Thursday, July 24, 2014

More throw ups (and MRI results)

So last night didn't go as smoothly as I had hoped! Reagan was getting sleepy, so Mike went and laid her down, but she wasn't really dozing off. She was kicking around and flailing her arms, and when I went in to check on her,  she escalated. She started getting vocal and I could tell, we had to do something quick! I gave her a dose of Lortab and it almost immediately calmed her down! After that, it was smooth sailing! She slept through the night as far as I could tell. I did get up at 6am to find her kicking around, so I recovered her and she fell back asleep for a bit. She's been in a much more calm mood today. No more crazy laughs, but very smiley and sweet. We had her all dressed and ready to go to her neuro appt this morning, when I decided to call just to confirm the appt (they hadn't given me a confirmation call so I was slightly concerned). Well, good thing I called, because they had taken it upon themselves to cancel her appt! Aghhhhh!!! I was slightly annoyed, so the nurse managed to squeeze us in for a 3:30pm appt. Since we were free, Ryan and I went to lunch with Mike, where Ryan proceeded to pee all over the floor as if he didn't have a diaper on at all!!! Not sure what happened, but he must've had a serious diaper malfunction, because he made quite the mess! Thankfully we were already finished, but he was not a fan of riding home sitting on a chux soaked in pee! While Ryan napped, Reagan was able to squeeze in a quick PT and OT session before we had to leave for her appt. She was slightly sensitive to sudden movements (during PT and OT), but otherwise OK. She had a small (seemingly out of no where) throw up right before we left for her drs appt. Otherwise, she was great! Super smiley and sweet! And still! We had to explain to her neuro that she's never this still! Legs weren't kicking, hands weren't in the mouth...very unusual! Her neuro went over the results of her MRI. Everything was basically similar to her previous MRIs. So, in this case, no change in an MRI, is good news. There was thinning of the corpus collosum and potential decreased white matter, but these are common in kids with developmental delay (and have been seen in her previous MRIs). As far as her seizure medications go, he is of the opinion that we shouldn't change a thing, don't fix something that's not broken. If we see any more quirky movements, he wants us to video them and then email them to him. He's definitely letting Reagan's other doctors take the lead right now, but I can tell that if we ever needed his epilepsy expertise (which I hope we never do), Reagan would be in good hands. I really like this neurologist. He's very personable (which is rare in a neurologist), but you can tell he's always thinking, obviously a very intelligent guy. Glad he's on our team. So after our appt, we ran upstairs to get her blood drawn (just checking her liver enzymes and Banzel levels). Reagan is such a pro! Piece of cake! We were in the car and heading back just in time for 5 o'clock traffic! We had a night nurse tonight because it's Bible study night. Ryan went over to our neighbor's house to play and the night nurse stayed with Reagan. Unfortunately Reagan had another throw up right around 7pm and then another one an hour or so later. No gagging or retching in between, thankfully, but there were signs of increased nausea. An increase in spittiness/swallowing, tongue protrusion, and biting her lower lip. She continued to be sweet and smiley though. When I got home from Bible study, I picked her up and held her until bed time. She was VERY sweaty. Cold, clammy hands and feet and super sweaty body/back! Poor girl! Her temperature regulation is definitely out of whack (and I could smell "bad day smell" on her head)! She eventually dozed off with the help of clonidine and Mike was able to lay her in her bed. Hoping she's able to stay asleep! Please keep my sweet, nauseous girl in your prayers!

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