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Dodged THAT Bullet (For Now) Posted February 25, 2013 by Jackie Dooley


Ana’s liver enzymes are still high, but because the fluid in her abdomen seems to be going down (or, at least, stabilizing), Dr. Martinez said she did not have to get the biopsy tomorrow, but she would get labs drawn on Wednesday and may need it done then. I had about two hours of anxiety from 11:00 a.m. until about 1:00 p.m. today when on of the physician’s assistants called and said that Ana may need to be admitted to the E.R. tonight so she could get the biopsy tomorrow. She’d called me to ask about the fluid in Ana’s abdomen and ask how she was feeling – and then she said she would report this info back to Dr. Martinez and get back to me.

I asked if we could avoid the E.R. completely and just have Ana admitted since the E.R. is a germ-riddled nightmare that I’m not eager to send my immune compromised child into the midst of. But E.R. patients get priority when it comes to getting rooms on the floor – apparently doctors can’t book rooms or then kids get stuck in the E.R. for two days (because there’s a backlog of “reserved” rooms – I guess). This may be the best way to ensure that the most critical patients are seen and triaged via the E.R. first – I don’t know, but I kind of feel like a child with a liver transplant who may be in liver failure should be considered critical, and get to go straight to the floor if they feel the liver needs to be biopsied. I mean, right? The PA acknowledged that it wasn’t a great system.

Ya think? How difficult would it be to add one line to hospital protocol for critical patients – “If you’ve gotten a new organ within the last 30 days, you get to pass right by the E.R. and go straight up to your room AND collect $200 because you’ll be generating at 20x that much money for the hospital during your stay).

So, I refrained from posting a “Possible E.R. Visit” update to the blog today – having learned from past mistakes – and waited to hear back from either the PA or Dr. Martinez. The PA called and said that since Ana was feeling well, had lost 2.8 lbs since Friday and did not seem to be retaining more fluid (although some fluid is definitely still in there), she could wait until Wednesday. Jim will take her again as he did last week and she’ll get labs drawn, then they will wait around for the results (it takes about 2 hours) and if her enzymes are still high, she will need to get the biopsy.

So, here’s the thing. It’s normal for new liver recipients to get biopsied after transplant and this can happen more than once. The PA explained that Ana’s liver enzymes could be elevated because of rejection, or because of one of hundreds of viruses and the treatment for these things is completely different (e.g., more immunosuppresant drugs for the former and less for the latter). The only way to know for sure, is to biopsy the liver. Even if she is in mild rejection, this is also normal and “easily treated.” That is a direct quote. In fact, the PA said that children who experience some level of mild rejection within the first six months after transplant seem to have a better outcome over the long term. Mild rejection actually means Ana’s immune system is strong, so that is a good thing. Does that mean we need to hope for mild rejection?

Holy crap, what kind of a mind f*** is THAT?


So even after I had a better understanding of what to expect over the next six months including that Ana’s got at least one more biopsy, if not more, in her future, I can’t twist my brain to the point of feeling happy about that. It all feels like a slow, painful climb from the bottom of something fathomless. And this still all just feels so incredibly unbelievable – like stepping outside one fine summer day and getting struck by lightening, even though there’s not a cloud in the sky. Where did it come from? Why did it hit us? How will we be changed?


  • Susan Wishart February 26, 2013 at 12:12 pm

    Strength is key and Ana seems to have it. Im glad things are going in the right direction. Hugs to your family


  • Larry February 26, 2013 at 8:36 am

    The one thing that has remained consistent during this insane roller coaster is Ana’s strength. That is where I am putting my faith and my energy. What a fighter!


  • Judy Krongard February 26, 2013 at 7:48 am

    I remember reading Alice going through the looking glass many years ago..up was down, down was up…that’s what this feels like. It’s BAD that Ana might be rejecting her new liver, but it’s really GOOD because it means her immune system is strong…Uh, ok…I’ve never taken LSD, but I would imagine that this is what it feels like..Alice in Wonderland… I wish you didn’t have to go through this..I love you ..


  • Mary Chase February 26, 2013 at 12:06 am

    When I first started following your blog, all I could imagine was this Escher staircase print, a copy of which is still in our son’s room. Your picture post certainly reflects your perspective and feelings! Hoping for smooth walkways for every step, every day!


  • Kiku Collins February 25, 2013 at 10:32 pm

    Sending as much love as I can! I hate that she needs biopsies – but she’s sadly experienced in so much of this at such a young age. I wish there was something I could do for you guys… xoxo


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