Wednesday, June 27, 2007

Missing Our Dear Angel and So Many Kind People

The past few days have been a blur. Our hearts are broken, and I feel like I am suffocating at times. There is nothing so horrible like the death of a child. We have purchased several books on how to go on living after losing a child. They have helped somewhat, in that we feel like there are others out there who are like us - hurting beyond belief. We will be meeting with a grief counselor of the Compassionate Friends group this week.

In our society, if your husband dies, you are a widow; if your wife dies, you are a widower; if your parents die when you are young, you are an orphan. But what is the term for parents whose child dies? It is an abomination of nature, thus there is no word.

John, Trevor and I console each other, talk much about Brianna and look at the many photos of her we put together on two large memory boards at the funeral. I've been lighting a scented candle near her photo every night and last night I felt her arms wrapped around me and heard her whisper, "The candle smells nice, mom. I love you." The hurt is too hard to bear. She is loved so very much.

Brianna, our angel, has touched the lives of many people. She would smile at that thought. A wonderful friend made a gorgeous crown for Brianna to wear, as she goes into her next life. It says, "Brianna, Our Angel." She gave me one as a remembrance. (I will take a picture and post it next time.) Brianna is also wearing one of two matching bracelets given to us from a dear friend. I wear the other. I also surrounded her with the things she loved, a Sharpie for drawing, a scroll with loving words from family and friends, her Hello Kitty nodder, green Extra gum, her Tazo Passion tea, a heart-shaped pillow given to her by grammy, photos of her with her family and other items. She is wearing the dress and sparkly shawl she wore to my cousin's wedding last June in Tahoe. One year and life has changed so dramatically.

We will scatter Brianna's ashes over the ocean in Southern California. We will include flower petals too. Brianna loved going to the beach with her friends. It was that image that helped her many times while she was naucous and uncomfortable in the hospital. She found the ocean calming. Her family will be surrounding her with love.

So many kind people have helped us along our journey, and even more have come forward to help now. Some dear friends who are artists have put out a call to other artists and friends to contribute to an art auction in Brianna's honor. It is called, "Angels for Brianna." All items are angels and the artists who are contributing are beautiful people and very talented. Colleen Moody, Sylvia Anderson and Kitty Forseth are coordinating this effort on our behalf. Brianna would love this, because she started a collection of angels before entering the hospital.

Angels for Brianna will take place in the next few weeks. I've listed the blogs where you can find information and the exact start date. There are many other people who are participating and have listed the auction on their website or blog. Thank you friends for having such big hearts and reaching out to us. Please visit Syliva's blog (, Colleen's (, and Kitty's ( for more information.

It is getting harder and harder for me to write here. I sob uncontrollably. I will continue though, because I know Brianna would encourage me to. John, Trevor and I are hurting so much, but your thoughtfulness, caring, patience and kind words help ease a little of our sorrow. We thank you for that.

Friday, June 22, 2007

My Eulogy to My Lovely Daughter, As Read June 21, 2007

Our dear daughter has slipped the surly bonds of Earth to touch the face of God. She leaves a huge emptiness in the hearts of all of us who loved her, many who were her friends, and even more who just had a glimmer of her through our family.

It’s cliché, but Brianna was truly beautiful inside and out. You could feel her energy when she was near. She was 17, bubbly, outgoing, vivacious, funny, silly at times and just simply like no other. She wanted to try all things new and was not afraid. Brianna enjoyed life and was eager to taste all that it offered.

We planned to go to Paris, as part of her Make a Wish. She wanted to see Alaska and she would have loved to experience Japan. She liked almost anything that had an Asian flair, and loved sushi. While she was in the hospital, we made plans for the family to go back and visit Memphis to enjoy her favorite sushi restaurant. Also, she wanted to bask in the sun while sitting in the lovely backyard of our dear friends and neighbors Alissa and Steve.

I’m telling you these things because some of you only knew Brianna through me and didn’t get a chance to be impressed by her, like so many were upon first introduction. Those of you who did know her, realize that we will miss her laugh, her funny little squeals, and the sparkle in her big blue eyes.

She had a wide taste in music from Johnny Cash to Green Day. She loved to dance and to to concerts. Brianna’s love of art varied from large scale stencils and street art to abstract and the masters. Her room is a collection of Hello Kitty, quirky signs, doodles from friends and her own hand and different little things she found interesting. She had a knack with her camera and would take candid pictures of friends and even herself. She made so many, many friends in her short life.

Brianna really had it all. She was beautiful and smart and warm and caring. She would have been deciding this summer if she were going to attend an art school in New York and follow her passion of creating hand crafts, sewn bags, stenciled clothes, journaling or painting. Or, if she would take the more practical approach and head to MIT and follow her love of math and chemistry.

She and John shared a close father/daughter relationship. They had similar personalities looking for adventure and a willingness to move to new cities and see the world. Brianna would turn to him for advice about school, college choices and career. He was the champion of her dreams. When she was worried, she’d go to him and he’d calm her fears, ending their conversation with a hug and “I love you baby.”

Brianna loved her brother Trevor immensely. She shared a special bond with him that only comes from being close siblings and close friends. You would hear them talking together in one of their rooms, or exchanging knowing glances and laughing about something, and relying on one another when alone. Every night they told each other I love you before going to bed.

Brianna and I shared a closeness that only a mother and daughter can. We laughed together and cried. She loved to create almost anything and I indulged her. We’d go shopping and she’d find yet another purse to bring home and add to her growing collection. She began to take more of an interest in vintage clothing and antique items, and we’d go to the antique market or thrift shops together looking for unique treasures. I would often turn to her for an opinion on a piece of art I was creating.

Brianna and her friends Chelsea and Nina would come over and hang out in my studio and make jewelry, painted shirts, altered tees and whatever their hearts desired. Or, they’d be in the kitchen cooking up a new recipe Brianna found and wanted to try. You’d hear them all giggling and sharing stories. Brianna would always make more to share with the rest of the family. She was so considerate.

Most importantly, Brianna was brave, courageous and strong. In the hospital, she made plans to start a garden and begin a regular exercise program when she was well. She crocheted a frosted cupcake and donut with beaded sprinkles, and she met the winner of last year’s Suvivior series. The doctors, nurses and other care professionals were touched by her sweetness and fortitude. And they saw her willingness to do what had to be done to get well, often called her a “trooper.” Really, she was a warrior.

She lived only a short 8 months after her diagnosis of MDS, and of those four were in the hospital. She fought with all her might after undergoing a bone marrow transplant and getting a lung infection in February. I stayed with her sleeping in the room until two months ago, when Brianna was admitted to the intensive care unit with pneumonia. She was unconscious for almost the entire time. I held her hand often in the hospital and stroked her brow, massaged her feet, encouraged her, talked to her and told her I loved her. The cruel part is that she was so close. Just a week and a half ago, she was communicating with me and the nurses picking music to play and pointing. Then, last Tuesday her heart temporarily stopped from bleeding in the lung. By Thursday, it was evident she would not recover and on Friday I held her hand, pressed it to my face and kissed her for the last time.

I want her near me, to feel her cheek pressed against mine and her arms wrapped around me squeezing me like she did, and say “Mom, I love you. I’m so glad you’re my mom.” Or when she hugged John and I and said “I’m so glad you’re my parents.” We strove to give Brianna roots and wings, we just never thought she’d fly so high, she would soar beyond our reach. My dearest darling, we will miss you forever and can’t wait for the day when we can be together again to laugh, share, hold each other and say I love you.

Brianna has gone into the light and is now free.

Saturday, June 16, 2007

You are Welcome to Say Goodbye to Brianna on June 21 at 11 am

Brianna Lauren Grant
Jan. 12, 1990 - June 15, 2007

Beloved Daughter of
Iva and John Wilcox
and James Grant and
Mary O'Callaghan

We said our goodbyes to Brianna yesterday. Her spirit was already gone, so she was taken off the ventilator. Her heart quietly stopped. I held her hand to my cheek, stroked her brow and kissed her forehead. John and Trevor told her they loved her. Her family surrounded her, held her and wept softly. I love you forever my darling, and I will see you again.

Funeral Services will be held:
Thursday, June 21, 2007
11 a.m. and a Wake will immediately follow

St. Timothy's Episcopal Church
1550 Diablo Road, Danville, CA
(925) 837-4993

Donations may be sent in Brianna's memory to the National Art Honor Society at Monte Vista High School, 825 Hartz Way, Danville, CA 94526.

Friday, June 15, 2007

Our Beautiful, Intelligent Daughter is Gone

Our beautiful, intelligent, talented, fun-loving daughter has gone into the light. We are left with such heartache and sorrow, I cannot even express. Brianna fought so hard and was so couragous, but was unable to overcome injuries.

Yesterday, the doctors told us they were very concerned about neurological damage after her cardiac arrest. Their concern was heightened hours later when her pupils were unresponsive to light and she didn't respond to pain. They believe that on Wednesday, almost 24 hours after her heart stopped, her brain died.

A caring neurologist, the ICU doctor and the BMT doctors took us into a small room and told us that Brianna had undergone brain death. They based it on an EEG and a thorough exam. But we knew before they told us, this was the case. We stood in the room while the EEG was recording her brian waves, and there was no activity. As the neurologist told us, brain death means death. They believe her brain swelled from lack of oxygen and caused it to herniate down into her spinal column.

We came home last night to tell Trevor, and all of us will be going back to the hospital today to say good-bye. They wanted to give her more time, just in case. We prayed for a miracle. Her body is still on life support, and it's still her hands, her feet, her eyes, lips and hair. But you can see she is no longer there. I held her hand and put it up to my cheek, just to feel her touch again on my face. But she is gone. And today we will all gather around her. Later, they will take off the epinephrine that is keeping her heart pumping.

It wasn't supposed to end like this and a huge hole has been cut from our hearts. Trevor has missed her for the past few months, only seeing her while she was on 2North. But today he too wants to see her and say good-bye. My sister and brother, mom and dad, Jim and Mary, and Joyce will surround her with love.

I will never hear her voice again or see her laugh, or hug and hold her. She will be in our hearts forever. Each day is a gift. Don't take anything for granted. Hug your children, and tell them you love them. I will post the date and time of our precious daughter's funeral.

Wednesday, June 13, 2007

Next 48 Hours Still Critical for Our Sweetheart

Here is our beautiful daughter having fun in the snow. God how we love her and pray she makes it through this critical time.

We have been told that the next 48 hours will have to be taken hour by hour in Brianna's recovery from yesterday's cardiac arrest. I learned that they had to apply chest compression on her heart for 30 minutes in order to keep it going, while the extra chest tubes were inserted to reduce the pressure build up. The reason for the arrest was that the pressure inside her chest made it impossible for her heart to beat against that pressure. But in the process her heart has sustained some damage. It will heal. But just like any part of the body, the bruise will take time to heal. The height of the bruising will be tonight, which means the heart will be its weakest.

So last night Brianna held her blood pressure okay. She is still on an epinephrine drip in order to help her heart beat. But this afternoon, I was in her room and the oscillating ventilator alarm went off. Brianna began to cough and move and the oscialltor is so senstive it almost shut off. This started her blood pressures her heart rate and to drop. They had to push more epinephrine and her blood pressures came back. Her heart had not stopped, it just took a dip.

The doctors have told us that she is on close to the maximum amount of epi she can be on, plus they are giving her extra doses to stablize her blood pressures. They have told us they are very concerned about the trend of her needing more epi right now, rather than less. They also called Jim to tell him he should be here tonight.

She needed "volume," as in fluid to give her heart enough to pump the oxygen through her system. She has been given many units of platelets, packed red blood cells, albumin and other products in order to maintain a higher venus pressure allowing her heart to beat easier.

The doctors also told us that the new chest tube insertions were not done under the most sterile conditions because of the urgency. So any bacteria introduced may peak tonight. Already she's had a fever today. They've taken her off the Linazolid and put her on vancomyecin and meropenum. And, because she needs so many medications, they needed to add another central line. This one was put in her groin and has three leumens, which adds to her already existing two other deep-vein lines.

In our care conference today, the doctors told us that the next day or two will tell whether Brianna will make it through this. We won't know anything about her neurological status until she gets past all this and has been weaned again on the ventilator and is able to wake up. Some feel she won't have any, others think Brianna will have some brain damage.

I stand next to her bed and stroke her brow and her head. I also used a wash cloth to clean off the dried, splattered blood on her hands and arms. And, I talk to her and tell her how much we love her and that she needs to continue to fight.

Thankfully, John is with me. My cousin Ogi came this afternoon and was here supporting me during Brianna's crisis today. My parents also are here as well as Trevor. It's finals week at the high school. I can't help but think that Brianna would be celebrating her last day of school tomorrow. Instead, we'll be happy with her making it through the night.

All of your prayers, encouragement and email posts mean so much to us. Thank you all for your continued support, love and hugs. As one of my friends have said, we are in the darkness right now and we pray we will see the light soon.

Tuesday, June 12, 2007

Please Pray for Brianna Over the Next 24 Hours

Before today, I've tried to sit and finish the blog a couple of times. The great news was that tomorrow Brianna was going to be extubated. A lot of other things happened, but they are of no consequence now. Everything changed today at 4 pm.

I was in Brianna's room for most of the day. She was answering questions and was very alert even though she was uncomfortable with the tube in her throat. She started to cough and the nurse suctioned the tube. But as she began to pull out the stuff Brianna was coughing up, it became bright blood. More of it began to come out and the nurse quickly called a respiratory therapist and the doctors. I watched as Brianna continued to cough and they suctioned blood from her endotracial tube. Then blood began started to come out of her chest tube. I left because it was obvious that this was serious.

I called John and came back to wait outside her room where Lizzi (our BMT nurse practitioner who's been with us from the beginning) called up on the computer the chest x-ray that was just taken. The left "good" lung looked okay, but the right lung was showing a little hazy area. Then a nurse rolled the crash cart (for restarting a stopped heart) to Brianna's door. "Just in case," he said

Soon after, doctors were rushing in packed red blood cells, platelets, and clotting agents. Brianna was bleeding into her lungs. I stood with Lizzi while more people began running in. The light went on outside her room and they opened the door and grabbed the crash cart. John was still on the road.

For a while our wonderful, beautiful daughter left this earth. The doctors applied compression and she didn't respond. It wasn't until they put a board underneath her back that she responded and her heart began to beat again. That coupled with powerful drugs like epinephrine brought her back to us. Her blood pressure dropped and they are having a hard time stabilizing it.

Our physicians from both PICU and BMT are more critically concerned tonight than for any other event Brianna's dealt with. Both David Cornfield, head of PICU, and Christina Alvira, the PICU attending, worked to bring her back when her heart stopped. When you see tears in the doctor's eyes, you know they care about you and your child and that they are very concerned. We have been told that this is an hour-by-hour situation and that the odds are not in our daughter's favor. If Brianna can be kept stable tonight, and beyond, we won't know if there is any brain damage from possible lack of oxygen while "crashing" until she wakes up.

She is back on the oscillator to help provide compression to stop the bleeding inside of her lungs. They think an artery in her right lung broke or was invaded by the aspergillus, although they aren't certain. Aspergilllus's MO is to infiltrate the lung tissue and surrounding blood vessels. The doctors also had to put in two more chest tubes. She already had one on the right side, but now she has a second one on that side near the back of her lung. They had to put a new one in her left side. While they were giving her oxygen and hand expanding her lungs, they tore a small hole in her left lung. The tube is to help drain any air that may be leaking into her plueral space between the lung and the ribs.

As I write this, John and I are on a vigil in, and just outside, her room hoping and praying to beat the odds again.

Friday, June 8, 2007

Wondering, Waiting and Worry

Brianna shows off a sweet little Marie Osmond doll named Brianna that was sent by one of my sweet friends and her daughter from Pennyslyvania. Oh to see that smile again. Soon, we are told, soon the tube will come out.

The waiting, wondering and worry is an ever-present state in our lives. Brianna's sedation has been tapered down enough that she is waking and definitely there, answering questions. Of course, she is gagging and coughing a lot due to the tube. Well I knew the Tuesday extubation was premature. I'm actually upset that they even mentioned it, because they obviously didn't think it through. She has not been extubated and from our Patient Care conference on yesterday, it probably won't happen until early next week - a week after they said it would!

So the biggest issue they saw was that despite the fact that Brianna's lungs are in good enough condition to breath without the ventilator and with a little help from an oxygen mask, her muscular strength is not where it needs to be in order for her to protect her airways. In other words, if she vomits or coughs up something, will she be able to move her head so that she doesn't choke on it. We most definitely want to be on the safe side and wait, but it seems like they jumped the gun.

So for the past several days, Brianna has been awake and moving more with each passing hour. She is still coughing and gagging, but is also answering questions yes and no and giving a weak thumbs up. She is very slow, mind you, but again, I would think that would be the case with anyone if they were in a bed for seven weeks, fighting the worst of infections and not getting all the nutrition needed - even becoming catabolic for a few days. On top of that, every doctor that walks in is asking for her to wiggle her fingers and toes. She just stares at them like, "What am I a show dog?"

But an electroencephalogram (EEG) was ordered as was an MRI, after the neurology team came in and examined her. They felt she was not as responsive as they would have liked and felt that maybe she was having seizures "subclinically." Or, having seizures without any outward physical signs.

The tech for the EEG came around 5 pm and hooked Brianna's head up to 30 tiny electrodes. She had to wash 30 little areas of her head, squirt on conduction goop, sick on the electrode and then tape over it so it would fall off. The test itself was only 20 minutes, but the whole preparation and clean up before and after took a long time.

What it told us was that she had "diffuse slowing," meaning she's on a lot of drugs. The MRI is being done tonight to rule out any damage to the spinal cord or brain stem from blood clots or past seizures. Because she is VRE positive, meaning she had an antibiotic vancomyecin resistant entereocaucus, they have to take her as the last case. Last means 11 pm tonight. Most of the doctors think everything will be fine, but they want to rule it all out.

In the meantime, she has become more and more aware of her physical limits and that she's on a ventilator. She has cried several times thinking this is all permanent, even though we tell her it is not and she is just weak and the tubes will be out soon. Soon for the doctors is early next week. I just hate seeing her so tortured by the tube in her throat. On the other hand, I am so thankful that we at this point looking back at where we started in the PICU.

The other issue the doctors were concerned about is that since her kidney function had been greatly reduced, how quickly were the drugs clearing from her system. Probably not very well, we all suspect. So the renal team was called in to see what could be done to bring her Urea Nitrogen (BUN) and Creatnine down. They were at 154 and 1.7. The thought was that since her BUN was so high, she could also be suffering from something called uremia. It causes confusion. Their plan was to give her more fluids and thankfully over the past few days, her BUN has dropped to 102 and creatnine is now 1.5. Not a lot, but the trend is definitely headed in the right direction. (Now, I sound like one of the doctors using their typical rhetoric.)

She has had several fevers too and that worries me. They have cultured all her IV lines and nothing has grown out, thankfully. So they are being watched, but nothing specific is being done about them.

I had a very tough weak, with all the worrying about possible brain damage or spinal cord injury. Then the sight of her struggling with the tube in her throat and her extreme muscle weakness. In some ways the beautiful pictures of her I've taped on her room door are wonderful and sad. I put them up so that all the medical team could see they were treating a beautiful young woman, even though she didn't look like her pictures at the moment. But I'd see these pictures and wonder when I'd see my wonderful daughter like that again. Soon, I know, it's just so hard living these days.

As I have said before, we have come so far, and we have so far to go. Every month, I get a free parking pass from admitting. I use it everyday and the expiration date is written on the plastic card in black sharpie. I look at that date and wonder what it will hold for us. I thought for sure that by June 15, we'd be back in 2 north on the transplant floor and out of the ICU. Now, I'm not so sure, since she will spend several days after extubation in the ICU for observation. So many times I've looked at that date and thought "Oh, we'll be going home by then." I am still learning I have to live day by day, and it is a challenge when you have hopes and dreams of seeing your child well again soon, only for those hopes and dreams to be dashed.

We are all so happy to see Brianna's gorgeous blue eyes looking at us, and know that soon, very soon, we will be back on the transplant floor. Soon, just isn't soon enough sometimes for me.

Tuesday, June 5, 2007

Using the "E" Word

Brianna and Trevor smiling brightly for their mom and her ever present camera at family events. I'm so glad I take lots of pictures!

Brianna continues to have good days. She did have a small fever, which again makes me concerned about what's going on. But the doctors have been "sprinting" her on the ventilator every day. In fact yesterday, she breathed "on her own" for nine hours and did great. They are giving her very minor support and she is doing fine. So yesterday morning they even started using the word extubate. My jaw dropped when the doctors talked to me after rounds Monday and said that today they would probably extubate tomorrow. I repeated, "Tomorrow??" I was stunned!

I didn't want to get my hopes up. I was actually thinking I'd be happy if it happened before the end of the week. It looks like that may be more realistic.

Even though Brianna is doing well with her lungs, her sedation is now an issue. In order for her to be extubated, she has to be able to follow their commands and cough. They remove the tube during a cough so the body doesn't clamp down on it and cause damage to the trachea. They weaned Brianna off much of her sedation, but she is still very groggy and unable to follow commands. They don't believe there is any reason she would have neurological damage. It just may take more time for the drugs to leave her system since her kidneys are still not functioning 100 percent.

She opens her eyes and stares. But when I ask her to look at me, it's as if she doesn't hear. Of course, this too makes me worry that something has gone wrong. But I know that the doctors are right and that she may need a few days to be more "awake." Who wants to be awake with a tube in their throat? Not only that, but for the past few days, she hasn't gotten enough total parental nutrition (TPN) - her gatorade looking IV food - so her body has been catabolic. It's using her muscle and fat stores for calories. This isn't good, because she doesn't have any stores or muscle. So she is extremely weak and they expect her to squeeze their hands.

On one side, I'm so elated they are talking about getting her off the ventilator, and her lungs are healing. On the other, she is so weak and medicated, they have said that if she doesn't start to "wake up" more in the next few days, they'll start to run tests to see if she has any brain or nerve damage. I'm sure you understand our anxiety level.

I did get a break again this weekend to help ease my stress level. My dear husband came to the hospital early Sunday morning so that I could meet up with my friends Colleen and Kitty and Shelly at the Alameda Point Antique Market by the Bay. Some 800 vendors are usually at the show. It's something I went to regularly before Brianna's diagnosis, and I use much of my finds in my art. So it was a nice retreat to do something "normal" and browse all the vintage and antique goodies. One of my favorite artists was there Wendy Addison. She always has great items. Of course, I'd see something funky or 70s and think of Brianna and how she loved pieces like that.

Also at the show, I saw Joanie, the mother of Trevor's best friend Kevin. She was there with two friends, one of whom said she recognized me from the blog. We hugged and cried and they said they were amazed at how well we are handling Brianna's illness. The truth is you just do, you have to for your child. There is no other option. I realized how I naive I was going into the transplant procedure. I really broke down when one of her friends said they were praying for us and they don't even know us! I am always so touched by those words from strangers.

Another friend of mine whose young 8-year-old daughter is ill was going to come visit. She couldn't because her daughter had a seizure from a new medication she started. She said she got a glimmer of what we face with Brianna. But she got more than a glimmer. When you fear for your child's life and well-being, time stops and nothing in the world matters than getting your child well.

We both have a long road ahead of us with our daughters recovery. But we are similar in many ways. We have much family and many friends to lean on when we feel we can't endure seeing our children suffer any longer, or when we lose sight of the little steps of progress being made toward their health. I thank God for my husband and son, my parents and the rest of my family who are there when we need them. I am also thankful for all my friends who I can turn to when I need support. And, I am so touched by the many people I do not know personally, who help our family with meals and driving, who pray for us and who send us healing thoughts everyday while our journey continues.

Saturday, June 2, 2007

Signs of More Wakefulness and Pain

Here is a picture of Trevor and Brianna with their grandparents. My mom and dad live in Reno and are close enough to come and help us. It's a nice reminder of our visit to their new home during the holidays last year.

Brianna continues to have good days. I am so thankful. They continue to wean her from the ventilator and are increasing her "sprints," by making her do more of the work breathing. She really has done well with during them. They are four times a day for about two hours each.

As the good days add up, the doctors think more of extubation and where she needs to be with her sedation. The tricky part is ensuring patients are comfortable, but awake enough that they will breath on their own once the tube is pulled out. They've really come down on her sedation and starting yesterday, it's very apparent Brianna is not totally out of it. She opens her eyes now and looks almost confused, but also like she's trying to concentrate on not gagging. Today, she gagged twice and even threw up mostly bile, because of the sensation of the tube. She also winces when you move her or touch certain areas that are sore or painful - practically her entire body!

I explain that she's in the intensive care unit and that the tube will be coming out soon. I don't know if it helps. I do know she is not comfortable.

When I mentioned to one of the nurses that it's a fine balance between coming down on the sedation and making sure the kids don't gag, her response was "that's a good problem to have." She is so right. Brianna has come so far, but we have a long, long way to go still. I thought it was funny when one of the BMT doctors actually thought Brianna would be awake enough to write notes and communicate and not gag. I kept thinking, "Right...Brianna would never be okay with that." She is not into the medical field and she has stressed to us early in her stay that this experience has not made her interested in becoming a nurse or doctor. Quite the opposite.

Also, she has a lot of extra fluid on her and they're trying to get that under control with the diuretics. But as the PICU attending doctor Sarah Kache believes, once Brianna's out of the PICU and off the diuretic IV drip, she's going to have to manage extra fluid and not have it affect her lungs. Thankfully, it hasn't so far and my hope is that she is either even or a little negative with her fluid balance by tomorrow morning. I think that's what the doctors are aiming for too.

A new concern is that she may have another chicken pox re-activation. The troubling part is that it's on the other side of her body, completely opposite from the original infection. As you may know, the chicken pox virus, once healed, retreats to a specific nerve bundle along the spinal cord. If you have a break out of shingles, it will only appear on once side of the spine along those nerve endings. The doctors cultured Brianna's skin today and the test results should be back tomorrow to be certain. The infectious disease doctors think it's just skin break down, which seems to be another issue she's dealing with right now.

Because she's been laying in bed for six weeks now, areas of her scalp have sores from where her head touches the mattress. We move her head to relieve the pressure on those areas, but new ones crop up. So the sooner she is up, extubated, and moving, the better.

We have gotten so many gifts and cards. I have to say a special thank you to my dear friend Debbie for the beautiful gift she sent, and to Pixie Patch, Jenny, for the special piece she sent. Also, I need to send a heartfelt thank you to Stacy. You are so kind and generous, words just don't begin to express how appreciative we are. As I've said to many of you, it's not easy for us to be on the receiving end when we've always been in the giving mode.

So many of you have sent Brianna such wonderful things, from cards and gifts, to pictures and emails. Each is a special gem that we will cherish for a long time. Although it is very lonely here at times, it is so nice to know we have a huge family of friends and relatives who are praying and thinking about us always.

God bless.....Iva