Really, I think the whole bowel obstruction thing builds up over time, rather than in just a day or two. So, I will go back about a month before the BO (bowel obstruction). He started saying his tube hurt. The tube site was red, raw, and leaky...no amount of our usual creams (Desitin, Triamcinolone, Neosporin) helped. It also leaked a brown, clay-like substance everytime we did the vest. Sometimes there was so much "clay" it would leak down his pants. Yuck! I called GI, they had no answers regarding the "clay", but told me I could take him to his local Ped to evaluate the G-tube site for infection. I did that and they prescribed the oral antibiotic Keflex. That seemed to help for awhile (about 2 weeks).
While on Keflex, I cut the Miralax a little, thinking he would get diarrhea, like he usually does with antibiotics. Note: He is not on any probiotics at this time due to being on a milk-free diet (EoE regime). He did not get any diarrhea, so we went back to the usual Miralax dosage (1.5 tsp twice a day).
About 4 or 5 days before the BO, he started to have floating grease with his poops. We hadn't done anything different with the enzymes or fat content, so I decreased the Miralax down to 1 tsp twice a day. He started complaining of belly pain at this same time, but kept saying that his tube hurt. He was not sleeping well at all. We think his stomach was getting so full from the overnight feeds that it was painful. We had a lot of trouble with the pump beeping, it can do this if it thinks it is clogged. We used acetaminophen for pain relief. Also note: His poops gave no indication of constipation...actually they were yellow/orange and soft. I have seen the hard, pebble-like constipation poops and he did not have that.
The day before BO, he would not eat a bite and hadn't pooped all day. He was very tired and quiet. Just sat around and played cars. I called GI and waited all day for a call back. He threw up once. It was all black. I finally couldn't take it any longer and took him to the local Urgent Care, who then transferred him over to the Ped department. We were there for 4 hours. They did an abdominal x-ray, which was inconclusive. He threw up at the doctor's office (all over me!). They gave him a suppository, which produced no results. They sent us home and told us to go to the ER if things got worse.
That night, I increased the Miralax to 3 tsp (which is twice his normal dose) and we ran Pedialyte through his tube overnight. At 2 AM, he woke up miserable and threw up. Nothing was going through his system. We stopped the feed and he fell back asleep.
DAY 1: At 6 AM, we packed up (expecting an admission) and we to our local ER. They did another X-ray, still inconclusive. Suctioned out his stomach, through G-tube. Gave IV fluids. He could not tolerate his vest treatment...too painful. They called an ambulance and sent us to Children's. Unfortunately, they gave him morphine, which did not help move things along at all!
Once we got to Children's, we got a room right away because we came on an ambulance. But then we sat in the ER all day! We went through more X-rays and met with Pulmonary and Surgery, but no new treatments were started until 10:30 PM! Then they did 4 oz boluses of Miralax through his tube every 4 hours. He got through one, but the second one had him screaming in pain. We tried acetaminophen, which made it worse (more fluid in an already stuffed stomach). We had to drain everything out. He fell right back asleep.
Note: He was able to tell us exactly where it hurt (his upper, right abdomen, just below his ribs), which correlated with where the blockage was on the x-ray.
DAY 2: More X-rays. They thought they could see where the obstruction was in the X-ray and that it hadn't moved. Had to have a fluoroscopy (aka torture)...lay under an X-ray machine, pump contrast into butt, tape butt cheeks shut, watch on X-ray for 2 minutes or so, then poop it out. Some of the clear contrast came out, but no poop. Went back up to room and started GoLytely as a continuous slow drip through G-tube. A few hours later, an enema was performed, which finally produced some results. They put two buckets in the toilet to catch and measure his pee and poop. They finally let him eat/drink clear liquids, which he was not interested in.
Note: I highly suspect that he may have been holding poop in at this point, for fear of it hurting. It took hours just to get some of the enema out! He got the enema, sat on the toilet, produced nothing, took a 2 hour nap, then finally poop mush came out!
DAY 3: Another X-ray. Finally showed things moving down, but still showed some contrast from the flouroscopy. Surgery discharged us. I asked for one last enema just to get everything cleared out. Pulmonary came in and explained where the blockage was...on the Ileocecal Valve between the small and large intestine. We were told to go back to our normal Miralax regime (1.5 tsp twice a day). No other instructions.
In the week after the BO, he has had extreme hunger. He continues to have greasy poops. I have kept him on an increased Miralax dosage of 2 tsp twice a day, just because I am scared of it happening again.
I have done a little research on colon cleansers. Is anyone using these? I do NOT want to resort to it, but don't want another BO hospitalization.
I asked all his doctors and their thought was eating must of been painful for him previously;( I hate that it could happen again, and again without warning.