I returned from Australia, went to work for a week, then started dealing with Daniel's hip dislocation. He had long been scheduled for surgery on November 17th. That would not have been too bad, except that on November 16th, Paul suffered a detached retina! Here I am, trying to get organized to spend several days at Children's National Medical Center, and Paul adds his own crisis to the mix. We were lucky that my sister was available to take Paul to his surgical appointment, since I was sort of tied up.
Paul's story
His saga had started in September, when he was on a driving trip with Sarah to visit some archaeology sites along the Mississippi River, go to Mammoth Cave, visit some friends in Mississippi, and, finally, attend a Maya conference in Florida. Along the way, he had some bleeding in his eye, visited an opthamologist and a retinologist in Mississippi who said he should be OK, then had to cut his trip short when the bleeding recurred and it was not clear what the next step would be. It was very disappointing to both Paul and Sarah to have to leave the conference early.
When he got home, he found that nothing could be done until the blood cleared, but that was not happening, and he eventually had in-and-out surgery to get rid of the blood so the retinologist could see what was going on. That led to nothing, as the doctor said all looked OK. Then a couple of weeks later, the detachment.
Since then he has been recovering from the reattachment surgery--slowly. And faces more surgery in a couple of months to remove the oil that is holding the repaired retina in place. Many different kinds of drops, several times a day, an abraded cornea, lots of discomfort....
Daniel's story
Daniel's initial surgery seemed to go well. He spent three nights in the hospital, had some pain but not a tremendous amount, and was basically OK with it all.
He left the hospital with casts on both legs and a bar in between....his legs were so widely spaced that he could not easily get through doors in our house. He spent most of his time in bed, as it was very difficult to get him positioned in his wheelchair and move him around.
After two weeks, his incision started oozing blood. We visited the surgeon, who recommended going back to the hospital so he could take a look at the situation. We concurred, and that night, Daniel was readmitted to CNMC.
This time, the surgery was less extensive, but we were there five nights instead of three, even so. We had to wait for results of the tests for infection. After three days, unfortunately the results were not good. The infection was not one of the quick-growing bacteria, but one that only shows up after several days, and they did not think it was a contaminant in the sample. So Daniel was started on a different antibiotic and scheduled for a PICC line (peripherally inserted central catheter) so he could get IV antibiotics for several weeks at home.
We finally came home and have been administering his antibiotic three times a day (the plan is to go for six weeks, followed by oral antibiotics until his initial surgery is sufficiently healed that plate holding his bone together can be removed).
Daniel was seriously bored in the hospital, although I had taken most of his toys, videos, CDs, etc. He kept stating in no uncertain terms that he wanted to go home. I agreed with him, but we had no choice, unfortunately.
The only good thing is that CNMC is set up well for parents and kids. The rooms are all private, the food is not bad (they bring a cart to the floor, and you choose what your child wants), and the food in the cafeteria is pretty good (the apple dumplings were epic). I learned a few things on the first stay that really helped for the second, such as taking a sleeping bag, which solved the problem of sheets and blankets sliding off the very slippery sleeping couch.
Now we just have various doctor visits (both Daniel and Paul), and the followup surgeries to look forward to.
