Dr. Seuss is one of Patrick Jr.'s favorite authors. In fact, it's almost all we read if he is choosing. To keep up the family tradition, we read them to Charlotte too. I just caught a glimpse of one entitled, "Put Me In A Zoo," and I think is fitting given the change of events which have unfolded today.
The storm broke this morning as I arrived at 730 am. To get to the nuts and bolts of it all, her stats were trending poorly and she had a fever. Based on overnight observations, a few labs (bloodwork and cultures) had already been sent off and we were thinking potential infection but because of her sudden and severe dip in stats, her docs acted fast. Again. She was given emergency IV drips of her 'heavy hitter' drugs including a wide spectrum antibiotic and blood as well as put on oxygen. (She is only on air flow - ie, a nasal cannula - NOT a breathing machine.) Additionally a blood gas was drawn and showed that her lactate (remember that NASTY word from many moons ago?) was high and at a 5. To help put it into perspective, she was at a 9.9 when she was put on ecmo, the heart and lung bypass machine. Yep.
The true BLESSING in all of this is that she was stabilized relatively quickly and has remained so since shortly after discovering all of this nastiness. And 12 hours after her culture from one of the overnight tests, revealed that she has Gram Negative Sepsis. People, people, people...it's the big bad ugly. As in REALLY NASTY. As in, if not treated almost immediately in people like Charlotte, ends in mortality. Clearly this is not good news to hear BUT what is good is the PRAISE that we have to our GOOD GOD that she was stabilized and remains so.
Where do we go from here? We wait for the cultures of the tests to grow anything in the next 48 hours and given what is revealed, will determine how to move forward. Potentially, given that Gram Negative Sepsis is a bloodstream infection, this could have infected her brain shunt (the VT shunt). Again, based upon the cultures, etc, the neuros may move forward with tapping her VT shunt to see if it has been infected. Tapping the shunt involves using a needle to puncture the shunt between her skull and skin to extract fluid. If it reveals that there is infection, then the remedy would be to surgically remove the tubing, not the shunt because she needs it to live, and let it drain externally. Once her body fights the infection, then it could be surgically placed back in. We would then have to wait for 14 days before having the Gtube surgery, just as we are currently waiting it out. Too if the infection has gotten into her spinal column fluid, a spinal tap would need to be done. If the shunt is at all involved in this, then we are looking at potentially another MONTH BEFORE being able to have her Gtube surgery.
I pray to travel the path with the least amount of resistance: We pray for tomorrow's labs to show NO new cultures growing. Again, we pray for them to be NEGATIVE, just like her fluid balance from weeks ago, right?! If this is the case, then we can start counting from tomorrow, 7 days. So next Monday, Charlotte could have her Gtube/Nissen surgery and therefore not bumped too far off from dare I say, "schedule."
Don't you feel like saying, "what in the world happened here?!" Well, this is not entirely uncommon given Charlotte's life course. She has lived in the ICU and has had external hardware, ie like all of her lines which can be breeding grounds for infections, despite the best precautionary methods taken. Most likely, her broviac line is the culprit. WE PRAY that "this" was nipped in the bud early enough to not have steered her completely off course. And to illustrate just how gross this infection is, the culture grew in 12 hours to reveal itself as Gram Negative Sepsis.
So there are a lot of things to pray for but overall for Sweet Charlotte's comfort level. In an effort to aide in administering medication and blood, an IV line was attempted 3 times to no avail. Fortunately, Charlotte was calm the entire time as I talked to her about the warm sun that she got to feel yesterday and her beautiful self lying in her pink polka dot blanket. She was perfectly still...calm...relaxed. We pray for this peace for Charlotte as she recoups. We pray that she is able to recover swiftly and without complications like delayed stay, additional IV lines and her brain shunt being affected.
In your prayers of THANKSGIVING, please remember our good doctors and nurses and the Mommy instinct that God continues to provide me. I have been reminded that because of our quick response time, Charlotte is stable...and ready to be placed in my arms again. There are MANY blessing here today, despite what I felt when we began this roller coaster ride yet once again. Fortunately, I realize that God shines through all things, no matter how "pretty" or "ugly" they may appear. He is GRACIOUS. He is GOOD. He will lead us through this with HIS LOVE.