I suppose it's time I wrote about our trip to Cincinnati Children's Hospital since we got home almost a month ago! I have put it off for awhile because (1) things have been a bit crazy since then and (2) we didn't learn much that...
I hope y'all can forgive me for taking a week off from updating. This c.diff infection is wearing all of us out, especially Keegan. He finally started to get glimpses of his old energy and happiness back yesterday, but it comes in waves. We have...
Keegan does have c.diff. Diarrhea to the n-th degree.Audrey has been super-glued to my side for the last three days. I'm sure the upheaval lately has her legitimately concerned we will leave her again.Labs this morning looked mostly better. Anemia worsening. Not sure why yet....
After a manic Monday, I could have used more terrific than terrible in my Tuesday.If you have ever heard the words "c. diff", you probably know what I am talking about. I knew something was wrong as I headed down the hallway (clue #1) to...
Another manic Monday trying to keep Keegan outpatient.8:30am - Draw last amount of blood that Cincinnati ordered to be sent to a private lab in Canada for testing. Assuming all the paperwork was ok and that we had done this several times, I ask my...
Things got a little busy yesterday, so I wasn't able to post that Keegan actually was allowed to go home in the afternoon. His ferritin level was 4,000, which was a good improvement (still very, very high but coming down). However, his blood counts all...
Keegan's holding steady with a little more improvement in his ferritin levels today (11,000). The rest of his labs look the same. We went ahead and switched to oral methylpred tonight at the same dose. If he tolerates that over the weekend, his last "pulse"...
The switch to IV methylpred worked, and Keegan's ferritin dropped to 18,000. The rest of his labs look roughly the same, but we'll take it. The plan remains to stay on IV until we see a bit more improvement. I am hoping that if his...
Keegan's bone marrow laughed in the face of oral steroids. Ferritin rose to 26,000 today. Lymphocytes are nonexistent, but the remainder of his labs, while all continuing to trend poorly, are not worsening at quite the rate we have seen in the past. So tonight...
Keegan's ferritin climbed to 16,000 today, and the remainder of his labs continue to trend the wrong direction (all blood counts have dropped significantly from last week; liver enzymes up; coags up, etc). An expected course for a flare. I have to laugh when I...