Hanging in there despite the pain

I am having a really hard time watching my daughter not only go through a transplant, but also have to deal with an infection in her lung. Several times today I've been asked how we're doing. Brianna is truly hanging in there. She's really loaded up with lots of pain meds, and so she is always drowsy. When she's more awake, the stabbing pain in her side comes and goes. So it is better that she be "out" for most of the day. For me, I am barely holding back the floodgate of tears. And what's so difficult is that there is nothing I can do for her! It's just not right that a 17-year-old should have to go through something like this and have a double whammy with a mysterious, extremely painful infection.

At this point, the doctors still do not know what it is that she has in her lung. She had a CT scan today and they were hopeful it would be more telling. But what it showed was either a fungal or bacterial infection, and most like a slow growing one.

Several infectious disease docs were called in to consult and they said that she is not showing the classic signs of infection. She has not had fevers and other signs of one either. Of course, there is the pain which says something is wrong. It stems from the fact that the infection is close to the lining of her lung. That lining is very sensitive, and if inflamed - ouch is one of the words that would describe it.

Since the CT scan was not definitive, which we were warned may be the case, the only real way to determine the cause is to get a sample of it. Well she's not coughing anything up. Therefore, between 10:30 am and 11 am, she will be having a bronchoscopy. Basically, she will sedated, and then put a tiny camera up her nasal cavity and down into her lung. Some saline will be sprayed in the lung and then suctioned out. We pray that tiny pieces of whatever is causing all her misery will be suctioned along with the saline. It will then be taken to the lab where it will be grown in cultures. They will be testing for all bacterias and fungi.

She is on some broad spectrum antibiotics and only one antifungal. But the infectious disease docs felt that those should be tweaked a bit to provide even broader coverage. So, she's been started on several new drugs in addition to the seemingly 20 other's she is already on. No matter what, we still won't have any answers or see any improvement until later in the week, maybe not even until following one. We've been told that the new drugs and the cultures will take at least 24 hours to 72 hours to see any affect.

Throughout this, the doctors here are really wonderful and caring. Dr. Rajni Agarwal was here early this morning, and then came to see us about 8:30 tonight. She's been here all day and then some. She is such a concerned physician and told us that even if we feel alone, we are not. She is having the nurses call her every six hours throughout the night to ensure that Brianna's electrolytes are in balance. (Over the weekend there was some disagreement as to whether she is retaining water or if she's simply just gained weight. Steroids can give you a ferocious appetite, which they did for Brianna. But, she was given some diuretics that dried her out too much.) So they are closely monitoring her fluid intake and output - oh yes everything here is measured! She along with the others who are taking care of us make us feel like we are people they care about and not just some faceless patient to try new treatment approaches on. She wanted us to know personally that she is going to find out what is causing all this and it will be taken care of!

Some good news is all this is Brianna's white counts were .6 on Sunday and Monday, and we're hoping they'll increase to help in the fight. Also, an ultrasound was taken of her internal organs and they all look great, even though she's getting lots of medications that are hard on the liver and kidneys. We were happy to hear this.

The notes and cards, and comments here on this blog, continue to give us strength to weather this stormy journey. Thank you and bless you for those. We pray for Brianna's continued courage and healing and for the doctors to determine what is behind the attack on Brianna's right lung. All your prayers and positive thoughts go along way for us and we are so grateful for them. Hug your families and don't take life for granted. Each day is precious.