In the PICU... AGAIN... line sepsis

Gracie was home exactly eleven days this time. By Monday evening, she had a fever that, despite Tylenol, continued to move in the wrong direction. A spike to 104.6 at 8:00pm earned her a trip to the ER. Within three hours of our arrival, she was spiking to 105.3 and was admitted back to CHOC. At 4am, she was 106 and completely out of her mind. It was terrifying. That fever, coupled with low blood pressure and increased work of breathing earned her a bed in the PICU.

Last night, we learned that her PICC line was positive for yeast. Here's the medical lesson of the day in layman's terms (for those of you who don't already know): We all have yeast active in our respiratory system. However, we also all have bacteria in our systems that keep that yeast from being problematic. When you are on antibiotics, the good bacteria gets killed off, thus leaving you susceptible to a yeast infection. Gracie ended up with yeast in her line... which was not surprising to the Infectious Disease doctor given her history and her baseline respiratory labs. But, since she's been on BIG GUN antibiotics for weeks and weeks - - actually months and months - - all of her good bacteria are gone and her system had no way at all to fight that yeast. She didn't stand a chance with this infection. (The fact that Gracie has all kinds of respiratory flora when she is not acutely sick was always a concern for us with respect to having a central line placed. She is trached - - her secretions are tenacious and actively coughed out - - she is just at a higher risk for infection.)

As a result of the yeast infection, her PICC line was pulled today. Additionally, her blood pressure never responded to the fluids given on Monday night, so on Tuesday morning, they started her on Dopamine to maintain her blood pressure. She continues to fight fevers, her respirations are high most of the time, she has an active (albeit small) bleed in her stomach that is starting to affect her hemoglobin levels. She looks like a pin cushion due to all the peripheral draws that have been required to get labs. She now has an IV in each foot (so she can have her hands free) and she has more labs to come in the next several days in order to know how the infection is responding to the anti-fungal medication. Once those numbers look good, she will have a full eye exam, liver work-up and echo to confirm that the yeast didn't cause any damage or adhere to her pacemaker. Still so much to go through... and once she gets over this hurdle, there is another set waiting for her...

Gracie is very sick... very. Despite our experience with CHOC during her last admission (they've been wonderful so far this time), we had, after thoughtful consideration, scheduled surgery for this Friday. That has been cancelled, obviously. She hasn't been well since the day that PICC went in. And in looking at the bigger picture, she hasn't been well without antibiotics for more than fourteen days since January. Getting the PICC to give TPN was a huge step to "save" her... to keep her from starving. Even with the TPN and full gut rest, she is miserable from a GI standpoint. Receiving full nutrition and proper hydration made her gain weight, yes, but her body isn't handling that nutrition and hydration well at all. Her trach and lung health are constantly compromised. She gags and retches just trying to manage her saliva and we all know how uncomfortable gagging and retching is... imagine doing it all the time? With all of this, we are left wondering what will happen now that the line is out, wondering whether the surgery will really make that big of a difference since it won't solve so many of her other GI issues, wondering when enough is enough for our sweet girl.

She spent the better part of her first five years miserable. Yes, she has "great" days, but they are "great" days for her... and that means at some point, her day has hellish moments... even hours. It means that every day there is pain. She has now spent the last six months sick, fighting illnesses and constantly losing. We are walking the tightrope between the belief that she can be cured and the harsh reality that nothing is really helping. John and I have been asking ourselves tough questions with regard to Gracie's health and quality of life for years. Because of the last few months, we've had to try and answer those unfathomable questions... and the bottom line is that they don't yield any good, clear-cut or pain-free answers.