March 14th, 2011. Day +3   10 comments

Charlotte woke up at 10am again today.  She seemed to sleep well during the night.  Had a few coughing fits but overall it was pretty restful.  She wasn’t interested in eating breakfast this morning, but we had a few things to do right away.  She needed to get her vitals taken, then we had to get her into a bath after a few minutes of morning TV watching.  She was not interested in the bath and starting fighting us right away so that only lasted about 5 minutes.  But it seemed to do her bottom good.

Her rashes on her head looked better this morning.  There are still a couple on her face, but they will probably clear up in a couple more days.  After we got her bath done, she needed some platelets and was ready for some hall time.  She was excited to play some more soccer.  She didn’t last as long as previous nights, but we think she did darn well for where she is at in her treatment.  The PT got to see her play around the halls so it is good that she is seen being so active.  After her platelets were done being transfused, we needed to disconnect her tubes and change out her safe site.  The nurse was having trouble getting it disconnected, it was so tight, so I volunteered my strength.  I took a couple of forceps and proceeded to break the plastic connector.  It was not repairable/replaceable and it was leaking all over her.  So we had no choice but to pull her needle from her port today.  It was due to be pulled tomorrow, so it just happened today instead.  We have to reaccess her port if she spikes a fever to pull a culture from it, but we will be happy just to have it stay out for a little bit until then.

The doctors decided to start Charlotte on TPN (IV nutrition) tonight.  It requires two more pumps added to her IV rack so it is now maxxed out.  She now has 6 out of 8 pumps running continuously and the 7th is used almost all of the time for her different medications throughout the day.  It is also causing the weight of her PICC line tubes to increase a bit but she is handling it like a champ.  The wound nurse stopped by today to look at her bottom and she is pleased with how it looks and recommends we stay on our current course of treatment.

Tubies to the max!

We saw Dr DeSantes this afternoon and he said things are looking good.  The stem cell bag culture grew out and he doesn’t remember what the name of the bacteria is…something he has never heard of.  But he believes it was a surface bacteria, likely not in the donor’s bloodstream and probably the result of the needle going into the skin of the donor and getting into the blood that way.  He said they did test it for sensitivity and it responded well to many antibiotics, so he believes CJ is well covered.  He also thinks that the bacteria was likely killed off as it was being infused.  He thinks that if she was going to get sick from the stem cells she should have done so already.  They did take a blood culture from her today just to make sure she isn’t infected, but it was strictly precautionary and they don’t expect anything to come from it since she has been feeling so good.  He believes that CJ should start feeling pretty crummy towards the end of the week as the mucositis gets worse and her numbers continue to stay down until she engrafts.

Thank you so much Dawn. CJ and the nurses all love her new shirts!!! This smile's for you!

Today her WBC was 0.1, platelets were at 20k (she was transfused today, so it should go up tomorrow), and her hemoglobin was 9.5.  She is now lower than she has ever been in the first four rounds.  She reached as low as 0.2 last round, and she might go even less than 0.1, but if she doesn’t Dr DeSantes said that’s ok too.  She will stay this low until she starts to show signs of engraftment which usually happens between Day+7 and Day+21 so we have a while to go.

She took another 3.5 hour nap and woke up happy again.  She spent the night playing in her room and watching TV and having a great time.  She didn’t have much to eat at all today, but we will try to get more snacks in her each day.  Even though the snacks were few today, she never once complained about her mouth hurting from the mouth sores, so we are again relieved that the morphine is keeping her comfortable.

Charlotte played until the very last minute (this video was taken at 10:07pm) , even wanting to play with her toys in bed.  She was late in getting into bed again, almost 10:45pm, but we aren’t about to complain that she is spending her evenings feeling good.

Today was another good day and we are thankful for that.  Please say another prayer for Alexis.  She had to be moved back into ICU yesterday so we hope she is doing better.  We are fortunate to have CJ feel so well now that we can concentrate our concerns on Alexis and her family.

Posted March 14, 2011 by L. Elske in Uncategorized

10 responses to “March 14th, 2011. Day +3

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  1. Charlotte, you are AMAZING!!!! Amy & Lon, through all the rough patches still to come, may these unbelievably GOOD moments with Charlotte help comfort you and see you through the next obstacles. Sending love and tons of hugs to our ever so strong friends who we are lucky to have as neighbors. What a lesson you three, plus Molly and Grands E & W are teaching so many of us. Debbie

  2. Great soccer video! Amy – I applaud your abilities to maneuver the IV rack and keep up with her! Continued thoughts and prayers for all

  3. I found a quote today that tells all “Don’t tell you God how big your storm is. Tell the storm how big your God is.” Our God is truly looking over your storm and will surely calm it.
    Cute videos tonight.

    Hugs and prayers. Ma Kaland

  4. You three are truly amazing, Charlotte especially. Her appreciation for playing, and how well she’s handlingthis all. I know that her ability to accept what she’s going through comes from you. Keepher in good spirits and we’ll take care of Molly. Well, G’ma E will really do most of that. Love you guys, and keep up the posts. Praying for all at AFCH. G’ma and G’pa E

  5. The video of her and the puzzle just made me smile, I love how she kisses the princess at the end! Thank you for having the strength each day to write and put together these updates.

    Justin & Holly Christian
  6. Charlotte, cousin Meredith was still awake at 10:45 last night too! Like Mommy says, you and she will be great at sleepovers someday! 🙂 Wonderful to see the smiles and playfulness in the videos. Thanking God for another good day for Charlotte and continuing to pray for Alexis and Alison.

  7. Charlotte’s resilience and energy is amazing! How does she do it?! Keep up the good work!

  8. Fantastic Videos!! Cayden and I were cracking up with that puzzle =) Love the kisses in the end! So cute!!

  9. Thank you soooooo much for the smiley photo of CJ! I am so happy! I will have many great days ahead after seeing her beautiful face. Such energy! She inspires me! I have had a cold now for 4 weeks, but I’m feel’in fine now! I can’t wait to see her again, such a sweetpea! Thank you Lon, for taking the time to write. It is a reflection on your upbringing. You have a super family and support system I’m sure! Take Care. Dawn B

  10. Thanks for keeping everyone up to date, the videos and pictures are so much fun to see. Her energy is amazing! We were at AFCH today and sent some extra good prayers up to you guys today. Take care

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