Out of Cardiovascular ICU, Back on LPCH 2 North

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

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

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

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

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

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

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

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

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

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

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

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

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

We are thankful for your continued thoughts and prayers.