We are all moved in to our new cozy home. We are really liking it, especially the fact that Ambrose and Mommy now have a bedroom to share just through the wall from the living room and no longer have to sleep on a futon in the living room. Since it is a single story home Ambrose can go everywhere. Yeah! He's actually been sleeping better too! There is still a LOT of unpacking to do though.
Ambrose has been staying out of trouble, but has us concerned as he currently has a fever. He has been spitting up a little every day. (He had Nissen Fundoplication surgery to prevent reflux when he was 6 weeks old. It will loosen up over time, much quicker in children who have seizures. Sophia's also loosened up after about 18 months. She eventually got a G-J tube, which sends food into the small intestine instead of the stomach. It stopped the reflux but has problems of its own. Redoing the surgery is more complicated due to the scar tissue that forms) In the spring he started being able to spit up a little, but it bacame very infrequent after starting Prevacid a couple of months ago. I'm not sure what changed, but it is daily occurance, despite using a farrell bag, which attaches to his G-tube to allow pressure to be relieved and can often prevent actual vomiting.
The main concern is him aspirating the refux, which he seems to do. There are times, including this morning, that it seemed pretty clear that we were suctioning formula from his trach right after he refluxed. There is not much we can do about this which is very frustrating since it can cause an aspiration pneumonia. Sophia had 3 life threatening pneumonias before she got her Nissen.
Ambrose had a 101.4 fever this afternoon, along with increased seizures. It came down with Tylenol. I have put him on CPAP and the good news is that he is NOT requiring any more O2 than usual.
Please keep him in your prayers. I WILL keep you posted if anything happens.
On a positive note, he has been having a lot less seizure activity lately. He's actually had a few days each week with ZERO seizures! Previously un heard of.
Ambrose wore his Amazing Ambrose superhero costume for Halloween. Sophia was Super Sophia on her second Halloween. I will find a picture to post.
I have begun working at Brattleboro Memorial Hospital and I love it!
I hope you are all well. Please keep Brosie in your prayers and Sophia in your heart!