Actually, for the first time, I have better news to report this morning. Avalon woke up because she needed to go potty. This may not be newsworthy for most people, but for a dehydrated basket case...we celebrate the occasional toilet trips. Better yet, going potty didn't leave her in agony, a good sign that we may finally have a bit of a seal starting to form. OK, so Avalon isn't in agony, but in all honesty, she isn't exactly peppy. She is complaining about her back hurting. Since there is no miserable headache to pair with it, we are going to try just Toridol. After all, the more we can hold off on the morphine, the better for her motility issues (morphine slows movement of food through the GI tract). So, Avalon started the day with Toridol. She's still not eating, but she did ask for more chocolate milk.
I should have known it was too good to be true. :-( Damn it anyway. After having a pretty happy morning, Avalon was taken down to x-ray for an abdominal film to help GI assess her. Since she produced a few "poo rocks" last night, I'm hoping she'll be less full than we anticipated. Anyway, the trip down and up was pretty uneventful. We had some giggles once we were back in the room. Avalon's bed refused to go back 'down'. To transport in a bed, they raise the bed height so it's easier to push. Once you're 'back home' you lower it to the safe height again. Avalon's bed wasn't terribly cooperative. I retrieved my friend from across the hall, and the two of us tried everything we could think of. We turned locks on and off, plugged, unplugged...put brakes on and off...you name it we tried it, no luck. Eventually we called in the troops. Once the nurse got here, we all repeated everything we'd already done. Sure enough, it sputtered and spit a time or two, but we eventually got it down. Since little miss is ordered flat, it's not like we really need the bed to function perfectly. However, if we go on to surgery w/o ever going home, I do believe we need to request a new bed!As for the "Damn", yep, the headache is back. RATS! Avalon had begged for Cheetos, so I went down to the cafeteria and got them and a Dorito chaser. She ate the whole bag of Cheetos, but only crunched through a few Doritos before she gave them up and started to lay quietly. Pretty soon, I saw her rotating on her side, and kind of hiding her face. Joy-Anna was in here chatting, and took one look at Avalon's face and said the same thing I did - she's in trouble. I asked Avalon if she was in pain and she said, "No, I'm fine. My head just hurts" Yet another example, she really doesn't feel pain like normal kids do. I guess it might be more appropriate to say she doesn't report it like others. She feels it, she just thinks it's normal. Long story short, we've decided to go back on the morphine/Toridol rotation. Unfortunately, this means that stupid leak is likely still flowing. Cripes I'm frustrated....UPDATE: Sure enough, 30 minutes after the morphine, Avalon rolled over onto her back from her side and requested some food. If the past few days ring true, she'll eat a few bites then be full. Soon after, she'll likely get a small headache (in spite of the drugs) and get really quiet for a while. I'm a tad bit tired of this. She's bored to the point of being bonkers. Grammo is going to go ahead and come in so I can go home, get clean, pick up clothes and a few other things. Avalon's day nurse, Shannon, and I have come up with a survival plan for the day. Avalon will stay on a constant morphine/Toridol rotation until tonight, and we'll try again. This way, Grammo won't have to worry about assessing pain, she can just sit and keep Avalon company. Hopefully, she can also badger Avalon into drinking more. We'll see.As for surgery plans, the residents did as predicted this morning. Avalon will be NPO (no food) after midnight. They think surgery might be a possibility tomorrow. We all think they're nuts. Who in the Hades does surgery to reduce pressure on a kid who currently has none? Much more likely they'll do a blood patch tomorrow to finally close the stupid leak. Avalon would need to be NPO for that sedation anyway, so we're rolling with it. Truth be told, Avalon won't really care that much. Food is not high on her list at the moment. Now that I have the website up and running on this little laptop, I'll try to go back and fill in what the past few days have really been like. In a word, they've been suckish. For now, I hope some of you find the new blog system to be acceptable. If not, you can always just check the home page like you used to.