Biopsy updates

Well it's certainly been a busy couple of days. Claire's hospital day on Wednesday went well. We were able to get everything done that was needed, except for the eye photos. The doctor wasn't able to make it. But that's no biggie. She got the kidney and liver biopsy done and that was most important. We made it home Wednesday night around 8:00 with the urine catheter still in. She did NOT like it AT ALL. Who would??? She had a rough time getting to sleep, but luckily once she did fall asleep, she was so exhausted from her busy day that she wasn't bothered by the catheter and slept well through the night. That was helpful for all of us to get some good sleep.

One nice bonus to all the procedures she had done on Wednesday was that her tummy has to be empty of fluids for the anesthesia. So when when everything was over with and she woke up, she was actually hungry and actually ate real food!! For dinner at the hospital we had KFC and she was eating potatoes and gravy, pieces of roll, and bites of chicken! She also ate a bowl of broken up cheerios for breakfast the next morning and drank apple juice! Those are huge baby steps!! It's so fun and exciting to see---until we get back up to her normal feeding routine (as per doctor's orders) and the hunger and desire for food slowly vanishes. But at least there's hope!! When we can begin to cut down on her fluid intake, she really will learn how and WANT to eat!!

Thursday morning was a movie morning. Claire couldn't move around at all with the urine catheter in, so the love sac was her parking place for the morning. Benson soaked up the relaxing treatment too and was excited to get to watch a movie in the morning for a change! We were supposed to stop the 24-hr collection at 2:15 but around 10:30, I noticed her diaper was full. At first I was hoping it was just poop...but it wasn't at all. It was urine. She had urinated around the catheter into her diaper. The perfect 24-hour collection is supposed to have ALL urine collected within an exact 24 hour time period....not 140 cc of it in a diaper!! And so this collection simply wouldn't be perfect this time. I called the nurse and since she had urinated around the catheter, we stopped the collection early and called it a best-effort collection!! It's no fault of anyone that it happened. It just sometimes does. Good news was that we got to take the catheter out 3 hours early...which makes a BIG difference to a 2-year old (and a mom)!! So that was the end of that fun.

She met with the liver doctor later that afternoon and as far as the liver biopsy went, everything looks pretty good. No signs of rejection....just one thing they wanted to look further into...but nothing of major concern right now. Her liver numbers have been good so we'll take it!!

As for the kidney, we found out late Thursday night that the BK virus was indeed in her kidney. Oh man. Not the news we were hoping for. The kidney was also inflamed...which could mean rejection This inflammation may be related to the BK virus or may be a separate issue in itself. Hard to say. Not a black and white issue. But she needs to be treated for both issues asap. We met with the kidney doctor today to discuss what should be done and there is an antibiotic she needs to receive, once every two weeks for 4 doses. We were going to start it today, but it has to be given IV and it takes SIX HOURS for the dose to be given!! The PITC, where she needs to receive the antibiotic, closes at 8:00 pm and she wouldn't have time to get it all today. So just in case we didn't have anything planned for tomorrow, we do now!! At least it's only once every 2 weeks for 2 months. And in all reality, it doesn't matter much at all how long it takes to get the med or how long she has to get it.....as long as we're working to preserve her kidney function and get rid of the virus. Let's just get that kidney well again!!!!

She will also receive a dose of antibodies to give her immune system a boost in helping to reduce the inflammation in her kidney and help fight the virus. We'll get more of that figured out on Monday.

And then we just pray that the treatment works and the virus doesn't do any further damage to the kidney in the mean time. Patients have lost their transplanted kidney due to this virus.....which is NOT at all what we're planning on happening....but it is a possibility.

Nice thing is that there aren't any symptoms or sickness that come along with the virus. So she looks and feels 100% great!

And so we'll go forward. One more thing to add to the list. One more specific addition to our prayers. One more thing to overcome. Good thing Claire's a fighter!!

Waiting for biopsies. Always lots of waiting time in a hospital.

Post-op: eating cheerios and watching Dora.

Silly times with the spoon. Still watching Dora.

KFC dinner. Done with Dora. (Whether she liked it or not!)

Movie morning with Benson.

More cheerios for breakfast!