Laughing, Weeping, Living

Life happens. You laugh about it or cry about it, sometimes both.

Jail time again

on November 11, 2013

Agnes is in the hospital. She’s been struggling with throwing up this past week, and yesterday was really bad so her pediatrician recommended we go to the Emergency Department. Agnes has a history of bowel malrotation which will always put her at a higher risk for obstructions, plus she has a shunt that could easily malfunction or get infected. Vomiting is a symptom for both those problems, plus a host of others, so we went in.

They did x-rays of her chest and abdomen. They did a barium dye test of her bowels. They took blood samples. They took urine for a culture to see about a UTI. They took a trach culture. They took a blood culture. Agnes was super, super pissed at the doctors and medical staff.

This morning Agnes’ neurosurgeon wanted to take a sample of the cerebral spinal fluid that is draining through the shunt, but he wasn’t able to extract any where he thought it should have been an easy sample to collect. Along with that, Agnes’ blood tests showed an alarmingly high white blood cell count which indicates an infection. So she was rushed to surgery for the neurosurgeon to do what’s called “externalization” of her shunt. Basically, they just make a small incision in her belly and pull out the end of the shunt tubing that drains into her abdomen, then they collect the sample of fluid and hook up the shunt to drain into a bag that hangs next to Agnes’ bed. This is so that, if the shunt is infected, it doesn’t keep draining infected fluid into Agnes’ abdomen. It seems like a sensible precaution. They also started her on the courses of antibiotics, assuming she does have an infection, even though no cultures have shown results yet.

So, long story short, Agnes is in the Pediatric ICU on a ventilator, sedated after surgery, recovering from surgery and receiving IV fluids and medicine. They inserted a PICC line (peripherally inserted central catheter) which is long-term, stable IV access given Agnes’ history of being a difficult baby to secure IV access and take blood from.

Speaking of blood, she has been exceedingly stingy. It takes many many tries for someone to get blood from her for testing, and she never gives up enough. With the PICC, that won’t be such a scary problem so I’m glad they went ahead and did that already.

In the next couple days, we expect the cultures to start coming back with results and they will find the source of the infection. If it is the shunt, it will have to be replaced in surgery. She is already getting antibiotics, so in a few days she should be better. They also have to wean her off the ventilator when she is ready, and restart her tube feeding. They have been resting her belly yesterday and today, giving the medicine a chance to kick in and her body to wake up and start responding to the treatment.

Thank you all for your continued prayers. We thought we were maybe looking at the end of Agnes’ life this morning because she was in very rough condition just prior to surgery, but luckily and miraculously she made it through and is recovering. It made us cognizant that any issue that comes up could possibly lead to her death, and we are grateful for every day we have with Agnes still among the living!

2 responses to “Jail time again

  1. JeneaSwainston says:

    I can not even imagine how difficult this is on you and Jeremy, and Stephen. I just ache for you all and especially for Agnes
    …My love and prayers, always…Aunt Jenea

  2. Becca says:

    Praying for you and Agnes. Sending lots of love.

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