September 9th Update

It was another exciting day at the hospital. A nurse accidentally clogged Annie's J-tube with her morning meds. Since the J-tube is threaded down through Annie's intestines about a foot, we can't just take it out to clear the blockage like we would a G-tube. So we let it sit for a couple hours to see if it might dissolve over some time, but didn't have any luck with that. A nurse suggested trying Coke in her line to break up the clog, so over about two hours we kept her line pressurized with Coke, adding more every 10-15 minutes. Thankfully, after about 2 hours of that, the blockage cleared! Whew! Who knew the power of Coke!

While we were waiting for the Coke to work, we needed to still get Annie's meds in her somehow, so we decided to use the syringe pump to slowly infuse her morning meds through her G-tube. Since she hasn't had anything in her stomach for two weeks, we decided to go really slowly. We thought she was tolerating it great, until I discovered that the nurse connected the J-tube extension set into the G-tube port, which isn't compatible, so the fluid just leaked all over and Annie's tummy was covered in yucky meds running down her waist. So no meds got in her stomach. It was a frustrating morning to say the least. We finally just gave Annie her seizure medication and didn't bother with re-dosing the rest.

Because Annie still needed fluids and we didn't know if we'd ever be able to unclog the J-tube, we decided to try some pedialyte through her G-tube into her stomach.  She was doing well with it, and we want her to ultimately transition to the G-tube anyway, so even after we got the J-tube unclogged, we decided to keep going with the G-tube pedialyte since Annie was tolerating it well. Tonight she has worked up to 60cc/hr of pedialyte through the G-tube! So overnight tonight or maybe tomorrow, we'll move to quarter-strength formula through the G-tube and just use the J-tube for meds right now. So that's great news and gets Annie just that much closer to being able to going home.

The bad news is that Annie's white blood count went up yet again today to 32,000--the highest it's been during this hospitalization. It continues to increase each day by about 4,000-5,000. Her CRP also went up quite a bit, which is an indicator of inflammation. So that is concerning as well. We suspect that Annie might possibly have an infection somewhere that her bactrim has been masking and preventing it from really flaring up but hasn't been able to treat. Annie had her last dose of bactrim today for her UTI, so only time will tell if there is another infection somewhere.

The Hematology/Oncology team believes that her high WBC might be due to a new medication we started Annie on for ulcerative colitis last week since her regular UC med can't go through her J-tube. So we have decided to stop that medication to see if it may be the culprit. So hopefully tomorrow or the next day we'll start seeing her WBC come down a little. If her WBC and CRP continue to trend upwards, they will do more imaging of Annie's spine to see if her spinal rods may be infected.

The next few days will be really telling, hopefully, now that Annie is off the new UC med and the bactrim. So we're praying that Annie's WBC and CRP come down instead of a new infection popping up.

Annie had a happy day today and was alert and awake. She ended up sleeping yesterday for 6 hours straight without stirring, and then had a bad seizure requiring Diastat. It was probably because we tried to wake her up. So it was great to see her happy and alert today after a super sleepy day yesterday that had us concerned. We're hoping for at least some answers this week, and hopefully some good progress too!