So, here's the update from the weekend:
Harley started throwing up on Thursday night. Not just a little, but almost continuously, it seemed. Every time we'd clean her up and change her sheets it seemed like we'd turn around and she'd be throwing up again. We'd stop the feeds through her G-tube after she threw up, anywhere from 15 min to an hour to give her stomach a rest. As soon as we'd start it up, it seems, she'd start throwing up again. Poor baby. It went on all night, too. As soon as morning came she stopped, though, which was good because she had to get a test done on her eyes.
She's still cute, even if she has an eye patch on. She did really well with the test. We put her in a wagon and brought her to some room on the 8th floor where they put more probes on her head and 2 on her face. Then they put an eye patch on one eye and flashed a strobe light in her face (I thought people who are prone to having seizures can have one triggered by strobing lights...) at different speeds. The fastest one made me think I was going to have a seizure and I've never had one! Poor baby. They did that to both eyes then put patches on BOTH eyes and sat her in the dark for 15 minutes then did it again. The whole thing took an hour and a half! She was such a trooper, though!
Friday night she threw up more, but not as much as Thursday night. Saturday we went to the only skilled nursing facility for infants, kids and teens in Arizona. It's called Hacienda and it's about 45 minutes away from our house at (if you live in AZ and can relate) 16th Street and Baseline. It's a pretty nice place, like a hospital, but more like home, just like we've been told. It's 2 babies/kids to a room, and there's just enough room for the 2 cribs/beds and maybe a side table and chair. We can sleep in her room and they said they have cots, but it will be a tight squeeze. They also have 'Angel House' which is like a boarding house for parents. You have to go through the social worker there to book a room because space is limited. The facility is right next to a park so we could take Harley out for walks to the park whenever we wanted, too. The nurses seemed very nice and caring, the nurse who toured us told us "Never give up hope. There are children in here who aren't supposed to live who end up walking out of here!" when we explained Alpers Syndrome was fatal. That REALLY scored points with me when she said that. The atmosphere was nice, seemed kind of depressing when I walked in, but everything was explained to us and I felt MUCH better about the place by the time we walked out.
The other option would be to take her to Los Ninos Hospital (technically a 'hospital', but more like a short-term care facility to teach parents how to take care of their kids after they're released from the hospital with medical equipment, G-tubes, ect.) which is down the street from St. Joe's Hospital (where she is now) at 24th Street and Thomas. It's a small place with nice nurses. When we arrived, the nurse who was showing us around was holding this really cute little baby (maybe 4 or 5 months old) with ALOT of hair and he was just looking around and smiling at us. She said they were slow and that her and the other nurse were just feeding the babies (the other one had a little toddler girl with pigtails she was feeding). It, too was more 'homey' than the hospital and exceeded my expectations.
I think what we're going to do is take her to Los Ninos and attempt to take care of her ourselves there. If it overwhelms us, we'll take her to Hacienda, and if not, we'll take her home and attempt to get some home health agency to come in and help us out. My mother-in-law has even changed her shifts around to Fri. Sat. Sun. so that she can help out when I'm working (Mon. Tues. Wed. Thurs.) and I can cover weekends so Cameron isn't so overwhelmed. She IS a nurse, so that'll be SOME nursing assistence to get us started... : D
Saturday night was awful. Harley had 2 seizures (they apparently weaned her completely off the Atovan [for seizures] and didn't tell us, so I was TOTALLY caught off guard) and I didn't know they were seizures at first because they were NOTHING like the ones she had at the beginning of all this. I could only tell they were real seizures (and not the myoclonic seizures from the brain damage) because she'd stare off into space, her mouth relaxed and wouldn't move, and between 'contractions' she'd cry or try to (you can see it in her face). She had 2 and both lasted about 4 minutes. I video taped them on my phone and showed the doctor when she came in to check her out. GOOD IDEA, GO ME! I was lucky to have one of my favorite nurses, an older one named Lisa who was VERY experienced and knew EXACTLY what to do (write down when it started, write down her vitals, watch her and how she's moving, write down when it's done, call the doctor, etc.). After the doctor came in and said she'd write for a dose of Atovan to be given she went right away and got it as soon as she could (I then called the nurse's station because Harley threw up and she was walking in the door before the nurse's station answered). We got her cleaned up, changed her sheets, turned off her feeds, and gave her the Atovan. She seemed to calm down and stopped having seizures after that, but it made us realize that we may not be able to take care of her at home, alone. Can we handle rushing her to the ER everytime she has a seizure? It would sure be nice to have that care facility closer to home... But it isn't so... tough. Anyway, they ended up just stopping her feeds and putting an IV in around midnight.
She just got IV fluids until Sunday afternoon. They were giving her half feeds through her G-tube and half IV fluids. When I left last night it was a little more G-tube feeds than fluids and today she's back up to the normal amount of feeds and they still have her fluids going a little bit. She hasn't thrown up today, either! Good girl!