@fourof5zs

Thank you for sharing your story. It is helpful hearing other people's experiences with abdominal surgeries, NG tubes and GI issues. You may have read my son's story in an earlier post, but I don't know how much I mentioned of his GI issues. He was a previously healthy six month baby...thriving, meeting all his milestones. He had occasional blood in his stools and is it was unaccompanied by any other symptoms (no pain, vomiting, he was normal weight active and happy) his family physician was not too concerned. He said to try eliminating dairy from his diet. It still had not gone away after several months (Owen still thriving) so I requested a GI consult. Then, Owen got his six month immunizations and the next day became lethargic. No fever, just completely different...not eating, then he threw up. These were all new symptoms. I took him immediately back to the doctor. I say this with trepidation because it still gives me chills: She sent us home and told us to give him Tylenol. That night Owen was not right. He was whimpering all night and vomited again in the morning. My husband and I felt so torn...we didn't know what to do. We knew Owen was not himself, and yet he had no fever. We felt we were being overly cautious, but we took him to the ER. Vital signs were normal, they thought he probably just was not feeling well from shots. He asked if I would like him to do some testing and I said yes, aware that the history of bloody stools could mean something else was going on. An abdominal ultrasound showed an inflamed colon. They sent us to Children's Hospital Colorado but there was no urgency...no sirens, the paramedic said he would probably be back in a day or two.
Fast forward to CHCO ER after hours of waiting for test results/bloodwork to return. I was just sitting there holding his limp body for hours, wondering what was going on. At that point I felt an intense need to convince these providers that this was NOT normal for Owen. He was not resting or napping or just a little "off." As all his VS were still normal, no fever, I felt almost foolish doing this. At one point there were several nurses and the ER physician in his room just observing him. They were all staring at him as he lay there limp. At that point I thought his breathing was abnormal. I told them, "I don't think his breathing is right. Something is going on." His bloodwork came back and all his labs were off. Vital signs still normal. They did not know what the bloodwork indicated but said he was going to the PICU as soon as a room was available. At that point my heart dropped. I knew this was extremely serious but had no idea what was going on with him. Two days ago he was smiling, sitting up, playing...

In the PICU he was hooked up to all their monitors, at this point there were no interventions because they were trying to figure out what was happening. I remember standing by his isolette and holding his still hand, rubbing his head. I noticed his body was looking ashen. I immediately told the nurse nearby and a swarm of people came in. I had to stand on the side of the room watching in terror as they intubated Owen. I will never forget the color seeping from his body and the sound of the his oxygen monitor beeping lower and lower. From there Owen rapidly progressed into multi-organ failure. One body system after another failed. This was all one day after taking him to our family physician. Owen's kidneys completely shut down and he was put on a CRRT machine which is not intended for six month olds. It directly cleans the blood and is basically a kidney outside the body. Not many hospitals have them, and even putting an infant on one is dangerous. We had to sign a waiver that we were willing to risk it. Without it he would have died. His liver was failing and his respiratory system and cardiovascular system tanked. He was put on triple vasopressors and when his pressure was still not recovering (he was about to die) they decided to put him on ECMO (heart lung bypass). My husband and I had to say goodbye to him. I truly thought that was the last time I would see Owen alive. The situation was urgent, so there was very little time to say goodbye. We had to wait in the waiting room, my heart was frozen. The surgeon came out in ten minutes. I knew that was too soon, and I thought he had died. She said right before the incision was made into his artery the attending said his BP went up a little. She wanted to wait for the ECMO. They called it off.
After that, his body went into an auto-inflammatory state. His blood vessels were leaking and he was being pumped with blood products, fluids, vasopressors, steroids, antibiotics. All during this time every department was trying to figure out what was causing his organ failure. Every kind bloodwork imaginable was done. No answers. He was still going downhill, so they decided to do an exploratory laparotomy to see what was going on inside...during the course of his PICU stay he had several open belly surgeries. The only thing they found was an inflamed colon and a lot of fluid buildup. No dead bowel or signs of infection. He ended up with a colostomy to try to divert stool from the inflamed sigmoid colon.
I don't want to make this too long (He has a Caring Bridge site that is open to the public under "Prayers for Owen" if you would like to see his whole, continuing medical journey) After he was discharge to the floor, he spent three weeks vomiting and with a NG tube. They wanted to give him a g-tube but we really resisted that. We took a class to care for his NG tube at home (three and a half hours away from CHCO =) and got a lot of practice putting it back in an eight month old by that time! After several months of trying to get him to eat and wean off the NG tube feedings, he finally started drinking a bottle. Several months after that his colostomy was reversed. There is a lot more to the story, but we are thankful THAT part is over! He is not almost three years old, still no answers as to why he went in to multi-organ failure. He has lasting affects from the hospital stay including a compartment syndrome injury to his left leg which has required surgery and will need more surgeries this year. He is a fighter and a bright little boy. We are grateful for everyone who has helped him on this crazy journey!

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