So my super exciting post will have to wait a few days....we are at Children's! This is not a bad thing. I took Charlie to her GI appointment with the new doctor yesterday, told him what was going on, and he said, "Ok, let's get her in here and find a way to manage her symptoms". Okey-dokey. I thought I was going to have to beg and plead and throw a temper tantrum. LOL
So yesterday, Charlie's nurse picked her up out of her bed and her tube fell out. Whoops. Apparently the balloon had deflated. This was the first time a pulled tube didn't inconvenience me....we were headed to children's anyway! So they fit us in right before her GI appointment. Then we did the GI appointment and went home. Today, we had to do her ultrasound appointment and then go straight to Admissions. The guy was checking us in and he handed me the general consent form and asked if I'd filled one out before. "Yeah, this is the fourth one in 2 days!" Crazy. Although, I can't imagine they can look at Charlie and not realize that we do this stuff all. the. time.
Anyway, the ultrasound showed that her main salivary gland they did scarred up just fine. He did not do the other main one (between the 2 "main" ones, they produce 90% of our saliva, the other 4 are not as productive) because they have to be careful about drying the kids up. But he said in Charlie's case, there's no reason we can't do the other one. She'll never eat orally and at most, we'll have to swab her mouth, which we do all the time anyway, since she leaves her tongue hanging out! So we're going to schedule that.
So yesterday, the GI doc said to just run Charlie on pedialyte or diluted formula, just to keep her hydrated until we admitted her. Well, she made it till noon today and started screaming. Her nurse said it's the worst she's ever seen her. So I didn't even bother hooking her feed back up. They were planning on putting in an IV anyway. A few hours off won't hurt her. So she was off all the way until bedtime. When I put in (some of) her meds, she SCREAMED. For like 1/2 an hour.
Well. This admission came at a perfect time huh? I can't believe how quickly she can go from tolerating 90% of her feeds to screaming when we try to put a few mls in her. This is nuts. Oh well....tomorrow we'll trudge on. They are going to look at her bloodwork. If she's anemic they are going to look for ulcers. I think they want to put her under GA to go down and look in her intestines. Normally I'm freaked out about GA but I can't do this anymore! I'm at the end of my rope! So I'm not even going to hesitate. They need to see what's going on so we know how to treat her. He wants to see if there's any "distended" parts in her intestines. If there are, it means she's not pushing the formula through and she's stretching herself out. And we shouldn't try to cover up the pain with meds (because then we wouldn't know when to stop her feeds before serious damage occurs). But if it all looks fine, he thinks meds might be a good option. There's other things they are going to check too. And we'll be starting a new formula.
I can't believe it took this long to get something done. But when you find the right doctor, it can be done QUICKLY! Holy cow.
Best part? They stuck us on a different floor than usual and we have a big room with a big bathroom and we have a mini-fridge! I'm sooo going shopping and stocking it tomorrow! I hate eating the food here. It's expensive, not good for me, and doesn't even taste that great.
There's also computers on the floor so I don't even have to go downstairs to update! This is like Park Place compared to Baltic Avenue. LOL