Farewell Friend

Farewell my dear Friend.

Brittany lost her courageous battle tonight surrounded by her parents and grandparents.

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

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!

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!

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!

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!"

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 :)

Working Hard!

Our girl continues to amaze me! I just got this e-mail!

Just a quick physical therapy update.

After walking yesterday, Brit was back in her room and proceeded to peddle her bike mechanism for about a hour. Today (Thursday) Brit walked about 3 times further than she did yesterday. Great progress that shows her determination. And again today she did some peddling in her room after resting up from her walk.

All in all another good day with positive steps in the right direction.

Way to go Brit!! Keep up the good work!

A Post Everyone's Been Waiting For!

I've heard from our Star! I was so excited to hear from her, as I am sure everyone else is as well. True to form, she said she misses all the animals in her life!! She also describes her struggles beginning the physical therapy and adjusting to the trach.

This is the most hardest thing ever. I can't drink anything! No ice, no food, the last time I had a drink was the day I left. The exercise is so hard, I can never breathe.

Brad also wrote to me this morning!

She has some great determination so I know she will get through the tough times.
As for physical therapy, she did some bike peddling yesterday in her room as well as the standard exercises. Today she finally got to walk. Not a great distance, but definitely a start in the right direction. The respiratory therapists told her today that on the next sunny day they would get her outside in the courtyard for a while. That is something to look forward too.

It sounds like they are moving full force forward, getting our girl ready for transplant. She is going to need our encouragement and support now, more than ever. If you can, jot her a note of encouragement, a story about your own struggle, anything to let her know you are with her!!

PT has Begun

For all of you who thought Brittany would get a little break, no such luck. It sounds like they aren't wasting any time at Duke getting her up and working out.

She started physical therapy a few days ago, and that is going pretty well. She is getting out of bed some now and they hope to have her walking some today or tomorrow. All her numbers are still good and the doctors are happy with where she is at.

Soon she will be checking out all the places around Duke under her own steam! John would suggest that you check out the "tub" room!

Better Digs!

I chatted briefly with Brad this morning and was promised an e-mail for all the faithful blog readers. Alas, I have said e-mail.

Things are going pretty good. Brit was moved out of the ICU this evening and she is now on their step-down floor, room #7814. She is adjusting to having the trach and being on the ventilator as well as anyone had expected. They did find that she has C-Dif, which is causing her some stomach pain and fevers, but she has been on the anti-biotics to clear that up now for two days. Hopefully that will soon be under control and she will feel somewhat better.

Now that she is finally on the step-down floor, physical therapy is about to begin in full force. Her doctors talked with her some about what to expect from the physical therapists. Although the task seems daunting, Brittany is ready for the challenge. She knows that it is what she needs to do to get ready for transplant, and she knows that her family and friends are behind her 100%. I know that she will have some bad days ahead, but I know that she has the determination to succeed in getting herself in conditon for transplant.

I would like to thank everyone for all the wonderful and positive comments that have been posted. And most of all for all of their thoughts and prayers.

Good Work Brittany! We can't wait to hear from you!!

All Quiet on the Eastern Front

Just a short, sweet update today via Brad.

Today was a relative quiet day for all of us, they gave Brit time to just rest and adjust to the trach today.

A girl has to have her rest sometimes!! Rest up Brittany, it sounds like you will be getting your workouts soon enough!

A Little Tidbit + More

This will be short as I will hopefully get more of an update via Brad, but here's what he sent so far

The trach is in. The docs said everything went well. Brit is awake and communicating with her tablet and even is smiling.
More later.

Great News indeed, can't wait to get more out to you!!

3:45 PST: More from Brad:

Brit had the trach procedure done in her ICU room today at 1:30 EST. As I said earlier the procedure went well. She is awake and is in the best spirits that I have seen her in the last few days. The positive news since being on the ventilator is that her CO level in her blood is at 56, down from 92 when she was placed on the ventilator. She is also moving good volumes of air through her lungs this afternoon, even better than yesterday. Another positive!!!

From what I can gather from the doctors is that she will be in the ICU for another few days, maybe longer while they see how see is doing with the trach. From there they will move her down to what they call 7200 (the floor for pulmonary patients on a ventilator) where they will begin to work hard on her physical therapy and nutrition level. Although being on a ventilator is a scary situation, I believe Brittany is doing as well, if not better than anyone anticipated. She is definitely a fighter.

What are the Chances?

If you don't believe we live in a small world, you might after you hear this. I decided to go to one of my favorite places, Starbucks. I'm standing in line contemplating what I might have when I notice a blue leg with a huge pocket near it's ankle. I look up and realize it was Brittany's Airlift Northwest flight nurse, Barbara, standing in line in front of me.

I called out to her, "hey you were Brittany's nurse!" She turned around and gave me a huge hug and asked how Brittany was. She said she was just thinking and telling her co-worker about the flight. She said Brit did so well and that she thought Brittany was an amazing girl. Barbara remarked about how concerned Brittany was for the well being of the others on the flight. When they stopped in South Dakota to refuel, they were given some hot meals and Brittany made sure to ask if they had remembered to give the pilots some food. She shared her candy with everyone. That's our Brittany, always thinking about others!

Brittany has a lot of people pulling for her, even those who have only been in contact with her for a short time. Everyone she meets instantly sees the special person that she is and can't help but send good thoughts and wishes her way!

Waiting Game

Update time for all the fans of Brit! What a long week it has been, for those of us who love and support Brittany. I've got an update from Brad via his blackberry. Thank goodness for technology :) What would we do without it??


She is resting comfortably on the ventilator, initiating the breaths herself, not the machine.
The trach was put on hold until Monday so that her blood thinners would be out of her system for surgery.

Many of you know that Brittany, in the fall, initially had some problems with her port getting blood clots in and near the end of the line. They have since corrected the problem by putting a new port-a-cath line in which delivers IV medication to her system without the continuous poke of a needle. She is able to go seven days using the same port needle.

Port-a-caths are life savers for individuals whose veins aren't very good for IV's. Brit and I share a common love for our ports...bonded by the craziest things. She takes blood thinners to help keep the line from getting clotted. She also twice a week, gets a solution put into her line and left there for an hour to help keep the line clear.

As her family anxiously awaits the day when the surgery takes place, please send comments of encouragement and support their way!

Minor Set Back?

Brittany had a minor set back today. Her blood gases were the highest they've been and the Doctors at Duke became very concerned. She was pretty groggy and out of it, so they decided to move forward by putting her on a ventilator until they can do surgery to place a tracheostomy.

Brit is now on the ventilator. The procedure went extremely well according to the doctors and she is resting comfortably now. Their plan is to place the trach tomorrow and remove the tube from her throat. Once the trach is in place they will lower the sedation medication and wake her up. This is just a beginning of a long journey for Brit, which I am confident she will be determined to make. It sounds like a few days after the trach is in place they will begin her rigorous physical therapy, and hopefully she will be moved out of the ICU unit shortly after that. (Much better visitation policy on the unit floors)

We all know how determined Brit can be, so I am sure this will just be a minor blip in her steps toward getting her new lungs. As Brad has described to me, the tracheostomy will allow Brittany to start her physical therapy, so that her body will be better equipped for the transplant.

I have to steal a line my husband, John, wrote to Brad that sums up these procedures quite nicely "I compared this sort of stuff to things such as the port or an IV. They are merely tools of the trade with a variety of uses under very diverse circumstances. " Well put and so true!

***Thanks for the photos, Michelle! I can't wait to post more!

Status Update

For all you fans out there, here is a brief update via Brad!

Brittany is doing well, she seems to be adjusting to things quicker than I thought she would. It is a different world out here compared to Children's. I guess it is the pediatric vs. adult hospital that is so much different for not only her but me as well. Strict visiting hours for the ICU that parents have to follow.

The tests seem to be going along great. They have not come across anything yet that would exclude her from further evaluation. Her physical condition is so far the only area of concern. In their experience, patients that have gone through their pt program have much better results post transplant.

It sounds like they are going to whip our girl into shape and she will soon be running circles around the rest of us. Keep up the good work Brit!

Duke Bound!!!

Brittany is on her way to Duke via Airlift Northwest!! She was in great spirits and looked fantastic and strong. They had a short delay as it is not customary to get discharged from the hospital straight from the ICU, but nothing Brittany does is ordinary!!

She will have about a five hour flight with a touch down to refuel somewhere along the way. She is accompanied by two very competent flight nurses, two pilots, her Mom Michelle and Dad Brad. She was on a stretcher that had been specially outfitted with the greatest piece of egg crate foam that could be found, LOL. She was able to sit in her favorite position, cross legged, while being strapped down. She looked comfortable and they continued to load her stretcher with pieces of equipment needed for the flight. As always, Brittany was thinking about others as they were suggesting that they might have to consolidate luggage, she didn't want either of her parents to be without their things. The nurses decided they would stuff undies in their pockets and share a toothbrush if they needed too, so that everyone could take their things.

Many of her former doctors, nurses and respiratory therapists all made visits to the ICU to wish her well. She will be missed, but not forgotten as she moves forward on her journey towards good health. She will surely make an impact on her new Health Care team as they get to know her as well as the great team at Children's.

Please help us get the word out and pass this site along to your friends and family!!

Come Join In

Hi Everyone!!

This is a place to come read about the goings on with Brittany and her journey to great health. Many of you know she has been here at Seattle Children's for a long time. Her journey is taking a turn, with an upcoming trip to Duke University for an evaluation for a possible double lung transplantation.

We will try to keep everyone informed via this site, as it is difficult for Brittany or her support team to answer every call, text or e-mail.

Please support her with your positive comments and fond memories of the good old times and the great times yet to come.