The New Routine

Since last weekend things have really progressed.  My sis-in-law Joanna got here right in time for Lily to start her cath training.  It was a big day!  We went over to the clinic last Friday to meet with Karen.  She was great and went over all the dos and don'ts of cathing.  It's fairly easy and simple process.  As I expected though, Lily was not having it.  She had so much anxiety about taking the tube out, the tape off, snipping the stitches, etc.  We had to talk her into each step for awhile.  She was crying and not wanting to do anything. None of this has been fun or easy, and convincing her to do these things is the worst.  And we all knew it wasn't going to hurt, it was just the idea of it freaked her out.  But eventually she gets brave and say's "OK I'm ready".  At those moments, even though I'm still mad from her screaming, my heart just feels for her. I'm so proud of her! She did it and it was no problem.  Then Karen inserted the new catheter into the stoma and drained the urine out.  She had me do it too.  It's so easy!  And I was so relieved that it wasn't painful. Afterwards Lily was so happy to have that tube out.  I gave her the biggest hug and tears came down my cheeks.  Then Joanna started crying and we were all just so relieved.  We had a schedule to keep at the beginning, cathing every 2 hours would be tedious. And there's a lot of supplies to use with it.  But we'll get the hang of it.

We took Lily to celebrate at Chic Fila for lunch.  Then later that night we went to a local theater for a Disney Live show. It was fun having Joanna around right after her birthday.  She even brought her a super cute outfit to wear to the show.  The weekend went pretty good, cathing was really pretty easy.  Sure there were times that were tricky.  We had to cath in unfamiliar places, like public bathrooms and even the car!  We did a day trip to DC with Joanna and that was fun too.  It was a big day to get out and try the new routine.  But all went great.  

However, we still had a few things to tackle. And, unfortunately while Joanna was here over the weekend, Lily started having some diarrhea issues.  She had been pooping a lot, especially at night. I think with all the tubes still in for awhile and having been in the hospital for so long, she got accustomed to pooping in bed.  And at night, her body would relax and she would basically let it all out.  So I was putting a diaper on her at nights.  Then it just got worse and worse.  Her poop kept getting runnier, and really really smelly.  The entire room would wreak terribly.  I was getting up several times a night to change poopy diapers.  So by Sunday night, I knew something wasn't right.  I emailed Dr G and told him the problem.  He told me to bring in a sample the next morning to test for c diff.  C diff is a bacteria that can live in the colon.  It specifically affects people who have been on a variety of antibiotics, or had any surgery on the bowels/GI tract.  Well, that's exactly her case.  I waited patiently for the results getting more worried that this could be a big problem.  By the next day she was feeling pretty weak and dehydrated.  I pushed the fluids as much as I could and gave her probiotics.  Then I got a call from the resident that he wanted to get her started on the medicine to treat c diff anyway.  He assumed she probably had it and we didn't want to wait any longer.  So not wasting any time, I headed right over to get that medicine and get it in her.  We have to take it 4 times a day, so I got it going pretty quick.  Then a couple hours later we got the results that she did in fact have c diff, and thankfully we were proactive about it and would just continue with the meds.  The next morning on Wednesday she woke up a new woman.  Feeling much better, no more tummy aches and the diarrhea had been much less often.  I was so relieved. Seriously, I am so thankful for modern medicine constantly. She has been saved by it many times in her life.  Wednesday was the day to go see Dr Dicarlo, Dr G was out for the week, so I was to check in with her to see how the cathing is going.  I'll write about that appt in the next post!!