We had been doing so well. James had the occasional blip, but he had not been hospitalized since January. (We had several trips to the ER to replace his feeding tube; they tear and the plug breaks off.) We even got brave enough to take him to Texas for Thanksgiving. We did not take his feeding pump, thinking he had been eating well and was unlikely to need it. I guess it was a mistake; he got constipated and threw up for six days. When we got home, we took him to the ER, where they changed his anti-nausea meds and gave him two liters of fluid. So far, so good.
A week ago on Saturday, James started having continuous seizures - 25 minutes. We called 911 and were taken to the local ER. The paramedics pumped him with everything they had, and he was still seizing. At the ER, they threw the kitchen sink at him and finally got the seizures to stop. They did a culture to see if he had an infection (a little foreshadowing for your entertainment.)
Well, so they admitted him in Walnut Creek, once he was transferred up there. The doctors there made some more adjustments to his meds, and he hadn't had any seizures through Wednesday, so he came home. He actually went to his day program on Thursday and Friday, and felt great. He called me a couple of times and I could his happy voice (higher than his not-so-happy voice, and sounds like he is about to start giggling). Labs discovered some bacteria in one test, but a retest showed nothing. They assumed the bacteria from the first time was from the IV needle insertion.
Yesterday (Saturday, 12/13), he started having seizures again. This time, Mary drove him up to Walnut Creek herself. They got the seizures stopped easily (danke schoen, mein Gott!). The local ER had completed its culture, however, and the bacteria was definitely something. James is now on antibiotics. He was admitted to Kaiser Walnut Creek last night. Mary is there with him, and some friends may spell her tonight so she can come to the Christmas program where I am playing bass. We'll see what happens; Mary is generally there unless she cannot be, and this week she has another musical and attendant rehearsals, so I may have to spell her.
Please pray for us all. Mary has been and remains exhausted, and I am never a peak performer anymore. I take a real mental dive when James is in the hospital, and the role of "very sick child's dad" is just too heavy for me right now. Pray that this will get handled and James can settle back into his routine. I keep wondering if this is the beginning of the end, like we thought the last time was.
Here's a picture of a happy group in June. Thanks for your concern and prayers. B
