11-3-14

11-3-14

Yesterday was filled with good news and not good news.  The great news is that for the first time in K’s life her ANC is 1200 and she hasn’t needed GCSF in 2.5 weeks.   That is pretty exciting.  To the point I had tears in my eyes.  Most likely she will get G on Thursday but hey that will have been 3 weeks since the last infusion!  Her other counts dropped but they are still ok and it has been almost a month since her last blood transfusion!  The other good news is her CSA level was on the higher end of normal so she gets to back off of one of her CSA pills which always makes her smile.  Me too because I just love giving my child hazardous material that keeps her alive.  Talk about crazy.  The other good thing, she was put on Clinda because her Hickman site was red and sore and it seems to be working beautifully!  We increased her anti emetics and she didn’t lose weight over the weekend!!!! and she started eating again 🙂  Happy dance!!!  Praise the Lord!

The yucky news – Kimbell’s kidney numbers stink, not sure how else to put it.  Cook’s and MN are backing off as much of the nephrotoxic drugs as they can so she is down to one valtrax a day now and her CSA has gone down as well but as of now the drug changes are not enough to keep her kidneys in check.  Last Monday we saw a different BMT doc then we normally see, don’t get me wrong because I really really like her and I think she was trying to motivate K to drink more, but she told her that there was a good change K could get her line out this week.  Unfortunately even though K has increased her fluids and they can see she isn’t dehydrated by her numbers her kidneys have taken a hit and they love their extra fluids so yesterday they increased her fluids to twice a day.  K was asleep during the appointment and when she woke up I told her but I think she thought if she didn’t listen or hear me it wasn’t true.  Anyhow when I had her hook up to the second set of fluids last night she was absolutely positively crushed.  It broke my heart.  The thing is, it isn’t just about being hooked up twice a day but it means dressing changes, showers being awful, cap changes, this thing hanging out of her chest, infections, and the fact she can’t take a bath.  Ever since K was a baby the bathtub has always been her safe haven.  She loves to soak with her bubbles in a hot bath.  It also means she continues to go to clinic twice a week for the foreseeable future.  She was sooooo excited about going once a week once the line was out.  I hate seeing her sad and disappointed, especially after everything she has been through.  Please pray the drug adjustments pay off so that maybe just maybe we can try and decrease the fluids again.  If they don’t she will tied to IV fluids as long as she is on the CSA which is all goes well she will be done with at the end of March.

Thanks for the prayers 🙂  www.kimbellstevenson.com

About the Author

John & Paige