One down, One to go

Tuesday's urine culture came back showing "no growth." We were going to drop off another urine for culture on Tuesday but Katie has her last Cytogam infusion on Thursday so we may wait until then and have the 2nd culture done at UMMS. Once we get a 2nd clean culture we'll arrange to have the PICC pulled. YAY!!

Next round of labs

Just wanted to let everyone know that we will be going on Tuesday for labs and a urine culture. The final on that culture should be available on Thursday but we're doing it at LabCorp so it might take a bit longer.

update from Katie

Hi I just wanted to say that I am OK with the acidic acid flush but it deos really hurt and now I only cry a little at the end but I don't scream anymore also we finally made it up to 100 but still I would rather have another cystoscapy instead of these bladder flushes.well thats all from me for now.

Doing better

The bladder irrigations are going better. She's not screaming when we put it in anymore and she's able to keep it in until the next cath time. It's still horrible especially when it's added into the other things she has to deal with, but it's better than it was. I sure hope it works...

Irrigations

We just did our first irrigation with the acedic acid and I feel like the worst parent in the world. She rates the pain at a 5 or 6 on a scale of 1 to 10 (10 being the worst pain you've ever felt in your life.) She screamed through the entire process. She went into it with an open mind so I do believe her about the pain. We had to skip her bowel flush this evening because I just couldn't do another thing to her this evening. They want us to do 50 mL and leave it in her bladder until her next cath (4 hours later.) Tonight we just did it for 2 minutes with her screaming the whole time. Their goal was for us to go from 50 to 75 and finally to 100 mL.

Steve is on the phone with his sister right now so we haven't really talked but I don't see how we can keep this up. Katie would prefer to have another cystoscopy to mechanically clean out the bladder but I'm not sure that's an option. I'm just not sure what to do.

We did find out that we're only going to do a 7 day course of the abx, not sure why 7 instead of 14.

Plan

Warning nothing in this plan is very new...

Dr. M and Dr. V spoke. The plan is to get her started on 14 days of an antibiotic, the same one we used for the VRE before. After 2 days of the abx they want us to do bladder irrigations with acedic acid. Just imagine folks, sticking a catheter up your you know where and pushing an acid up into your bladder.. yep she's not too thrilled. We've done this before and it was rather painful. We don't have the specifics on the volumes or frequency yet. The idea here is to keep that mucous broken up so it can flow out of the bladder easily.

I'll be honest, this sounds as pointless as just treating with abx. After the last round we mechanically cleaned out the bladder and still got reinfected so why will this be any different.

I spoke to Dr. V a bit this afternoon. He said that enterococcus (the E in VRE) is a perfectly fine bacteria to have in your bowel, just not in your bladder. Katie probably transferred eterococcus to her bladder before the transplant and was able to kill it off with her natural immune system, but now that she's immunosuppressed she can't do that.

Her Prograf dose came down today so maybe that will help her fight these infections.

Please keep us in prayer. Katie is very upset about the acedic acid irrigations, and she had some side effects from the tigecycline before that will likely cause her to miss school and more importantly dance.

End of Good News

The final report on the urine culture from 2/5 grew vancomycin resistant enterococcus. Dr. M wants to treat it as an outpatient but wants Dr. V's input before beginning to treat. More info when I have it.