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 steps...how 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.
Monday, April 30, 2007
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.
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.
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 grows...you 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.
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.
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 back....then....one 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.
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 back....then....one 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.
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