heather, one of her nurses, washed and combed her hair for 5 hours. There was grass, twigs, blood and vomit in her hair. Kelsey braided it in cute French braids.

Day 9: Katy got a feeding tube in her stomach today and took the tube out of her nose. She also reached her baseline weight. Today when I walked into the room and said her name and touched her arm, she opened her eyes. She looked to the side but didn't focus on me.


Day 10: Katy was conscious and awake most of the day. She was giving thumbs up and would hold fingers up but not the right quantity. She became pretty agitated and looked very uncomfortable so they gave her methadone for withdrawals. 


They took her breathing tube out. She was able to swallow and cough but sure had a lot of fluid in her throat. Her left lung had been getting a little stuff in it so they have been working on that with resp therapy.

All her numbers are looking great.

Day 11: This morning Katy was awake when I came in. She did a thumbs up and held up two fingers. Her arterial port was removed. At 3:00 pm Katy's been sleeping well most of the day. We are all glad because she needed the rest.

Day 12: Last night's night nurse Sharon said she asked Katy if she had pain and she said throat.  She was also looking at the things I held in front of her, like her giraffe and balls.

Day 13: Sharon washed her hair last night. Kelsey is braiding it up again today. Dr. Fernandez took off the nose canula which she kept trying to take off all the time.  Her muscles are a little stiff and taut. Dr. Fernandez said she can probably go on the floor tomorrow. He liked the way things are going. 

Katy has orders to sit up 3 times a day now.

Day 14: Katy got to move to the Pediatrics floor today but she's still under strict limitation of input. It's a nice single room with a bathroom and a built-in couch to lie on if I need to. I can even stay if I want to. She is swallowing much better and doesn't have problems breathing today but has a fever of 101.2. They gave her some Tylenol for the fever. RT is combining her treatments to every four hours. They're going to take some test samples to see if they can figure out why she's getting a fever.

Day 15: She is breathing better this morning but still has a little fever. No word yet what it's from. She had a CT and we're waiting to see what it shows. He said more fluid but it didn't necessarily mean anything.

Day 16: Katy still has a fever but has been opening her eyes today and she is more relaxed in her bpms. She's had her eyes open quite a bit today. When I asked her for a thumbs up, she'd put her thumb inside her fingers and hold it down. Twice. She had ultrasound on her legs to make sure there are no clots.

Her fever is down to 99 this afternoon. She's opened her eyes a lot today and said something like "ch ch ch ch ch"

Day 17: Katy had more CTs to see if they can find the cause of her fevers. After her CTs she went down to 99 again and is resting well. Good blood pressure reading after too. 

Day 18: Gloria made Katy an elbow to wrist brace but she's been breaking it open. Her fever is under control so she is awake more now, but no recognition. She clenched her teeth and snarled at Austin when he visited but she's starting to do that and pinch and dig her fingernails in. That is normal and just a phase they go through. She is getting Afrin spray but doesn't like that at all!

Day 19: We're moving again to a room with ceiling hoist for when she is ready to start going out in a wheel chair. This morning was pretty hard, such a stressful day yesterday then this morning I missed my Katy so much, seeing her picture with her friend in a photo booth, making her silly faces. A little after that she looked at me and followed me and that helped quite a bit.

Day 20: Katy's been awake all morning. She looked at her ducky that I bought yesterday. She's been looking at me. She seems to look at something then stare so when you move it, she doesn't follow it today.

Katy's made noise twice today during sighs.

She tried to eat her cottonball today.

Day 21: Quiet Sunday for people coming in to work on Katy but she is trying to talk. She'll breathe in really deep and say "huuuh" when I ask her to say Hi. She's also pushing off her right leg so she turns to her left.

Day 22: I can't believe it's been three weeks now. PT sat Katy up for a while and worked with her, trying to get her to hold her head up. Afterward they put her in the bed-chair and sat her up for 45 minutes. 

Katy's licking her lips now and keeping them clean herself.

Day 23: Katy did not sleep well last night. Since she's moving so much, she is going to have an observer at all times.

Katy got her reclining wheelchair and sling so when she was up we went for a walk. It put her to sleep.

Day 24: Katy and I went for a walk in her wheelchair. We went in the elevator to the first floor and went all the way around, cruised around the coffee shop then looked at the pictures of the history of the hospital. We also went into the chapel, said a prayer of thanks and back up to look at the fish in this ward. Then we went to our room again and she watched 10 minutes of Happy Feet II.

We went for a second walk and she stayed awake. We went to Subway downstairs and she looked at the menus. Then we went to the teen room and I threw baskets while she looked out the window then I played War cards with her while she watched. She's been in her chair a lot today and is really getting her head under control so she can hold it however she wants.

DAI

The accident Katy was in caused one adrenal gland to crush, a split liver and spleen, broken scapular bone, pelvic bone and two vertebrae, none of which required surgery. The worst part though, is she has suffered a Diffuse Axonal Injury to her brain, including her brain stem, which can be very devastating. Instead of trying to explain DAI, here is a link that has a lot of information about it:

Traumatic Brain Injury A to Z


After seeing the MRI results, there was a lot of head shaking by physicians. It was a very frightening first few days in the ICU.

An Introduction to Katy Rose Baker

If you know Katy well, you know her for her strong will, tenacity, independence, goal orientation and a personality so full of life you can feel when she's near.

She would brighten your day if you'd let her. Some people didn't get it, but so many people do. On a recent trip, Katy told me, "Mom, I love everybody. I know it doesn't seem that way sometimes but I love everybody!!!"

When Katy is asked what the perfect career would be she says if she could get paid to study, that would be it. She loves school, at least when she is given the freedom to learn. She is one person away from the youngest in her class but she should have been at least two grades ahead. She begged me to change to a different school, and looking back, knowing what I now know, I wish I could have found one of the schools that give more credit for the advanced courses that she did so well in.

Katy is a straight-A student. The only mar in her grades was a B+ one semester by a gym teacher. Physical activity is important and I appreciate that we have gym class but it should never, ever count as a grade. Neither should art or music. I won't go on about the system except to say that it cost a whole lot of money for one B+ and it stinks.

Wanting to become a neuro-spinal surgeon, Katy has taken academic courses throughout high school and attended a ten-day Youth Leadership Forum on Medicine by collecting donations from people, groups and businesses in town, which I matched. She also attended UWMC her high school senior year under the state's Youth Options program and earned 24 college credits before her freshman year even starts. She was accepted into UW Madison with an honors housing scholarship but has decided to stay closer to home the first year or two and is attending UW Eau Claire in their honors program.

Her second love is Accounting, which I think she secretly loves most. Whatever Katy decides to do, I hope she loves every day of it.