Pretty Good Day!

Apparently it's too hard to tell what the stronger A-Symmetry on the left side over the right side really means-on her first EEG they were both equally A-symmetric, but since being here her left side is 'worse' than her right side. Her right side is still A-symmetric, but her left side is 'worse'. Her most recent EEG before coming in here were looking better - not sure how, but that's what her neurologist said - and we aren't sure what events specifically could have changed that, but it has changed. So basically it's too hard to tell if her right side has gotten 'better' or if her right side has just gotten 'worse' from her first EEG. Bummer-oh, well...doesn't really change anything.

I tried to put her on her stomach to see if that would help - you know, because she likes to be on her stomach sometimes, and it totally did! It didn't last forever, but gave her a few minutes of peace and seeming comfort. It was so funny looking though so I had to take pictures! From one angle it looked like her face was buried in the bed! Really she was just resting her head on one forearm and her paci on the other. It was pretty neat! I haven't tried it today yet because Mamma Mia and I are here to hold her instead - but when we go get something to eat I will try that again.

GOOD NEWS! They have pulled the tube back to an NG tube (naso-gastral - food going into her stomach) today which means that she should start feeling full! So maybe we will see a little bit happier of a baby! They did want to be sure that I understood the risks of aspirating, but with how 'awake' she's been I don't think aspirating is too much an issue..I'm sure she will spit up more now, but like I said in the last post-she's been eating p.o. or "by mouth" with seizures for her whole life essentially. So, yay! Let's hope this does something to help soothe this sweet little baby.

10-15-13 11:58am - Abigail had her first seizure in a few days. Mamma Mia was holding her and I was getting ready to go take a [very due] shower..Mamma Mia was singing to Abigail when it happened and after it was all over and I changed her bum and handed her back Mamma Mia said "I'll try and sing one more time, but if she seizes again I'm never gonna sing to her again". That made me giggle. Poor mommy. (she was joking, but it was still funny!)

Rehab came in for a visit and mentioned some medicines for neurological irritability - the first one they mentioned - baclofen - I have heard of this medicine before, and actually was written a prescription for it back in May of this year. It is a muscle relaxer and with Abigail's already low muscle tone in her neck I decided against giving it to her. The next one - I don't remember what it was called - but it was a blood pressure medication - since Abigail hasn't had any issues with blood pressure I vetoed that one. The third one was Gabapentin - This one is a seizure medicine, but it not usually used as one anymore, its more used as neuropathy relief. This would be used to help alleviate some of her neurological irritability. I told them though that I would like to hold off until I could see where she would be at baseline. They said that would be okay.

Abigail had 3 seizures today - about 1 an hour, almost on the hour! 11:58am, 12:52pm, 1:53pm - they gave her a dose of her new seizure medicine - Vimpat or Lacosamide - and she didn't have any seizures the rest of the night (that I saw). I left for dinner around 5:30 pm and got back around 8 - when I got back her Grandpa Craig and Grandma Debbie were here! What a wonderful surprise! They said she was really calm for a good hour before I got back but when I got back she was really fussy.

Right after I returned I noticed her EEG head wrap was pretty much off, so I asked if they could call EEG over here to wrap her another one. The nurse said that Neuro had said they got what they needed so when the EEG hat/leeds fell off to just stop the EEG...so that's what we did - the EEG came off around just a little after I got back..You should have seen how badly she was SWEATING under that thing - PROFUSELY. It then clicked that she has a hard time regulating her body temperature and is usually more warm than cold, but when she gets really hots he gets really mad! DUH! That cap would have been keeping her so warm! Then she would get mad and get hotter and get madder then hotter, and the vicious cycle just continued. After we took the EEG off we started to give her a bath when the IV team came in (yes, again) to put in another IV because hers had fallen out (yes, again!) (IV's don't stay good for very long in babies because of all of their movement-and with Abigail's anger spells she was contorting every which-a-way) Anywho, it took them 6 STICKS to finally find the IV - to their defense, each stick went in and they found a vein, but it wouldn't flush-meaning they couldn't use it-that something happened and the vein shut them out. So the one team tried 3 times and then brought in Ryan (i'm pretty sure that was his name) and it took him 3 sticks to get it..but he got it! Abi wasn't too thrilled about that - but we finished her bath and got her dressed and she calmed right down. For the rest of the night she didn't even make a fuss! (until she was about to go to sleep, she then got a little fussy-but nothing bad, I just let her fuss herself to sleep because I knew that's where it was headed)

So, for rest of the night Abigail was impeccable! She was perfect. She was rooting very hard and they let me feed her through a bottle and she took it just fine! I only gave her 2 oz  and she seemed like she wanted more, but I was happy to be able to bottle feed her at all!

Overall today Abigail had a really good day - well it ended really good! She got her NG tube, she got her EEG off, she got bathed, and she had a good relaxed night! (We'll let the seizures and irritability throughout the day slide this time)

This is AbiNormal