What a week. 

Justice got sick first. The D and V had hit him pretty hard by Tuesday and Jodi did her best to keep the boys isolated from each other while takingcare of him. On Wednesday morning she met my sister halfway to my parents’ house and gave JT to her to in an effort to protect him from Justy’s illness. I signed up for a personal day, picked up JT in Ohio on Wednesday after school, and the two of us headed for Cincinnati.

So while Jodi took care of Justy in GC, JT and I logged a hospital day together. Access the port, three infusions. A nurse from GI came to look at how the site around the G-tube was healing. She gave us new instructions for cleaning and dressing – it takes a whole lot longer and the first two times we did it I had to hold JT down screaming and crying, not fun. Thankfully, tonight was much better. 

At the hospital, his liver numbers were way off. One number in particular has a normal range of between 10 and 30…his was over 1000. Dr. Filipovich immediately ordered an ultrasound of the liver so our stay was lengthened to accommodate the procedure. The immediate feedback was simply that his liver is enlarged. However, his liver has always been “enlarged.” The radiologist made two other notes that our nurse practitioner didn’t understand and we have yet to discover what they mean. I think we may be meeting with a liver doctor during this week’s visit. Obviously, a real prayer concern.

And the doctors said that I couldn’t take JT back to be with Justice. So I took my second unplanned personal day of the week. By extraordinary coincidence, my parents were staying in Columbus Thursday night as my mom had a conference at OSU Friday. I called them from the road at around 9:30 p.m. (it had been a long day in Cincinnati) and asked if they had an extra bed in the room…so JT and I woke up Friday morning in Columbus.

With a totally unexpected day to hang out with each other, we decided to head to Hocking Hills State Park. We did the whole Old Man’s Cave loop hike and my little four-year-old was as intrepid as any teenager. We were climbing over stone bridges, forging through rock tunnels, sliding down iced-over staircases – JT was tireless. It was awesome, one of the very best hikes of my life.

JT and I spent Friday night and Saturday night at my parents’ house in Ohio to give Justy a chance to get better. .Jodi took him to the doctor’s on Saturday morning and he checked out okay and started to turn the corner by that same afternoon. Unfortunately, JT started throwing up and having the D back in Ohio with me.

We came home today around noon. We’re pushing Pedialite through his G-tube, no feeds since yesterday they only made him vomit. He’s in good spirits but the D is violent. After no episodes this evening, we’re hoping for the best. He’s on a host of prophylaxis medications and Jodi also gave him his sub-cutaneous IG infusion this evening so we hope that tomorrow proves very encouraging. 

We’re headed back to Cincinnati on Wednesday for Thursday’s appointment though it’s hard for me to believe as I sit here typing. His skin is about the same, Jodi thinks it may be a bit worse. The light therapy machine should be available in April so JT may be spending the better part of several weeks in Cincinnati next month.

There’s lots to pray for: for his skin, for the GVHD, for his liver, and especially for healing from the illness that is causing the D and V. We really, really hope that this passes.

My family is all asleep now, all tired and in various stages of healing. It’s good to be together again even as we head into another week of this long journey. Thank you for being in this whole thing with us. Good night.