November 2nd, 2010   5 comments

Charlotte didn’t do too poorly last night.  She slept in the rocking chair with Mommy for about an hour until the weird position was just too much for Mommy to take and she needed to lay down.  Charlotte was still awake enough to know that she wanted nothing to do with laying in bed so I slept with her in the rocker for another hour until I realized what Mommy was talking about and decided I was done there too.  When I woke up at midnight, Charlotte was pretty out so I was able to lay her down to sleep with Mommy in the hospital bed and I took my rightful place on the couch/bed/cot thingy…

There was little more disturbance in the night as the three of us slept pretty good after midnight…then I woke up to go to work, Mommy showered and checked her

Charlotte taking pictures again!

email/voicemails, then went back to sleep with Charlotte….until 9:30 to be woken up by rounds!  The doctors were very happy again today seeing Charlotte’s results and they were also very impressed with Charlotte in that she wanted to actually stand with Mommy and listen to the doctors talk amongst themselves during rounds.  They said they can’t remember the last time a child patiently listened and waited with her parent in rounds.  Her numbers continued to decline as expected.  So far, so good.  Her temperature was still on the high side this morning, but not high enough to worry the staff yet.  She had a platelet transfusion today too as those were down to 12k.

Mommy was able to talk with the doctors a little bit more today.  Last night she and I were worried when we saw the treatment roadmap for round three that would probably start very shortly after baby will be born.  Round 3 chemo was reduced to 2 (instead of 3) different drugs, and 5 (instead of 10 and 8 ) days.  However the dosages were a little scary.  The etoposide was 150mg/day versus the 100mg we were used to, but the cytarabine is going from 100mg/day to 1000mg/day!!  That is quite a bit higher than we expected to see and that got us concerned.  So Amy asked the doctors about it and they said that they were not worried that Charlotte could handle it and the side effects.  They continued to reference her [very rare] high activity levels and [very rare] good attitude through the first two rounds and that gave them no reason to be alarmed that the dosages seemed too high at all.  They did recommend that we stick with the Dex (steroid) that we had disliked earlier this round.  Amy and I now agree that, compared to the clingy, painful way Charlotte is acting with the higher temperatures the last two days, we will take her being a little (lot) moody if the Dex keeps her fevers and nausea minimal.

Charlotte continued with her high temperatures through into the afternoon when she wasn’t interested in too much lunch.  Regular naptime was pretty much out of the question with her late awakening this morning so Mommy put her down when she was getting tired which ended up being about 2:30.  I was just getting back to the hospital at that time because Mommy needed to leave for her prenatal appointment (again-all is well there).  Charlotte woke up and I laid down with her while she fell asleep.  She was up and talking to me until about 3, then slept until about 4-4:30.  When she awoke, she was a little clingy and just wanted to hang out in the rocker and watch TV.  Her temperature then was over 101 so that was high enough for the nurses to start their procedures.  She is now on antibiotics until she leaves the hospital and her blood is being cultured to check for bacterial infections.  But at least we were able to give her tylenol to ease her symptoms a little.  When Mommy returned at 7:30 Charlotte had been up and out in her stroller and was playing in the playroom like last night.  Eventually her temperature returned to a normal 98.3 and we went back to the room.  Again by the time we were ready for bed, she was overtired (probably) and wanted to fall asleep in the rocker….

The night nurse just came in and said that if Charlotte continued her high rate of breathing that they would need to do a chest x-ray…let’s hope that doesn’t happen…

Posted November 2, 2010 by L. Elske in Uncategorized

5 responses to “November 2nd, 2010

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  1. You guys are doing a great job being an advocate for Charlotte with the guidance of the doctors. The medical staff is wonderful but you know your “bug-a-boo” and “pumpkin pie” the best. 🙂 Sending up prayers for a restful night of sleep for you all!

  2. Hope and pray for all things good.

  3. today will be a better day. Hang in their

    Joe & Sue Kaminski
  4. Love the pose by Charlotte in the chair, but sad to see the fever cheeks. Prayers, positive thoughts and cyber hugs to you all. So happy to hear that Amy and baby continue to have good news as well! Love you guys

  5. Love the “Daddy’s Little Girl”! Hope things are going good this afternoon. So happy to hear that Amy is doing good and the little brother or sister. Love to you all.

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