Moving Forward: Shayna's Liver is Healing

Shayna, and us, have been dealing with some rejection like "activity" in her liver since March of 2015. While her liver enzymes have been within normal range since the initial burst of steroid usage that spring, there was no change in her liver tissue the following spring and again no change six weeks after that following a second high steroid dosing. (Steroids suppress the immune system, among other things.) The third immune suppressant (Cellcept) that had been added in April, 2015, after the prednisone (steroid) did not fully correct the highly elevated liver enzymes was changed to the slower affecting, atypical Rapamune (sirolimus). Since Shayna's liver enzymes had remained stable and normal since April, 2015, only a liver biopsy would be able to show if the Rapamune was effective and at least three months was required before the biopsy to allow the Rapamune time to work. That was beginning of June with six weeks until we left for our year in Haifa, Israel.

"No problem," we thought, "Israel has great Western medicine and a socialized system so it shouldn't cost that much. Plus, they have a great Children's Hospital with a transplant team so will understand how to help us with Shayna's care." We were in for quite the sticker shock after Shayna's first routine lab work and 20 minute doctor's visit at Schneider Children's Hospital in Petah Tiqwa when we had to pay over $1,000 thanks to "medical tourist" rates. (I'm still trying to get some money refunded from our US insurance company. The paper work is proving tricky but I haven't given up.)

After battling with Immigration Services, an initial citizenship rejection, and Nahum spending the better part of a month compiling a book to show that we were in a relationship before Shayna's conception (an apostilled marriage, or any other, certificate doesn't count here anymore), the kids were all granted citizenship in December. This meant no more Medical Tourist rates PLUS the kids were approved for the national insurance program, pre-existing conditions (transplant kids are expensive) and all. We were finally able to schedule Shayna's biopsy for end of December.

Shayna has suffered the most illness wise since we arrived with at least 4 vomit-inducing GI bugs and a handful of other cold and flu-like viruses. Unfortunately, two of these hit within a 7-day period at the end of December postponing the biopsy until January 2, 2017, and landing Shayna in the local hospital for IV fluids after kidney distress, caught by routine labs. Her kidneys are still recovering as we continue to push water.

Last week, I got the official report from Children's Hospital of Pittsburgh (CHP) transplant department that the biopsy showed healing. This means Shayna is no longer in rejection. They want further testing in an MRCP as they believe the rejection stems from the bile duct system and not the liver tissue itself. (Magnetic resonance cholangiopancreatography or MRCP uses a powerful magnetic field, radio waves and a computer to evaluate the liver, gallbladder, bile ducts, pancreas and pancreatic duct for disease.) (I am not a medical expert so this is just my best understanding of the situation; doctors, please don't judge.)

The move has also taken the greatest psychological toll on Shayna. The first three months of school were miserable, Nahum spending the better part of a month in the hospital and me solo-parenting for a good six weeks, didn't help. She still suffers from intense stomach pain nearly daily. We believe this is a hold over from the stress, which manifested physically as headaches and stomach pain, from the fall; however, we are having her medically evaluated. This means I get to collect her poop in tubes three times over this week. (The joys of motherhood.) Plus, the doctor suggested no dairy for a week.

Nahum has fully recovered physically. Mentally he is still trying to play catch-up and push through the stress the move and illness has had on him. He enjoys going to the office these days, having several colleagues with which to talk astrophysics and explore restaurants at lunch, and exercise walks several times a week.

I am coming out of the haze as my Ulpan (intensive Hebrew school) ended two weeks ago with the official government exam on January 31. I learned a lot, can read and understand simple Hebrew fairly well, and help Shayna with word problems in math but still want to hide in a corner and cry whenever I attempt to create my own statements in the language. I was also completely burned out by the end of the first week in January so felt like I was going through the motions of learning and not actually able to absorb much after that point. The Ulpan was kind of like a job simulation to me and, because of the way it ended, I feel like we failed as a family to support me working outside the home. I definitely learned from the experience and we have some work to do as a family because I want to re-start my career next fall. The initial easy thought is that 90% of my income will go to childcare/house help. I'm thinking after school nanny/kitchen-and-laundry assistant plus 8am-3pm Montessori for Maya. The harder part is creating new communication habits with my husband where I effectively ask for what I need before I catapult over the cliff edge. Both will be very difficult and require me to be much more self aware. The hardest part will be having patience to see if Nahum decides to create new, productive habits too.

With everyone's returning health, we have started hiking in the beautiful Carmel National Park that boarders Haifa to the south and other trails that loop around and through our area of the city. We've met some amazing people here that continue to want to hang out with us and encourage us in our outdoorsy aspirations. The following pictures are from our Nahal Alon and Nahal Oren hike on Saturday February 4. We're planning on hiking this weekend to see how much the hills have changed. It's spring here so the flowers are starting to bloom and soon the hills will be covered in red poppy like flowers. With everything we have experienced, I still love it here. The hikes have views everywhere, the sea is 15 minutes away, and there are so many construction sites to watch.