Grace will be undergoing a surgery to have a Mitrofanoff that will create a tunnel using her appendix between the bladder and outside of her abdomen. This will allow for us to easily empty her bladder with a catheter making her personal cares easier as she continues to grow and will help prevent UTIs which she has been prone to over the years.
This week was meticulously planned in prep for Grace to have the surgery tomorrow. Joy was traveling for work and we worked out the details of managing everything that needed to be done in prep. All systems were go. I was wrapping up my time at work yesterday and ready to be off for a week and a half when I got the call. The surgeon’s office called to tell us that bacteria showed up in Grace’s urine culture on the sixth day and we need to treat it ASAP along with getting another urine culture if there was any hope of still having the surgery.
I raced home to meet Grace and her nurse, collected the sample and headed off to the lab. Dropped off the sample and stopped by two pharmacies on the way home to pick up prescriptions we would need for our time away and the antibiotic she needed to start. In between numerous text messages with Joy and Grace’s nurse along with phone calls with Joy, the surgical clinic and the pediatrician’s office we seemed to be back on track. Although peculiar questions were asked like has ‘Grace been to Wisconsin?’ and there appeared to be disbelief that she was content and her health status was normal.
The bacteria found is named Elizabethkingia Anophelis a bacteria string recently discovered where 69 people in three states have confirmed cases, 26 that have been fatal. According to the Center of Disease Control (CDC) most of the patients were over 65, had serious health conditions and it is has not been determined if the bacteria or the other health conditions were the cause of the deaths. Grace would be the first documented case in Iowa and we joke that she now is the dot in Iowa on a CDC map. We have to laugh as Grace continues to teach us new things.
This bacterium can be found in the earth and water worldwide and transmission is unknown. No need to worry there are no men in black suits outside or an ET bubble tent going up over our house. The bacteria could very well be living in many of us but without other health issues be inert and there is so little known about it that the infectious disease department at the hospital canceled the surgery as a precaution.
We have started Grace on an antibiotic that is the preferred treatment option and will be following up with two additional urine cultures on top of the one currently in process. Surgery has been rescheduled, nursing schedules are being adjusted to cover the some of days we planned to be away, life has shifted and we have regained the next week and a half that we essentially carved out from all existence. In my mind time stopped today and would not resume until for another week and a half, everything would halt.
The strangest thing that I had to do today was to go to daycare, still in disbelief myself and tell Graham that Grace was not going to have her surgery. Graham was painting and was not expecting me; he was expecting Grandma Choo Choo to pick him up and didn’t understand why I was there. I told him that I needed to talk to him and tell his 4-year-old brain that Grace was not going to have her surgery and we would not be going to the hospital. I felt like I was telling him someone died, perhaps because that was the mental state that I was in. He thought it would still be a good idea if he went to Grandma and Grandpas “for four days.” Turns out he really just wanted to convince Grandma to take him to ‘Old McDonalds’ on the way. Graham is always thinking, making lemonade out of lemons and he loves lemonade.
So far we know that the preliminary culture is negative of the second sample prior to starting antibiotics. Now we wait.