I was hoping that our surgeon would be on call this weekend or the other surgeon that had discharged Isaac from the NICU. Jose actually picked up the phone and then looked at me and said it was our surgeon. I was so relieved. But when I got on the phone she told me who she was. Not our surgeon. :( I explained to her what was going on and she asked me a bunch of other questions. Did he have fever? No. Was he refusing to eat? No. Was he acting sick? No. Was his stomach distended? No. Did the diarrhea have a foul smell? No. Was he vomiting? No. She told me I could either wait awhile to see if this was just an isolated incident or I could head into the ER. It was my call. She said that because he had no other symptoms that it didn't sound emergent but she said it was up to me if I wanted to come in. I just felt in the pit of my stomach that something wasn't right but then again he had NO other symptoms of enterocolitis. But like all the horror stories I have read about your child can go from having one little symptom to being very ill very quickly. So I decided that we should probably take him in. Jose had to work that night like every Saturday night and by getting him checked out meant that I could come home and not worry about it. So we decided to pack up and head out..
When we got to the ER they assessed him. Basically the usual head to toe normal baby work up. They said he looked good and it was probably just an isolated incident. But I asked if the surgeon was going to come down and look him over.. Which is STANDARD Hirschsprung's baby procedure. And the ER doctor said no that they felt he was fine and they didn't need to contact the surgeon. They didn't even do an abdominal xray.. Which is also STANDARD procedure for Hirschsprung's babies. Well we insisted that they contact the surgeon because we had spoken to her and we would feel better if we could just get a quick word in with her about how she wanted to handle his care for the weekend. So the ER doctor contacted her. They came back in and said the surgeon wanted to get the abdominal xrays. Well duh people we had been saying that the whole time. So off to xray he went..
They ER doctor didn't even come back in.. The surgeon did. I asked her immediately if he was ok.. And she paused and said.. "The xray is VERY concerning." My stomach immediately dropped. My mind started racing and I burst into tears. I had no idea what that meant.. But from the look on her face I knew it wasn't good news. She told us she was going to pull up the xray to show us what was going on. This was the second time in my life I had been this scared. The first being, well obviously, when he was diagnosed.
She showed us on the xray how backed up with gas he was. His tummy was very distended internally but externally it was not very well pronounced. She said in the area where he had the surgery there was a narrowing. And she did not know why it was like that but there was definitely a "stricture" there. There was also talk of intussusception and a blockage. She said that she was going to examine him and do a catheter in his bottom to release all the air that was built up in there because it could not get out. I was panicking thinking that his surgery didn't work and we were back at square one. When we lifted up his shirt she saw the rash that numerous pediatricians had seen at his regular doctors office and asked how long it had been there. I said well kinda on and off for 2 weeks and then explained how 3 different doctors saw it and said it wasn't a big deal. She immediately said, that is a milk protein/soy allergy or another allergy and that's what could be causing all the rest of his symptoms. Um like gas, spitting up, distension, explosive diarrhea, and cause a stricture to form because allergies inflame the intestines. All those trips into his pediatrician and me knowing something was not right and they keeping telling me everything was normal, well look here buddy, I was RIGHT! I was so furious. How long had by baby been suffering??? Seriously. And the ER was about to send us home and we would have went home if we hadn't requested the surgeon to come down. This is why so many things go undiagnosed.. I have read SO many stories of other families STILL chasing answers for their babies. STILL fighting issues and illnesses because to doctors, they are just another kid. Everything falls into the "normal" category. My If you can't trust an EMERGENCY ROOM, who the hell can you trust? I'm glad I am the persistent mom that kept pushing. I will not take no for an answer. Just as I thought this would be a case solved and we would be given at home instructions, she dropped the bomb. He was being admitted. He needed further testing, time to clear out his system and she wanted to monitor him at least until Monday when our surgeon was back in the office so she could decide what she wanted to do. I was terrified.
The whole time this is going on, Isaac is happy as a clam. When we wheeled him up on a big huge bed to the pediatrics floor, he thought that was the coolest thing. Ha. I didn't. But I knew he was in the right place and he was going to get taken care of.
Nothing really happened over the weekend. He had a few more xrays that showed the gas was clear and things were looking better. The stricture was still there and could take at least 2 weeks to improve because of the inflammation. His intestines needed time to recover. He was on bowel rest for 24 hours which meant he couldn't eat anything. He was NOT happy about that. And we were waiting for a GI consult on Monday so we could really confirm this is what was going on. All his labs had come back fine, no infections or anything. Thank GOD! So pretty much hung out until Monday when his surgeon and his new GI doctor would come by to let us know what the plan would be.
On Monday, which was December 19th (ya so close to Christmas) our surgeon and GI told us that this was indeed an allergy but also intusseption was not ruled out and that they wanted to monitor him one more night and if things went ok, we could go home tomorrow. And upon discharge we would be given instructions for at home care. Our surgeon also wanted to do a barium xray which is what he had in the NICU so that she could get a better look at what was going on. She wanted to rule out any kinks or twists in the bowel, which she said can happen from surgery. Or if there was scar tissue that was forming. Or any other abnormality. But that wouldn't be for 2 weeks after the bowel had time to rest and some of the inflammation went down. How could I wait 2 weeks to find out if my baby was ok? Another wait and see thing.. But in the meantime, Isaac was taking to his new formula.. Which I was happy about.
Tuesday the 20th we were released. We had to do at home irrigations which was a saline rinse on his bowels with a catheter. Not fun. But these help keep his system clear and reduces the risk of enterocolitis. So we had to learn how to do these. And we had to do them 2 times a day. We had a follow up appointment set with our surgeon and GI.. Now we basically had to wait for the contrast xray to really know if anything was going on. This was definitely weighing on my mind..
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