March 7th, 2011. Day -4   6 comments

Day -4 means the fourth day prior to transplant.  In transplant records, the days before and after transplant are often measured as Day -5, Day +1,Day +7, etc…so I will start keeping the blog titles to match the daily reports from the medical staff.  This is because a lot of the important transplant milestones are recorded in this form so it is easier  to compare our success to what they are expecting and hoping.

In the middle of the night Charlotte awoke feeling somewhat nauseous.  She was due for a dose of Zofran, her anti nausea medication, but after an hour she wasn’t much better.  So they gave her another dose of benadryl and she seemed comfortable enough to go back to sleep.

Today was a very different day than yesterday.  Charlotte woke up bright and early (about 7:00), and very happy.  She was eager to play and watch some of her favorite Disney Channel morning programs.  She didn’t want to eat a lot this morning but she wasn’t unhappy about it.  She just didn’t seem too hungry.  She even got out a little bit this morning for some transplant hall soccer practice again.

The last couple days (and the next couple of days) are pretty busy days for us.  The doctors need to watch her urine levels pretty closely as the cytoxan can cause bladder damage if it stays in the bladder too long.  They are filling her up with fluids through her IV so we have to change her diaper every two hours or so.  I just counted (it’s 9pm now) and we have changed her diapers 12 times since 7am this morning.  Not only that, but the nurse comes in every three hours while we are sleeping through the night so CJ can be changed in the middle of the night too.  Charlotte has been really good through it all.  Over the last several months she has shown us that she has been ready for potty training by leaving us when to go potty, telling us when she is going potty and when she has gone potty…the same goes for old number two.  And she usually puts up a fight when we are trying to change her.  So Amy and I think that she is quite ready for potty training, we just knew that with the amount of fluids she will be on in the hospital, we didn’t figure it was fair for us to try to train her at home and then make her go to the bathroom so often while she is here.  So potty training will have to wait until we come home.  Anyway I told you all of that because Charlotte has been great at allowing us to change her diapers 12 times since she has been awake today.  She really seems to know that she is very full and needs to have her diaper changed quickly because she probably knows she will have to go again sooner than usual.  We couldn’t have asked for better cooperation from her.

We also need to put cotton balls in every diaper so the nurses can better get at the urine samples to test for hydration levels and evidence of blood.  One of the symptoms of the bladder issues would be blood in her urine.  Last night’s sample showed some small amounts of blood so Dr DeSantes was called (at 3am) and asked what to do.  He said that she should receive more fluids and watch the levels in the next diapers.  The blood levels went down and down and eventually there were no traces of it found.  So that is a good thing.  She is also given medication to coat the inside of the bladder (mesna) and they have increased that to run 24 hours for the next few days to keep the bladder issues away.  So far it has been working.

They are also going to give her benadryl every 6 hours to keep her from feeling nauseated.  So she is starting to max out the IV pump capacity of her existing IV cart.  Here is a picture of her nurse Darlene trying to sort out the lines to give her the morning chemo dose.

She ate a great lunch and went down good for a nap.  She woke up a little early and was not too happy about it.  She seemed very needy but she ended up only being a little tired.  After she snuggled with Mommy for half an hour watching TV, she was ready to play again.  Today was our 6th day in the hospital so she needed her dressing around her PICC line changed.  This process is a little like getting her port accessed.  Mommy holds her down while the nurses remove the tagaderm and clean the line area.  Charlotte usually is crying and screaming because she is not a big fan, but after the few minute process is over she was back to her normal happy self.

We saw Dr Diamond again today.  She is pleased with Charlotte’s progress and she was very sweet asking Amy several times how she and I were doing emotionally.  Last fall, she was very concerned about recommending an unrelated BMT because of the many risks involved, but she knew it would be the right thing to do.  We are sure this decision was as hard on her as it was on us.  It took her several weeks to come to this conclusion, but we trust in her and the rest of the doctors and staff here and know they will do an excellent job in not only getting Charlotte cancer free, but also take care of Amy and me in the process.  Dr Diamond is a wonderful person and a tremendous doctor and Amy and I have often discussed how we just lucked out getting diagnosed and transferred to AFCH when she was on duty so she would be Charlotte’s primary doctor.  Now that Charlotte is in transplant, the primary role will be handed over to Dr DeSantes, whom we also trust and believe in very much.  But Dr Diamond has remained a large part of our lives in the hospital and we are very thankful for that.

The evening was spent playing with one thing after another from her toy/craft cabinet.  She was going through toys and coloring books quicker than we could put them away.  We finally got her to settle down in front of the iPad again and she loved it.  She now knows how to change between various learning games and excels at playing almost all of them.  But she really loves that thing.  I may have to get one for myself.  I mean for Charlotte!

She had a good bath tonight and ate pretty good again for dinner.  She went to sleep with Mommy at 9pm.  Amy came into the hall and got me about 9:50 and said that Charlotte was awake and crying, asking for me.  I went in the room and Charlotte couldn’t tell us what was wrong.  She said her tummy didn’t hurt, and she didn’t feel like throwing up.  All Amy and I could think was that it was about three hours since she had last gone potty.  So after she settled down a little bit, we had her stand and play with the iPad (there is that wonder tool again) and she was able to go pretty easily.  She instantly perked up and was very happy and lively.  We had it tested for blood right away and it was still negative so that is a relief.  We encouraged her to go again while she was up and we are now trying to get her to sleep at 11pm.  I hope tonight goes well too.

Posted March 7, 2011 by L. Elske in Uncategorized

6 responses to “March 7th, 2011. Day -4

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  1. good luck!

  2. What a great picture of Charlotte – captures her positive spirit and says it all – thumbs up!

  3. The support you offer each other through Peanut’s daily medical challenges is a true inspiration.

    Cheryl Batterman
  4. Charlotte continues to have the right idea and spirit … two thumbs up and keep moving forward! Thank goodness for her wonderful doctor’s, not only caring for her, but for you and Amy as well. We hope Charlotte has a good day today. Love and prayers are coming your way.

    Aunt Cyndee & Uncle Earl

  5. All here at work (our church) follow Charlotte’s progress closely and continue praying. Each night when Laura says bedtime prayers she always adds an extra “God bless – especially Charlotte”.

  6. Dear Elske Family,

    Our Christmas Angel, Charlotte is making us very proud !

    We could hardly wait for her to start the bone marrow
    process…..knowing this will be her start to getting better
    for good.

    Mom and Dad, take care of yourselves. In many ways this
    is so much harder for you two, than for Charlotte. You
    are great parents and your two girls are very lucky.

    We will continue to pray for your family.

    Brittany and Mary at Lions International

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