March 18th, 2011. Day +7   4 comments

Charlotte slept until almost noon again today.  The difference is that she was sleeping by 9pm last night.  So she had a pretty good snooze overnight.  Amy and I were secretly hoping that she would wake up refreshed and happy like she did yesterday.  We asked todays nurse her thoughts on waking her up and she too said we were better off letting her sleep.  She did eventually wake up, and pretty happy at that.

Rounds came shortly after her waking and there wasn’t much new to be said.  More precautionary things that would have to be done should she get worse or experience more serious symptoms.  But for now, everyone seems happy with where she is at.  I will have to admit, so are Amy and I.  This is usually the time the BMT patients start feeling pretty rotten.  And so far, despite fevers here and there, and higher temperatures the rest of the time, she sure is easy and fun to be around.  Unfortunately, today we were not able to get her to eat anything all day.  She did take all of her oral medications, but wanted nothing else to eat.

Her numbers today started off a little shocking.  The CBC results came back with a hemoglobin level of 4.6, very not good.  So the two residents rushed in to examine her quickly and look for signs of anemia.  She seemed fine to both us and them so they retook the test.  This time it came back with a more reasonable 9.4 level.  Her WBC was 0.1, and platelets were 35k.  So hopefully she won’t need a transfusion until at least tomorrow.  We have finally noticed that her hair is starting to fall out again.  She found some on her hands today and was a little curious about it…we weren’t sure what to tell her.  She really didn’t care last time so it would be easier for us if she didn’t care now.

Dr DeSantes stopped by this afternoon before her bath and he said he was very happy to see her so active and playful.  He said it was a good sign, and that next week, he expected more of the same.  Usually the patients feel quite bad at this time for a week or two, so she probably has at least another questionable week left, but hopefully she will respond as well as she has so far.  He looked to be very pleased with how she has responded at this point.

He told us that he wanted to have her port de-accessed.  It was only installed on Wed and wasn’t scheduled to be removed until Tuesday.  We started to express our concern about having to re-access it when she had a fever again soon.  Dr DeSantes said that leaving it in and unused was a higher risk of infection, and each time she spikes, that is a lot of blood they need to culture from both her PICC lumens and her port.  So he said that a port access should only need to be done for every new fever, not every fever.  He defined every new fever as one that came around after 48 hours of no feverish times.  So if she does spike tonight, we won’t have to access it.  The port de-accessing came right before bath time, we figured it would be good for her because it would be one less wrap to have on her tummy while she bathed.  But today was not going to be a happy bath day.  She cried and fought us the whole time she was in the tub.  It didn’t last for more than 5 minutes, but at least we tried.  So hopefully we will have at least a couple of port tubie free days ahead.

Overall, it was another great day.  She had some temps that were higher than normal, but we haven’t given her any tylenol since yesterday morning so we think she is doing pretty good.  One week post transplant and all is well.

Thanks for your prayers for Charlotte.  We request that you please keep Alexis and her family in your prayers too.

Posted March 18, 2011 by L. Elske in Uncategorized

4 responses to “March 18th, 2011. Day +7

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  1. Praying!

  2. Loved the photo showing off all her beautiful teeth–other than the “short” hair cut, she looks like every other 2 year old. Keeping my fingers crossed she keeps this smile through the next week.

    Cheryl Batterman
  3. You guys all seem to be relaxing better and Charlotte she is a brave little girl. It seems that everything is doing it thing with medication. Our prayers are for all of you .

    Joe & Sue Kaminski
  4. One week down! Great job you guys! We are so thankful for all of Charlotte’s good days and pray that they continue. Her little body is responding so amazingly! Prayers continue for Alexis too, praying hard.

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