One of the reasons that Silas’ doctors were never very concerned was because he was still gaining weight. Each visit, I would recount the issues he was having, and every time they would say, “Well he’s gaining weight.” Let me tell you…there’s a WHOLE lot more to a child’s health than their weight. In the 10 minutes they might see Silas each visit, they couldn’t see what I was seeing. To them, he looked like an average little boy. So often, I wanted to drop him off on their doorstep and say “Keep him for a week and see if you still think he’s fine.”
After the ordeal with the bottles, I had to start feeding Silas regular foods. For the first few days, there were no major problems. But within a few weeks, I had a real mess. If I’d had a way to get some formula in him, I could have fixed it like always. The Good Start Soy had worked well for a long time. Earlier that year we’d swapped him to EleCare. (If any of you ever end up buying EleCare, I saved a lot of money buying it off ebay.)
Monday, August 11, I called the GI doctor and told them I had to come in immediately. Silas was so lethargic and he was starting to spike one of those crazy fevers. GI #1 wasn’t available that day, so we saw GI #2, a doctor in the same practice. I tried to tell him all that had happened, and he was concerned enough to run several tests and have us come back in two days (on Wednesday). Sometime between Tuesday night and Wednesday morning, Silas started screaming, but this time, he didn’t stop. I was afraid to take him straight to the ER because I knew if they just started putting things in him, they could mess him up more than they helped. We drove to the GI doctor’s office and sat outside the door, waiting for them to open.
I had tried to no avail to tell them about these screaming spells. When GI #2 saw it, he said, “You have to go to the hospital.” I was very worried about Silas, but I was also hopeful that they were finally seeing for themselves how much pain Silas was in, and maybe now they would find the problem.
GI #1 & #2 took turns at the hospital. The first week #2 was making the hospital visits. He sent us with papers telling them what to run when we got there. A CT scan showed that Silas had an ileus. His colon had just quit moving, and he was impacted. I had asked #1 months before if we needed to look at Silas’ colon. He’d told us no, all of Silas’ problems were upper GI. He was obviously wrong. They put in an IV and an NG tube. By now, Silas had completely quit eating, so the NG tube let us get some formula back into him. They ran Myralax through the NG tube and did enemas until they finally cleared out his colon.
This got rid of the non-stop screaming, but it did nothing for the other screaming spells he’ had for so long. They were still coming several times a day, and any time they put something in him – like dyes for a test, etc., the spells got worse. So much of our hospital visit he was either screaming or knocked out from pain medicine. The one thing that he enjoyed was being pulled around the hospital in a wagon. So, we walked…and we walked…and we walked…and we walked. Sometimes it was enough to keep his mind off of everything, and other times, we would have to get him back to the room and hold him down until it was over. At home we could leave him alone until it stopped (which he preferred). In the hospital, he had all these tubes hooked to him. When he started screaming, he would start pulling at everything and rip it all out if we weren’t holding him down.
And rip everything out he did…so many times. If he wasn’t having one of these spells, he left everything alone. But if one of them started and we didn’t grab him in time, everything went flying. I can’t even remember the number of times they had to put the NG tube back in. Oh, how he hated that. He wasn’t even three yet, but it took three adults just to hold him down every time, and one more to actually put in the tube.
That first week #2 ordered a marker study. We hid the tiny plastic marker inside some raisins, and he ate them. It took several days for the markers to get to the hospital. By then it was #1’s turn. We took our daily trip to x-ray each day to see what the markers were doing. #1 kept saying that they were moving, and everything looked fine. But I was concerned that Silas was still not having bowel movements. They were giving him formula through the NG tube, and he should have been going by that point. #1 wasn’t concerned.
#1 also wanted to put Silas on medicine to make him hungry. This really annoyed me. I understand this can help some kids. For Silas, wanting to eat was not the problem. He LOVED to eat. The problem was that everything he ate made him sick. To me, it was absolute torture to give him medicine to make him MORE hungry when he WANTED to eat. I wouldn’t let the nurse give it to him.
That hospital stay was a real low point. Here we were with all of these doctors and nurses and still no one knew how to help Silas. There was one night that was especially bad. Everyone else on the hall was trying to sleep, but we couldn’t get Silas to stop screaming. The pain medicine that usually knocked him out for a while wasn’t even helping. It was the middle of the night, and all Criss and I could do was walk the dark hallways and try to calm him down. I really wondered if he was going to make it that night.
Finally, we started yet another week, and it was time for #2 to return. Good thing he did. They were trying to do a 2nd endoscopy and his 1st colonoscopy. They ran Myralax through his NG tube all night, but nothing happened. Silas’ colon was still not moving, and he was completely impacted again! I had tried to tell #1 all week, but he wouldn’t listen. #2 said the markers had moved only a few inches in a week!!! Everything was stuck in Silas’ transverse colon. #2 said he’s never had a child on an overnight Myralax drip who still had not gone to the bathroom by the next morning. And, my, how Silas was hurting again. He was pumped full of all this medicine, and it couldn’t get out. #2 ordered the nurses to run enemas until Silas was flushed out again. They finally cleared him out just in time for the colonoscopy.
I can’t remember all the things they tested for while we were there. One day, they took a biopsy to test for Herschsprung’s Disease. That wasn’t it. They took blood. Various specialists would visit. No one had answers. The endoscopy was clear, signs of reflux were all gone. From the colonoscopy, #2 said Silas’ colon was loose and bled easily. When the biopsies returned several weeks later, every sample they had showed inflammation. However, #2 didn’t think it was Crohn’s. Blood work had also shown that some of his liver enzymes were elevated, but not enough to concern him.
We’d been in the hospital 2 ½ weeks, and we had few answers. #1 was about to be back, and I definitely didn’t want him messing us up again. It was about to be a holiday weekend, and #2 thought we’d be better off at home. So, we left with the same sick child, still having the screaming spells. We had Myralax to keep him from getting impacted again, and an NG tube. Before leaving, they started him back on solids. We had the NG tube to help him regain some of the weight he’d lost during the whole ordeal. I did have the pain medicine that would knock him out if it got too bad, but it took 30 minutes to work. By that time, it was nearly over.
After the hospital, I was definitely not going to see #1 again. He is a nice man with a great personality, but he really messed us up. Every time we’d see #2, he’d comment on how very sick Silas had been. After the biopsy results came back, they started Silas on anti-inflammatories. After a while, #2 started saying, “I just think he has very severe IBS.” It was reasonable to think he had IBS, along with all of the other problems, but I knew that wasn’t the answer.
My only consolation was that I had one doctor who really understood just how sick Silas could get.
Janel
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