January 19th, 2011   1 comment

Today Mommy spent the day at home in Columbus cleaning and I stayed at the hospital with Grandma E to watch the girls.  It was another good day for Charlotte.  She was very active and energetic all day.  She ate well, and had almost a three hour nap.  She also had 30 neutrophils today for the first time in over a week.  It doesn’t mean we can go home yet, but we certainly couldn’t consider it without any.  Those numbers may very well drop tomorrow as the levels often do, but we are encouraged that she once again is recovering like they thought she would.  We are thinking that maybe by the end of this weekend we might be heading home.

There is still much to do before transplant in February.  Charlotte has to undergo several tests to determine her organ health and we will need to either replace the access port in her chest with a two line hickman (surgery) or possibly keep her port for later blood draws (she will need frequent blood draws post transplant for a year or more) and have them install a PICC line in her upper arm (sedation).  Her port currently does not offer enough lines to get all of the necessary fluids into her that a transplant requires.  She will be needing blood and platelet transfusions maybe daily, half a dozen different antibiotics, anti-rejection medicines for the marrow transplant itself, IV nutrition and pain medication.  All of these would be impossible with a single line port like she has.  So there are probably another 5 or more return visits to get this all taken care of and Amy and I would like to see some of it scheduled or discussed in more detail before we leave so we can better plan our next month if at all possible.

After Amy got back this afternoon, Charlotte actually spent about 20 minutes running and jumping down the halls with a couple of the nurses.  They seemed more tired than she did!  They went back to their duties and she kept on running and playing.  They are also encouraged by her high activity level with such low numbers.

Molly slept for about 5-6 hours again through the night so she too is allowing us to rest a bit more than before.  She did keep Grandma busy today as she was not interested in sleeping in her crib much at all during the day.

I spent a little time during Charlotte’s nap downloading some new apps onto the iPad the hospital gives us while we are here.  She took to this one pretty quickly and seems to enjoy it.

Posted January 19, 2011 by L. Elske in Uncategorized

One response to “January 19th, 2011

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  1. Cool ap… and what’s the money in the other photo for? Tips for the awesome nursing staff?

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