February 3rd, 2011   7 comments

Wow…..what an emotional few days!

If you know Amy, she likes to be prepared.  It has been killing her that we had yet to receive all of the details/dates of Charlotte’s pre-transplant evaluations.  When we were discharged from the hospital, we were told to await a phone call with all of the details.  Not only did that call not come, but we began to receive some information about appts in the mail and Amy received a phone call from the home health agency that will be helping us with Charlotte’s PICC line care while at home.  During that conversation, Amy had to correct the nurse about our upcoming admission date.  That was enough for us…..we decided we couldn’t wait anymore and decided to contact our NP at the hospital for answers.

So…Amy received a call from the NP yesterday afternoon.  She too did not have all of the answers (as this is not her role to schedule the appts), but she did see in the system appts scheduled for Monday the 7th (which we knew nothing about), the 9th (that we were aware of), and even more appts for the 10th (only half of which we knew about).  She also saw notes indicating that Charlotte’s transplant date was changed, but she couldn’t confirm if this was correct.  She promised Amy that she would have the person in charge of these appts connect with us tomorrow (being today).  Well…..I was still pissed off!  I promptly called our social worker at the hospital to voice my complaints.  We realize that this information is just day to day business for the hospital, but this is our daughter we’re talking about it and all of this is very scary!!!

Needless to say, the staff felt incredibly bad for what happened.  No one knows what happened as to why we weren’t contacted earlier.  We received calls today from the appts scheduler, our social worker, Dr. Diamond, and Dr. DeSantes (transplant doctor) himself with personal apologies.  So….here is what we now know.

**  Charlotte’s transplant date has changed because the original dates did not work for the donor.  We will now be admitted on March 1st and transplant will take place on March 11th.  Although Dr. DeSantes states waiting another week is not ideal, he remains hopeful that Charlotte will remain in remission and the extra week at home will only make her stronger to face the transplant.  Dr. Diamond is very optimistic that Charlotte’s bone marrow biopsy will show great results and that she will still be in remission.

** Feb 7th – Charlotte has a GFR test (to test kidney function).  We must arrive at 8am for her to get her poke, get an injection, and then have blood draws at 11am and 1pm to test how her kidneys are processing the injection.  She can’t eat until after the 11am blood draw.

**Feb 9th – Arrive at noon to be sedated for her bone marrow biopsy (1:30pm) and PICC line (2pm).  She can’t eat until after she wakes up.

**Feb 10th – Arrive at 7:30am to be sedated for multiple CT scans (8:30am).  She again can’t eat until she wakes up.  Then she gets her IV monthly medication at 9:30am, followed by an echocardiogram at 11am, and a hearing test at 1pm.

**Feb 15th – meeting with a transplant nurse (2:30pm).  Then the consent meeting with Dr. DeSantes and Dr. Diamond (3:30pm).

**She will also need a dental exam.  It is standard procedure for all transplant patients.  They are just looking for tooth abscesses that could produce deadly infections while her counts are so low.  UW is trying to fit that in during one of the days she will already be sedated.

As you can tell, it will be a very busy week for us.  We hope that Charlotte can handle all of these tests okay especially being sedated back to back and not being able to eat for those 3 days first thing in the morning.  Charlotte continues to do very well here at home- very active and often asking for snacks to eat all day long.  She continues to bring us strength when we become nervous.  We wish we could just get back in the hospital and get this damn thing done.  This news may change the dates she is admitted, but Amy and I have to remain confident that it will not change her outcome.  She will have another week of healing before the transplant, and both of the doctors reminded us of how great she is doing.  They told us that they have had to postpone transplants before because the patients are so weak and doing so poorly that their bodies are not ready for the intensive process.  So again, CJ is doing as well as they could expect so we have to believe that she will be ok.

Posted February 3, 2011 by L. Elske in Uncategorized

7 responses to “February 3rd, 2011

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  1. Bless your hearts sweet family. I am praying and will continue too.
    Deb

  2. That sounds crazy and SO frustrating. I’m sure all the timing is happening for a good reason, but I wish they could make it easier on you guys by keeping you informed at least. I’ll just keep praying!

  3. Been reading your posts everyday and just wanted to tell you how much we think of you. Your an inspiration for our whole family and we’re all so very proud of you guys.

    Best,
    CF

  4. Seems like a lot of trips to the hospital for you in the next few weeks. Just curious as to how long your commute is.

    Praying for Charlotte every day. Her name is almost rubbed off of these pink bracelets! 🙂

  5. It all happens for a reason. the good news is that she has a donor! Charlotte is strong and vibrant. She has been amazing through this, I’ll pray that she keeps it up!!

  6. You two are the strongest people I know. Charlotte is a lucky little girl to have a Mom and Dad like she has. God will surely watch over all of you during this trying time. Keep the faith! Much love from Watertown….

    Auntie Sharon & Uncle Dean
  7. Hi Elske Family –
    The best thing to do is keep the faith. You have already come a long way and the Lord is watching out for you all. CJ is a strong, determined little girl. From all of the posts I have read, she appears to bring strength and life into her mom and dad, and other family members. She is doing tremendously well, considering all she has been through. Good days are right around the corner. You all continue to be in my thoughts and prayers. Hugs!

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