I was a little nervous driving back to the children's hospital today after the flat-tire incident last Friday, but once we'd passed the infamous corner where I'd waited three hours for a tire change I relaxed, the morning sun lit the gray October sky, and I almost enjoyed the drive. It was an early morning today trying to get all four kids out the door in the black night of 6:00am. The younger three enjoyed the day with Matt's sister and her kids, Naomi and I had plenty of time together again, and I wasn't plagued by too many contractions as I drove.
The whole day went completely on schedule, in fact, and our appointment, which was certainly necessary, didn't bear any surprising new revelations or begin any new crises. Naomi's GI doctor said that Naomi's spleen had enlarged another couple of centimeters, and while her low white cell counts and enlarging spleen are certainly signs that the liver fibrosis is progressing and causing the pressure in the portal vein to rise, that is exactly what we knew would happen, and it is happening very slowly. She (the doctor) did not seem at all worried at these new signs--they are simply a few more steps along a road we already knew we were traveling. She still felt that major complications such as severe immune deficiency and sudden GI bleeding were probably years away.
The doctor also clarified that Naomi's white cell counts might not actually rise out of the "normal" range when she is fighting infection, something I wish the ER doctors had known when they kept insisting that Naomi's white cell counts were "normal" and I kept saying "but they're high for her." It is possible that, with Naomi's condition, boosting the white cell counts into the "normal" range from "below normal" is all Naomi's body could muster to fight infection. However, while this might confuse the ER doctors, the GI doctor did not feel that Naomi was severely immuno-compromised yet or that she was in danger of not being able to effectively fight infection.
So, while Naomi may one day face severe immune deficiency and life-threatening GI bleeding, that day is still a good distance down the road. For today there is no quarantining Naomi from germs, life-flighting her to the children's hospital, or planning major surgeries. Today the doctor ordered some blood work to re-check on the status of the celiac disease, the liver function, a blood count, and some vitamin levels that have been running low. She decided she would like to see Naomi every six months now, instead of every year, and she gave us some information on being involved in a new multi-national study on infant siblings of children with celiac disease that is designed to settle the debate about whether early introduction of gluten to babies with the genes predisposing them to celiac increases the risk of the child developing celiac disease later in life.
Today we drove home under the gray October skies and dragged three reluctant siblings from a house that was clearly more fun than our own. Today the three girls are setting up a pretend veterinary clinic and doctoring up a line of illness-and-injury-stricken stuffed animals while I cook dinner. And I'm thankful for today.