My son is a mess…

My name is Laura and our little eight week olds name is Benjamin. I also have a 23m old who was on prevacid until he was 1. You said wits end…i am beyond there.

B was born 3 weeks early. Nicu three days for breathing issues.

At 3 weeks, I found a small dot of blood in his stool. He was being super fussy at night as well and wasnt napping well anymore. We were using good start and no spurting up. Went to the pedi, he found blood through out stool, given nutramigen. He didn’t eat for almost that whole next day and was now screaming at night, and during the day, basically when he wasnt sleeping. 20 minutes after every bottle he sneezes a ton, cough, gags, can’t catch his breath… Just a mess.

Called pedi 2 days later in tears after only sleeping 1 hour total those two nights. They switched me to alimentum, which he’s been drinking fine. Also rx of zantac. That night, has horrible gagging spell, screams for two hours, turns blue, we go to er. He sleeps the whole time we are there, they do an US for intususeption, nope, and send us home.

Over the next few days, he’s screaming non stop in pain, turns blue again, back to er. Dr. Tries to tell me that maybe he has a hair around his toe or penis. Seriously!? While there he starts spitting up, arching, the whole shebang. Dr. Finds two corneal abrasions, rx prevacid for reflux, sends us on our way.

Screaming continues for 5 days and nights. Spitting gets worse, and once again turns blue, off to er. While there turns blue again, cries hysterically for 6 straight hours. They put an oxygen monitor on him… Goes to 49% a few times whole crying, no one seems to mind. Dr. Orders another us and a chest x Ray, all come back fine. Sent home still on 1.7ml if prevacid and told he has colic.

Make an appt. With a gi dr. Get in 5 days later. Told to up dose of prevacid to twice a day, given levsin drops for suspected spasms, told we may need to try rice cereal in bottles, and there is still blood in his stool after being on alimentum for three weeks. we schedulEd an upper gi scan on Monday, and have to take a stool sample. they also did a cbc and found elevated platelets… They didnt seem too concerned. Said wed test in a month. Called mypedi and told her how worried I was. She calls childrens and gets me an appt Monday after the scan with the head gi at Cincinnati childrens! but I want to be prepared. He’s still screaming, not sleeping much, spitting, gauging, choking, stopping breathing, arching. I gave him those levsin drops against my better judgement tonight and they did nothing! He has slept 2 hours all night. I also think he may have sandivers syndrom…i have video.

Anyway, this is a partial vent and partial “any ideas?” post. He is in obvious pain and something isn’t right. What should I demand from the dr? Questions I should ask? Thanks so much!