When we left you in this continuing saga, Janey was off getting a CT scan to look for abscesses. The CT scan was quick, and Tony went out to get a bite to eat when one of the surgeons came back to tell me that yes, it looked like Janey has multiple abscesses. That wasn't exactly what we wanted to hear, but I am so glad they did look for them. Her head surgeon came in a bit later and explained things to us more. Janey had 5 abscesses. She was going to need interventional radiology to put drains in them. At the same time this was done, they would put in a PICC line to be able to give her nutrition, IV medication and draw blood, without having to do lots more IVs.
Janey was taken down for the procedure about 2, strangely, a week right to the hour after she had the original surgery. We signed more consents, and left as she was being put under, back up to her room to sleep (although I couldn't sleep).
The big question last night was whether I would go to her brother Freddy's Prize Night. The night is the second biggest night in the six years at Boston Latin School, the school Freddy graduates from on Monday. I have looked forward to the night for years, but never dreamt I would have to decide whether to go while Janey was in surgery. After talking to the surgeon and to the nurses, I did decide to go. Tony stayed here and promised to keep in touch with me by text, which he did.
The night was wonderful. It was held at an old church building on the campus of Harvard, a beautiful venue. There was amazing music played by the string orchestra of the school, including a sad piece which of course set me to crying quite a bit, partly about Janey and partly from thinking of an era being over with Freddy. My emotions right there were about as intense as emotions get. Watching the prizes get given out was so interesting. Everyone got a prize of some kind, and I was very proud that Freddy got two, both connected to his declamation (speech giving) skills.
Then it was back to reality. Janey had come back from surgery while I was gone. I saw her drains, which are a little scary to look at but not that bad. They were able to drain 4 of the abscesses with 3 different drains. One was too surrounded by bowel to be able to drain. Hopefully that one will resolve on its own. Janey was doing remarkably well.
Today, Janey isn't feeling quite as good. Her fever is up a bit, which was sort of half expected, and she was in a bit of pain. They authorized clear liquids, but she had just a sip of apple juice and later threw up. Her stomach just isn't ready yet.
I have to say here how wonderful almost everyone at this hospital is. The nurses on our floor are just plain amazing. They are so kind, they care so obviously for Janey, they are knowledgable and competent and just...wow. The surgeons have also been great, especially the surgeon who did the original surgery on Janey. She listened to us, answered all our questions so well, and even remembered Freddy and answered me seriously and truthfully about going to his prize night.
And---Janey has been amazing also. Overall, I can say there's been many times she's gotten far more upset over us saying no to a trip to the ice cream store than she has over major things here like having an IV put in. She is alert and watches everything, and is learning new terms. Today, she said "Want to call the nurse?" as I picked up the control with the nurse button, and she has started calling her stomach area her "belly" as she has heard them do.
Sleep is the toughest thing. We got some last night, but I am living in a constant state of tiredness. Often, also in hungriness, as I don't eat the room since Janey can't, and it can be hard to find time to sneak out and get something to eat. This may be the most effective diet I've ever been on.
Writing in this blog and hearing from all of you truly is keeping me going. I need this writing more than anything. I don't think I'd ever remember these days clearly or be able to work through them in my head without it, and it's a fantastic bonus to be able to share Janey's story. I hope none of you ever have to have your child with autism in the hospital for an extended time (or any child at all!) but I hope if anyone does, my writing will help a little. So I will close for now, until part seven......