New problems, new bacteria

Katie was still dizzy this morning. We called Dr. M and she wanted us to be evaluated by our pediatrician's office.

LOVED LOVED LOVED the pediatrician we saw! (he’s new to the practice and we’ve only ever seen our regular docs and the nurse practitioner) He was thorough, not bewildered by her other issues, took them into account without letting them cloud his judgment, he heard her heart murmur (lots of people don’t hear it so I usually don’t mention it and did the same with him and then realized he was talking cardiac stuff so I should and he was relieved because he had heard it and thought it might have been new), talked to me like an educated parent.. seriously I cannot say enough about him! He said he still thinks that it looks like a medicine reaction, either to the cold, or we also increased her Ditropan dose to help with some bladder cramping, or a combo thereof. He said it doesn’t look like urosepsis (sepsis is when an infection through your whole body instead of being localized.) Based on her symptoms, he doesn’t think it’s anything neurological or a seizure or anything like that. He said he would further evaluate it if it lasted 7-10 days starting with an EKG, repeat echo (she had one in September or October of 08), and a tilt table test. While we were there he got the culture report from Lab Corp. The final culture result still isn’t back but they are saying it is a gram negative rod bacteria meaning it is not VRE or the most current bacteria which was a form of strep. The only time Katie has had a GNR bacteria it turned out to be pseudomonas which we used to call the Voldemort bacteria because it’s only treatable by IV meds (with the PICC it’s not so much of an issue but the drugs to treat it, if memory serves, are usually of the nephrotoxic type which might require inpatient level monitoring.) However, Dr. Kevin doesn’t think she has Pseudomonas because he would expect her to be substantially sicker especially given her immunosuppressed state. So, he wanted to start her on something broad spectrum that is likely to cover GNR bacteria. He called Dr. V who agreed with his choice of oral meds and asked that a loading dose of another med be added. I then said “ok but this is still pending sensitivities because if this is pseudomonas neither of these meds will cover.” He agreed but repeated that he doesn’t think it is pseudomonas…

So we have an order into peds at home to send us out a dose of Rocephin and we have oral macrodantin to start this evening. The other question hanging out there is the bigger picture, are we just going to continue to treat these infections as they come up or is there some overall plan to clear this up. I'm on the fence about whether I should call Dr. V's office to have that conversation now or just wait and let Steve have it with him in person when we see him next Friday...

Also, those of you so inclined, please say a quick prayer for my new niece Kacie. She was born a smidge early this morning and is having some minor struggles. I wish I could be there with her parents but I have to be here with my struggling girl.