Farewell my dear Friend.
Brittany lost her courageous battle tonight surrounded by her parents and grandparents.
Our Beautiful Brittany
Saturday, April 18, 2009
Friday, April 17, 2009
Great Sadness
It is with great sadness that I write this post. I have been having to get up the courage to type. When I left Duke on Tuesday afternoon, Brit wasn't doing so well. Her CO2 levels were climbing and she was on a lot of assist from the ventilator. The doctors were trying to get her levels to come down, but things were not looking good.
Things had seemed so hopeful on Sunday. We had such a great time and she was excited to be moving down to the step down floor, but I guess her body had different thoughts. It has been working so hard and I think the time has come that it has just given up, even though Brit's mind hasn't.
The team called Brad and asked him to come back out to Duke. They were sorry to say that they weren't going to be able to proceed with the transplant. Her body just wouldn't take the surgery and as we all know, lungs are precious.
Brit's parents have a very painful decision to make and I don't think it is without great thought that they have decided to make Brittany as comfortable as possible and have taken her off all the other multitudes of medications she was on.
My thoughts and prayers are with the entire family and I wish them all the comfort in knowing we all care about them and Brittany. Rest easy, as I know this is the toughest decision you will ever make. Love Always and Forever
Things had seemed so hopeful on Sunday. We had such a great time and she was excited to be moving down to the step down floor, but I guess her body had different thoughts. It has been working so hard and I think the time has come that it has just given up, even though Brit's mind hasn't.
The team called Brad and asked him to come back out to Duke. They were sorry to say that they weren't going to be able to proceed with the transplant. Her body just wouldn't take the surgery and as we all know, lungs are precious.
Brit's parents have a very painful decision to make and I don't think it is without great thought that they have decided to make Brittany as comfortable as possible and have taken her off all the other multitudes of medications she was on.
My thoughts and prayers are with the entire family and I wish them all the comfort in knowing we all care about them and Brittany. Rest easy, as I know this is the toughest decision you will ever make. Love Always and Forever
Sunday, April 12, 2009
Step Down Bound!
What an awesome Easter Day! Brittany was able to get out of bed and sit in a very large recliner. Her physical therapist, Beth, coaxed her to also take about a 75ft walk as well. It was so inspiring. As Brittany slowly walked down the hall in the ICU, she had families of patients cheering her on as she walked by their rooms. Our girl certainly created quite a stir in the MICU unit 8200!
Her amazing efforts required a tiny bit of naughtiness. I actually asked for a cup of ice and slyly put a few of her swab sponges in it knowing full well that it was the ice chips she wanted and deserved! She hasn't had her swallow test yet and many of you know she has been sneaking sips of water and sprite.
She has been doing very well on the ventilator and has been doing all the work herself. She was pretty tired after her stroll, and fell asleep in her recliner. I luckily got to sit in her room with her and make sure she didn't tip out of her chair. It reminded me of sitting in Seattle and watching over her. Her physical therapist came back in and she stood up and got herself with a little help back into bed and was able to take a great session of CPT.
Carl and Glenda, her grandparents made the 4 day trek from Hamilton MT to be with Brittany and were there in time to take the afternoon visiting hours shift. Brittany was all smiles and they all got a good visit in, before she needed a little nap. Her nurse Colette allowed us to stay during the hour when the nurses do their shift change, which was really nice of her, as most everyone else has to leave and come back at 8pm. Brittany has charmed all her nurses because they all seem to bend the rules a bit when it comes to her!
Tomorrow will hopefully be the day to go back down to the step down floor! Keep your fingers crossed!
Her amazing efforts required a tiny bit of naughtiness. I actually asked for a cup of ice and slyly put a few of her swab sponges in it knowing full well that it was the ice chips she wanted and deserved! She hasn't had her swallow test yet and many of you know she has been sneaking sips of water and sprite.
She has been doing very well on the ventilator and has been doing all the work herself. She was pretty tired after her stroll, and fell asleep in her recliner. I luckily got to sit in her room with her and make sure she didn't tip out of her chair. It reminded me of sitting in Seattle and watching over her. Her physical therapist came back in and she stood up and got herself with a little help back into bed and was able to take a great session of CPT.
Carl and Glenda, her grandparents made the 4 day trek from Hamilton MT to be with Brittany and were there in time to take the afternoon visiting hours shift. Brittany was all smiles and they all got a good visit in, before she needed a little nap. Her nurse Colette allowed us to stay during the hour when the nurses do their shift change, which was really nice of her, as most everyone else has to leave and come back at 8pm. Brittany has charmed all her nurses because they all seem to bend the rules a bit when it comes to her!
Tomorrow will hopefully be the day to go back down to the step down floor! Keep your fingers crossed!
Saturday, April 11, 2009
Walking on Clouds
Brit was able to have a little fun yesterday. She finally got rid of her blasting headache and was able to sit up and put her legs over the bed. She was up and awake for most of the afternoon. She is so ready to go back downstairs and get out of the ICU. What we just found out is that they don't transfer patients on the weekend, so we will have to hang out a few days longer upstairs.
Brit was laughing and joking around and even snuck a little sip of sprite and requested a cherry Dr. Pepper which Greg couldn't locate. I'm not sure she is supposed to drink too much, but a little sip can't hurt, right? I knew she was beginning to get some of her spirit back when the nurse let her know she had a shot waiting for her and she gave her the Brittany stare. She's having to take her shots like a woman, as they don't have sub-q catheters here and they hadn't even really seen one. She's so good at getting them, although she was getting to be such a pro at giving them to herself with the catheter.
She's doing good again this morning and afternoon. She was able to get a really good CPT treatment in and wants to watch the movie "Little Nicky" after the quiet time break. I think it was fun for her nurses yesterday to see Brittany smiling and joking around. They are able to get a glimpse of what the rest of us know and love about her. I know when I left the hospital last night, it was like I was walking on clouds. Here's to many more good days to come!
Brit was laughing and joking around and even snuck a little sip of sprite and requested a cherry Dr. Pepper which Greg couldn't locate. I'm not sure she is supposed to drink too much, but a little sip can't hurt, right? I knew she was beginning to get some of her spirit back when the nurse let her know she had a shot waiting for her and she gave her the Brittany stare. She's having to take her shots like a woman, as they don't have sub-q catheters here and they hadn't even really seen one. She's so good at getting them, although she was getting to be such a pro at giving them to herself with the catheter.
She's doing good again this morning and afternoon. She was able to get a really good CPT treatment in and wants to watch the movie "Little Nicky" after the quiet time break. I think it was fun for her nurses yesterday to see Brittany smiling and joking around. They are able to get a glimpse of what the rest of us know and love about her. I know when I left the hospital last night, it was like I was walking on clouds. Here's to many more good days to come!
Wednesday, April 8, 2009
Charming Smile
The day started with a loud knock at the door and me jumping out of bed and walking smack into the wall. I started laughing and the guy delivering my room service probably thought I was crazy. I got a pretty big smile out of Brittany when I recounted my morning to her. Boy was I excited to see her smile today.
Today was a little rough for our girl. Her CO2 levels were a bit high today, which makes her pretty sleepy. The nurses and doctors worked most of the day to get her levels back down to her baseline level before I had to leave tonight. She was alert and we chatted about Shorty (my corgi, who absolutely adores Brit!) She was pretty mad that she slept most of the day and didn't get to any physical therapy. I know I might sound like a broken record, but it is so moving how determined she is to get on the transplant list.
Her nurse tonight told me she was soon going to be working on the transplant team. I was excited to start picking her brain on all the things we need to work on. She really wants Brittany to be one of the first patients she will get to work with on transplant. It really made me happy to know she had another nurse who was as caring as the nurses she had out at Children's. Anyone who works with Brit immediately sees her sparkle and charm and can't not like her!
Today was a little rough for our girl. Her CO2 levels were a bit high today, which makes her pretty sleepy. The nurses and doctors worked most of the day to get her levels back down to her baseline level before I had to leave tonight. She was alert and we chatted about Shorty (my corgi, who absolutely adores Brit!) She was pretty mad that she slept most of the day and didn't get to any physical therapy. I know I might sound like a broken record, but it is so moving how determined she is to get on the transplant list.
Her nurse tonight told me she was soon going to be working on the transplant team. I was excited to start picking her brain on all the things we need to work on. She really wants Brittany to be one of the first patients she will get to work with on transplant. It really made me happy to know she had another nurse who was as caring as the nurses she had out at Children's. Anyone who works with Brit immediately sees her sparkle and charm and can't not like her!
Tuesday, April 7, 2009
Tiny Pleasures
Well, we weren't able to get into any trouble today. Brittany is still being evaluated in the ICU with the hopes that maybe, just maybe, she can return down to her room tomorrow. She is so determined to get back down there, which is so inspiring. She had a great day today and had several great CPT treatments. She seems to be adjusting really well with the trach and can whisper her requests to us. I'm getting a quick lesson at lip reading, but she does such a great job letting us know what she wants and needs.
She is very anxious to be put on the transplant list and knows all the challenges that she faces in getting to that point. She told me she is ready for the transplant to happen NOW. It just proves she has some serious drive to get herself ready. She did a great job getting herself moved around in her bed and exercised her legs against some resistive pressure.
We joked about lost modesty when you are in the hospital and I assured her that it does come back. It was great to see her smiling and the sparkle in her eyes. I got to help her Mom give her a quick bath and brush her teeth, which we all agreed was like a great piece of candy, especially since she is unable to eat or drink at this point. I guess she was a little naughty and took a very small sip of water when she was rinsing her mouth out, a little teeny, tiny bit. She got such a great twinkle in her eye when she did it and our reaction too it. All I can say is "Priceless!"
She is very anxious to be put on the transplant list and knows all the challenges that she faces in getting to that point. She told me she is ready for the transplant to happen NOW. It just proves she has some serious drive to get herself ready. She did a great job getting herself moved around in her bed and exercised her legs against some resistive pressure.
We joked about lost modesty when you are in the hospital and I assured her that it does come back. It was great to see her smiling and the sparkle in her eyes. I got to help her Mom give her a quick bath and brush her teeth, which we all agreed was like a great piece of candy, especially since she is unable to eat or drink at this point. I guess she was a little naughty and took a very small sip of water when she was rinsing her mouth out, a little teeny, tiny bit. She got such a great twinkle in her eye when she did it and our reaction too it. All I can say is "Priceless!"
Monday, April 6, 2009
A First Hand Update From Duke!!
After a super, bumpy red-eye flight, I arrived to a serious downpour and lightening at Raleigh-Durham airport(oh and they have tornado watches out here too!) Glad to have my feet firmly on the ground, Brad greeted me at baggage claim and we made our way straight to see Brittany.
Unfortunately, she had a pretty high fever this morning and they decided they could better deal with it up on the eighth ICU floor, so up again she went. She worked really hard to fight off the fever with the attention of her Mom and the very competent nurses and respiratory therapists. By this evening, she was pretty fighting mad that they had moved her and she didn't get to do her physical therapy for the day. It was so great to see her spirit and determination in person.
Despite the fever, she looked great. They have been steadily decreasing her steroids and pain medication and I can see the vibrancy in her eyes. This is just one of the steps towards getting her ready for transplant.
On a lighter comical note, Brad and I lost the rental car! Well, only for a short while. We were so excited to have found a parking spot when we arrived from the airport and get me in to see Brittany, we didn't note what floor we parked on. Thank goodness for the "panic" button. People probably thought, what are those crazy people from out West doing? We had a great laugh, and Brittany seemed rather amused with our story. I can't wait until Brit is back in her regular room and we can start exploring Duke hospital. I'm sure we can find some sort of area we shouldn't be in or that seems off limits to explore. We'll try not to get in too much trouble :)
Unfortunately, she had a pretty high fever this morning and they decided they could better deal with it up on the eighth ICU floor, so up again she went. She worked really hard to fight off the fever with the attention of her Mom and the very competent nurses and respiratory therapists. By this evening, she was pretty fighting mad that they had moved her and she didn't get to do her physical therapy for the day. It was so great to see her spirit and determination in person.
Despite the fever, she looked great. They have been steadily decreasing her steroids and pain medication and I can see the vibrancy in her eyes. This is just one of the steps towards getting her ready for transplant.
On a lighter comical note, Brad and I lost the rental car! Well, only for a short while. We were so excited to have found a parking spot when we arrived from the airport and get me in to see Brittany, we didn't note what floor we parked on. Thank goodness for the "panic" button. People probably thought, what are those crazy people from out West doing? We had a great laugh, and Brittany seemed rather amused with our story. I can't wait until Brit is back in her regular room and we can start exploring Duke hospital. I'm sure we can find some sort of area we shouldn't be in or that seems off limits to explore. We'll try not to get in too much trouble :)
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