February 7th, 2011   6 comments

Things have been so awesome at home that I forget to blog about any of it for a week.  My bad.

Today we took Charlotte to the hospital for her first of several pre-transplant evaluations.  She was receiving a GFR test that determines the functionality of her kidneys.  We had to arrive at 8am for them to access her port and give her an hours worth of IV fluids and drew some blood for the standard CBC tests (all of her numbers are looking good) and several more vials for transplant related testing.  Then we walked to the UW hospital were she was injected with some sort of radioactive dye.  Really.  It was brought into the room in a thick lead carrying case and there was a heavy metal shroud surrounding the plastic syringe it was contained in.  Had the scary stickers and everything.  She was to be given this stuff then have her blood drawn after intervals of one and three hours to see how well her kidneys were working.  They injected that into her and then we walked around and played in the play rooms for an hour.  We returned and they drew a few vials of her blood.  She was then allowed to have a light snack so she munched on Cheerios for a little while then we headed up to the 4th floor to see her nurse friends.  She was jumping and very happy to see Natasha, Jill, Katie and her other awesome nurses.  We chatted with them for half an hour while she played in the 4th floor playroom and had a great time.

Two hours after her first blood draw we went back for another.  It went smoothly and then we were allowed to go back to the day clinic and then head home.  During our walk back Amy received a call from the UW dentist scheduler checking to see if CJ could come in tomorrow for her dental check.  Amy finally was able to convince them that we had thought we might be able to get this done Wed or Thurs this week while she was sedated.  They said that we could have our doctor page the dentist and he would come right over and take a look.  So hopefully that will go well too.

Today really couldn’t have gone any better.  Charlotte was excellent whenever we needed her to come into any scary exam room and she was helpful in getting syringes and vials attached to her tubie.  We left her port accessed (the needle is still in it) today and tomorrow so she won’t have to have another poke on Wed when she comes in for more testing.

Charlotte took a great nap after we got home and ate very well tonight.  She had a good bath and was in a great mood all night long.  We also got the news that her GFR test results were normal.  One down, many more to go!

Wednesday we don’t go in until noon so she won’t be able to have anything to eat or drink from the moment she wakes up in the morning until probably late in the afternoon.  She will have her bone marrow biopsy, and her PICC line placed in her upper arm for all of the transplant IV needs.  This will hopefully mean she won’t have any more pokes for another month.  It will be more work for Amy and I to keep clean,dry, flushed, and free from infection every day until we return to the hospital (then it becomes the nurses problem).  It will also be harder for Charlotte to have a regular enjoyable bath for the next two or more months, but it is a small price to pay for her continued good health.  Amy and I are nervous for her bone marrow biopsy (and every test yet) but feel glad that we will know the results in only a couple more days.  We need this biopsy to show that she is still in remission.

Thursday we come back first thing in the morning to get CJ sedated again for a thorough CT scan.  She will then have an IV of her monthly antibiotic and an Echocardiogram and Audiogram (hearing test).  We hope to be back home by mid afternoon if things go well.

Please keep your prayers coming for good test results…the better the test results, the better chance she has of making it through transplant without doing more organ damage.

Posted February 7, 2011 by L. Elske in Uncategorized

6 responses to “February 7th, 2011

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  1. What a trooper! Keep up the good work. Hugs and Prayers!

  2. So happy to read that things went well today! Keep it up you guys! Love ya.

  3. Whew, one test day down! How wonderful to hear that it was a good day. I’m sure Charlotte loved having mommy & daddy all to herself too! Great to see the 2 thumbs up pic! You go girl! We’re so proud of you!

  4. Charlotte you are such a remarkable child with such remarkable and loving parents! All of you are doing such a fantastic job. Such good news to hear how well yesterday and her tests went. Many prayers for more good test results are heading your way. Aunt Jenny is right … everyone is so very proud of you, Charlotte. You might be little, but you’re Tough!! Lots of love to all of you!
    Aunt Cyndee and Uncle Earl

  5. What an eventful but positive day for the Elskes! Charlotte’s two thumbs up describe this point in time perfectly. From here on out, let’s hope for two thumbs up for doctor reports, test results and all things BMT related! Love & hugs little Charlotte –

  6. Looking good little girl now things will get better. Prayers are coming fast.

    Joe & Sue Kaminski

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