We learned today that Lucy’s line culture from Tuesday grew gram positive rods. Dr. R said that these bugs most likely translocated from her bowels as well, because of the type of gram positive bacteria that grew. We are keeping her on the Vancomycin, the antibiotic we are using to treat the gram positive bacteria, until the susceptibilities come back. Lucy has a reaction to Vanco called red man’s syndrome , we learned this back in November when she was on Vanco to treat another infection. In order to counter act the red man’s we have to give Lucy IV Benadryl thirty minutes prior to giving her the Vanco, and then infuse the Vanco at a much slower rate. For Lucy, this means that we are infusing it over a two hour period of time.
We started Lucy back on her TPN last night; however, her TPN is not compatible with the IV antibiotics we are using. We have to turn off her TPN and switch her over to D10 when she is getting her antibiotics in order to maintain her glucose levels during the time we are infusing her antibiotics.. In addition, she has several other IV meds that we are infusing that are also not compatible with her TPN. All of this switching back and forth is a bit confusing and makes for one complicated set up. In case you didn’t already know, complicated is Lucy’s middle name.
Lucy’s urine culture came back growing an impressive number of gram negative bacteria. This earned us a trip to down to ultrasound to have a bladder and kidney scan. We have been very suspicious for some time that Lucy is not emptying her bladder entirely when when she does go. Dr. R believes that Lucy could be suffering with a neurogenic bladder, a condition where the nerves and muscles don’t function correctly in the bladder. It is not uncommon in kids who suffer with chronic intestinal pseudo obstruction to have a neurogenic bladder, the two kind of go hand and hand. We are going to follow up with urology in a few weeks, once the infection is cleared, and do urodynamics study to test the function of her bladder.
After an impressive snow storm hit our area yesterday, dumping a whopping 18 plus inches of snow, my mom was finally able to fly in this afternoon to help us. My mom, Drew, and the kids all came to the hospital tonight to have dinner and to attend our monthly family support group meeting. It was nice to see everyone, I miss them and so does Lucy. She asks all the time “Where’s Dada?” or “Where’s kids?”. Normally I answer her with “Dada’s at work and the kids are in school”, except this week the kids and Dada have all been stuck at home due to the snow. This kids are scheduled to have a two hour delay tomorrow, but should be back in school for the first time since Monday.
There is talk of going home soon on fourteen days of IV antibiotics, if we have negative cultures tomorrow. Dr.R told me that he felt confident that we could handle all of her IV meds at home. It won’t be easy, but we can do it. Where there’s a will there’s a way…and oh do we have will!