Forever in Our Heart

It's been almost a month and half since Brianna died and an hour doesn't go by that I don't think of her. Every day, it is hard to get out of bed and crying is something I do on a regular basis. Several hours will go by when the grief is not foremost in our minds. John, Trevor and I have had some nice family time together recently, but it is bittersweet. When we're enjoying ourselves, thoughts of Brianna float into our minds and we all realize just how much we miss her. This is a pain that no parent or brother or sister should have to bear, and yet here we are having to struggle through it. Family and friends continue to help us, and my art has given me some respite from the constant ache in my heart.

The response to Angels for Brianna was beyond our imagination. We are grateful to all the artists who participated, and to all who bid on the beautiful angels available. The workmanship and talent was amazing, and to the organizers, Colleen, Sylvia, Kitty and Stephanie we are so very appreciative.

We received two packages in the mail over the past week or so. The first was from King of Mice Studios, Carolee Clark. You may remember, one of the items in the auction was a breathtaking box painted with Brianna's image on it and stars with crystals. Well, Lyndy purchased the item and sent it to us. I cried when I opened it and read her card. Lyndy, you have no idea how special this is to us, thank you, thank you. With tears in my eyes, I am writing this to let you know I will use it to keep all of Brianna's jewelry. She would like knowing that her special things will be kept in a truly special keepsake.

The second package was from Deerfield Farmhouse's Christine Crocker, an artist who is in the Directory of Traditional American Crafts 2007. She donated an angel doll to the auction. Her work is unbelievably detailed and lovely and someone sent us the stunning angel. The purchaser remains anonymous, but I suspect she has been one of our greatest supporters. You know who you are, and I want you to know that we are ever so grateful to all that you have done for us. I have placed the sweet angel next to Brianna's portrait in our family room and next to the crown given to us by Donna O'Brien of the Ribboned Crown. I will cherish these things until the end of my days, when I will see Brianna again.

I also want to thank Donna for helping me get out and work on art. Soon after Brianna's funeral, she signed she and I and Colleen up for a class held about two weeks ago and lead by Ulla Milbrath at Castle in the Air in Berkeley . (Ulla contributed the decorative and beautiful filligree necklace for the auction.) The class was Fairy Tale Altered Books and we had a good time. We all felt Brianna was with us. Before class, Ulla presented me with an antique paper angel that was used during celebrations at a church. It has curly hair and blue eyes and reminds me of my daughter. Thank you Ulla for such a thoughtful and wonderful gift.

As the days go by, I can't stop thinking "Why? Why Brianna?" It is something that will haunt me for a very long time. We went to the Compassionate Friends meeting last week and most of the parents there had children who passed away several years ago. They were so supportive and understanding of each other and us. And they acknowledged that it takes a long time before you stop asking "Why?" and accept what is. We all talked about our children who died and our children who survive. We discussed how they get messages from their beloved children. One woman told us how she found a lone cloud in a clear blue sky in the shape of the first letter of her long gone son's name, and how another has butterflies landing on her when she thinks of her son. The group meets monthly and John and I plan on attending for a while.

I've written much here, I know it's been a long time and I know it is a bit disjointed. I have written more in a journal I'm keeping. It began as Brianna's Idea book. She had cut and pasted art ideas and drawings of things she wanted to create into a large, bound sketch book. Only the first 15 pages or so were filled during the past year. Hopes and dreams she will never fulfill. I have commented on some of her ideas and how she so wanted a laser cutter to make laser sculpted, acrylic pendants. I have written how I actually priced one out for her and found they run about $10,000. Besides the price tag, it wouldn't have fit in our home. I had to tell her no on that one, but she understood. I am writing memories about her and the things she did that made her so unique and the daughter I love and miss so very much.

Brianna ~ You are forever in our hearts. God bless my sweatheart.

Angels for Brianna Begins Sunday, July 8

Many caring and talented artists are contributing to an online art auction in honor of our daughter Brianna Lauren Grant, Jan. 12, 1990 - June 15, 2007. Angels for Brianna will last for one week, beginning Sunday, July 8, and ending on Saturday, July 14. Our family is so touched and appreciative of the 70 or more artists who have donated their time and talents to memorialize our courageous and beautiful daughter who died in the hospital after four months while undergoing a bone marrow transplant. Brianna is in our hearts and her loss is felt by many. We are broken by her passing. No words can adequately express our gratitude to all of you for your time and talents. For now, we can only say thank you, thank you for all that you have done and continue to do. Please click on the link above for information about the auction.

Grace

Many family and friends came to Brianna's funeral. Because we were in such grief, I did not think to take pictures. Actually, it made me so sad to think of taking pictures, because all I wanted to do was forget that my baby was dead. But one friend, Virgil, did take some and I'm glad he did. This is one of his pictures of the dove release.

Our family gathered around Brianna's casket and we were each given a dove to hold. At the same time, we released them into the air. They circled several times before journeying home. The release symbolized Brianna's spirit rising and joining other family members who have passed away and are now in the heavens. The doves also symbolized "letting go" and the beginning of our grieving. We all cried softly as the beautiful birds fluttered away together into the sky.

We have received numerous cards of condelences with special notes written from many of you. They are all special to us. I'd like to share one in particular.

While Brianna and I were in the hospital, she would would get massages to help relax her. One of the volunteer therapists, Kathy, always came in with a smile and laid healing hands on Brianna as part of the massage. She even spent extra time giving me one on my neck and shoulders, when she could. She sent a special card with the word "Grace" surrounded in glitter and inside she wrote a beautiful note:

Iva,
You and Brianna are in my thoughts.

I will always marvel at what I sensed as your daughter's calm and completely centered place at the heart of her being. Repeatedly, as I worked with her, regardless of what was swirling around her, or happening at the physical level, she seemed to have access to this core. I believe this core was the place of true healing for her.

I wrote the enclosed Haiku in Brianna's memory. I am blessed to have been touched by both of you. Peace...Kathryn

Here is her Haiku:

Within
Stream fall over moss
One leaf glides to pebble path
Dew rests on stone bench

Storm in wrong season
Gales rage outside courtyard walls
Garden calm, pond smooth

She walks here in grace
Where the courageous soul lives
Her still sacred space


Thank you Kathryn...John and I both thank you. We will treasure your words and poem, along with the cherished memories of our sweetheart.

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 (http://sylviaanderson.blogspot.com/), Colleen's (http://www.colleenmoody.blogspot.com/), and Kitty's (http://kittysglitter.blogspot.com/) 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.

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.

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.

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.

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.

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.

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.

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.

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

Taking One Day at A Time

Here's a great photo of Brianna and her friend Chelsea. They had so much fun together, especially when their friend Nina joined them. I will be so happy to see then all together again, one day soon.

Again, it's been several days since I've posted. Brianna stabilized Sunday afternoon and even improved. And, I was able to go home Sunday afternoon and evening, while my wonderful husband stayed with Brianna at the hospital. In fact, when I got back on Monday, he held down the fort at the hospital so well and Brianna made great improvements, the doctor said that I will have a hard time following in his footsteps. We laughed, but I was so relieved Brianna had made so much progress.

On Sunday, Trevor and I went to see the new Pirates movie. It was great fun, and I enjoy Johnny Depp so much - even Keith Richards makes an appearance! We went to an early dinner and then just relaxed at home watching TV. Of course, I did my laundry and grabbed several things to take back with me to the hotel. It was actually so nice to be home, but not long enough. I slept well in my own bed too. I thought about how Brianna was doing and just prayed her progress continued.

Monday morning, Trevor and I went to the mall to do a little shopping for him. He needed shoes and he asked if we could go. So we picked up a pair for him and I even found a pair. I did get teary eyed when I saw the Sanrio store in the mall. Brianna loves that store with all its Hello Kitty brand items for little girls. At Christmas I bought her the little contact case and a Happy Kitty that nods its head when the sun hits it. I was missing her again something fierce. We haven't heard her voice in almost six weeks, and I haven't felt her arms hugging me. She's there in bed I know, but it is still so very hard.

Later in the morning, it was time to head back to the hospital in time for all of us to go to lunch. I miss Trevor too. He is so tall and handsome and has such a great laugh. It was a great little reminder that life will be normal again, it will just take lots more time. John and I made the switch so he could get some things done at home and Brianna continued to do well. He and I are like two ships passing in the night, and I miss him terribly.

Then on Tuesday, we had another Care conference. The focus of this one was to determine whether Brianna should have surgery right away, or wait. After the surgeon looked at her CT scans, he met with the other doctors first. They called us into the meeting 30 minutes later. The BMT team, PICU team and Dr. Whyte the lung surgeon all agreed that we should wait maybe two to three months before Brianna undergo any further surgery. They made the point that she was just too week and the lungs needed more time to heal before surgery. As Dr. Whyte put it, its a risk/benefit thing, and right now it would be too risky.

I was relieved on one hand, because I know she would be too weak to handle it. That her lungs were still healing, and with another miracle, maybe she won't need it at all. But on the flip side, her chest tube drainage grew out aspergillus (something we learned only a day or so ago). And that scares me terribly. But as they all said, we know she has the fungal infection on the right side. So it's really no surprise, and as each day passes, Brianna's immune system - as new as it is - is able to send more of those neutrophils to the site and help in the fight.

John again came down for the meeting. I am so lucky to have him. He feels exactly as I do. Neither one of us will rest easy until that thing is out of her or we know it is completely gone.

As for her chest tube - which she still has some 7 weeks after her first surgery - it will stay in, but be switched out with a smaller, more comfortable one. The reason is she has a hole in her lung and the tube is allowing that air to escape out of her chest cavity. Until the hole heals or is surgically fixed, the tube has to remain, and it may mean keeping it until she has the second surgery.

The other bit of news we were given is that the quick test, or slide smear, of the bronchoscopy that showed fungal elements was not from the left lung. Somehow the lab got it mixed up and it is actually from the chest tube drainage. I was left with mixed emotions - relieved, but a little anxious. How could a mistake like that be made? Scary. All other tests from the left lung now are negative - no fungus, no bacteria, nothing.

John and I want the docs to be even more diligent about fighting this thing in her right lung. She is on the highest antifungal coverage one can get, and it seems that her body has responded. At this point, we've been able to keep the infection at bay. I pray very hard that it continues.

Brianna's progress over the past four days has surpassed the doctors expectations. She has come off the noriepinephrine and the dopamine for her blood pressure, they have reduced her diuretic IV drips because she was 2 liters negative just yesterday and even more the day before, and they have come down on the ventilator settings. She has even started sprinting. This is when they set the ventilator to give her only 6 breaths a minute for an hour. Brianna has to breathe more than that - we average about 15 to 20 a minute. It's a way to strengthen her muscles and see how she does. This is done four times during a 24 hour period, and then the next day or so they increase the time to two hours four times a day.

Her first sprint was great. She averaged 25 breaths and held her oxygen saturation at 99 percent. We were so pleased. The doctors even talked about extubation possibly in the coming week. But as always, they don't want us to get too excited. We have to take one day at a time and her kidneys are still under much duress.

Her creatnine hit a high of 2.6 (normal is 0.7 or 0.8) and her urea nitrogen (BUN) was 168 (normal is something less than 40 I think). This is a big sign that her body is having trouble clearing fluids through the kidneys. But over the past few days, the numbers have headed in the right direction. All have come down to yesterday's 2.2 creatnine and 144 BUN. But as long as these numbers remain this high, she is still in danger of her kidneys just stopping. Again, another prayer of ours is that the numbers keep coming down.

Our baby girl is getting better, but I am learning the hard way that we have to take one day at a time. She has had a good few days and my hope is that they continue.

Until we are home and Brianna is completely healed, I will continue to say thank you to all our friends new and old who send their love, prayers and good thoughts. Our family have been so supportive, and we really couldn't do this without them. Also, I want to acknowledge our dear friend Sharon Jones who heads Brianna's boosters. She kindly came to visit me on Tuesday. But every week, she works on finding volunteers to help our family. Thank you Sharon!

I had no idea how long this journey would be and I still have no idea how much more road we need to travel before Brianna comes home and is completely healed. Your thoughts and prayers and positive energy are still needed, because I have come to realize that the road ahead will have bumps. I just pray they are small compared to what we've had to travel in the past month and a half, on day 109 in the hospital.

More News and A Rough Couple of Days

Much has happened in the past couple of days. Every day I spend here seems like months. Sometimes I have a hard time seeing past the door of her ICU room, so I thought a picture of the Eiffel Tower would be a great reminder for me, along with all of your wonderful comments. We WILL be going to Paris, and Brianna will be the Parisian Princess while we're there, thanks to Make-A-Wish.

Friday, we spoke with the doctors about the phone call I had received about the fungal infection. They believe it was a contaminated sample, because we know she has a fungal infection in the right lung and the bronchoscopy brush that was done was not a protected one. In other words, the little brush passed through the area of the lungs shared by both, so if any particles of fungus was there from the right lung, the scope would pass through it. It still scares the heck out of me.

Also, Dr. Cornfield, the pulmonologist following us and the attending PICU doctor this week (thank God), said he was not surprised that fungus had been found in her lung. He said we know she has it and we're treating it. He said he had to break through a big blob of something when he went down with the scope and then when he came back up it was gone- probably blown down into her lung with the pressure of the ventilator. So it could have been from that. Plus, we can't tell on the slide smears if it's active or dead fungal cells.

When he looked at the CT scan of her lungs, he said he was pleasantly surprised how good they look. Yes, there were some areas of dead tissue on the right side, and some infection on the right, but overall they looked pretty good for sick lungs. He said the new infection on the left didn't look like fungus, but more like a bacterial infection. Of course, the radiologist would have to tell us for certain. (They have to qualify everything.) Well, bacteria was confirmed.

One of her cultures from the chest tube drainage came back with an antibiotic resistent bacteria - Enterococcus. This is usually found in the intestines. When kids are in the hospital on antiobiotics for so long, this bacteria is being brewed to be resistent. And when it starts to emerge from the intestine and get into the blood stream or other area of the body weakened by previous infection, it sets up shop.

So without waiting for a postive culture, the doctors felt that it was time to try the big guns on the antiobiotics. So Friday, they gave her Linezolid, which kills antiobiotic resistent bacteria. After that, all Hell broke loose in her body.

A couples hours after the new antibiotic, they had given Brianna some Tylenol for a mild fever - actually it wasn't one, but they thought it would make her comfortable. Soon her temperature rose to 39 celcius (over 100) and she was burning up. Her blood pressure started to drop and she had to be put on Dopamine - which makes her heart race and blood pressure rise. That made her heart race to about 149 beats per minute, but her blood pressure still was not holding. It was running about 80/40 - low.

And so they decided to give Norepinephrine. Then her ventilator settings had to increased quite a bit, because her oxygen saturation kept falling. A little later, her temperature rose to 39.9 Cel, which is almost 104. They had to bring in a cooling blanket. Later in the night, her body temperature plummeted and they had to bring in a machine that supplies continuous warmth to a water blanket/mattress. My sweet girl had a really rough 24 hours.


What was happening was that once the antibiotic was given, it killed the bacteria. When the cells were obliterated, the toxins in the bacteria were let loose in her system causing all sorts of havoc. It's called a bacteria shower, and the doctor said it was sepsis.

If we were septic, we'd be pretty sick, maybe even hospitalized. But with Brianna, being immune suppressed, it was serious. I was an emotional wreck, even though the doctors told us that she would get worse before she got better. It's one thing to hear it, quite another to live it. John knew this was really rough for me and came and stayed with me.

Yesterday, we arrived to see that she was pretty stable. Dr. Cho is on this weekend for BMT. He is just not very good at being compassionate. Dr. Cornfield has taken a liking to us and has followed Brianna for the past two months. So he hugs me and takes his time to make me feel okay about her condition, however serious it may be. Also, he is so positive about getting her out of the ICU in the next few weeks.

So Dr. Cho's first report to us yesterday morning that multi-organ failure was in process with Brianna. He spent about 10 minutes with us basically saying nothing to us, except clarifying the term multi-organ failure. This is condition is what leads to death most of the time.

So after I cried for a while, we went to see the PICU team led by Dr. Cornfield. He told us she is no where near that kind of organ failure. I knew it wasn't as bad as Cho had described. We came away later feeling a little better, even though Brianna was truly very sick.

Late yesterday, we learned that a culture from the chest tube drainage grew the antibiotic resistent bacteria Enterocauccous. They also found Staph in her yellow leumen of her tunneled central line. So to say that we've had a heck of a time for the past two days is an understatement.

Thankfully, Brianna has had a pretty stable day today. The doctors have told us that we will most likely have to face another crisis before this very long journey is over. It may be her strained kidneys, because they are barely holding on. They have been pushed to the limit. So far, they continue to function and we are thankful for that.

Our hope and prayer is that we've seen the last of this nasty bacterial bug, and Brianna can continue to be weaned from the ventilator.

More Worries Over Bronchoscopy Results

Brianna and her friend Troy were enjoying a night out at the movies. She would love to see the next Pirates movie coming out, and will be upset to learn that Survivor and Amerian Idol have ended before she could see the finales. We have taped them for her, and I know she will be happy to see who won both.

Yesterday, we had a very anxious morning waiting for the docs to change her to a conventional ventilator. It was supposed to happen at 8 am, but as with most things here, hospital time isn't the same as real time. I found the attending PICU doctor and asked what time Brianna would be switched, since it was already 8:30 am. It was decided to make the change at 9:30 during Brianna's rounds time.

After waiting anxiously outside the PICU, the bone marrow team found us and said she did beautifully. They started her at higher pressures and lots of oxygen, and were able to wean her down quite quickly. It was so obvious she was ready for this change.

When my mom and I walked into her room, it was so peaceful and amazingly quiet - except for the constant, but reassuring beeping of her heart rate on the monitor. The oscillator was extremely loud. It was like having a small engine in the room with a very loud piston, pumping hard and fast. I couldn't believe that the conventional ventilator was on! I also thought it would sound like the heavy breathing Darth Vadar made in Star Wars. Not so. Brianna finally is able to get the rest she needs.

Several people, from the massage therapist to one of the nurses, commented on how much more comfortable Brianna seemed. She was breathing more naturally with the conventional ventilator, didn't have to be paralyzed and did not need as much extra sedation as before. With the osciallator, I don't know anyone who would like to have their chest constantly bouncing from 300 to 600 times a minute to breathe.

We were so pleased with her progress and how well she took to the new ventilator. As the day progressed, it was obvious they could wean her a bit more on the settings. Originally, they left the oscillator in her room just in case she didn't do well. By 1 pm, they knew she didn't need it, and the oscillator was removed.

Also, they decided to do the much-needed CT scans the next morning. They wanted to wait about 24 hours before putting her through that. Well that plan changed when they saw how much better she was doing as the day continued. So Brianna was taken to the CT scanner about 8 pm last night. We couldn't go with her so we went to grab something to eat. When we got back around 9 pm, Brianna was still gone. So we waited and finally heard them coming down the hall pushing Brianna's bed and all her equipment and her loaded IV pole.

The doctor said she did very well and actually got a little angry with them for moving her so much. Brianna gave them some raised eyebrows and grimaces, which told them she wasn't happy. They gave her a little more pain meds and sedation to help her through it. The nurse told us that the actual scan took about three minutes. It was the 45 minutes of preparation beforehand and the 45 minutes or more afterward to untangle lines that took so long.

We could see though that even though the bed was disheveled and her IVs needed to be organized, Brianna was doing really well. So we were content to leave about 9:30 pm and head for the hotel. I called John to let him know that things went well. Soon after was when the bomb was dropped.

About 10 pm, I received a call from Dr. Franzon, the attending PICU doc, that one of Brianna's "quick" tests came back positive from her bronchoscopy. The quick test is when they take some of the fluid they get from the lung, put it on a slide and look at the smear to see if they can identify any of the cells. The bronch was done on Wedsnesday and up to that point everything had been negative. Again, they were looking for bacteria, a virus or fungus. The call was to inform me they found fungal cells on the slide smear, but that they had to continue to grow out the culture to see what it would produce. These are from her "good" left lung.

To say that all the gains we had made that day were completely forgotten is an understatment. It was as if the day hadn't happened and I was punched in the stomach. How could there be fungal cells in the opposite lung when she's on all these high-powered antifungals? All the doctors felt sure what was affecting her lungs now couldn't be fungus. I fell apart after the call, and continue to feel that this is all surreal. So, we wait for the doctors to come speak to us after rounds this morning. And here I am AGAIN asking why can't we get a break?

When we walked into Brianna's room this morning, they had weaned her even more on the ventilator. She's down to 45 percent oxygen - room air is 20 percent - so we're a little closer. They were also able to come down on the pressure and the number of breaths per minute, and her oxygen saturation is hovering around 94. So that pleases me that she seems to be getting better. But from the sound of the preliminary test results, I just don't know what to expect.

John left work this morning and is here at the hospital to find out what is going on and what the docs are going to do about it. From everything we've learned, fungus is aggressive and loves to mangle lung tissue. We can't afford that now. My mom is still here lending support at the hospital. My dad and Trevor are waiting to hear from us. All night I kept waking up, thinking this was all a bad dream and not real. Then I'd realize where I was and that my daughter is still in ICU and may be facing another fungal infection.

Yesterday, Brianna received a beautiful package of vintage looking tags and note cards with images of Paris. It was signed so sweetly with hugs and kisses to her, but it was anonymous. Thank you our secret angel. They are beautiful, with strking ribbons, pretty papers, sparkling crystals and lots of images of the Eiffel Tower. Getting to Paris with Brianna and our family was beginning to be very real for me, especially with the progress made yesterday. Seeing her extubated and on 2 North in the next two weeks was looking like a real possibility. But now my mind is cloudy again.

We are all remaining positive, but my anxeity has heightened ten-fold. We wait for the doctors to determine how real this new threat is to her lungs and to reveal their plans for getting her better. Or, better yet, to hear that this was a false positive and that nothing will grow in the culture. The CT scans of her lungs will give them more clues as to what is really going on in her lungs. No matter, it's obvious there is a real battle going on within Brianna and we continue to pray that she has the strength to stand her ground and fight.

Another Delay in Brianna's Road to Wellness

Brianna (right) is fooling around with her friend Chelsea, who sent these photos to me along with a very sweet comment on the blog. I can't help but cry when I see her having fun with her dear friend, and pray for that day to come again.

Brianna was supposed to be put on a conventional ventilator, but that did not happen. When my mom and I left the hospital yesterday around 6:30 pm, Brianna's ventilator settings were 19 on the MAP, her oxygen was 50 percent and her oxygen saturation was 95. This morning when we walked into the room, her MAP was back up to 20, the oxygen they were giving was 60 percent and her O2 saturation dropped to 89. I was not expecting this at all.

Also, last night they had to put a new naso-gastro tube up through Brianna's nose to her stomach because the one she had got clogged up with a pill they had ground down. When they put the medication in the tube, it turned to a thick gel and wouldn't move. About this time, Brianna started to "wake up" and became very agitated. When she wakes up and is not on the paralytic, she fights the osciallating ventilator. It's not a natural way of breathing, and if she tries to breathe against it, her oxygen saturation drops. We watched it happen a few days ago when her O2 saturation went from 98 to 89 because she was moving her chest up and down and trying to breathe normally.

So why all the drop in her overall lung status? This morning the doctors think it's too much fluid over the past four days, a possible bacterial infection and her will to breathe against the oscillator. (Remember, the oscillator provides 600 tiny breaths a minute sort of like hyper ventilating. Obviously, much different than the regular rise and fall of the chest about 20 times average per minute.)

Over the last few days they allowed her to have a little more fluid to make her kidneys better. Her kidneys started to object on Friday, when her creatnine and Urea Nitrogen (BUN) crept up to a high level. Those numbers indicate how well the kidneys are functioning and when those numbers are high, it means the kidneys are not passing fluid waste as well as they should. It also means that many of the drugs that can damage the kidneys are in her system longer and at higher levels.

The way to heal the kidneys is to give them more fluid. Brianna's been on a Lasix drip ever since she's been in the PICU, and they added another diuretic every 12 hours. To say she was dry is an understatment. Almost every day she would wind up negative on her fluid balance.

During the past four days, she was 500 milliliters positive every day. So over that time, she was two liters positive. Every day I'd walk in and ask how her fluid balance was for the 24-hour period and they'd tell me she was 500 positive, I'd wonder when it would start to affect her lungs. Supposedly, that time came this morning.

In addition, the doctors still feel that she got some sort of ventilator related bacterial infection. They've given her three new antibiotics on top of the Vancomyecin, which kills staph infections. The hope is that these drugs combined with more diuretics should clear her lungs more and get her back on track to a conventional ventilator.

I feel like there is a recorder in my head and it keeps replaying some of these same conversations I've had with the doctors. Before we got to the PICU, Brianna's x-ray started to look bad and the doctors thought it was too much fluid. But that wasn't it and she continued to worsen until she needed to go to the PICU.

They have been testing her C-reactive protein levels in her blood, which are a measure of inflammation in the body. It was 19 on Saturday and has decreased to 16 today. The doctors take this as a sign that whatever she has, it's getting better. But I continue to ask why has she declined in her respiratory status?

I know I have to be thankful for the major gains Brianna has made. And she has made them - going from 36 on the amount of pressure being used to force oxygen into her lungs down to 20 now. But I can't help but be a little gun shy about any signs that she's having more trouble with her lungs. And here we are again with the doctors not really knowing what is causing this and her condition isn't getting better.

I also realize that maybe I've just been here too long. It is now 100 days of hospitalization and one-third of that has been spent with Brianna in the PICU. I think my stamina and strength are almost depleted and I'm wallowing in doubt, fear and anxiety.

I know our call for prayers has been long and loud, but please continue. This has been so difficult for us, and I'm sure it's been difficult for you to read every other day too. And I'm afraid the journey will continue to be long and bumpy. But, we are grateful to all of you who continue to lift us up with your comments to the blog and emails. We are blessed with family, friends and those I have not met - friends of friends - who have sent their well wishes and prayers. We are blessed to have so many people cheering for us.

I pray that tomorrow will bring better news abour her x-rays.

Possible New Infection Shows on X-Ray

Here is Brianna so full of life and goofing around with one of her friends. I've shown many pictures of her to the nurses, so she becomes a real person under all the sedation, tubes and beeping.

We had our patient care meeting on Thursday and it went well. Dr. Cornfield, who is in charge of the PICU and is also a pulmonologist, continues to follow Brianna's case whether he's the attending physician on duty or not. We are so grateful to him for all his expertise. But in the meeting he said that she's doing well considering all that she has going on. But he said there were some storm clouds on the horizon, namely her x-ray from that morning.

The doctors said it looked worse than the one taken on Tuesday. On Sunday, it still wasn't as clear as it was, but it hasn't gotten worse. We're in the same holding pattern and it scares the heck out of me. This is how her whole lung problem began before she had to go to the ICU.

Basically, the x-ray shows an area in the middle of her left lung (the good lung) that is like a focused cloudy area. Lung x-rays should be black where there is air. If there is white, that means either collapse or inflammation from an infection. When she first got to the PICU some four weeks ago, her lung area looked more cloudy all over the lungs not just in one specific part. They called it more of a diffuse pattern, rather than a focal one. On the recent x-ray, they seem to think it may be some type of antibiotic resistent bacteria. So they've switched her antibiotics in hopes it may clear up.

The other theory about her recent x-ray is that some of the white-ish areas are actually collapse. The MAP was turned back up to 20 on Friday, after having been lowered to 15 on Tuesday. Brianna is off the paralytic, and they doctors decided to go up on the sedation, because a MAP of 20 can be uncomfortable and not natural. She did well on the higher settings and in fact her oxgenation was doing really well. Her oxgen saturation jumped up to 98 and they had even turned down both the amount of oxygen they were giving to 55 percent and the amount of nitric oxide to 1 percent. Even though her x-ray was not looking great, clinically she was doing really well.

Her x-ray yesterday didn't look worse, which is a good thing - at least that is what they tell me. Part of her lung may have experienced some collapse because one of the areas in question on the x-ray that was white is now black. However, it wasn't part of the central focal point area. So we continue to wait. My concern is at what point do we wait long enough, and yet not too long before they decide to do a bronchoscopy. They say we're not there yet. Plus, doing a bronchoscopy has its risks.

If you remember, we got down to 15. It may have been too low to continue to keep her lungs expanded. Add the fact that she has a fistula, or hole in her right lung, and the pressure may have even been lower than that. When the pressure gets to 16 or 18 on the mean airway pressure (MAP), a patient is usually switched to a conventional ventilator. The plan remains the same, at least for now. She will be switched to a conventional today.

I'm waiting for the doctors to speak to me after rounds. That's when they all get together and discuss Brianna's current condition and what needs to be done to get her well. Every morning of everyday, we meet with the doctors in the mid-morning to go over what will be done and how she's doing.

Sorry it's been a while, but much has been happening. The emotional roller coaster continues with her good days and not so good ones. Thank you each and everyone of you for your cards, prayers and well wishes. When Brianna is well, I'd love to throw a huge party to thank all of you who keep us in your daily thoughts and prayers and for all who have helped our family.

God bless....Iva

Weaning Continues and Anxiety Increases

Another picture that Brianna took of herself. I love all these little poses. This photo really made me think about my dad and how he teases Brianna by calling her Angelina Jolie. In this picture I can really see the resemblance.

Brianna continues to stay strong. She has been through so much, I cannot even imagine where she is getting her strength and courage. All I can say is your prayers are helping. She is now down to 15 on the mean airway pressure (MAP) and they have begun the process of weaning her off the nitric oxide. This gas allows the oxygen to bind to the red blood cells in the lungs, providing better oxygenation. She has been at 10 percent for a long time and they have weaned her down to one percent in the last two days. It is supposed to be one of the harder things to be weaned from.

She is holding her own, but is certainly not where she should be as far as her oxygen saturation. A small sensor on the tip of her finger measures the amount of oxygen getting to the extremeties. You and I would run about 97 or 98. At this point, she's at 91 and they've had to increase the amount of oxygen she's getting through the ventilatotor to 75 percent. Remember, anything over 60% for a length of time can be toxic to the lungs. So to say my anxiety level is high is an understatement.

Today is the first day since my cold began Saturday that I've been able to spend some time in her room without having to limit it to 10 minutes. I sit in the room and obsess over the numbers blinking on the monitor just above her bed. It's very easy to do when they stare you in the face in bright flourescent colors and beep with every beat of her heart, change of her blood pressure and change in her O2 saturation. I try not to obsess, and the only way I can really cope is by leaving and either sitting outside in the sun or on one of the couches in the waiting areas in the hospital hallways. Just getting busy helps too, like exercising her legs and flexing her feet so she won't lose too much range of motion in her limbs.

I also know it takes her some time to adjust to every little change on her ventilator settings. However, as long as she is in the ICU I'm going to have a hard time.

Last week, I met with another mother whose teenage son had a bone marrow transplant late last year and who had many complications. It's funny how she and I both shared similar experiences with certain residents and doctors - good and bad. It's also good to know that even though they were in the hospital for five months, he is now home, still having to take lots of medications, but getting better.

She was the one who asked about Brianna's transplant. Funny how that has taken a back seast now that she's in the ICU. So speaking of her bone marrow transplant, her white count today was 4.8, her hemoglobin was 11 and she's getting a unit of platelets a day because she's undergoing so much in the ICU.

We have another patient care meeting today and I'm going to mention a few things. Most importantly we want to know the plan even though it all depends on Brianna. Hopefully CT scans will be able to happen soon after she's on the conventional ventilator so we can see what's going on in her lungs.

Another reason for our anxiety is her medical insurance. Something we don't think about is the lifetime limit. For Brianna, it was $2 million and we thought that would easily cover her transplant. At this point the charges are more than $3 million, but of course that doesn't reflect the negotiated rates which are often half. So about two weeks ago I got a call from the hospital's financial counselor who said she's concerned we're going to max out the insurance benefit. She was right. We're getting it lined up, but it's one more stress that we all don't need.

Please continue your prayers for us and send us more healing thoughts. We still have a ways to go before she's off the ventiltor all together. And I won't feel comfortable until I know that her lungs are healed and she doesn't need it anymore. Actually, I won't feel comfortable until she's home with us, all this transplant stuff is behind us and she's living her life as a young adult.

Thank you for all your prayers and lovely emails. We need them so.

More Weaning from the Ventilator

Even though Brianna was to have a quiet weekend of rest, it was a little hectic. She continued at 20 on the ventilator's mean air pressure (MAP), and struggled a bit to keep the carbon dioxide at a normal level. But she managed. However, when she was turned on her stomach Saturday, she must have gotten naucous.

The doctors decided that she wasn't tolerating the naso-gastro tube feeding of a nutritional fluid, so they stopped the feeding. Then, the nurses found that she had thrown up a bit when suctioning the tube. The doctors then decided to put in a tube that bypasses the stomach and sits in the small intestine. They tried to put it in and they had a difficult time. Two x-rays were taken to see if it was in place and it wasn't. So poor Brianna went through the procedure and they had to stop. She got tears in her eyes while they were putting the new tube up through her nose and then down to her GI tract even though she was sedated. Thankfully, they gave her a little more medication.

My mom and dad stayed and made sure Brianna was kept comfortable all weekend. They did a great job alerting the nurses that Brianna had tears. I am so fortunate to have such supportive parents. They sat with Brianna's all weekend, so that I could go home and spend some time with Trevor and John for Mother's Day. Here's a picture of our handsome son. I miss him so much when I'm away for so long.

It was very nice to be home for most of Saturday and Sunday. I was able to leave the hospital Saturday late morning, stop by the store to buy a couple more pair of jeans (I got down to one that fit me okay because I just haven't shopped much), and then headed home. We saw a very funny movie Saturday night, Hot Fuzz. It was part comedy and part murder mystery and had such a great twist. There are a few gross parts, so I wouldn't take little kids. It is an English movie and very different than what's out there. It was a nice escape. Leaving the theater I thought about Brianna.

Going home was bittersweet. I kept thinking about Brianna, wondering how she was doing and missing her. We all thought about her while at home. I was able to grab a few of my art supplies and a journal to try to do a little journaling while I wait for her lungs to recover. And I thought about all those Mothers out there who are celebrating the day with their children and those like us who cannot for the time being.

But over the weekend, I felt a cold coming on. My throat was sore and I was sneezing. Everyone has to wear a mask while in her room. We just can't take any chances. But John and I were with her Sunday night and then left. I made sure I used the hand sanitizer a lot while there. But on Monday morning, our doctor said I shouldn't go in her room. I pray that the time I spent with her on Sunday night didn't cause any harm. She can't afford to catch anything.

Yesterday was a little hard for me, since I couldn't be in the room with her. But I know it was for a good reason. I called the nurse several times throughout the day and talked with our nurse practitioner and the doctors in the morning. Then I left the hospital, just because I didn't want to get anyone else sick in the hospital. I spent the day in my hotel room, working on our hospital bills and talking with the insurance company.

Brianna made more progress yesterday. She got down to 18 on the MAP and now the doctors want her to get down to 16 on the MAP before switching ventilators. Again, this is a PICU attending physician thing. Which ever one is on will determine how far we go down on the MAP. This week, it's Dr. Cornfield who we really respect. He's the medical director of the PICU and a pulmonologist and did the very first bronchoscopy Brianna had. So he's followed us for more than a month and we have asked for his opinion on all that has happened with her lungs.

This morning my cold symptoms have subsided, but I still feel it. So I can be in her room for 10 minutes at a time, with a double mask and after washing my hands up to my elbows. Our wonderful primary care nurse Presley is there today and I know Brianna is in good hands. She is such a great nurse and we feel so lucky to have gotten her early on and for her to sign on as Brianna's primary. Brianna is now down to 17 on the MAP, so every day she continus to be weaned. I thank God for this.

We still have a long way to go to get Brianna well though. Now we will see when she will be put on a conventional ventilator and then be able to be moved for CT scans on her right lung. Another Patient Care Meeting is scheduled for this Thrusday and we'll see if the doctors think it's time to get surgeons involved. Our hope and prayer now is that Brianna won't have to go through another traumatic lung surgery to fix the hole in her lung and the remaining fungal infection. We suspect she may though. This would mean at least another three weeks in the pediatric ICU.

I talk to Brianna and tell her that this is her marathon and she's winning so far. I tell her that she is doing a great job and to continue fighting. We are waiting for her and are here for her, so stay strong. I tell her she can do this and not to give up the fight.

Your prayers and wishes of healing, courage and strength have helped Brianna and our family get through this. Tomorrow will be week 12 after her transplant, which means we will have been here for 94 days. We all can't believe it, and yet it seems like it has been a lifetime. Please continue to pray and send positive thoughts. We haven't reached our destination yet and it will be a while before we do.

Two More Points Needed

I thought you might enjoy seeing Brianna with her friends. She loves to have fun and dress up for Halloween. (I wonder where she got that from?) Here she is with (from left) Chelsea, Nina, and Troy, oh, and our dog Winston. Brianna made her and Chelsea's space helmets from paper mache....imagine that. (For those of you who don't know, I use lots of paper mache in my art.) I miss her smiling face so much.

In my last post, the doctors talked about changing her to a conventional ventilator when the mean air pressure (MAP) was down to 24. After some more discussion, they decided it would be better to wait until it got down to 18. This morning we're at 20, so just a few more points to go. If it doesn't happen today, they will wait until Monday. There are a lot more people around during the week, even though the ICU is well-staffed 24/7.

They have been turning her usually every 24 hours from her stomach to her back and vice versa. She does better with her oxygenation and not so well with her CO2 when she's on her stomach, and then does better with her CO2 and okay with her oxygenation when she's on her back. So this morning while on her stomach for the past 2 days, her CO2 is higher, which affects the pH balance of her body.

Most of us are balanced, but some run alkaline or acidic. If CO2 is not released enough in your lungs it turns into acid. When too much builds up, it starts to damage the organs. Brianna is only slightly acidic and her body has made some adjustments to accomodate for the change in pH. So I will be much happier when she is turned onto her back.

We also had another patient care meeting yesterday that went well. We met with the attending ICU doctor, our bone marrow transplant doctor and nurse pratitioner, Lizzie, and our social worker, Darci. What was discussed was moving her to a conventional ventilator in order to get better diagnostic pictures of her right lung, ultimately to heal her completely.

The difficulty with Brianna's ventilation all stems from the original fungal infection in her right lung. It seems a portion of it has possibly died and now her body is forming scar tissue around it to protect the body from it. But her lung has a hole in it, which makes the pressure being used to ventilate her a little uncertain, or in other words, they're not sure how accurate the numbers are on the ventilator because air is escaping through the hole.

CT scans are needed to better see what is going on in her right lung. And she can't be moved for those scans until she's on a conventional ventilator. So next week, we're hoping that she can be weaned down to 18. They're going to let her rest a bit this weekend, which also makes sense to us. You make progress even when you rest.

Dr. Agarwal, our BMT doctor, asked how I was doing. I had a little bit of an emotional breakdown this morning, just because I miss my daughter. I know she is here, but I sit in her room and think I see her sitting up to say something. But this weekend is also Mother's Day. My dear parents offered to stay at the hospital in order for me to be home with Trevor and John. So we will most likely split our day on Sunday to be with Trevor and then be with Brianna. I thank God that I will be able to celebrate with her. And I know that every day Brianna continues to fight, is another day closer to her getting completely healed.

I also want to show my mother how much she means to me and how supportive she has been and continues to be. I wish you all a Happy Mother's Day. Enjoy the time you have with your children and your parents, because each day is a gift.

Oh, and for those of you who would like to see the pictures of my visit with my PFATTie friends, you can see them on Sandy's blog: www.samiamcreations.blogspot.com. Thank you Sandy.

Big Decisions for Brianna this Week

Like most teens today, Brianna loves playing with her camera and taking pictures of herself. Here's one she took before she was hospitalized. She wanted her hair cut and I think it looks so good this length. She's making progress, but in the meantime, I miss hearing her laugh and seeing her sparkling eyes.

She was turned on her back yesterday afternoon and it seems that this position has some problems. She has a hole in her right lung. It's hard to tell how big or where, but when she's on her back the ventilator settings seem to jump around a lot. It seems that the air is escaping through the hole and then out the chest tube. So that will be discussed in rounds today. We're at a point where if she can be weaned a couple more points down on the MAP (mean air pressure) she can go to a conventional ventilator or a dual ventilator. Some big changes are likely to take place in the next few days. Your positive thoughts and prayers for continual healing for Brianna and for insight for the doctors are appreciated.

Also, I want to thank the owner of the San Francisco Examiner, Philip Anshutz, for his generous offer of having a lung specialist from Denver come and review Brianna's history. John feels so honored to work for him and his company, and I am so grateful for his understanding and willingness to help get Brianna well. We think the doctors listened Dr. Zamora's advice and have been following it. Some of what he advised the doctors here, they had talked about early on, but Brianna was just too unstable. But he did provide some new insight that helped us. With the progress Brianna has made over the last two weeks she's been in the ICU, her lungs may be healed enough for less intensive ventilation.

My brother will come out today and stay for the next couple of days. John was able to come stay with me last night. I miss him and feel so safe and comforted when he's there. He is always there when I need him. My mom was here for the last couple days too, and my dad was here on Saturday. I feel lucky to have such wonderful, caring parents. My family has been so supportive and it will be nice to have my brother here with me. My cousin will be stopping by this afternoon as well. The last time we saw him, we were all at his wedding this past August in Lake Tahoe dancing some Serbian kolos and having a great time. Brianna wants to celebrate like that again, she said weeks ago.

In the next few days, there will be much change here and I will try to let you know as soon as I am able. My days start at 6:15 am, when I get up so that I can be at the hospital by 7:30 am when the nurses change. They work 12-hour shifts, from 7 am/pm to 7:30 pm/am. I get a chance to talk to the night nurse to see how things went and to talk to the day's nurse. Of course, I also am there to stroke my daughter's brow, massage her hands, legs and feet and move her limbs around a bit. Rounds are usually at 9:30 am and then the doctors come talk to me about 10 am. Then I am on the phone to tell John and the family of their report. Then I am in her room again trying to exercise her legs and feet.

I usually slip away for lunch and try to sit outside a bit, to write my blog, make phone calls or sneak in a nap. Then I'm back in her room moving her limbs around and talking to the nurses about how well Brianna's doing. I either stay until 7 pm until the night nurse comes on and I can talk with them for a couple of minutes or we leave around 5:30 for a bite to eat and return by 7:30 pm to talk with the night nurse until 8 pm. Then it's off to the hotel to try and relax, charge up our cell phones and computer and give Trevor a call to see how his day went. We usually get a call from our transplant doctor around 9 pm to let us know if there are any problems or if she's doing okay. Then we try to drift off to sleep and start all over again. They are long days and lately, I've been forgetting what day it is or how long we've really been at the hospital. Time has really stood still for us.

My God sister Melanie, her husband Alan and her son MIcheal have sent Brianna and Trevor gifts. They are such kind and loving people that we really think of as family. In fact, I grew up with Melanie and was so excited when she would stay with us or visit. I also want to say thank you for making this time for Brianna and Trevor a little less traumatic with your kindness. I am sending a big hug to you and look forward to the day when we are all celebrating Brianna's return home together.

So many of you have sent cards and gifts and I'm sorry if we haven't sent thank you's. I know you probably don't expect them, but I want you all to know they do not go unnoticed or unappreciated. Thank you, thank you. When this craziness is over and Brianna is well, I hope to recognize your giving spirit.

God bless...Iva

Second Opinion Brings Hope and Direction

Late last week, my dear friends from far away came to visit us at the hospital. PFATTies Christy, Sandy and Kitty were so sweet in bringing gifts for Brianna and me. They suggested I show more photos of Brianna on the blog, so here's one I thought was sweet. We laughed, cried and shared, and then Kitty treated us to lunch at a local restaurant. I still can't believe they made the trip coming as far away as Oregon and Southern California, then onto Sacramento, and finally driving from there to Palo Alto. I am so glad they did.

Zinnie, another sweet PFATTie (remember, it stands for Primitive Folk Art Tea & Talk on eBay) couldn't make the drive out with them, but included the nicest snow globe gift of a fairy. Sarah, another artist in the group, sent along one of her beautiful collages with all sorts of fun items for Brianna. She will love all of them when she awakes from her long sleep in the ICU. Brianna had said to me before, "Mom, I'm so glad you have such nice friends."

These warm, caring women also told me that a collection has been started for Brianna in the group. As I told them, the words "thank you" just don't seem enough. But I am truly grateful and feel so blessed to have such kind, loving people in our lives. I hugged them for a long time.

My sister also came out and stayed with me for several days after their visit. It was nice having her here with me. She stayed by Brianna's bedside massaging her legs and feet and her back. We are trying to maintain a little of Brianna's range of motion, by bending her legs and flexing her feet and toes. You can imagine the physical therapy she will need to go through after this to get some of her strength and motor abilities back.

All of these visits enabled my parents to head back to their home in Reno for a few days to take care of some business. And it allowed John time to be home with Trevor and to take care of some things there.

I hadn't gotten to the blog in a few days because so much happened late in the week. In addition to the wonderful visits, John and I went through the process of deciding whether Brianna should get another central line. Before she got to the ICU, she had no reason to get an IV. She has a central line near her left clavicle. But when she had surgery the first time and now that she's in the ICU, two IVs were started in her arms. Week by week, each would go bad and couldn't be used. And even through she is making baby steps of progress, the nurses needed more access to her veins. Each time she is poked for another IV, there is a risk of infection. The last IV she had to have started was in her foot.

Each of these additional IVs are called peripheral IVs of PIVs. They differ from a central line in that they only feed into the peripheral veins. Her central line feeds into a large vein in near her heart. She couldn't undergo that procedure again, but there is a process known as a PICC line, or peripheral intravenous central cather. There were so many pros and cons to this procedure it really made me nervous, but in the long run I knew Brianna needed it.

A PICC line is a long catheter that goes into a vein just above the elbow and is pushed up along the vein until it sits in the large vein near her heart. The scary part was that an ultrasound helps locate the vein and then the catheter is fed by feel up and around her arm pit and onto the chest area. When it's complete, an x-ray is taken to ensure that is placed correctly. Most of the time this procedure is done under radiographic floroscopy, in other words, a camera an x-ray machine are used during the whole process to ensure not problems arise. But because Brianna can't be moved, and the mobile floroscopy machine wouldn't fit in her room, it couldn't be used. The PICC nurse assured us that it was done this way all the time, but you can imagine we still were very nervous. Thankfully, everything went well and she won't have to poked for more IV access.

Then on Friday, Philip Anshutz, who owns the newspaper that John works for called with a very generous offer of flying out a premiere pulmonologist to help consult on Brianna's case. This touched our hearts. The hospital that is known to be number one in the nation in pulmonology, or the study and care of lungs, is the National Jewish Hospital in Denver. So it was arranged that he would come out yesterday to review Brianna's care. What he had to say encouraged us, but also left us anxious.

Dr. Martin Zamora heads up the lung transplant unit at NJH. He reviewed Brianna's x-rays and CTs from back before her surgery up to the most recent x-ray that morning. He also talked with the ICU attending physician, asked us some questions and then discussed his thoughts.

Basically, he said that we're going to come to a point when she cannot be weaned off the ventilator. Right now, the ventilator is providing positive pressure in her chest. It's expanding her lungs and allowing the CO2 to escape. It's as if her lungs are two balloons that are continually being inflated and deflated, only super fast because it's oscillating.

She has a chest tube in her right lung area, and some of the pressure of the ventilator is escaping through a hole in her right lung. We suspected this hole some weeks ago. But what will happen is that air pressure will follow the path of least resistance. And what he fears will happen is that we will get to a point on the ventilator when the oxygen being pumped in will not entirely inflate her left good lung. Instead, it will escape out the chest tube and leave part of her lung collapsed.

His suggestion is to give her a few more days of weaning. Get her to a lower number on the pressure meter. Then, use two different ventilators for each lung, that way you can change the pressure in each according to their need. However, he said this can be a very risky procedure because she has to go off the current ventilator AND they need to intubate her again with two tubes. He warned us that she could go into cardiac arrest. Of course this was not what we wanted to hear. He said it would have to be done very quickly in order to keep her oxygen level high. Then you can get into a situation where the tubes are pointing to each other and setting each other off rather than pointing towards the lungs.

Our doctors talked about this dual ventilation early on, but said it was impossible because she was too unstable. That was when she first got to the ICU. Two weeks later, she is at 28 on the MAP, or mean air pressure. If she can be weaned down to 24, this could most likely be a little less risky. He did tell us the fact that she's made progress going from 36 on the MAP down to 28 is good, and he's optimistic that she will come through. She young, strong and her organs are function as they should, except obvioulsy, her lungs. He also said that the docs here are doing exactly what he would do in this case. It's always nice to hear that from a specialist on the outside.

His consult gave us some more insight, but I feel like we're coming to a crossroads again and they always scare me. I'm praying that her progress continues until she is at a safer level before undergoing such a procedure. In fact, she may not have to undergo it at all. But with what Brianna's dealing with in her right lung, it looks like we will have to go through with this at some point. And the sooner she is out of the ICU the better. Her skin is holding up, but one of her ears is getting pretty badly blistered from laying on it a lot. They're looking at ways of correcting this as well.

Please continue to pray for us and for Brianna's lungs to heal. Many of you have sent cards to her in our old room, but now we are in room 2513 in the PICU. I have not opened some of these, so that she and I can open them together. I appreciate all of you who have sent them. Again, we pray not only for Brianna's total healing, but for the doctors and all her medical care team to know just what should be done to get her well.