I just noticed I haven't posted since Jax came home!
Wednesday, May 29, 2013
Posted by Lacey at 1:16 PM
Saturday, May 18, 2013
Jax continues to do well. A few minor things of course, that's bound to happen. His IV blew in just a few hours, and it left a nasty abscess on his arm. He had a rash from who knows what, so he got benedryl for that. Probably the biggest thing was they switched his seizure med, because they couldn't get topamax in IV form. They substituted it with phenobarb, which is not remotely related to topamax. As a result from stopping the topamax so suddenly, he had seizures that we haven't seen in a long time! I was quite worried. Despite the fact that Jax was on pretty hefty doses of phenobarb for 5 years, he's been weaned off it for a year. So these big doses of phenobarb have totally snowed him! He wakes up for a few minutes, and then goes back out. He has basically slept completely through the last two days. Luckily neuro caught the boo boo and ordered the phenobarb stopped immediately!
Posted by Lacey at 11:59 AM
Thursday, May 16, 2013
Jax is out if surgery and doing well. Even though I told anesthesia, they took him off the vent in post op. his respirations were double what they normally are, so I told them to put him back on. He immediately went back down to baseline. 4 hours later and he is still super groggy. He wakes up long enough to thrash, and make faces, and he goes back out. When he wakes up he retracts a lot and his little nostrils flare, even on the vent, so we'll see how he does when he really wakes up.
Posted by Lacey at 3:42 PM
Tuesday, May 14, 2013
Wow, time flies when your a busy momma!
Posted by Lacey at 3:57 PM
Saturday, May 4, 2013
I guess Jax felt like we were getting a bit too comfortable, and we had let our guard down. Well now it's back up, and back up big time!
This little baby now sits on the back of Jax crib, instead of in its bag, hanging on his supply shelf.
He had a plug in his trach.
Its never happened this fast, ever. In the two minutes it took me to get into his room, his airway was completely closed, and he was blue. I grabbed my spare trach, which is right there next to his bed. But he was already starting to lose consciousness! Thats when I panicked just for a millisecond. I wanted to get his ambu bag, so I could give him rescue breaths, but I also knew the trach had to come out. He has never lost consciousness on me before, NEVER! But the ambu bag was not within my reach, so my shaky hands hurried and got the clean trach out and the obturator in, so I could switch trachs. I was able to do it and get him on his vent before he completely passed out. But it was horrible!
I've seen Jax blue at home before. He can be a naughty, naughty boy! But he rarely gets a plug, in fact, he never had a plug the first two years he had the trach. Only in the last 6 months have I had to do emergency trach changes for a plug.
I feel like I've seen just about everything. Between what Jax has done in the hospital, and when I used to work there, I've pretty much seen it all. I've helped with CPR on kids, I've seen Jax code. I've seen his heart rate drop so low, that I think his heart is just going to stop!
I've always been able to remain calm. I've been told in those situations with Jax that I was amazingly calm.
I wouldn't say I wasn't calm on this morning. I worked quickly to do what needed to be done. But deep down inside my soul I was screaming! I was completely and utterly in a panic!
Some people said, oh I wouldn't have been able to do that. Yes you would, when its your child, you would. This is why there is extensive training in the hospital before you can bring a child with a trach home. Add the ventilator and you add another 3 days of training. Although I already had the training, that didn't mean that I was off the hook. I had to sit through that training just like daddy did. And its for these exact situations that they teach you all you need to know!
I guess that was a wake up call. Its been a while since Jax has done something like that. He just wanted to make sure we were always prepared for what may happen next. And to never forget how fragile life really is
Posted by Lacey at 11:22 PM