September 8th Update

Last night was a little rough. Annie started having some pain but we found that tylenol and a movie helped. The problem with that was that Annie was wide awake the rest of the night. She was generally happy, and just making her talking sounds through the night. She had a bit of a cough as well that kept both of us up, and she got fussy a couple times requiring some position changes in the night as well.

So at 10:45 this morning Annie finally fell asleep and has been sleeping for more than 4 1/2 hours! At 3:15 now, she's still sound asleep! While she's been snoozing, the Hemotology/Oncology doctors came in to visit. They had thoroughly analyzed her lab values as well as her blood samples under the microscope to figure out what might be going on.

They had a ton to say about what each blood component level meant. But they basically agreed with the infectious disease team--that Annie's values don't indicate that there is any infectious disease process going on. They said her increase in white blood cells (which went up again today to 28,000!) is most likely due to a new medication we started Annie on or possibly just the stress she's had to her body over the past two weeks and being on TPN. They said there's also a chance that she's just picked up some kind of virus, although she shows no other symptoms.

Hematology agreed that the best thing would be to get Annie on her regular feeds and get her home and see if her WBC improves. If it continues to increase into the 50, 60 or 70 thousands, they would want to see her and figure out other possible problems, possibly related to her bone marrow. There is also a chance that Annie has something wrong with her spleen, which would affect her blood counts. The CT scan showed her spleen was decreased in size from previous scans, but it's hard to know because her previous scans were done when Annie had terrible infections, meaning her spleen may have just been enlarged at those times and now it's just back to its normal size. So they will continue to monitor her labs.

Annie started on half-strength formula today at 60cc/hr through her J-tube. I've been running the numbers on what they want her to tolerate before going home, (full-strength at 60cc/hr) but that actually puts her over the daily amount that she would normally get at home. If we convert her typical feedings into a true continuous 24 hr feed, it equates only to 3/4-strength formula running at 53cc/hr. So maybe Annie is closer to her home feeds than we thought! She's been tolerating feeds well so far, so we continue to pray that she'll keep doing well and get the green light to go home in a few days.

We'll still have to monitor her closely at home because of her lab values being so concerning, but we should be able to see doctors in their clinics for that, and don't need to be inpatient, unless something bigger is finally found to be the problem. Today is day 11 of the IV bactrim which they think may be a sufficiently long course, but the hospitalist will consult with the ID team to get their opinion before stopping it. Annie's GI tract is still not completely up and running, so that's another thing we're watching.