April 8th, 2011. Day +28.   17 comments

Sorry for the tardy post everyone.  Things have been a bit hectic recently.  I woke up yesterday to go back to Columbus for the day and night to get the carpets cleaned and reassemble the house.  Amy spent the

CJ and Dr Diamond

day and night with Charlotte.  She had a pretty good day yesterday, but her blood pressure readings were still too high for the doctor’s liking.  So at the end of the night they started her on a BP medicine.  Although CJ didn’t mind the taste of this one (she said it tasted like strawberries), the timing of the medicines were not too swell.  Amy had to wake her up at 1am to get her BP taken and medicine in her.  But together they pulled through and woke up at 9ish this morning.

Dr Diamond and CJ's best nurse Tracy.

All week, the plan is that Charlotte would get discharged today if things all went well.  But these new blood pressure readings, combined with the fact that she hasn’t pooped since Tuesday, left the discharge date up in the air for a little while this morning.  We started her on Miralax again and even gave her a dose of some other pretty rotten medicine (although Charlotte said this one tasted like M&Ms) to try to get her to go.  We also noticed her body GVHD rash start to get a little more red and pronounced so we weren’t sure what to make of that either.  Her WBC today was up to 3.0, and her neutrophil count was over 2100!

We have really been giving her a lot of oral medications over the last few days in preparation for coming home.  She is now on up to 6 different things two or three times a day.  Some are in syringes and some are pills or capsules that we crush and try to mix with water in her sippy cup or into her other syringe meds.  She usually cries with all of these and sometimes it ends with Amy or I holding her arms down while we force the syringe into her mouth and get her to take it.  Not fun for two and three times a day but we know it needs to be done.  We try to tell her the importance of the medicines, but I am pretty sure she has her mind made up about the way some of these taste.  It will probably get better eventually.

We have had a couple of meetings with the nurses and home health care nurses.  They are setting us up with an IV pump for home use to get her steroids in twice a day and she will also be on a lot of fluids at home to keep her kidneys functioning properly until we can make sure she is drinking enough on her own.  This could usually take a couple of weeks.  Dr Diamond was good enough to drop the TPN requirement at home since she has been showing interest in eating at the hospital the last few days so that is one less thing to worry about.  They also gave us a blood pressure machine to take her blood pressure a few times a day.  If it is too high, they want us to give her the bp medicine to get it down a little bit.

Still playing kickball!

Dr Diamond stopped in later this morning and was happy with her oral Cyclosporine levels (it was 205), so she said she was ready to write discharge paperwork!  We spent the next couple of hours packing our stuff up, getting in our meetings with the nurse practitioner and pharmacist, and saying our goodbyes to the fantastic staff at AFCH.  We will be back at clinic Tuesday for her CBC checks and she will need to have her port accessed then since it will have been almost a month since Dr DeSantes talked us into de-accessing her that Friday afternoon after her fevers….The home health nurse will also have to come to our house every Friday to draw blood and have CBCs and differentials checked again.  We stopped at the pharmacy and picked up a couple of weeks worth of goodies and headed home.  Charlotte loved the trip home.  She was so excited to be back in the van and looking at everything outside of her windows the whole way home.

Once we got home she was pretty happy.  She was not as crazy active as some of the previous discharges, but she was still happy to be home.  We had a little

CJ with the cake the AFCH staff gave her!

picnic with some french fries and a hot dog, and she was playing with her toys.  She even caught that elusive poop monster and had him work his magic!  We had a visit from the home health nurse to show us how to work the new pump and give the IV medications properly.  Charlotte will have 14 hours of fluids that will run while she is sleeping.  We carry the IV pump and fluid bag around in a little backpack they gave us and CJ was very good with it.  She has learned to live with tubies!

We are extremely blessed to have her doing so well.  But she still has a long way to go.  Her new immune system will not be functioning like yours or mine until at least 6 months post transplant date.  Sometimes it can take as long as a year or more.  So we need to keep her healthy for as long as we can.  She is still under isolation restrictions.  She cannot have her favorite strawberries or raspberries or blueberries or her not-favorite raw vegetables.  She needs to avoid crowds and busy public places.  She cannot be near someone that is sick.  So while we are happy to be home, we are still getting used to our new normal life to keep her healthy.  As much as we love the awesome staff at AFCH, we don’t feel like going back for a fever/infection visit!

Posted April 8, 2011 by L. Elske in Uncategorized

17 responses to “April 8th, 2011. Day +28.

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  1. Awesome news! So happy to hear that you are home. I’m sure she will thrive in her own home, bed, toys, etc. Every day will be closer to the new life that she will have. Again we thank God for her donor. Love from all of us…..

    Auntie Sharon & Uncle Dean
  2. ~~WELCOME HOME!!~~How very, very exciting for you and how great to be with Molly again. Continued hopes and prayers that its a long, healing stay at home.

  3. Welcome Home!

  4. YEA! Another huge step in this whole process. Keep up the great work Charlotte!!

  5. So happy you guys are able to come home. I hope CJ continues to get healthy 🙂

    Rebecca Oehlert
  6. That is great news! I will continue to say prayers for her continued recovery and strengthening immune system.

  7. So glad you are home!!!!

  8. So happy to have her home! 🙂

    Justin & Holly Christian
  9. 🙂

    Wendy Schulteis
  10. Welcome home good to be back in your home. Now Charlotte can enjoy baby sister again. Things are beginning to fall into place.

    Joe & Sue Kaminski
  11. Yay! SOOO happy to hear you are home! Take care!

  12. Best news possible in a long time!! You are all awesome! Welcome home Charlotte!!

    Steven & Terry Licitar
  13. The best pictures I’ve seen in a long while, was Charlotte buckled into her car seat! Welcome home Elske family!!

    Kim Kirchberg Lafler
  14. Congrats on going home!! Still praying for you all!! xo

  15. Fantastic news!! Glad you’re home at last!!

  16. So happy you are home.

  17. Welcome Home!

    Mary and Bill Kirchberg

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