I know I've neglected you all for three weeks now. Sorry!
Eli got a little cold that started on the 24th of September. By the weekend he was visibly in more pain, so Monday we went to the Doctor, and found out he had an ear infection.
He started getting better, and we were so glad....then the next weekend - he was in REALLY BAD PAIN!
When Eli is in pain, he looks like a fish out of water when laying on the floor. He just cannot get settled, his body is always in movement, but the pain makes it fast and aggressive. It's horrible to watch! He was fussy, and nothing would make him happy. He had a very hard time eating, and sleeping.
He kept pulling his right knee up and he didn't want to lay on his tummy. Then we knew something was probably bothering his Stoma (the site where his G-tube goes in his stomach). I had the medicine to help him at home, but because I couldn't see anything at the site, I didn't think it was that.
DUH! Now I know...if he acts like that again, just give him the medicine! I felt like a horrible mother for not helping him sooner. We went to the doctor again on Monday, and when they pulled back his gauze around his stoma there was pus! Hello! Why couldn't that have shown up on Sunday! Sheesh!
So, they cultured it, told me what to start putting on it. He was better by Monday evening, and slept through the night ever since! Poor baby! :(
We have four doctor appointments scheduled this month. With two more being added!
We saw a Physiatrist last Wednesday. He's recommending Botox in jections in Eli's aductor muscles in his inner thighs. To relax thos muscles so maybe sitting, and being in his carseat might not be so hard. Also, diaper changes might be easier, too! Hey, that would be great!
Thursday, we went to Seattle and saw a Pulmonologist. He upped Eli's Prevacid, because he thinks his Reflux is causing his congestion when he eats. He gave us a prescription for Reglan, too, but we aren't going to try it yet. We want to see if upping his Prevacid helps first. This Dr. recommended we see an Otolaryngologist (ENT) so we can get a Bronchoscopy. They want to look into Eli's airway and see if what is going on in there....as we are trying to figure out why he goes into Respiratory Distress.
I'll keep you posted regarding all the stuff we find out at our future appointments....