Back to Macaroni and Cheese!

On Saturday it was determined that Caitlin has regained her swallowing reflex enough to eat food. It has taken a lot of practice with water on a spoon to get Caitlin to open her mouth wide enough to get the water in and subsequently swallow it in a timely fashion. Now the mission is to increase her nutrient intake orally with the goal of getting the feeding tube out of her nose. Lo and behold this means eating hospital food. If anyone remembers when Caitlin was in rehab the first time this was a never ending battle...she really doesn't like hospital food. We were bringing in food on a daily basis just so she would eat. The only thing she was willing to order off the hospital menu was macaroni and cheese. Even at that she really didn't eat very much of it. For today we celebrated that she ate 10 tiny bites. The nurses said that was great for her first day of eating. We tried a Wendy's frosty too...about 6 tiny bites! So we are on that slow and steady road in a new direction as of today!
I have been reading to Caitlin quite a bit to keep her relaxed and calm. She closes her eyes to listen but if I stop the eyes pop open and she gives me the authoritative point to continue. Of course I follow her directions just fine and appreciate the calm bonding time for me as she gets her much needed rest for recovery.

A Busy Weekend!

Lots of company, lots of laughter, and today lots of sleep! Caitlin had a great time visiting with aunts,uncles, and cousins from out of town as well as all of us in town. It was nice to have both sides of Caitlin's family reconnect or meet each other. At one point there were eleven of us piled into Caitlin's room and we definitely were not quiet. We were amazed at how well Caitlin dealt with all the conversation swirling around her. Stroke patients are supposed to have quiet and direct conversations so that they can follow what is going on. Caitlin was right in the middle of things and seemed to be doing just fine.
On the flip side of fun Caitlin was also a bit miserable due to the fact that she had to have a new NG feeding tube because the other one got clogged. Not a fun ordeal at all. Luckily Aunt Terry was there with her until 4:00 in the morning so she wasn't alone for that procedure. Then last night she had to have a new catheter inserted because the other one was leaking. Again in the middle of the night. This procedure she had to tough out on her own.
Going to the hospital in the morning is always a process of taking a deep breath before learning what else has happened to my sweet Caitlin. Not being able to communicate what is bothering her was a bit difficult this weekend so today I decided I would draw a picture of a girl and each time Caitlin was upset or fussing I asked her to show me where the problem was on the drawing. It actually worked to quickly eliminate a problem the two times I used it. So I have been investigating a simple communication board to use until Caitlin has more language. She has been using her fingers as a yes or no. To make life fun and interesting her uncle Brian told her to use both her yes and no fingers at the same time with her therapist to confuse her. Guess who didn't forget the teasing and laughed today as she used the two fingers in response to a question! As always we are surrounded and blessed by so many loving people in our lives.

Preparing for Thanksgiving!

Caitlin is ready for Thanksgiving! She had her first shower today...after two weeks of sponge baths just imagine how good that felt! Did you know that they make wheelchairs that can get completely wet? It was quite a process but Caitlin stayed strong during the whole shower. She looks sparkly clean and ready for her company tomorrow. Her walls are not only decorated with Manogue and McQ banners but also with a three foot tall turkey that her colleagues from Sierra Eye Associates made. They are just an amazing bunch of people. They each took a turkey feather and decorated it for Caitlin with love notes and pictures. The turkey will be a big hit tomorrow as the relatives arrive in town! Caitlin got a new much more comfortable bed today. It has a greater amount of air flow through the mattress to keep her dry, not sweaty, and comfy. So she will definitely look like a princess lying there to greet her visitors.
We are so very, very thankful for the love everyone shows us each day. Enjoy your holiday with family and friends!

An emotional day comes to an end!

The hardest part of having been in the hospital for a month now is knowing how many times all the doctors involved with Caitlin have differing opinions. I get so frustrated because I want one answer that makes sense. Weighing differing opinions and making decisions sometimes becomes too much for a parent! Caitlin is taking a maintainance dose of Dilantin (300mg) to prevent another seizure. Today a new neurologist said that the level of this drug was low as shown in a blood test. It was at the same level as last week when we were told it was okay. The neurologist said she had to have what was called a Dilantin push (800 mg) throughout the day to get this level up. I was not happy with adding any more meds to her body. So of course I asked questions of her doctors and got different opinions. Then I was told that I could refuse treatment. Since I was told this wouldn't hurt Caitlin by one doctor who disagreed with the treatment I decided to say okay. How could I say no to the neurologist's statement that if we didn't do this she could have a seizure again. I have learned that medicine is not a well defined science as I thought it was. If it was then all the doctors would have the same protocol for treatment.
We would all agree Caitlin had good parts to her day today. The PT had her sitting on the edge of the bed. He told her they had tricked her because she thought they were helping her when actually she was doing it herself. Of course she laughed at this bit of information. I think Caitlin was genuinely surprised at herself!
Off and on throughout the day Caitlin expressed her frustration with things by crying and grumbling. I think she is scared at times and other times I think she is so very frustrated. I just can't begin to understand how it would feel to lay in bed and not be able to do for myself physically or verbally.
Thank goodness tomorrow is always another day to start over! We are having relatives from both sides of Caitlin's family visiting over the Thanksgiving weekend. It will be fun for her to see everyone! Difficult in that she still is unable to eat and I am sure would much prefer cranberry sauce over the feeding tube formula!

Caitlin's "McDreamy" Dad!

We are constantly teasing Caitlin about her smiles for one particular doctor. Today Caitlin was fussing and Tim, Caitlin's dad, starting posing as a muscular "Mc Dreamy" by pulling up on his sweatshirt sleeves for big muscles and said, "Now if I was a McDreamy you wouldn't be doing that!" Caitlin just burst out laughing and couldn't stop. Next in walked, David Zucker, her pediatrician from birth through college days, and I said that he probably wouldn't get that smile that another doctor gets...but he did. His comment was that old farts weren't so bad. Caitlin once again had a great laugh. It is so nice to hear that laugh and see her eyes tear up as they always have when she laughs so hard!

A milestone today was that Caitlin's lungs are clear on two different chest X-rays so she was taken off a large dose of antibiotics. The splint to relax her left hand no longer needs to be worn. Her left hand is moving up and down and somewhat from side to side. She is moving her fingers on this hand very gracefully as if she could play the piano. That index finger on her left hand was used today to let me know that she wanted some water. Caitlin has been taking water from a spoon and today we did this five or six different times. That is a huge accomplishment!

We are calling all you McQueen Lancers to start cheering for Friday's game against Manogue. Caitlin's aunt brought a few Manogue decorations for her hospital room. I think we need to balance that out! Caitlin's cousin plays for Manogue so Aunt Debbie thinks that Caitlin can be converted! We are laughing about the upcoming antics of this week. Mal and Caitlin are making some McQ posters on Wednesday! Never know what will occur in room 448 of St. Mary's Hospital!!!!!

Cute Male Medical Professionals!

So today we saw huge smiles from Miss Caitlin! Only for cute young male medical professionals...I even thought Caitlin was blushing tonight as Chris, her nurse, asked if he could listen to her heart...I think it was beating fast! She apparently had a similar experience with her PT today which I didn't see. Last night Caitlin couldn't sleep so I went back to the hospital at 1:30 in the morning to calm her down. We both fell asleep after I had been there 10 minutes and the rest of the night was fine. Thank goodness I can sleep just about anywhere with no problem. We slept in until 7:30...later than I ever do!
In addition to amazing smiles and laughter, Caitlin moved all the fingers on her left hand in a big wave good-bye to Anna, her daytime nurse. Teresa, the nursing assistant, caught the wave and started dancing and celebrating for Caitlin. It was a fun day with visitors throughout the day. Fatima, who Caitlin worked with at Sierra Eye Associates, has forwarded this blog on to her family in Mexico. Caitlin has met some of Fatima's family and was looking forward to going to visit them in Mexico and work on improving her Spanish! So prayers and positive energy are coming at Caitlin from every direction. It is just GREAT! Muchas Gracias!

Just a GREAT day!

Trying to keep this short is difficult because I want Caitlin to feel your cheers with each thing she accomplishes. Today Michael was taking pictures with Caitlin on his phone and lo and behold he was able to post Caitlin's photo from today on this blog. I have no idea how he did this but isn't it wonderful to see Caitlin's smile!
Caitlin has to be turned in bed every two hours and really doesn't much care for it. I was helping to do this and she was moaning and groaning. I decided to moan in unison with her and she just burst out laughing! Then as she was moaning again I told her to tell the nurses, "I don't like it!". She mumbled it and the nurses both jumped for joy and as they heard her. They are the witnesses and swear to it!
The communication therapist had a student intern with her today. Caitlin gets overwhelmed with too many strangers entering her room and she was upset. I told Caitlin that Elise, the intern, was going to be her student today. At the end of the therapy session I asked Elise what she learned from Caitlin, the master teacher. Caitlin just burst out laughing and had the biggest smile on her face.
With PT Caitlin sat in a chair which is somewhat of a recliner. She was surrounded by her dad, sisters, step mom, and me. We looked like the queen with her court hovering around. Two different doctors walked in within five minutes of each other. We won't say which doctor got the big smile from Caitlin but we sure did joke about it afterwards!
Hopefully Caitlin will sleep peacefully tonight. It is difficult for her to fall asleep. Her dad and Aunt Christine stay late into the night to keep Caitlin calm and wait until she finally crashes around 1:00 in the morning. The early morning shift is mine. Today when I got to the hospital, Caitlin cried a bit, gave me a good look, and then crashed for a few hours. Monday, the 24th, will make it a month that Caitlin has been in the hospital. So much has happened and so much more needs to occur! Patience is truly the greatest virtue in our lives right now!

Smiles All Day Long!

Thursday evening Caitlin officially smiled thanks to Aunt Debbie #1 and cousing Keith Fuetsch. Caitlin so enjoys the conversations between Aunt Debbie and Keith about how Aunt Debbie "hovers like a helicopter" over Keith's activities. Keith is 18, a senior in high school, and just a great guy. His mother always knows what he is doing and with who. There is much laughter surrounding this part of Keith and Debbie's relationship. Caitlin got the biggest kick out of them last night just as she always does. Smiles were repeated for Caitlin's dad, Aunt Christine, and Uncle George. It was a for sure!
Today was a great PT session, even sitting up in a chair for 30 minutes (tied in for support). OT (Occupational Therapy) was also great in that Caitlin was able to relax her hands and arms. The hand splints are really helping. CT (Communication Therapy) was some more swallowing, a bit of Yes and No testing. We now are using the pointer finger for yes and the pinkie for no. It is working fairly well except when Caitlin is worn out from all the practicing.
Two longtime friends, Mal and Kelly, spent some time with Caitlin this afternoon. They had the best visit full of smiles and celebration during Caitlin's OT session. It was so great to walk back in the room while the ladies were visiting and making plans for the Christmas holiday. Having something to look forward to is really important!
When Michael came to visit Caitlin today she had a lot to tell him. She cried in relief that he was there. Conversations were buzzing around her in respect to her moving out of ICU and various doctors' opinions about her treatment. I think she knows that Michael will protect her from her fears. As sad as it is to see Caitlin cry it is wonderful in that it is always so appropriate!
The biggest smiles were on all of our faces as we moved Caitlin out of ICU today. She is now in room 448 of Saint Mary's Hospital. We are not sure how long she will stay on this floor but for today it was a giant step in her recovery. There also was an underlying sadness for Caitlin and all of us because she had such incredible care in the ICU. The nurses showered Caitlin with excellent care and a tremendous amount of compassion. It is with tremendous gratitude to all the nurses ,doctors, therapists, and hospital staff involved in Caitlin's care that we move excitedly into a new phase of her recovery.

Great Physical Therapy Session

Today Caitlin had a great workout in physical therapy. The PT was able to get Caitlin to relax and really stretched her muscles. He said that when she was relaxed she had great flexibility and tone. It was the first day where she was relaxed and not tremoring during therapy. It was also the first day that she didn't sweat buckets and tremor all day long. As of today she also has splints to wear on her hands to stretch them out and relax them. I think they were the cause of her relaxed day as well. She didn't like some of the things the therapist was making her do and he swears she said a loud NO! That would be Caitlin!
I read messages to her from this blog today. When I read her LaNiece's she started crying. All her friends mean so much to her! I asked her if she wanted me to read more and she lifted that finger to say yes. Caitlin's eyes were wide open and she was intently staring at the computer as I read. It was just GREAT to see her like this!
Caitlin has gotten many cards and letters which we read to her each day. I know one day soon we will see that smile on her face as we read a card or email to Caitlin. As Mal says keep on keepin on! Thanks for all the love and support sent Caitlin's way!

Maybe just maybe...

Today, Caitlin's friend since high school, Stephanie Rock, came for the day from Boise to visit. Stephanie and Caitlin share many fond memories. One included singing a New Kids on the Block song in their high school talent show. Stephanie went to a concert by the New Kids on the Block recently and videotaped part of the concert for Caitlin. Today as she was showing it to Caitlin on her computer I could swear there was a very tiny bit of a smile. Then when Stephanie was leaving she told Caitlin she loved her. Two grumbles came out of Caitlin's mouth and I really thought she said, "love you"! Of course it may not be so but maybe just maybe it is!

Many Small Steps are so HUGE

As Caitlin's mom I feel just as I did when she was younger. Clapping and cheering about every little thing she did. I am rediscovering that sense of joy! Today, I was able to feed Caitlin about six bites of orange sherbet and she was able to mush them around in her mouth and swallow. Watching her neck muscles move was a definite celebration. Caitlin has a very small feeding tube that goes in her nose, down her esophagus to her stomach. It does not really interfere with her swallowing. Each day she is monitored for her swallowing reflex. So today it was a huge accomplishment worthy of celebration. She is probably thinking that I have really lost it as I am clapping and cheering her on. Caitlin was also able to stick out her tongue as far as her lips. This again is huge! With her first stroke Caitlin's right side was limp and very weak. After the second stroke her right arm is very, tense and bends into her chest. After some therapy today she was more relaxed and squeezed the therapist with her right hand. Her lungs are now functioning just fine. Caitlin mumbles and groans when she doesn't like something. I like to hear that because it reminds me that she is aware of everything that is going on and of course she still has an opinion to express. When in the rehab unit Caitlin didn't like the hospital water. Yesterday I was drinking bottled water and she looked at me with bright eyes. I asked if she wanted to share that bottle of water. She just kept watching me as I poured some of the water into a cup and got one of her sponge sticks (looks like a lollipop) to give her some water. She willingly opened her mouth and liked the water!!! So of course I will be bringing bottled water to the hospital everyday. It truly was an inspirational day!

Give me the finger!

Today we discovered the power of Caitlin being able to point the index finger of her left hand. She can wag it side to side to say hello or good-bye! She can also be asked questions and point that finger if the answer is yes. We even had a little index finger war to replace the old thumb wars of days long ago!
Caitlin and I spent much of today together and after she had physical therapy we both fell asleep. The theory of stroke recovery is therapy followed by a rest. Watching her therapy exhausted me! I woke us both up with a big head thrown back startle and snort! Caitlin looked over at me with a typical Caitlin stare. I am still able to embarass her as every mother should embarrass her child even if they are an adult!
Thanks to Mal for searching Caitlin's my space for photos of her friends and family. Of course every photo reminds me of the richness of family and friends in Caitlin's life. I know she feels the strength from everyone of you! If you send her messages on this sight then I will be able to read them to her in the hospital! I know that will make her very, very happy!

November 16, 2008

As so many of you know Caitlin had one stroke in her sleep the night of October 26th. This stroke was in the left side of her brain impacting her motor functions of her right side and then also her speech. Four days after her stroke she was in acute rehabilitation and making gains on a daily basis. On November 8th Caitlin had a seizure which put her back in intensive care where she remains today. It was determined that not only did she have a seizure but she also had another stroke which was on the right side of her brain. Essentially, Caitlin had no ability to move either side of her body and no ability to communicate. She struggled with her breathing after asperating some fluid into her lungs. There still is no known cause for either stroke after just about every test and blood test the doctors could think of as they search for an answer to this puzzling situation. An EEG was administered and all her brain wave function was stable and fine.
On Friday, November 14th, we turned the corner. Caitlin was finally beginning to wake up. Each day we have seen babysteps. Friday Caitlin was beginning to turn her head to see people on either side of her. She was responding well to familiar voices. She also was able to squeeze and release with her left hand. On Saturday I was able to feed her ice chips under the careful supervision of the speech therapist. Her swallowing reflex was beginning to emerge. I also read from a poster her co-workers at Sierra Eye Associates had made for her. Each person she works with signed the poster with loving thoughts. She cried as I read the wonderful notes to her. Of course, I had to cry with her. Caitlin is loved by so many people. I know she was tearful because she would rather be at work doing all the tasks that people are missing her doing. Today she was able to point with a finger on the left hand when asked to do so. The beginnings of communication!!! Each day there is just one more sign that she is making babysteps toward recovery. What we thought were babysteps after the first stroke are now being looked at as huge, giant steps.
Right now we all want to spend time with Caitlin. But, the best method in stroke recovery is therapy and sleep with limited stimulation around the stroke victim. This is difficult for me in that I want her to know how loved and supported she is by so many, many people. I relay messages that I receive and read cards to her that she has gotten in the mail. Once she gets back up to the rehab unit in the hospital we will be able to hang these up in her room and surround her with all the loving thoughts people have sent. Please continue to send those thoughts her way until she is able to have visitors. Your positive thoughts and prayers are greatly appreciated. We want to see that beautiful smile again!