On September 20th Ethan went into bad respiratory distress. Once we were able to stabilize him in our local ER, he was flown to the Children’s Hospital Intensive Care Unit.
Ethan vomited and aspirated, causing his lungs to get irritated and struggle to work. Things were looking much better after about a week and he was able to go home. He really struggled at first, but once the treatment kicked in, he was ready to come off oxygen and continue his recovery at home.
His nurse requested a visit to our local emerge the next evening as his breathing was becoming more laboured again. After a quick check-up we all agreed he needed stronger oral antibiotics and he was sent back home. It took less than 48 hours after discharge for him to have another coughing fit, vomit and go back into severe respiratory distress. He struggled much more that time, as his lungs were still healing from the previous event. Because he could not come off the high flow oxygen this time before transfer, and the helicopter doesn’t take patients on high-flow, he was taken by ambulance. It was slightly ironic, as he was much sicker the second time around, needing more support, but got the slower transfer time.
His second admission was more difficult on him. He required longer oxygen support, was not tolerating feeds (which caused quite a bit of weight loss) and he was overall quite unwell. Part of the feed issue was that we were no longer comfortable giving him bolus feeds – a bigger volume over a shorter time frame, basically like having a regular meal – so he was running continous feeds for 24 hours a day, however he could only tolerate half strength feeds as he would start to vomit when we tried his regular strength.
Once he was able to come off the oxygen support – after about a week – we started focusing more on his feeds and what our plan should be for that. The team ran several tests and it was ultimately decided he would be safest with GJ Tube – where the food goes directly into his intestines at a slow rate vs. into his stomach.
He went down to Interventional Radiology, as they have to place this type of tube under x-ray guidance, and was slowly started on feeds. We increased his strength every couple of hours and Ethan was finally ready to come home, with a better and safer plan in place.
The GJ Tube brings quite a bit of change. He now will be running feeds for 18 hours a day and if the button comes out of gets clogged, it’s a trip to the Children’s Hospital as we cannot put it back in ourselves, but those changes are worth it because he will be much safer. Once cold and flu season is over the plan will be to transition him back to his regular G-Tube.