Taking One Day at A Time

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

More News and A Rough Couple of Days

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

More Worries Over Bronchoscopy Results

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Another Delay in Brianna's Road to Wellness

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Possible New Infection Shows on X-Ray

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

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

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

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

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

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

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

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

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

God bless....Iva

Weaning Continues and Anxiety Increases

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

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

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

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

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

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

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

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

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

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

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

More Weaning from the Ventilator

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

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

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

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

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

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

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

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

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

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

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

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

Two More Points Needed

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

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

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

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

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

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

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

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

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

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

Big Decisions for Brianna this Week

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

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

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

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

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

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

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

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

God bless...Iva

Second Opinion Brings Hope and Direction

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Baby Steps Continue But Long Journey Still Ahead

Brianna continues to make baby steps of progress as we enter our second week in the ICU. It's so scary though, all the things that need to work in order to get her well.

And as I sit in her room today, her blood pressure is dropping and the monitor alarm keeps beeping off. They wanted her fluid balance in the negative - meaning really dehydrated - and they did that last night. She was negative a liter and a half over the last 24 hours. This was a good thing for her. The resident physician who came in to check on her due to her dropping blood pressure, said that not having enough circulating fluid can cause your blood pressure to drop. Hers was going from 101/60 down to 81/54 within a few seconds. She was going to get a unit of platelets so he said to give it to her now rather than later to add more volume to her system.

Now the occupational therapist is here to work with the muscles of her legs and arms. Because she hasn't used them, all her muscles have atrophied. Her poor legs are so skinny and she really doesn't have any calf muslce. Again, it will be a long recovery just from being in the ICU.

We all take for granted the fine balance our bodies maintain in order to work properly. Also, because Brianna's now been immobile and in fact purposely paralyzed for more than a week, her skin is starting to break down. Pressure points like her ears, skull, pelvic bones, shoulder bones, knees - are all areas that are in contact with the bed all the time and are getting little sores and blisters. So we're having to put gel packs under these areas, and trying to off-load some of that pressure. Our bodies were meant to move around.

So far, our family has been really good about ensuring that I am not here alone during this time. John has stayed with me for most of the week and then my sister is flying out and will be staying with me for the next couple of days. My parents have come out and will come again, followed by my brother next week. And I am eager to see some of my friends from my eBay group Primitive Folk Art Tea and Talk (PFATT). They are flying out from Oregon and Southern California and then driving out from Sacramento, where another member lives. I will see them tomorrow. I am so utterly touched by their willingness to take the time and expense to come give me a supportive hug.

I'm sorry that I'm unable to update the blog everyday. I try to provide a little something, but some days are too draining or too stressful. Although, my writings do help me work through all my feelings.

Also, I have heard that it can be difficult to post to the blog. If you don't have a Google account, you won't be able to. Sometimes even if you have one, the posting doesn't work all the time. But if you click on the little envelope at the end of the post, you can send me an email. It may not show up on the comments of the post, but I will get the email. Simply put in your name, and email address where it indicates. And instead of putting in a "friends" email address, put in my email address (iva@ivascreations.com). Then write your message to me and click send. Or, you can simply send me an email from your email program. I look forward to getting your emails so much.

Brianna's father has visited weekly, even though he lives in Southern California. He arranged for her to be blessed with a healing prayer today. I know many of you are doing the same, in thought and spirit, everyday. We are so grateful for all of you.