March 12th, 2011. Day +1   14 comments

Charlotte slept pretty good through the night.  Only to be awakened by the occasional diaper change and vitals.  She slept until about 8:30 and woke up with a fresh batch of hives/rash on her body, this time mostly concentrating on her face and head.  She was interested in breakfast for a little bit, but only had half a dozen bites to eat.  We were visited by the Doctor and the Fellow this morning, they said they had no more information on the donor site culture and that they were thinking of trying another medicine instead of hydrocortisone to treat her rashes so they don’t overload her with steroids yet.

She ended up falling asleep at about 11am and slept until 1pm for a little late morning nap.  Who were we to argue?  She woke up happy, though not hungry so lunch wasn’t even attempted.  Her hives started looking a little better after the medicine started taking effect but still were present the entire day.  She wanted to watch a little tv and then fell asleep again at about 4.  She had her first non-diarrhea poop this afternoon too so we hope her gut is feeling a little better.  She has been constantly bothered by tummy pain that lasts for one to five minutes, then is usually happy again.  We had tried asking her what she would like to eat for dinner and she only responded “Food”.  We spent a little while trying to figure out what she meant, she even wanted to go to her toy cabinet and show us something.  She pointed to her tub of play food and wanted me to bring it out for her to play with.  She found a plastic pasta and meatballs and said that it looked good.  We asked her if that meant she wanted us to order spaghetti for her for dinner and she said yes.  They brought it up a half hour later and she was eager to try it.

She had a few handfuls of noodles before she started saying that her mouth hurt.  We weren’t sure if that sign, combined with her constant tummy aches means that she is starting to get mucositis, a standard side effect in BMT usually referred to as mouth sores.  They can happen anywhere along your digestive tract from the mouth to the anus and can cause a lot of pain, vomiting and diarrhea.  It starts to show up when the blood counts get low.  They usually prescribe morphine and end up giving the patient IV nutrition called TPN.  We started CJ on morphine tonight before she went to bed and she seemed to respond to it pretty well.  It put her in a little better mood and she had a few more dixie cups of Fruit Loops as a snack before bed.  TPN will probably start tomorrow because she just isn’t eating enough for maintenance.

Her counts are still acting like they should  Today her WBC was at 0.3, her platelets are down to 35k, and her hemoglobin jumped from 8.1 to 11.2 because of the blood/stem cell transfusion last night.  Once the WBC goes below 0.5 the neutrophil count stays at 0.

Overall it was a good day.  No constant visits from the doctors which we take as she is doing well so they don’t have to bother her.  She was sleepy and had a little pain some of the time, but she also was happy to get down and play when she felt right.  She still maintained her cute attitude and demeanor all day so we will take it.  I talked with our nurse and had him check on her culture report at 10pm, which would be right about 24 hours from when the blood sample was taken from the bag here after the transfusion was done, and there was no growth!  That is a great sign.

Now….to update…a whopping 40 minutes later…the nurse came back in our room and said the lab just called.  They grew gram positive on the culture here too.

Yeah.  So we just gave her a bag of infected stem cells….how crappy is that?  Amy and I are not sure what to say to each other right now.  We want to reassure each other between our bouts of tears, but we can’t say anything that they didn’t already say to us last night.  It would have been nice to get more information from the donor site today if it grew into anything particular…but here we sit.  With CJ sleeping and us talking/crying.  It was supposed to be a good day.  And now we don’t know what to say or think.  We are holding on to hope that Dr DeSantes was not worried.  They said she was already well covered with the antibiotics she had been receiving.  That from what they knew about the growth, it could respond well to what she was already getting.  We are still very very thankful that the donor was able and willing to give of herself.  If she had not given, CJ would have almost no hope of recovery.

Posted March 12, 2011 by L. Elske in Uncategorized

14 responses to “March 12th, 2011. Day +1

Subscribe to comments with RSS.

  1. What a cute picture of CJ sleeping on mommy’s lap. Such a sweetheart. Keep up the positive attitude Lon & Amy as everything is going to be OK!!! I’m sure of it.

    Love and prayers, Ma Kaland

  2. Beautiful little Charlotte – keep fighting – let the meds do their jobs – trust in the doctors and continue praying!

  3. We will say a special prayer for Charlotte in church today. Keep the faith that this is her cure!

  4. I’ll just keep praying. I’m so frustrated for all of you. I’m sure the meds she’s on will protect her and this will just be another crazy chapter in the tale of her cure. Keep fighting and praying!

  5. Charlotte is such a strong and beautiful little girl. I see the pictures and I just want to hug her and nuzzle her precious little head of peach fuzz and tell her everything will be OK. Keep the faith–God is listening to all the prayers!!

    Steven & Terry Licitar
  6. Lon & Amy, This hurdle must feel devasting, but your strength and faith will get you through. Charlotte has shown us all what a courageous little girl she is, and she certainly did get that from her loving parents. Stay strong for each other as well. Love, hugs and prayers!

  7. I don’t even know what to say…this just sucks. If the transplant doctor is not worried then I guess I will put my faith in him and not worry too. I know he is being honest with you. It’s tough to hear about hard days for Charlotte as amazingly, through the last 6 months, she has had more good days than bad. Praying for rest and healing for her little body and sending hugs to all of you.

  8. I hope today will be a better day. It’s just another set back but these doctor’s, nurses and Dad & Mom all seem to be in sink with everyone now. Our prayers are with you all.

    Joe & Sue Kaminski
  9. Lon and Amy, My prayers are with you and everyone who is working to fight for CJ. She has been one very strong little girl. Please try to focus on her strengths, as she has proven to be a fighter. I wish I could be her angel so she can feel how much I care for her in her recovery. If I could take away the uncertainty for you two, I would. Know that I will be here for you in any way, any time. I am deeply sorry for the news of her positive culture, I will pray for her all day today, as i know first hand what you are going thru. Love to you and your family. Take care and give a hug to CJ for me. Dawn

  10. Praying you’ll have the strength to remain positive – keep focusing on the good – cause you know Charlotte will!

  11. Amy and Lon, My friends and I will continue to prayer for you and Charlotte.

  12. Sending all my love and prayer.

  13. What can one say but I’m sorry and this sucks. I can’t imagine what you all are going through–any of it. The ups and down are enough to bring a saint down to their knees. And yet you all still stand. Although shaken and weary, you carry on. You are all utterly amazing. Prayers and positive thoughts are being sent your way.

  14. Lon and Amy, wow — the culture report was disappointing. We are praying for Charolette, and you too. Please know that there are many, many people pulling for this little girl. I hope the medications will KO the infection in the blood.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s