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.

So, we went to in her biopsy last Wednesday.  Even though it's considered a simple procedure things are always more complicated with Annabelle's disorder.  Since she cannot go without eating for so long we had to make up a special clear liquid formula to give her eight hours before the procedure.  Then we had to take her in at 6:30am to get an IV started of D-10 fluids so she remained stable even though her actual biopsy wasn't scheduled until 10am.  They took her back a little after 10am and we were able to go see her in recovery a little after 12pm.  Unforunately, they have to check some blood levels four hours after the procedure so we had a lot of sitting around waiting to get that bloodwork done.  We finally got to leave the hospital around 4:30pm, making it a very long 10-hour day.

We were hoping to get results one or two days later, but our transplant coordinator e-mailed us late Friday afternoon stating that they still hadn't gotten results back.  This was actually a good sign because they do a quick scan after the biopsy, and the worst looking biopsy slides get priority.  So the fact that her results got pushed back told us that nothing was super alarming that needed immediate attention.

So the transplant team along with pathologists met yesterday to discuss Annabelle's biospy slides.  The biopsy slides showed no active rejection which is great news!  There were changes from the last biopsy she had in August but these "new" rejection cells were likely from the small blip of rejection she had about a month ago that was treated with the big jump in steriods.  The other good news is that the biopsy showed that there was no EBV in her liver tissue (meaning it's still contained only in her bloodstream). 

So what is causing her elevated liver numbers?  Well, the coordinator e-mailed us yesterday to let us know that the biopsy was suspecious for bile duct issues.  The strange thing is that usually bile duct issues are detected on a liver ultrasound and her ultrasound last week looked great.  Also, her gGTP blood level has been relatively stable (usually if this number creeps up that's a good indication of bile duct issues as well).  So, as a precaution the transplant team wants Annabelle to have an MRI to see if there is any dilation or stricture that may need fixing. We're not sure when we'll have the MRI done but it should be within the next week.  Since Annabelle's bloodwork hasn't been done in over a week we're also going to take her tomorrow to have her liver, prograf, and EBV levels checked.

In feeding news, Annabelle's eating has gotten much much worse. She turns her head at most food we try to give her and is barely even eating puffs.  We're still meeting with OT twice a week and have now starting meeting with a behavorial feeding therapist once a week.  I know it doesn't help that 3-4 teeth are about to come through on top, along with the two on the bottom that have already broken through.  I'm sure her mouth is so sore with that many teeth coming in at once.  Feeding is obviously going to be our big struggle moving forward and it's frustrating.

So that's where things stand for right now.  Still no clear answers, and no idea when we'll get to go to the zoo.  I think we're all ready to get home by now, especially since the weather has gotten so much colder.  Now that it's cold/flu season we're much more hesitant to take Annabelle out much so we mainly just stay in the small apartment.  We're all a little stir crazy! 

Hoping for clear answers in the week ahead...

Prayer Requests:

1.) Continued prayer for the donor's family.

2.) Continued prayer for no infections, no clotting, and no future episodes of rejection.

3.) Continued prayer that Annabelle's liver numbers and EBV would trend down.

4.) Continued prayer that Annabelle would have an increased appetite, and that the feeding therapy would help her eat more food by mouth.

5.) Continued prayer for Annabelle to continue to gain strength and make huge strides in her physical development. 

6.) Continued prayer for quick blood draws, and that Annabelle would get more and more comfortable with each one that passes.

7.) Continued prayer that Annabelle's heart thickening is only the result of the steriods and not due to the start of Cardiomyopathy as a side effect of her disorder.

8.) Pray that Annabelle's MRI would go smoothly and that her body would not have any bile duct issues.

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