I am currently sitting on my couch waiting on Chad to get home from a men's meeting at church before I can run back the hospital and relieve my mom. Shes been there all day and I am certain she is ready to get home and relax...so this will be short. Or semi short.
You know, as in " cancer is a doozy and wrought with fuss and bother" kind of short.
Pipers fevers ran high all weekend until Dr. Chiang began her on steroids to combat that rash she has had...four doses over 48hours and the girl was a hot mess. But she has been fever free since then and her rash, which is assumed to be gvhd, is almost gone. Before beginning her on steroids, they drew clean blood work for her CMV levels which have come back at 22,000. And that was before the steroids and the immune suppression that they have on her so we are looking at more CMV even still. The Infectious Disease doctors have been called in and the transplant team has done a pow wow to get a game plan going. No one is concerned that Piper has not totally engrafted yet but still, we need to see some counts or this CMV is going to be out of control and will have some serious effects. At this time they are going to begin Piper on IV Neupogen to boost counts as well as keeping her on 2 different types of CMV antiviral medications. Both can be heavy on her organs so they will be watched and we need prayers for effectiveness and no side effects.
Because of the steroids, Piper had a few hours of very slow heart rates. They did an EKG to rule out problems and damages and she looks great so it's been chalked up to the mega doses of steroids...she has never been a friend of steroids, that girl. Her heart perked right up when the steroids began to leave her system. Really, everything began to perk up when the steroids wore off.
She is sleeping a lot. The process to wean her from the fentanyl was slowed due to the very miserable thing she was on steroids but hopefully she will continue to tolerate a lower dose each day and still go back to her cheerful self. Whether its the funk her body is feeling, the lower doses of fentanyl or the sheer exhaustion catching up to her, but Piper is definitely doing a lot of resting. She is also walking around some and playing so she has every right to be one tired little two year old. One tired and crazy tough two year old, no doubt.
Pipers counts from today:
All well and good.
Still asking for her milk but not interested in drinking much...still, an interest is good and we will build on that. Her weight was up a little bit last night so she was given lasix to bring it down to normal so as to not cause her body any unneeded stress. Still plenty of issues that could become problematic but still under control at least for now.
Yesterday marked 4 weeks here at Egelston and we are feeling it. We all miss each other dearly though I'm reminded how tough my Linley is when she tells me that we have to be strong and be like a team. And we do, she is a smart girl. (She gets it from her mother.) They tell you when you admit that the average stay is 4-6 weeks until discharging and staying at the apartment at Ronald McDonald house...so best case scenario I am hoping to be out of here in 2 weeks...not that anyone has told us that, it's just my optimistic and tired self shooting out idea and hopes. We will see as each day rolls on and Piper becomes stronger, not weaker, please God.