Day +19 October 11 & Day +20 October 12

I was almost ready to post yesterday when we found out about dear Bella.  Our hearts are broken for Angelique, Tim, and Ali...and ourselves.  It is a tough day in the PICU and RMH today for the staff and families as well as within the EB community and other followers.  Bella is in our every thought...

Day +19: Elle decided to improve.  Her blood pressures have been gorgeous. She was not as puffy either. Blood gasses good, temp good, WBC back up to 0.4 :) She also looked at me, appeared to focus, and appeared to track as well. 

There may also be a fungus among us.  Possible Aspergillus -quite a buggy repertoire: Pseudomonas, Achromobacter, CMV, and now this.  It's just an expected down side to the bone marrow transplant.  She has no immune system ...YET.  Despite all of this and the other chemo insults, her skin is no worse.  The areas that get aired out are actually looking better.  Love that.

All of the docs (Pediatric ICU, Bone Marrow, Kidney) are happy with her status as are we.  BMT Dr. Miller is going to lab to check if the WBCs are comprised of neutrophils versus leukocytes which would possibly mean the difference between new donor cells "taking" or old ones hanging around.  I stroked her head and held her hand for a little while (my new favorite thing) but am letting her rest now.  She is such a sweetie, even paralyzed and sedated! 

Little dolly opening her eyes- bigger than this even

Stefan, Chloe, and I were able to spend some time in the Fall sun.  We enjoyed fabulous, warm weather with foliage just exploding with Autumnal color...amazingly beautiful, but unfortunately, I couldn't really capture it with photo.  Chloe cracked us up at one point pointing out Sumac.  We said, "Wha?? It is?"  She said Pastor Dale showed her.

Standing over the Mississippi

Minnehaha Falls

Park bench was seriously too high up

                            



We had fun just exploring, walking over the Mississippi a bit, and discovering the Minnehaha Falls; an unexpected delight. There were a LOT of steps up and down the various vantage points around the falls though, so we got tired. After we returned to the hospital, Grandma took Chloe back to RMH and S and I squeezed onto a twin bed together in Elle's BMT room for a really brief nap.

 


Day +20:  Elle's WBC counts are 0.6 with an actual ANC of 400!! Looks like she may be engrafting the donor cells (they could be her own cells too- can't tell yet) and she is looking really good considering everything she has going on.  She is 5.78 kg down from 6.09 so we're pleased about that.  We really want to keep control over the fluid overload in her tissues if at all possible. The Docs again are very pleased with her status and we are trying to make small adjustments instead of a lot of big changes so we can assess how the changes affect her. 

It was circuit change day, body dressing day, AND we were behind on the limbs & central line dressings, so she is having a very long, full day poor thing.

The Vikings players came to visit the kids in the hospital today just after we finished her dressings so she looked good for them.  I was told there was a patient that had open heart surgery with a plan for a second part surgery and so chest still open but covered with a large but clear dressing.  I guess you could still see heart in there so the poor Vikings got an eyeful and looked a little freaked out.  They were really nice guys though and polite; talking gently to Elle and respectfully to me and Stefan.

Go Vikings! Stefan told them about how he recently attended his very first football game and it was the Vikings

Back on the Prisma circuit and doing fabulous!  After I finish her line dressings,legs, and S usually does mouth care, we can let this baby rest!