Charity's blog

ANNABELLE'S STORY

Annabelle Grace McKinney was born on Tuesday, September 20, 2016. Wednesday in the hospital was wonderful and the pediatricians that checked her out said she was perfect and that they couldn't find anything wrong with her. On Thursday, right before we got discharged from the hospital, she started becoming lethargic and didn't want to wake up to eat. The nurses at the hospital didn't seem too concerned since she cluster fed the night before and they told us her feeding would pick back up later that night. However, once we got home her lethargy got worse, she still wouldn't wake up to eat, her limbs were lifeless and floppy, and she had a very low temperature of 95. After consulting the pediatrician and unsuccessfully trying to give her formula, we took her to the ER at Brenner Children's Hospital early Friday morning where they started running extensive tests.

Goodbye 2017!

Wow, it's really been a while since I've sat down and written a detailed update.  This holiday season has come with so many bumps in the road that I haven't even had a chance to write a blog post.

As most of you know we had to rush back up to Pittsburgh on Thanksgiving for a little over a week when Annabelle had pneumatosis and C. Diff. That trip was more stressful than her transplant due to the fact that we had nothing packed since the trip was unexpectedly two days after we just got home.

When we finally did get back home to NC Annabelle caught a tummy bug a few days later which caused us to spend about four days back in the local  hospital. 

November 15, 2017 - BIG News!

Well as most of you know, all of Annabelle's liver numbers were lower last Friday which was a HUGE praise.  Her EBV also dropped slightly from 43,000 copies in the blood stream to 41,000 copies (it wasn't much of a drop but hey, it's better than going up!).  The transplant team was actually able to lower her prednisone even more to only 0.8ml ONCE a day.  Yay for Annabelle being so close to kick the steriods!  This decrease in steriods should also help lower the EBV and control it better.

If you remember, the team also wanted Annabelle to have an MRI done to check the suspusious bile duct issues that showed up on her biopsy two weeks ago.  Since her gGTP dropped from the 50's to the 30's the team is going to hold off on the MRI unless her gGTP starts to creep back up (they get worried if it starts reaching in the 100's). 

November 9, 2017 - Biopsy Update

Most of you know that Annabelle had to have a liver biopsy done last Wednesday.  All of her liver numbers went up last week and her EBV also jumped from 18,000 copies to 43,000 copies (how much of the virus is in her bloodstream).  Even though her liver numbers didn't go up much, they have trended up the past few weeks and the transplant team didn't like to see that trend.  Since we've been in the rejection/EBV cycle for over a month they wanted Annabelle to have a biopsy to get to the root of the problems.

Thursday, October 26, 2017 - Minor Setbacks

Hello friends,

so much has transpired over this past week, and we've been busy with all of Annabelle's appointments and therapies.  We wanted to wait until all of our appointments were completed this week to give you all a proper update.

Wednesday, October 18, 2017 - Darn EBV

Hi friends!  Mike and I wanted to give a quick update on Annabelle's labs for this week.  Forunately, most of her liver numbers (AST, gGTP, and Bili) all continued to decrease with the exception of the ALT (it jumped from 58 to 64).  The doctors weren't overly concerned so they wanted to keep everything the same.  However, the EBV results came back yesterday and they were at 11,000 when last week was 4,500ish.  So, the EBV virus has reared it's ugly head yet again!  Since the EBV level more than doubled this week the transplant team had no choice but to decrease her prednisone again to calm the virus within her body.  So tonight we've decreased her prednisone from 2.5ml to 1.7ml per dose.  We'll repeat labs again on Monday and hope that her liver numbers don't start to rise (indicating rejection).  This is a very slow and tedious process - a careful balancing act of sorts.  On the bright side the transplant te

Sunday, October 15, 2017

This past week has definitely been more positive than the last.  Annabelle responded well to the increased predisone and her liver numbers went back down. This was huge because this minor rejection episode was able to be treated with medication only without the need for a biopsy or hospital addmission to receive more high-powered steriods.  For this we are so thankful!  We are also thankful that her EBV surprisingly dropped as well (which impressed us because we knew for sure it would increase due to the increase in steriods).  Plus, Annabelle had a very quick and uncomplicated blood draw!  This just shows us that God answers prayers because He answered all three of our specific prayer requests on Monday.  Thank you so much for praying for her!  

Wednesday, October 4, 2017 - MORE Elevated Numbers

Happy Fall Everyone!  We wish we had better news to report but Annabelle's liver numbers all increased slightly this week.  The numbers didn't jump a lot but we are all concerned because they have trended upward the past few weeks.  Monday's bloodwork did show lower EBV (which is good that the lower prednisone last week helped to control the EBV virus within her).  The transplant team is hoping that her elevated liver numbers are just the start of a very mild rejection due to the fact that they weaned her prednisone so quickly over the past few weeks.  So, the course of action for the rest of this week is to boldly increase her prednisone to the level it was when we got discharged 5 weeks ago (we're basically going from 0.8ml twice a day to 3.3ml twice a day which is a big jump).  Hopefully, this boost in steriods will calm the immune system down from attacking her new organ.  We're hoping these steriods will knock it out so the

Thursday, September 28, 2017 - Elevated Numbers

Hi everyone!  I'm sorry for our long-overdue update on Annabelle's post-transplant progress.  Overall, she's still doing really well.  All of her stiches came out on the 18th and that has definitely made it more comfortable for her to be on her tummy again.  Her scare is looking really good and healing great!  It's still large but it will look better when she has to come back in 6 months - year to have her stomach muscles sown back up (essentially a tummy tuck).  She's also gaining more strength by the day, although she doesn't want to work during her physical therapy sessions because she's afraid the therapist is going to hurt her (we'll be happy when she gets therapy in our comfortable home setting again with people she knows and trusts).   Her energy level and alertness have also improved and she's really starting to act like a toddler getting into everything she can get her hands on.

Saturday, September 16, 2017 - Less Doctor Appointments!

This past week has been our most relaxing thus far and we've had much more time to spend together as a family.  Annabelle had bloodwork first thing Monday morning and had transplant clinic immediately afterwards.  The transplant team continues to be impressed with her progress and have now cut us back to bloodwork and clinic only once a week instead of twice a week!  Yay for less blooddraws!  The only bad news is that her bloodwork on Monday did show slightly elevated liver numbers (ALT jumped from 35 to 49 and AST jumped from 14 to 26).  Both numbers are still in the normal range but they had been trending downward.  However, last weekend we had decreased her Prograf (main anti-rejection drug) and decreased her predisone.  So the team decided to increase her Prograf level again (because her Prograf level was really low at a 6 when they want her between 10-12).  They had also hoped to decrease her predisone level but with the higher liver






 
 
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