Thursday, February 26, 2009

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!!

Sunday, February 22, 2009

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.

Thursday, February 19, 2009

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.

Tuesday, February 17, 2009

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...

Saturday, February 14, 2009

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.

Wednesday, February 11, 2009

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.

Tuesday, February 10, 2009

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.

Friday, February 6, 2009

Preliminary culture results

When the phone rings after 6pm on a Friday and the number comes up as a UMMC number... I get nervous, when I answer the phone and it's Dr. M's soft phone voice I get even more nervous, tonight that was unnecessary. She called to tell us that the preliminary results from the 2/5 culture came back showing no growth and she considers that a clean culture. Her blood labs from yesterday were great also, her creatinine is 0.78 and her prograf level is 10. The prograf is doing exactly what she wants to see it do, it's trending up around the time that she would normally want to make an adjustment down in the amount she's getting. She also mentioned to Steve that we're getting close to a point where she would want to adjust her cell cept down also.

We all agree that we still want to have one more clean urine culture from the UMMC lab before we pull the PICC line, that sample will be dropped off down there on Wednesday 2/11 with results on either 2/12 or 13.

She is still bothered by the fact that there is still mucous in her bladder. She has message into Dr. V for him to help us come up with a plan to make sure we're getting that mucous out of there on a regular basis. Steve and I aren't sure what that's going to entail, either going up in size on the catheters or doing some kind of bladder irrigations.

Katie had her second to last Cytogam infusion yesterday (2/5) she just has one more on 3/5 then we're done with that.

Maybe... just maybe, this blog will get quiet for a while.

Thursday, February 5, 2009

Bad Lab People

The urine sample from Monday did not have a culture run on it so we're not any closer to knowing of we're clear of these infections. In addition, the computer system for labs at UMMC is completely down so her lab results weren't available either. We left another urine sample today so hopefully that one will come back clear but we won't know anything until Monday.

Monday, February 2, 2009

More info

Dr. M's nurse called back with some updated information. Katie's prograf level is right where it should be. (Telling us that her creatinine and prograf are easily effected by her not drinking enough.) And... the UA from this morning looked the same as the one from last Wednesday, few bacteria and greater than 50 white blood cells. While that's still not "perfect" it's still a result that means the culture could come back "no growth." I'm choosing to be optimistic.

Mixed news

Today's labs looked much better than last weeks. Her creatinine is back down to 0.7 and the final report on the culture from last week was "no growth." However, today's urine sample was quite cloudy and given the initial urinalysis results from last week (bacteria and white blood cells in it) we do expect that the one from today will come back showing an infection. More info when I have it.