February 9th, 2011   7 comments

Today started out being a pretty good day.  I was able to sleep in a little bit because we didn’t have to leave for the hospital until about 11am.  We weren’t terribly interested in getting CJ up early either since she wouldn’t be able to eat or drink anything anyway.  So we took our time, tried to avoid her requests for water or snacks and left after Grandma E showed up to watch Molly for a few hours.

We got there in time to wait for a while because things weren’t ready yet.  So we had fun playing in the play room for quite a bit.  We found out that the NP that was supposed to install her PICC line did not install a double lumens PICC line in young kids.  So if we only needed one line, or she was older it would have been fine, but not in our situation….so we don’t really know how that got screwed up either…

So the nurses and our NP Lisa set out to find someone else to install the PICC line.  The UW hospital actually has a PICC line team…I guess they do this pretty often…but they usually only install lines under general anesthetic and in the UW hospital, not in the pediatric sedation rooms.  They said they would send someone over to take a look with their ultrasound machine to see if Charlotte had big enough veins to do a double lumens PICC.  He arrived pretty quickly and said that she should do just fine with what we were requesting since her veins were so good.  So we finally got her sedation started at just after 2pm, about an hour late.

Dr Diamond first did the bone marrow biopsy, and lumbar puncture.  The nurses had to put in a catheter to grab some urine.  They also brought in a UW dentist to stop in for the dental evaluation.  He showed up and said that her teeth all looked great-though her second set of molars had not come up yet, and he expected them to show up anytime because of the swelling.  We don’t know if that means trouble for CJ’s transplant, but we will find out next week.  Then the PICC team installed her new double lumen PICC line into her upper left arm to reduce future “pokes” during transplant unless medically necessary (we hope not!).  And after another half hour the nurse came in to tell us all was done.  She was still out when we got there but was starting to wake up very soon.  She rolled around the bed a couple of times before we put her onto Mommy’s lap while she started to stir.  She had come out of sedation very, very early so she was going to be a little uncomfortable and confused for a bit.

It was then that I noticed her PICC line dressing was leaking blood.  After we got her mesh protective barrier off it for investigation, we noticed the dressing was soaked and she was bleeding pretty heavily from the line insertion point in her arm.  After a brief attempt at stopping the bleeding by applying pressure, the nurses determined that there was too much blood already tainting the dressing and the bleeding was not getting any better.  All of this time, Charlotte is still thrashing about because she is coming out of sedation.  I would categorize the next 40 minutes as a pretty horrific scene.  It was spent with Charlotte on Mommy’s lap, me holding her arms and legs down, and three to five nurses removing her line dressing and attempting to stop the bleeding and clean and redress the line.  Charlotte was screaming most of the time.  They had already given her some additional versed ( sedation medicine) to calm her down,  but it didn’t take effect right away and didn’t knock her out at all.  She was still very sleepy and didn’t like the hard pressure on her arm and the pain so she was just pretty miserable.  There was plenty of blood to go around, and we had to press the nurse call button at least twice to get more hands in…usually to open more gauze/cleaner/gloves as they were needed at a record pace.  They needed to consult the PICC team to check if the line had come out too far and then they needed to work at stopping the bleeding and get CJ under control.  There was even talk about us maybe not going back to Columbus if she would not clot soon enough.  But her platelet count today was at 266k so they figured she should be ok any second…

They finally were able to stop the bleeding and redress it well enough to last the night.  They knew we were coming back tomorrow for more sedation so they would do a more thorough cleaning and redressing then.  By 4:30 Charlotte’s line was redressed and she was trying to recover normally.  She eventually got to drinking some water and eating a few cheerios.  We were instructed on what to watch for tonight with her line as far as bleeding goes and she still had a compression bandage on and they wanted to make sure it would not be too tight for the whole night.  We were released about 5:35 and started for home.

She kept eating her cheerios the entire drive home.  All the while her speech got better, her attitude got sweeter, and she started becoming more and more Charlotte-esque.  We stopped at McDonalds in Columbus and she ate almost her entire happy meal!  And every minute that she spent tonight at home was better than the previous one.  She was soon back to her normal, jumpy, active self.  She didn’t really pamper her left arm too much toward the end of the night.  It seemed like the dressing was pretty much clean yet at the end of the night so hopefully the bleeding has been taken care of.  We do have 8 ounces of rotten tasting water to try to get into her for her CT scan before 5:30am.  We aren’t too hopeful for that though.

On another positive note, Dr Diamond said that the preliminary biopsy results showed lots of good healthy cells of all kinds and no evidence of leukemia.  The official results won’t be available for several days yet, but this is good FANTASTIC news indeed!  Her dental evaluation was pretty good, and her urinalysis was also normal.  So it was a challenging, but damn good day.  Hoping for another one tomorrow.

Please save some of your prayers for 5 year old Alexis.  We have gotten to know her mother and father pretty well during our last admission and she is in transplant right now.  They have had to move her back to PICU and intubate her.  She will be ok as she is a brave and strong little fighter.  We are praying this is just a temporary bump in her road to a full recovery!

Posted February 9, 2011 by L. Elske in Uncategorized

7 responses to “February 9th, 2011

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  1. Dear Family of Charlotte,
    It has been awhile since I read an update on CJ., because I just finished my last therapy myself. I pray for her recovery and strength for your family. I know she will keep fighting and your family will be stronger going thru this terrible ordeal. She is scheduled for surgery on my birthday, so I am taking that as a sign she will be triumphant! Love to all of you. Dawn B

  2. Wow, what a day! Sounds very challenging, but I’m so happy to hear all the positive test results! Keep up the good work you guys!

  3. The resilience of children is just remarkable and Charlotte is at the top of the pack! It was a tough day but I’m glad to hear it ended on a positive note…a happy Charlotte & good test results! You can’t ask for much more than that. Here’s hoping the night went well and you were all able to get some much needed rest. Adding Alexis to my prayer list. 🙂

  4. What a challenging day for all of you. Miss Charlotte sure came through it like a champ! Yeah, for two days of testing behind you. Two thumbs up for more good test results to come!!! Love to all …
    Aunt Cyndee and Uncle Earl

  5. Wow what a day now the first scare is over and lets pray that the next few days will go smoothly.

    Mickey D sounds good. XXXX

    Joe & Sue Kaminski
  6. Prayers continue from this end. Charlotte is getting to be quite a “celebrity” at our church. Lots of people asking about her and praying for her, since she is on our weekly prayer list. I give weekly updates at our church staff meetings and share your pictures. (We all love the “thumbs up” pic!)

    Charlotte’s resilience and your (Lon & Amy’s) faith and positive attitude through this all are inspiring and and provide a beacon of hope to all going through difficult situations. God bless and we’ll keep the prayers flowing for Charlotte, Alexis, and families.

  7. Prayers were said in church again tonight by Pastor Schultz. He said “Pray for our little Charlotte Elske who is patiently waiting for a bone marrow transplant at AFCH in Madison”. So many people are asking about her…..many prayers for such a sweet little girl. Please give our best to Alexis and her family and pray that she is doing much better. Much love…..
    Auntie Sharon and Uncle Dean

    Auntie Sharon & Uncle Dean

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