March 1st, 2011-Transplant admission day   12 comments

a list of all of the warning signs and transplant related rules of her stay

Today started out like any other hospital admission day.  Charlotte was ready to go before we were.  I dropped Molly off at my parent’s house this morning and by the time I got back to our place, CJ was already bugging me to get going.  So I quick showered and packed up the rest of the van and we were off in time to arrive right when we said we would.

Charlotte was happy to be back.  She saw a few of her favorite nurses right away and together they jumped for joy!  She was so cute when she saw people she recognized.  We started off by unpacking our stuff in our room, had a bite to eat for lunch, and then she had to go down to the second floor for a chest x-ray.  That all seemed to go well, but I never asked anyone for the results.  We will probably have them tomorrow during rounds.  She was so popular she was visited by Dr Diamond, Dr DeSantes, and the attending Dr Patel.  They all seemed happy that she was here and doing so well.  The child life specialist has a budget to buy toys and games for the kids going through transplant and Charlotte was spoiled!  She still has a wagon in the hallway full of toys that we can bring out when she gets unhappy or bored with being cooped up in her room.  We had to talk her out of playing in time for her to get a nap in.  Mommy and Daddy got a few snoozes in too.  After her nap, she was able to walk around the small hallway a little bit and she had a great time chasing Mommy and Daddy and playing basketball.  She asked to go to the playroom a couple of times and wanted to go see all of the other nurses, but we were able to dissuade her by playing some more.  She found a stationary bike in the hall and insisted she and Mommy try it out.

this is the extent of Charlotte's new walking hall

At 6pm they hooked up her IV lines and started her out with some fluids and IVIG treatment to boost her immune system before they bring it crashing down with the next 8 days of chemo.  She will be on a plethora of different medicines before the morning, pentamidine, heparin drip, zofran, dexamethasone.  Her first chemo starts at 6am and runs for two hours.  She gets this one four times a day for four days.  She will have several blood draws between 8am and noon to determine the level of chemo in her system.  This first chemo, busalfan, has a very fine target level they are trying to reach.  Too much and it can cause lots of organ damage, and too little will not have the desired effect.  So they will monitor it closely, draw lots of blood samples and send some off to a lab in Seattle.  They can determine how much to adjust her chemo levels to get the right amount in her body throughout the four days.

During dinner time, they brought in her nightly dose of oral medications.  Amy and I were shocked to see the syringes.  It was easily 5 times the amount of medicine we sometimes struggled to get her to take at home.  But we took our time and bribed her with M&Ms and she got it all down with no fussing at all!!  Amy and I were so impressed.  We hope she can keep that cooperative attitude up!

A huge thank you to Dawn who altered all of Charlotte’s shirts.  One of the problems with having a PICC line instead of a Hickman in her chest was that the IV lines will run down Charlotte’s sleeve and each time we would want to change her shirt or pajama tops, we would have to call a nurse in to stop her IV pumps, disconnect her IV lines and reconnect them after we get her dressed.  So we came up with the idea of splitting her sleeve between the wrist and neck and sewing snap buttons in so we could change her shirts without causing a lot of extra work and headaches.  Dawn, a recent cancer survivor herself, was able to do all of the alterations in just a week and the nursing staff was so impressed with them that they wanted to know where we bought them.  I hope this makes their jobs easier and makes getting Charlotte dressed a little happier too.  Thank you Dawn!  We have been here less than half a day and this has already been a great help!

I talked with Grandma Elske today and she said that Molly was doing great.  We figured she would, but it was just nice to hear.  I hope she doesn’t give Gma too much trouble during the night!  Amy and I both agreed that overall it was a tremendous day.  Though with no chemo yet, it was probably going to be one of Charlotte’s easiest days of the stay too.  But we have had nurses and NAs in our room about twenty times so far tonight changing out IV meds, taking her vitals, and she has been great!  She was so tired at the end of the night that she just sat in her bed and cried.  Amy and I were actually worried that something was wrong.  But she settled down quickly when she learned that we just wanted her to lay down and sleep.  It was certainly a “Thumbs Up” day for our little girl.

Thank you to all who have shared their thoughts and prayers.  We are so glad that you take the time to read Charlotte’s story.

Posted March 1, 2011 by L. Elske in Uncategorized

12 responses to “March 1st, 2011-Transplant admission day

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  1. I would not miss a post for anything,First thing every morning I check things out. Sounds like Charlotte continues to keep everybody on track.Prayers are all around you and your family . So glad Charlotte made your first day remarkable as the road for you and Amy continue to have turns and bends as I am so proud to be part of your family Love,hugs and kisses to you Auntie Mary

  2. Lon, Amy and Charolotte,
    You have taken the first step into the final stage of the cure. Put your hands in God’s hands as he leads you through the transplant, put your trust in him for a successful outcome. Our thoughts and especially our prayers are with all of you.

    Joan and Bob

  3. What a full day for all of you. It’s always so exciting to hear how well Charlotte reacts to the new experiences, and how happy she is to see people she knows. Prayers for another good day today.

  4. Your Blog is read the first thing every morning, even before our coffee! Uncle Jim says I can’t believe that they are able to write about this all the time, as tears slip down his face. We know that someone much higher up than all of us is giving you the power to do that for all of us and for the many it will help now and in the future. Charlotte is very much an UP child and and inspiration for all. Keep the faith and trust in the Drs. and nurses, we love you all

    Uncle Jim and Aunt Judy
  5. One day down! We pray that there are more days like this but know that the next week will be hard. Keep remembering God’s love. Charlotte is such a remarkable child. We just KNOW that she will come through this with flying colors! God’s blessings to all of you. Much love from us.

    Auntie Sharon & Uncle Dean
  6. I’m so happy to hear you had a good first day. That was such a clever idea with the shirts and so nice that someone was able to help you with that! Keep up the good work you guys–one day down already!

  7. Praying for you all.. XoXo

  8. Yay for a good day! Cute pictures but it pains me to see that tiny hallway for active little Charlotte. I know she will figure out a way to get her energy out though! She is so adaptable! Try to keep your spirits up and know that you have SO many people praying for Charlotte and those prayers ARE working! We are all just waiting for the day this little girl gets to go home!

  9. God speed to the next few days.

    Joe & Sue Kaminski
  10. I would have to echo what “Uncle Jim and Aunt Judy” said – it’s one of the first things I do in the morning – but I have my coffee along with my reading. Thinking of you all – praying for you all and trusting in God.

  11. Lon and Amy, my thoughts and prayers are with you. Being the parents-caregivers we need to be aware of your needs also. Hang in there, remember God is just a prayer away.
    I too read your blog every day.
    God Bless.

    Fred & Della Dartt
  12. Elske Family,

    Our angel is about to get a new set of wings ! She
    will be able to soar to a higher, better life !

    Our thoughts and prayers continue for Charlotte and family.

    Mom and Dad, take care, breath deeply, you are both doing
    a great job !

    Brittany and Mary at LCI

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