Monday, April 30, 2007

Week 1 - Wishing for Quicker Healing and Progress

The doctors basically told us the same thing today. Brianna is stable, her organs are functioning well and her blood chemistry and blood gases (the amount of oxygen and CO2 in her blood) look good. This is all good news. My problem is that I want it all faster. I don't want her laying in a hospital ICU bed looking so critical and missing out on life around her. Of course I don't want her intubated either, and we know she must be sedated and paralyzed for the ventilator until her lungs heal. But the fact that she is not getting worse and has made baby steps of progress is encouraging they say. Baby steps, baby does one accept them when time has stopped and when life becomes day to day sometimes hour by hour, rather than week by week and month by month?

I am reminded though by John, my mother and my friend Colleen (who stayed with me today) that I need to be glad for all the positives. And I am. It's just our whole situation that makes me heartsick.

But today they decided to turn Brianna onto her back again and she has done well. The plan is to turn her every 24 hours, and it should not be as difficult on her lungs as the first time she was turned. It will also allow her lungs to continue to open in the hopes of gaining ground.

It is going to be a very slow process, and I am prepared to give up as many months or years as necessary to see her recover. It is hard on the whole family though. John stayed by Brianna's bedside all day yesterday so that I could go home, pet the dog, see Trevor, be in our house and do some "normal" things. I fiddled with the automatic sprinkler system with my dad and mom and tried to find a sprinkler head that is lost among the tall backyard grass. Trevor was all smiles and it was so nice to spend more time with him in just a few days.

It's strange to go home and have it not feel like home anymore. It's just a place to park my stuff for a few hours. In fact, about a week and a half ago, I had to write my address down on something and I had to stop and think of what it was. For a few minutes, I had forgotten my home address.

This has been a long journey so far, and it will continue to be one for many months to come. Brianna will be like Rip Van Winkle when she wakes, so much time will have passed. But we are content for now with the baby steps of progress she has made, no matter how small. She continues to get weekly leg massages from the therapists, and we play music for her, talk to her and touch her. And we are glad to think that she is dreaming and pain free while her lungs heal.

Each day is a gift.

Sunday, April 29, 2007

Still No Idea What Caused Brianna's Lung Problems

So far, the cultures taken from Brianna's bronchoscopy last Monday are negative. Nothing has grown from them, but they are allowing them another 4 to 7 days to be sure. A bacterial infection has been ruled out, so it's either viral or fungal. We pray it is not fungal. We may never know.

Brianna's weaning process plateaued on Friday. Her oxygen saturation - the amount of oxygen getting to her tissues - dropped slightly and it was obvious that no other areas of her lungs were going to open up. So on Saturday morning the new attending ICU doctor suggested turning her onto her stomach.

This process is known as "proning" and it will allow some of those air sacs, or alveoli, at the back of her lungs and behind her heart to open. Because she had been laying on her back for almost five days, the thinking is to turn her on her stomach to take pressure off the back of her lungs and let the ventilator open the passageways. This sounds so archaic and simple, but as my husband says, "They've been mending broken arms the same way for many years, it's just the process that has changed." And so it is with opening up those airways in someone with respiratory distress.

Last night the doctor called us at 10:30pm and our hearts dropped. But she was calling with news that turning Brianna may have helped. They had to go higher on the oxygen - up to 80% - and higher on the ventilator assistance. But they said that was to be expected until those air sacs popped open.

About 10 am this morning, their theory began to materialize. Her oxygen saturation increased even though they had gone down on the amount of oxygen given (66% - which is less toxic to the lungs). So we are hopeful this will continue to work. They plan on turning her everyday so she is on her back for 24 hours and then on her stomach. This will also help with her skin so that she doesn't get any sores from laying in one position too much. This is obviously not a cure though.

We are are convinced she had some sort of infection, but frustrated that no cause can be found. The doctors don't believe it's idiopathic pneumonia syndrome, or it's not a classic case of it, which relieves us. If it was, they said, she'd be getting worse. As I have said before, if a viral infection is the cause, it may take weeks and months before she will get better. That's because her immune system must still be surpressed due to the transplant. The type of white cells needed to fight an invading virus is a T-cell, and her new marrow won't produce those in any significant number for a while. We don't want any of the marrow donor's T-cells getting out of hand either because they could cause graft-versus-host disease.

So we are at a stand still and praying hard throughout the day that Brianna continues to fight and overcome this. We also pray that the doctors have the insight to know what should be done in order to cure her sick lungs. She's on all sorts of medications for the fungal infection she has in her right lung, and she's on antibiotics and an anti-viral for her left lung. It may just be a matter of time and we continue to pray that she holds out and stays strong while going through this. We are on the worst kind of emotional roller coster imaginable. We are thankful she is given a drug to sedate her and make her forget this, so she won't remember this time at all.

Thank you again for your love, support and prayers. Also, we appreciate all our friends who have asked their congregations to pray and who have requested prayers for the sick from the sisterhoods and brotherhoods of various churches. Our sweet 17-year-old Brianna desperately needs healing thoughts and prayers. And, finally, thank you for the Bible verses some of you have sent. They help give us strength and encouragement as we stumble along in the dark on this journey.

Friday, April 27, 2007

A Step Forward, A Step Back

In talking with the doctors today, they said that they tried to continue to wean her off the ventilator, but her lungs said too much. So they had to back up a little. As they told us it might be two steps forward, one step back. This is just too hard for me to hear.

I asked how long can someone survive on a ventilator like this and one doctor said for months. I pray Brianna gets better before that. She already got a sore on the left side of her head from laying on that side for a day and a half. She has no skin break down anywhere else from laying all the time, and I want to make sure it stays that way.

I think some of the doctors are convinced that this is another fungal infection. My prayer is that it's not and it's something that can be treated. So far though, bacterial has been ruled out. We should know more today.

John and I are staying at the Ronald McDonald house, where the transplant kids and their parents stay after they're discharged. It seems like we're the only ones there, except one other family. I recognize the mother and her young son from our time on 2 north. I have to admit, that's hard to see them when I keep thinking that instead of Brianna and I there together, it's John and I and she's in the ICU.

Brianna's friends Chelsea and Nina have sent posts, and they are so sweet! Oh, how I wish Brianna was with you both at a concert or having fun. I read your notes to her and hope that she hears them and continues fighting. Also, Brianna never got a chance to thank her friend Troy for the great gifts he sent. Troy I know she loved everything you sent and laughed at the book you got about being a Republican millionaire. Thank you for brightening her day a week or so ago before all this.

Trevor is coming today, but I don't want him to see his sister in this state. It would haunt anyone for a very long time. I will try to spend some time with him, since we've been so consumed with getting Brianna well. My dad will be here again to talk to Brianna. John has been here in the mornings, going to work and then coming back around 5:30 pm. It's so hard for him to work while thinking about her.

Thank you all for your emails and posts. Pray very hard for us and keep sending your thoughts of well-being. Time is standing still it seems, and I want to fast forward to the day when Brianna is laughing and joking with us, while Winston our dog is by her side.

Thursday, April 26, 2007

Baby Steps While Brianna Hangs On

I am sitting near the foot of my daughter's bed in the pediatric ICU watching her. Although they assure me she is "sleeping" peacefully, it does not look like it. Her chest is palpitating up and down extremely fast, approximately 600 times per minute. Her eyes don't see us, but they are not fully closed and she has a gel that acts as tears in them. You cannot imagine the number of tubes that are trailing to her body and connected to her. This time is very different than when we were in the ICU before. This time she needs the ventilator to breath - before it was used in the hopes of opening up her right lung more.

Brianna has been in the Pediatric ICU (PICU) since Monday, and so far they've made a little progress towards getting her oxygen requirements under control. As I mentioned earlier, she's on an oscillating ventilator that pumps 600 times per minute little puffs into her lungs to keep all the tiny air sacs open at all times. The issue is making sure that the CO2 in her system gets expelled correctly. If it builds up in the body it turns to acid, and that is detrimental to the organs. So the PICU doctors are pleased that they've been able to decrease the amount of oxygen she's getting. She was at 75%, which is toxic to the lungs. Anything below 60% is much more tolerable by the body.

They were ultimately able to wean her down to 59% oxygen and they've been slowly weaning her down from the ventilator. Her MAP number (a figure that is calculated from several numbers) was initially at 35. They've moved down to 31. When you're at 15 you can go to a conventional ventilator, when the MAP is at 7 or 8, you can be extubated. We've got a little ways to go.

They keep telling us that we're making baby steps in the right direction. I am okay with that. But I want giant leaps in the right direction. At this rate, she'll be in the ICU for weeks. This is so hard to handle. Among all the things I worry about, is her skin. She has a small abrasion on the side of her head where she was laying. Your body was not meant to lay in bed all day so sores on pressure points become an issue.

Of course, our biggest fears come with the diagnosis of what is attacking her left lung. So far, all the "quick" tests from the bronchoscopy have come up negative for bacteria, the five most common viruses and fungal. But the docs say that it will take seveal days for the cultures to grow. That's when the actually put a tiny piece of what they took from her lung into a petri dish and let it grow. If nothing grows, then she doesn't have that. If something get the idea.

At this point, she is negative for one virus, CMV, and it looks like it's negative on the bacterial. The worst diagnosis would be fungal, because she's been on three antifungals for weeks. If fungus can still grow with all those medicines in her body, then nothing can stop it.

The worry is that this may be viral and if so, there is really no medicine that can be given to fight it. We have to wait until Brianna's body can build up T-cells, or antibodies, to the virus. This could take weeks, if at all, because she is immune suppressed. Her T-cells are purposely being kept at a minimum to ward of graft-versus-host disease (GVHD).

The doctors also tell us that we may never know what caused this. There are two other diagnoses- idiosyncratic pneumonia syndrome (a form of GVHD) and alluvial hemorrage - but neither fits just right and the treatment means steroids. We've been off steroids for a while because they suppress the white count and neutriphils which fight the fungal infection in her right lung.

"Be happy with baby steps," we are told. We are positive and yet we're still holding our breath until all the cultures come back negative.

I am playing soothing music for Brianna, and we are talking to her. My mom and dad have come to read to her and call her their little "teeny bopper," a pet name my dad came up with long ago for her. We hold her hand, rub her arms and feet. Although she is on a paralytic medicine (so she doesn't move for the oscillating ventilator), pain medication and two meds to keep her sedated, we are told that she can hear us. I know she is still in the body I see laying on the bed, and so I told her about American Idol for the past two nights.

On the door leaving the room, I've taped the picture (above) of her smiling face while being licked in the ear by our dog Winston. Everyone loves it and comments what a great picture. I put it there to remind everyone who cares for her and comes in to check her that there is a bubbly teenage girl inside waiting to get out and live life to the fullest again. We just pray that her lungs heal soon and she can be on her way again to recovery.

I cannot tell you how much all your emails mean to us. They are beautiful and speak of lots of prayers from people all over the country. Thank you to everyone. This is such a tiring ordeal and your warmth and caring thoughts and prayers carry us far.

Tuesday, April 24, 2007

Brianna Fights for her Life in Pediatric Intensive Care Unit

Our dear sweet daughter is back in the pediatric ICU fighting to breathe. It is so hard to see her in such critical condition. Please send your prayers and thoughts of healing.

Yesterday morning it was apparent Brianna was not getting better. Her breathing was worse, and she was so weak, she could barely sit up. The doctors said she needed to go to the ICU, have the bronchoscopy to determine what is attacking her lung and be intubated. I knew that it had to be done, because the medicines they were giving her weren't working.

Before all this happened, we had planned for my mom to come and spend the day with us at the hospital. I thank God she was there for me and that John soon followed from work. Brianna sat up on the edge of her bed and leaned sideways on me, then my mom sat down and she leaned on her. It was difficult for her to talk with all the pressure of oxygen being blown into her mouth and nose, but she told us that when she's well she wants to go to a spa and get a massage and have her nails done. She also asked if I had been crying and I said yes, that it was so hard to see her like this. That was true, but I was actually very afraid of what might happen.

I kept positive thoughts in my mind and said prayers all night, but she still wasn't better. I knew that the ICU was the next step. She was moved from the 2North transplant floor to the ICU yesterday afternoon and they decided to intubate her immediately. she was having a very tough time with the oxygen supply they provided on the short trip between units. We waited anxiously, and while we waited, we had to pack up our stuff again and move it out of the room and into my car. When we got back the doctors came out and told us she was stable and not feeling any pain associated with having the tube down her throat and into her lungs.

About 5:30 pm, she had the bronchoscopy. They put a tiny camera, or scope, down into her left lung and the doctor immediately saw that the fluid in her lung was actually blood. She is bleeding inside her lungs. So he said he cleaned it up and when into the right lung to the area with the fungal infection. He said that as he went into one of her bronchial tubes you can see that it's collapsed and breaks up easily, that there is most likely some dead tissue there. This is not surprising to us because of the aspergillus. He was able to get lots of samples and took the directly to the lab. It will take 24 to 48 hours before we know what is attacking her lungs. In the meantime, Brianna has to continue fighting in order to stay with us.

We got a hotel and after seeing her in the ICU, I just fell apart. I thought I could handle it because we had been in the ICU before, but you never get used to seeing your child so critical. We went to the hotel to get some much needed rest. My mom stayed the night so John could go home and get clothes for the next few days. It may be weeks, we realize, but we're praying that it's only a few days that she'll be so critical.

Last night I didn't get any phone calls, so I assumed Brianna was stable. So when I got to her room the next morning, I saw that she's on a different kind of ventilator. Her chest was being pumped super fast by an oscillating ventilator that pushes air into her lungs and extracts it so fast, it's like 600 breaths a minute. It is used to better oxygenate the body. Even though she was getting 100 percent oxygen, her body was showing that it was only absorbing 60 percent. That began to drop around midnight, so they switched her to this new ventilator. And in order to do that, she has to have an IV drip of a drug that paralyzes her. Every so often the nurse has to check her to ensure that she is totally paralyzed in order for her lungs to accept this the ventilation cycles.

Today's nurse said I assume they called you to tell you of this change, and of course I got no call. I had made sure they had my cell phone number and wrote it down on a card and taped it to her chart, and yet I still got no call. This I would deal with in our Patient Care Meeting scheduled for 11 am today.

So I asked about pain management and the nurse said that she is on her usual pain medicine and the only way to tell if she's beginning to feel pain is to watch her vitals. If her blood pressure begins to increase, and her heart rate begins to increase, then she's starting to "wake up" and feel pain. Then she's given more pain medicine.

I have no words to express how I feel, how sad we are that she is in this position and that the pulmonologist just stopped by to say the odds are not with her, but that it's up to the individual to determine who survives. This is the hardest thing we've ever done, mentally and physically. You start second guessing yourself and saying if only we had done this sooner, or gone to this hospital instead or pushed the doctors to do this or that quicker.

We are desperate to have our daughter back and on the road to recovery. I dream of the days when Brianna and I shopping together, when the family is together enjoying a fire in the backyard and laughing. And I dream of the days when we will be shopping in Paris on her Make-A-Wish trip. Sometimes I think this isn't real and just a nightmare. Then I wake up and realize this is all real.

Please pray for Brianna's health, meditate on it, and keep her in your thoughts. As I said, we are desperate to have her back.

Sunday, April 22, 2007

Pneumonia Causes Difficult Breathing, Machine Needed to Help

It's been a week since Brianna's breathing became labored and it has still not gotten better. The doctors think she somehow got a viral infection that may have turned into a bacterial infection. She had some high grade fevers early in the week and once they switched around her antibiotics, her body responded with no more fevers. However, the lung x-rays showed lots of fluid build up inside both lungs, which made her breathing very difficult.

She was able to use a nasal canella (sp?), and then a non-rebreather mask with 20% oxygen added. But on Wednesday, it became apparent that wasn't enough. That's when she had to go on a positive air pressure machine (BiPap) - one step away from being intibated. Brianna's lungs are expanded with positive air pressure, in the hopes of keeping those lower lobes open and the air passageways cleared. The air movement can help also dry out her lungs.

Breathing on one of these is very cumbersome and it makes Brianna very anxious. She says she doesn't know when to breathe. What she mostly says is, "I just want to be normal." It's so hard to see her on this machine and struggling to get comfortable. She has no mobility with it either because it's hooked up to the oxygen in the room. You can only go so far. You can hear the air being forced into her and see her chest rise with it. It's a blast of air and a hole on the front of the mask is constantly blowing air out in front of her. These blasts of air make her very cold.

Yesterdays x-ray showed some improvement in her lung, but by the end of the night she was having trouble again. The reason is she was very dehyrdated, which is what they wanted, but then by the end of the 24 hour period, she had almost a liter of extra fluid on her. And where did it go? Her lungs. You can also see it in her ankles, which are very swollen, and other places. But she is still a lot leaner than she was a few days ago.

Thankfully, she's had no fevers for the past day and a half, a good sign. This whole ordeal really tires her out. When you're laboring to breathe it takes a toll on your energy. She heaves her chest just sitting. So she sleeps a lot.

Our anxiety level is high, as you can imagine. In transplant, the docs tell me, the lungs come first when treating patients. As Brianna knows, the feeling of not being able to catch your breath is scary. Another reason for my nervousness (other than this whole situation) is that I feel as confident with what's being done with her chest tube suction. The tube drains to an enclosed collection system to avoid infection. But, no one seems to know much about the system and the suction level settings. Add the fact that she's on the BiPap with all this pressure being pumped into her lungs and it really complicates it.

The daytime, Monday through Friday doctors are confident, and really don't ask questions about it. If they have one, the contact the right person. But at night and on the weekends, we get all residents and nurses asking people in other departments about the settings and how much suction should it be on and what about the water level in the collection system and the amount of bubbling it makes, and so on. Then residents come in saying we need chest x-rays to make sure she doesn't have air leaking back into the lung from her chest tube. It's a horrible experience for Brianna and for me to manage and watch. Several times I've had to demand that they call our daytime nurse pratitioner before they do something and have requested they call the cardiovascular ICU doctor to come in to ensure everything is set up right. We've had the thoracic surgeons tell me one thing, nurses who've dealt with these tell us another thing and then the CV ICU docs tell us something else. And this is Stanford's children's hospital! It's our daughter's right lung they're fooling with here, and I want to feel like it's being taking care of with kidd gloves!

Brianna's white count is still good at 7.4, but her platelets and red blood cells still don't seem to have come in. Or at least if they have, it's so slight that it's hard to notice. The chicken pox virus is clearing, and they had switched her to the pill form of treatment. However, she got several more red dots yesterday which meant she had to go on the IV fluid type again. That's a lot of fluid to add - a lot of fluid means wetter lungs - thus difficulty breathing. This could be part of the problem with her lungs worsening last night, after a Saturday morning x-ray that showed the lungs clearing more. Two steps forward, one step back.

I continue to send postive thoughts to Brianna. At night, I lay on my bed only 6 feet from her and pray for healing and send thoughts of clear lungs. I am trying to be a lightening rod for good and healing. We take one day at a time, and I know we're turning a corner soon for her getting out of the hospital and on her way back to being a normal teenage girl. That's what I have to believe and it will come true.

At 7:30 pm, John picked up my dear friend Alissa from the airport earlier in the week and drove her to us here. She came from Memphis and visited me for the past several days. It was so nice having someone around during the day to talk to about the ups and downs of this. She used to be a nurse, so she is a very caring person and told me stories about how she'd help her patients get well. Mostly she listened, hugged me, helped me with Brianna and watched our typical day. She brought some beautiful gifts for Brianna and Michael, her son who is the same age as Brianna, gave her a card and bought Trevor a skateboarding t-shirt. Brianna asked her if we could visit her in Memphis - we used to live right across the street. She said she wants to sit by her pool in their beautiful backyard. Alissa of course invited us for anytime and for as long as we want. I have some amazing friends. We went to dinner several times and made a toast to the day when we all will be lounging by their pool and our only worry is what to have for lunch.

Tuesday, April 17, 2007

Another Setback: Why Can't We Get a Break?

Brianna had a good day Saturday and visited with Trevor, John and me. It was nice to just sit around and talk about "normal" stuff - school, movies, our dog and such. Then Saturday night Brianna's body began to hold onto water. Actually, water was seeping out of her vascular system into other parts of the body. She began coughing more and by Sunday it was apparent that both lungs were getting some fluid built up around them and that there is some fluid inside her good left lung. At one point, she had four liters of excess water that her body was holding onto, even with some diuretics. Again, it wasn't in her system, but is leaking out of her cells into other parts of the body.

All this excess fluid meant she began coughing more and was having trouble breathing. So she has had to have oxygen and last night, needed an oxygen mask and a higher rate of oxygen. Plus, she's been having slight fevers for the past few days, but last night it went to 39.1 Celsius (a fever is considered 38 cel.) - I forgot what it translates to in Fahrenheit.

It just seems that whenever things seem to be heading up, we get hit with another setback. And her poor body is just being hit with so much. She's fighting the chickenpox re-activation virus, the fungal infection, a chest tube, too much fluid and yet she's very thirsty, coughing, not enough oxygen, menustration and now possibly another infection - bacterial this time. The doctors say that a bacterial infection may be the culprit to all this excess fluid. But yesterday and last night she was given three doses of a broad spectrum antibiotic and no change - in fact higher fever. So they've added another antibiotic to ensure that they've covered everything, including Staph. Because she has an IV in one arm and a chest tube, a Staph infection could be very likely. Again, we won't know until we see if the antibiotics work later today.

I pray so hard every night and I try not to cry, but there are just so many bumps. Brianna is so strong-willed and determined and I know she'll perservere, but why does it have to be so damn hard?

Now we are told that they may not be able to put in a smaller chest tube, because for obvious reasons, they don't want kids undergoing surgery who are having respiratory problems. Why can't we get a break? It seems that it's two steps forward, one step step forward, two steps back. So the thoracic surgeons said that an anticoagulant should be put in the tube only to ensure that it's draining correctly. That will happen later today also.

Brianna said this morning that she thinks her body is giving up. I told her it seems that way because she has a high fever - the highest she's had since this all began. And she hardly slept last night. From 11:30 pm to 5:30 am, she was up every hour coughing and going to the bathroom. Sleeping upright, with an oxygen mask and a chest tube sticking out your side is not comfortable either. Even though I tried to sleep with earplugs knowing our wonderful night nurse Angela is here to take care of Brianna, I just couldn't drift off.

My strength is waining and I hate seeing her go through all this. It's a good thing my husband and dear friend Alissa are coming tonight. They will help me remain positive, upbeat and strong for Brianna. I wish I could give Brianna a break and take some of the load she's carrying.

I seem to end all of my posts with a request for positive thoughts of healing and for prayers. I am sincere when I ask, and I know there are a great many people out there who are with us in this and keeping us in their daily devotionals and meditations. We need them ever so much.

Friday, April 13, 2007

No Surgery Yet, Chicken Pox Virus Re-Activates & Better X-ray

Yesterday afternoon, the doctors decided surgery to replace Brianna's current two chest tubes with one smaller one would not be a good idea today. They were sure the chicken pox virus had re-activated because the small blisters on her upper back, her low immune system and the trauma of surgery. It was confirmed by the lab's report today.

When it reactivates, it's shingles and many people get it when they are run down (low immune system) and stressed. It's also not surprising that it re-activated, because the virus has settled in the nerves on her right upper side, which is the same area where she had surgery. Another clue is that they stop at the spine and only affect one side of the body.

Surgery was delayed to ensure the virus wouldn't enter the inside of her chest. However, the thoracic surgeon/fellow (not a resident) did come by and removed the chest tube that lead to the back of her lung area. That was painful for her, but at least now she only has to deal with one until the surgery next week. She squeezed my hand tightly and did an awesome job controlling her coughing.

She's on acyclovir by IV, which will control the virus in the next five to seven days. So they are scheduling the surgery for next Thursday or Friday. Brianna will have a smaller tube inserted to reduce the risk of infection and to enable her to move a around easier. She does not like all that is happening to her, but is so compliant. Even if it hurts or is uncomfortable, she says, "Okay, what ever, let's just get it over with." She grits her teeth, pushes her pain medicine button for an extra dose and says I'm ready. She is so strong and determined.

The best news the doctors gave us was her chest x-ray yesterday showed that more of her upper lobe cleared and that even some of the lower lobe, which was totally collapsed, had opened. This was so encouraging that we are on the right road to getting her well.

However, a few days ago she was very down and cried saying this was too hard for her. That her body was so weak and she had never felt this way before. In fact, she hasn't eaten much at all in 8 days and has been in bed for almost a week - getting up only to use the bedside commode. She had major surgery and she shakes with fatigue when she gets up. (For those who know us, she was already skinny, but her legs are really thin now!) She's been put on nutrition IV, total parental nutrition, over night so she can eat during the day. If she doesn't, she'll at least get nutrition at night.

I comforted her and told her she just went through major surgery (just so you know - they cut through five layers of muscle just under the shoulder blade to get to the lung area). That it was natural for anyone to be feeling weak, shaky and just like they've been hit by a truck. Especially, when you add the fact that she really hasn't gotten a full nights rest in two months. I also said that she would get stronger as each day went by and each time she got up. I just don't like seeing her unhappy!

But she calmed down and actually got a lot of rest yesterday. She was a little stronger today and had a homemade ICEE - Italian orange ice, cranberry juice and ice cubes. She had been craving flaming hot Cheetos while in the ICU - but I could only find crunchy Cheetos. She only got about 20 down before she was full.

Also our TV was not working in our new room and my wonderful husband called the CEO of the hospital. It didn't take many emails and phone calls to explain what we've been through and how long we'd be here before he agreed we should be first in line to get a new TV. Around noon, Engineering showed up with a new television and the CEO's assistant brought a portable DVD player for us. Everything works fine and now Brianna and I can watch American Idol, Survivor and some of our other favorite shows and DVDs.

I have to say we've been blessed with so many friends. Alissa, one of my best friends from Memphis who I miss very much, will be flying out next week to spend a few days here. Her support will help me be strong for Brianna. And today I got a call from Christy, a dear friend from a group I'm in - Primitive Folk Art Tea & Talk on eBay. She said some of the members will fly in to see me around the beginning of May. I am just speechless with this kind of support and caring. I cried when I talked with both friends. We feel so lucky to be surrounded with such love not only from our family, but also from such generous friends. I am looking forward to seeing them.

Brianna and I will be here for possibly another two months. We still have a long way to go, but the new therapies are already providing some promising results. Thank you to everyone who has helped us in the past two months and continue to everyday.

Thursday, April 12, 2007

Out of Cardiovascular ICU, Back on LPCH 2 North

A lot has happened since Monday, as you can imagine. Everyday brings something new, sometimes good and sometimes bad. But we are finally out of the ICU and back in 2North, this time in room 2341. Brianna is undergoing some new therapies, will be having surgery again tomorrow and we are anxiously holding our breath about a rash she is starting to form on her back.

On Tuesday, we were at a crossroads in Brianna's treatment. Questions, ideas and theories were thrown around by the doctors to find the best way to save her right lung. The top of the three lobes on the right is definitely getting air and has even opened up a bit more since after surgery. This is good. But the two lower lobes are still showing up as collapsed. Our thoughts were to remove them, since people can function just fine with two less lobes. However, because she has an active infection, that area would fill with fluid - most likely also infected. The other thing that the doctors quoted to us was "Nature abhors a vacuum." Which means that empty area in her chest would most assuredly fill with fluid.

So what to do? Because we couldn't stay in the ICU with her, John and I had a hotel nearby. We would go to it and try to figure out the safest, best approach that would not only destroy the fungus growing in her lung, but also save her lung. I realized that after two nights of uninterrupted sleep, I was beginning to think more clearly. I was no longer an emotional wreck, but a parent who could come up with some rational ideas to get Brianna well. We also hadn't heard any ideas from the doctors that didn't have some level of high risk involved.

When we I met with the doctors next, finally they had thought outside the box and come up with a relatively safe treatment alternative. It could possibly save her entire lung and rid her of the aspergillus.

Our bone marrow transplant team consulted with the medical director of infectious disease/BMT on the adult BMT side of Stanford, and they came up with a plan we feel is very promising. They discussed using the two chest tubes currently in Brianna to administer a very strong anti-fungal directly into the space between the lung and her chest wall. This space, or the pleura, is not fed by the blood vessels. Any intervenous anti-fungals she gets won't penetrate that area very well. Flushing the outside of her lung with the medicine, in this case the powerful amphotecerin B, will ensure that it is thoroughly covered - inside and out. This treatment has been done on several adult patients on the Stanford side of the hospital and was successful. So there is hope that her lung and it's three lobes could heal with this treatment.

For her, the first time the doctor injected it into her chest tube, she coughed a lot and felt pressure on her chest. That's because they used a large amount and it compressed her lung making her feel like she couldn't breathe. She also felt like she tasted it a bit and that's because they removed several layers of scar tissue from around each lobe. The amphotecerin was absorbed by the lung capillaries and most likely absorbed into the lung. The second treatment yesterday went better because they used a smaller amount, but left it in for 10 minutes rather than letting it drain out right away the day before. After they unclamped the tube, about half of it drained and the rest trickled out over the next few hours.

Throughout this, Brianna is heavily sedated. For those of you who know her, she is very grossed out by all of this medical stuff, let alone chest tubes and such. So she is kept very comfortable and pain free, most of the time sleeping. Tomorrow she will undergo surgery again to remove the rigid tubes she has in the front and back of her lung area to have two smaller, more flexible ones put in. Infection is the big risk with all of this, so everyone must wear a mask now in her room and a system will be in place so that the tubes are enclosed. They don't want any bacteria to get up into her chest.

This will be a very long process, and we're told to expect another two months in the hospital. If you or someone you know has had to fight toe nail fungus, you may know it takes a long time to eradicate it. Fungus in the lung is no different. Now this doesn't mean she may not have a lobe removed down the road, but until she has this infection and until it is gone, that surgery can't happen.

As if Brianna's body hasn't had enough stress put on it, she may be coming down with a re-activation of the chicken pox virus on her back because of her immune suppression. Instead of chicken pox though, it returns as shingles. Once you've had the chicken pox, the virus resides in your body forever usually in one area and on one side of your spine. It looks like for our sweetheart, the virus settled on the nerve ending's that wrap around the chest on her right side - the same side as her surgery. They've cultured it and we should get some news tonight. But the treatment is an IV medicine that is hard on the kidneys - along with all the other IV meds she's getting that are hard on the kidneys. Thankfully, hers are working fine, but a watchful eye will be on them to ensure they stay that way.

So last night, we were moved back to the transplant floor on 2 North. Of course, it didn't happen until 9 pm and we were up almost all night with various issues. The two additional IVs that were put into each of her arms during surgery and her stay in ICU both went bad. They had to be removed and a new one put in on another area of her arm. Then the resident and fellow came in to culture the rash on her back and then, when Brianna coughed, air was escaping from the incision where the chest tube enters her body. So another x-ray was taken to ensure air was entering her chest. That could collapse a lung and then there's the serious infection risk. Nothing should be going in her chest unless it's sterile.

Another dressing change was needed of the surgery area, a painful experience for her. So by the time we actually went to "bed" it was 4 am. Thank goodness I had gotten three nights full rest at the nearby hotel. Still I'm pretty tired having gotten up at 7:30 am. Can you imagine how exhausted Brianna must be? Every hour, someone comes in to talk about her treatment, check her vitals, do antoher x-ray, discuss her nutritional habits, take a blood sample, and the list goes on. She hardly gets a chance to really sleep.

Everyone says she's a trooper - and I know I've already said this - but she is much, much more than that. I have no words to describe how amazing she is, and the kind of strength she has to endure all these procedures.

We've gotten lots of letters from my PFATTie friends...a talented group of women artists across the country that I feel honored to have befriended. And all the posts from family and friends are so caring and helpful. But I really couldn't face the past five days without my husband, whom I'm so lucky to have. Trevor misses his sister much and she talks in her sleep to him while she's under lots of her pain medicine. I miss our home, and being a family, with our children together, under one roof, and our dog sleeping at our feet. Don't take anything for granted, especially your family. Every day is a gift.

We are thankful for your continued thoughts and prayers.

Monday, April 9, 2007

Day 2 in the Cardiovascular ICU and Brianna Better

All of your posts of prayers and healing thoughts help us through these trying days. Although I cannot read them to Brianna yet, I plan on it today. She too gets strength from all of your emails and posts.

Easter for us was really spent bedside with Brianna. She didn't know what day it was and the only indication was a cute little bunny and basket the ICU left for her and later that day, two more Easter baskets from the nurses on 2 north. A note came with it that said, "We miss you Brianna!" When we saw them, we got teary-eyed about their caring so much for her. She has touched the hearts of many people around her at the hospital and we are so proud to be her parents. We thank God for her strong-willed nature, because that has helped her through all of this.

Yesterday, Brianna slept most of the day until late afternoon. A CT scan was ordered in the morning and being that it was Sunday lots of people had to be called in to get it done. At 5 pm, she was taken down to the first floor of the Stanford side of the hospital for the CT. The doctors wanted to get a clear picture of her lungs while she was still on the ventilator. Although she was using it minimally, the more air in her lungs the better the picture. Once the CT was taken her breathing tube could be removed.

Taking patients off ventilators is a tricky thing. They must be awake enough to breath and cough, and yet they shouldn't be too awake that they are in pain. So it took about four hours after the CT before her sleepy medications wore off and about 10 pm the process of removing the tube started. It is a terrible process to watch your child go through and for any of you who have been through this, I just can't imagine. She was in obvious distress. Who wouldn't be with a tube going down your windpipe, blocking your vocal cords, gagging you, but allowing you to breathe?

But like the strong woman that she is, she did everything the nurses and respiratory therapists asked of her. Of course, we were annoyed because she was wincing from the feeling of the tube, trying to cough it out and the therapists is asking for a longer suction tube - which took a few minutes to get. At these times, a few minutes to Brianna is like an eternity. We understood why most of the time they don't allow parents in the room during this process, however we were able to stay. John almost lost it with them asking why they weren't prepared, when they knew they had a 17-year-old who needed adult size equipment rather than a baby and the too small equipment they had.

Once the tube was removed, Brianna was so much more comfortable. She was whispering to us about what she needed and we were so relieved to see her looking more like herself.

The official read of the CT scan will be done this morning, but we were able to see the pictures last night. And we were so happy to see that her upper lobe had opened up significantly. Her two lower lobes, however were still collapsed, and possible deteriorated by the fungal infection. We won't know for sure for some weeks, but Brianna may have to go through this surgery again to remove one or both of the two lower lobes. At this point, only time will tell, but our dream would be that at least one more opens. Also, we just hope and pray that the area around her lungs does not fill up with fluid again. It won't for now because she has the chest tubes, but those should be coming out some time this week.

The nurses will be making Brianna cough and use the breathing incentive barometer to ensure that her lungs function well. THey will be getting her up and walking today too. As long as she is on her pain medication and with the will and determination she has, we know she will do well with this.

We are taking one day at a time right now, and I will be meeting with the doctor this morning around 10:30 to learn more. I can't say it enought though, your prayers and positive thoughts are so very appreciated. Thank you.

Sunday, April 8, 2007

Day After Surgery and Easter

I thought I was strong, but I don't know that I am. Yesterday, was one of the hardest days of my life. John thinks it was second to the day we thought her transplant failed. It was probably one of the hardest for Brianna, except for the fact that she has been sedated. Thankfully, Brianna is doing well, but I sobbed and sobbed.

Brianna went into surgery yesterday morning. We hugged and kissed her before she went in and told her we loved her. I took her glasses, and she was wheeled into the surgery suite.

A scope was put in her chest along with a chest tube to drain the fluid around her lung. The good news was that the effusion was not infected and was more like blood-tinged clear fluid. Brianna is the strongest woman I know. She was carrying around two-and-a-half liters of fluid inside the right part of her chest. All of the health care professionals marveled at how well she was breathing on her own with such a huge effusion. Dr. Whyte performed the surgery and Dr. Weinberg, our BMT doctor, was in the O.R. with Brianna the entire time.

After draining the fluid, the thoracic surgeon said the right lung did not inflate on its own. He also noticed that the outside of the lung was thickened with scar tissue, which would inhibit the lung from inflating. So a decision was made to go in to her chest with a 6-inch incision along the bottom of her shoulder blade to peel some of the scar tissue off.

Bleeding issues and lack of platelets didn't really affect Brianna. She was given a unit of platelets in surgery and her white count was 5.5. The doctors said she did very well during the whole procedure. After peeling the lung, which was like peeling an apple rather than an orange, the tissue on the bottom, middle and lower portion of the top lobe all looked diseased. This was not what we wanted to hear. But instead of taking any of her lung out, Dr. Whyte left it all intact, and closed her up, leaving two chest tubes- one on the front of her chest and one at the back.

These tubes are about an inch wide, and anytime you leave something like that in the body, especially the very sensitive lining of the lung, it is extremely painful. Fortunately, she was very sedated the entire time.

The doctors decided not to remove any part of her lung, because it all looked the same, and while it is an uphill battle, he has seen lung tissue like this heal. Any time someone has a bad pneumonia, the tissue doesn't look healthy, but can sometimes heal and thus he left it all in. As he said, once you take the lung out, you can't go back. Plus, because she is immune suppressed, if he took the entire right lung out, it would leave a huge empty area in the chest, which would be very susceptible to infection. The doctors said her long-term life prognosis would not be good.

The other consideration was that a blood test that was done about a month ago showed that the amount of aspergillus in her system was 2.0. For a normal person is would be below 0.5. When the same test was taken on Monday, the level dropped to 1.08. So the antifungals are working, more encouraging news.

As we were told what the doctors found during surgery, John and I sat just listening. Then, after 20 minutes, I just started crying uncontrobably. I guess it was just time for me to break down. My husband is so strong and although he had to struggle to control his own emotions, he was able to comfort me with all the positive news we had gotten from Dr. Whyte who knows lungs and has seen lots of them.

So it was decided to keep Brianna on a ventilator with a breathing tube down her throat to see if the positive pressure would help inflate her right lungs. An x-ray taken soon after surgery, showed much more aeration in the top lobe and maybe a little in the bottom lobe. This was very promising, also.

I thought that I was ready to see her in the pediatric cardiovascular intensive care unit, but I wasn't. We didn't get to see her until about 2 pm. She is in a double door isolation room, much like the transplant rooms we were in for two months. Anyone going in or out, must wash their hands and wear a mask, because of the risk of infection.

We went into her room along with her nurse and talked quietly to her while she was sedated. But at one point, she started to wake up and held onto my hand and onto John's hand, squeezing them extremely tight. We had to hold her hands away from the breathing tube, because she was trying to take it out and gasp for her own breath. You can't talk when you're on a ventilator, but it seemed that she was in pain. So I talked with the CVICU physician about increasing her pain medicatin and making sure she remained sedated. After giving her a couple of extra morphine pushes into her IV, she settled down and was finally made comfortable.

But a parent is not supposed to see their child like this. She has tubes everywhere, her legs are in inflatable compresses to avoid clots after surgery and she has two IVs in her left arm - one to check her blood pressure and one for extra access to her venous system. This despite the fact that she has a central line with two leumens - both of which have many lines hooked up to them. The breathing tube is taped to her face in order to keep it in place and she has a nasal-gastro line taped to her nose, to keep it from shifting from her nose to her stomach. Her eyes are closed but her lashes are smeared with a jell-like substance which become tears to keep her eyes moistened.

When she was moved to the CVICU, we were kicked out of our room and had to move everything to the car. You are not allowed to sleep in the room with her, but can stay as long as you are awake. We had to get a hotel room for the night and have reserved it for tonight as well. We're hoping we can get into the Ronald McDonald house in the next day or so, until she is out of the CVICU and can return to a transplant room on 2 North.

The doctors and nurses said we should go get some rest while she was sedated. So we left and are only just a mile away from the hospital. But sleep was the last thing we could do. From our many bags of belongings, I took a pink shaggy, heart-shaped pillow Brianna used in the hospital. I clung to it all night, prayed for her health and strength, and tried to sleep. We were both able to get some rest for several hours, but we were both extremely restless. Sleep is the last thing you can do when you are not with your child who is sick and your child is in the hospital a mile down the road. And the terrible thing about it is that it is what your body needs desperately in to to stay strong.

An x-ray today reveals that her upper lung does look like it's getting more air, but the two bottom lobes look unchanged. We haven't met with the doctors yet, but there is talk of removing the breathing tube. She is doing it all on her own. Our daughter is so strong-willed - thank God - and so strong, I cannot imagine. She is also given a drug to help her forget all this - a wonderful new medication for experiences like these.

She had a good night the nurse tells us and had a slight fever. But that has come down slightly this morning. After surgery her white count was 4.5 and her hemoglobin 9.2 (her red blood cells). This morning, her white count is back up to 5.5, her ANC 4,000 and her hemoglobin 10.2 - even though she didn't get an infusion of packed red blood cells. We're hopeful this means her red blood cells are starting to be produced by her marrow.

As my husband says, "The wolves didn't get us, but we're still not out of the woods." On this Easter day, we pray that infection is kept at bay, her lung continues to improve, the chest tubes are no longer needed and no more fluid accumulates and that she starts healing thoroughly.

Saturday, April 7, 2007

Quick Decision Means Surgery this Morning

The past week has flown by with CT scans, doctor rounds and surgeon searching, but Brianna would disagree. She has been naucous off and on all week, and has hardly eaten a thing because of it. It's very frustrating for her, because all she wants to do is feel well. (I mean who wouldn't??) Like the strong woman she is though, she made it to the roof several times for the exercise and fresh air. It was also a nice escape from all the horrible jack-hammer noise that goes on all day just below our room. We nap with ear plugs and can barely hear each other over the noise, which persists for hours sometimes, and begins as early as 6:30 am! Sometimes my chair or feet vibrate on the floor from the construction below.

However, the biggest news is two-fold. First, Brianna had a thorough CT scan late Thursday. We were so happy to hear that there is no aspergillus anywhere else in her body! All her organs are functioning well and she does have some fluid build-up in areas, but that will go away as soon as she's off some of the strong medications she's on.

The second piece of information was that the effusion, or fluid around her lung, has grown. In fact, it has possibly collapsed the second lobe of her infected right lung, and is beginning to affect the top lobe. The pressure has grown so that it is even shifting some of her organs over.

So Dr. Ken Weinberg, the head of the bone marrow program here, decided to get a thoracic surgeon's opinion on the best approach in dealing with this. They enlisted Dr. Richard Whyte the head of Thoracic Surgery at Stanford, or the adult side of the medical center. After careful evaluation yesterday morning, it was suggested that they take a staged approach in treating the lung infection. And, take this approach quickly, because obviously Brianna's lung has not gotten better.

Dr.'s Weinberg and Whyte, Lizzi (our nurse practioer who cares for us), Darci (our dear Social Worker), Brianna and I met yesterday afternoon late to discuss surgery for this morning.

Dr. Whyte's approach is to go into the fluid-filled area surrounding the lung with a scope and to place a chest tube. What he finds will determine if the surgery becomes major surgery with removal of a portionof it. If the fluid drains easily and is not infected, a chest tube will be placed in order to alleviate the pressure on her lung. She would have it for seveal days, and it will allow her a couple weeks to get her platelet counts up. She's been very dependent on donors right now. Then, when her new marrow can hold its own platelets, the major surgery would be planned to remove the diseased lung tissue.

On the other hand, if Dr. Whyte finds that the fluid is infected and filled with pus, he would proceed to remove it as well as the fungal affected parts of her lung. This is majory surgery going in through the side under her ribs. It becomes riskier too because her body is not making platelets to help in clotting. But Brianna is ready to have this done, she is so tired of the pain and coughing. Of course, I'm praying it's just the scope and tube today so that the bigger surgery can be done when her body can handle it better.

The doctors have lined up all sorts of platelets for her. She can't have just any ol' platelets either. Because of all the previous transfusions, her body has built up antibodies to certain HLA types. So it was also a major consideration among the doctors here whether they should proceed with the procedure today if the blood bank wasn't able to supply a enough units of HLA specific platelets.

So here I am at 8 am, our room is packed and Brianna is sleeping while we wait for the call from the OR that they're ready for her. She will spend tonight in the pediatric Cardiovascular Intensive Care Unit (CVICU). Anytime a bone marrow patient has to go to the ICU, they have to pack up their belongings and be ready to give up their room to another patient. We don't know how many nights she will be there, but I won't be able to sleep in the room with her and we can't keep our transplant room. Depending on what happens inthe next couple of hours will determine where we will be. No matter what, I will be sitting by her bedside in the ICU until I know she's doing well.

If surgery is just the scope and tube, it will take about an hour. If it's major surgery to remove part of her lung, it will be three hours. There was a lot of planning that took place about where to have the surgery - the adult side or pediatric - and where she will recovery - adult ICU or pediatric. I think our doctor's plan makes so much sense, because Brianna is a young adult and an adult surgeon is used to working on patients her size. Whereas, the CVICU deals with immune compromised patients who have had heart and lung transplants. They know the kind of immune suppression medications she's on and they often work closely with the bone marrow transplant team.

When I asked Brianna how she feels this morning, she is nervous. But she is happy that something will be done. I have to say, we are so relieved that her white count is stable - it's been holding around the 5.3 to 5.6 range - and now the lung infection can be dealt with. As always, I ask for your positive thoughts and prayers for the best outcome this morning, so that Brianna will begin her journey of total recovery again.

Tuesday, April 3, 2007

Day +41: Talk of Surgery in Coming Weeks

Well you wouldn't know that Brianna is doing better, unless you looked at her lab reports. We get a daily copy to see where her blood counts are, to see how her kidneys and liver are functioning and to see how well her body is coagulating. All her numbers seem to be getting better, however she began feeling quite nauseous again. We had a pretty good weekend, but yesterday she was feeling ill all day. She didn't eat a thing and tried to throw up to feel better. But it was no use.

(This little dish came to us about a week or so ago. It is a mystery who it came from, but it has brightened our little room we have called home for the past seven weeks. Thank you!!)

This morning she ate a little something, even though her stomach hurt. She's been in bed most of the time for the past two days and I'm prodding her to get up and walk around. It's so hard when you feel like you're going to toss your cookies all the time.

So far, the plan is to have a CT scan with contrast this Thursday to get a clear picture of her sinuses, lungs, abdomen, kidneys and GI tract. They have to rule out fungus in other areas of the body. They say there is a very small chance that there is, but since they're doing the CT they want to be sure. We pray that all is clear and that the infection has gotten smaller.

Her white count today at 2 am was 6.9, which is really good news. They decided to stop giving the white cell stimulator - G-CSF - unless her ANC falls below 2,000. Right now, her absolute neutrophil count is 5,330. The last dose of G-CSF was on Sunday morning, so her body seems to be holding its own.

Next week, Brianna will have another bone marrow biopsy. I hate seeing her go through these. I may have already told you, but she said the worst part of this is that when she's wheeled through the hospital halls on a gurney with a mask, she looks like a patient. She never thought it would be like this, and I never thought it would be either.

Now, talk of surgery has begun in order to remove one of the lobes of her lung. We're praying it's just the bottom lobe of her lung. There doesn't seem to be a really good picture of it, so hopefully this CT will tell more. But the mere mention of lung surgery scares me so. Brianna says she doesn't care anymore, "just cut the infection out of me." She asked if it was bad that she doesn't care and I, of course, told her it's normal. Anyone who has endured weeks and weeks of coughing, pain and discomfort like she has would be ready to do anything to get rid of it.

The thing we were hoping for was that her platelets would hold for a little bit. She's getting transfusions almost daily, usually two units. (Thank God for platelet donors.) But her body is consuming them with the bleeding in her lung infection (aspergillus cuts through the blood vessels) and her bladder - she has something called BK virus that affects the bladder and causes bleeding. We all have had BK at some point, but because our immune system is intact, it just becomes like a cold. But for immune suppressed people, it can cause bleeding of the bladder. We just have to wait out the virus, and it doesn't cause much discomfort or pain. And, all those platelets help her body stop the bleeding.

So the question they're asking is would cutting out the fungus help her body maintain platelets better. In the short term, maybe no for a few days while she's in the intensive care unit. But after that, maybe yes. But a surgeon has to be consulted to see what would be involved and whether a pediatric or adult surgeon would be better for her. Just the thought of her being in an intensive care unit for a few days scares me to death. Plus, I won't be able to stay with her in the ICU. I don't want to think about this, and as I said, I never thought it would come to this.

Please continue your prayers for us. We have some difficult decisions to make coming up and ones that may affect Brianna for the rest of her life. It's not right seeing your child go through this much. I just want to see her a happy teen again.

Thank you Newcomer's for your beautiful cards. They came flooding in last week and Brianna loved opening them and reading them. The nurses said Brianna had gotten the most mail. You are so caring and I don't know how to thank you. Here are a some of the cards that were sent. We feel your prayers, warmth and support.