Things were going well at home. We were getting into the rthythm of being home with two children and trying to meet each of their own unique needs. Isla was beginning to have a hard time adjusting to less attention and trying to understand Cohen’s needs and special equipment. Cohen was doing great with his new and improved high-flow system and was breathing so much easier and QUIETER!! Last Thursday we had his pediatrician check-up and he was gaining good weight as well, a little under 9 pounds. His pediatrician said once he gained to being 9 pounds, he would be able to increase his rate of his feeding tube by 1 ml!! It’s the little things we celebrate these days.
On Thursday afternoon we noticed his gtube was very loose and looked to be almost falling out. Sometimes this happens with them because the balloon inside the stomach tends to get deflated. But because he was due for a gtube switch anyway, we took him into the surgery clinic on Friday and replaced that.
Over the weekend things began to change again. Saturday marked his 9th day at home and we were eagerly anticipating it but also dreading it because this was the day that always marked our return to the ER, return to the hospital, and return to our other lifestyle. On Saturday night he had three desaturations while on his high flow oxygen. Usually we aren’t too worried when the alarm sounds on his monitor, but because he was dead asleep we knew that these were true desaturations. He only went into the low 90’s but this seemed like something had changed in his body because he was on the high flow oxygen support so that he would not desaturate. The rest of the night was peaceful and he slept without sending off the monitors.
On Monday morning he was very frustrated around 4am and we could not get him to calm down. He ended up spitting up a few times and began choking on his spit up. As most newborns spit up he was performing like any newborn….but because he was on high flow he had air pushing his spit up very quickly back down. I rushed to turn down his oxygen until he was finished but he sounded very flemy afterwards. I stopped his feed and called his pediatrician. She suggested we give him some time to calm his breathing down, since it had raised into the 80’s and then try to start his food again. I did this and he was fine all morning until the afternoon when he spit up again.
Again on Tuesday morning he spit up. We had three doctor appointments scheduled for the day, a renal ultrasound to check the fluid in his kidneys, a genetic appointment to ask questions about his diagnosis and a swallow study to see if he was ready to take food by a bottle. Even though he seemed fussy we had to get this kid ready and out the door by 7:45am. As it is always a process getting any child out the door, Cohen just comes with some extra equipment and extra steps. We were in the car and ready to leave, having only driven about 100 feet from our driveway and his monitor began going off in the car. His oxygen was showing 85% and his heart rate was down to around 90. Both of these numbers were extremely low for him. Ryan pulled over and I jumped out of the car to reach him better in the backseat. He was spitting up again but seemed like he was choking on it. The air was pushing it down and he was trying to cough it up. His eyes were looking at me screaming, "HELP!!" We turned the car around because it was so cold and running with him down the street was not an option. We raced him, his oxygen tank, and monitor into the house but trying to act as calm as possible in front of Isla, Caroline (another little girl who comes over often, and our nanny Kelli.) They were all sitting down to their breakfast when we rushed in the door. I called my nanny over to see what she thought and her face showed me exactly how she felt. He was blue and his numbers were not looking good. I looked at Ryan and calmly said, "Call 911" as if I was asking him for a glass of water, but really my eyes were screaming at him, trying to mask my worry from Isla.
The ambulance ride was all a blur but by the time we got to the hospital he was looking a lot better. They did their usual routine of sauntering into our ER room and asking questions, checking medical history, taking vitals...etc. For some reason the moment we stepped foot into the ER, with the waxed tile floors, and plain white hallways, we felt at ease...at home. We know this is not our home, but it has practically become our second home since November and because he has spent more time here than at our actual home, we feel safe here. He has everyone watching out for him, a personal nurse to care for him, and we have time to breathe! Ryan and I joke about how we shouldn't even have to pay our mortgage at this point because we only sleep there..only if that were possible!!
He had a chest xray ordered and a blood gas to check his usual areas of concern. The blood gas came back great, showing relatively normal amounts of CO2 which has always been a big concern for him. The chest xray showed to be a bit hazy and his stomach looked very enlarged, probably due to the high flow he had been receiving. They also performed a gtube study because my thoughts were that ever since his gtube was changed out he was having desaturations at night and spit ups, though I guess it could be a coincidence. The gtube showed regular placement, of course and we were admitted back up to the PICU with our blue wristbands.
During this past stay at home, Ryan and I had vowed to not cut off our trusty, wrinkled blue wristbands out of superstition. We had done so before and each time ended up back in the hospital, so why not try something new. He has been on the PICU floor now for two days and is breathing very rapidly again, similar to how he has been coming in in the past. He is still on strictly IV fluids until they can get a better sense as to why his breathing is so fast again. I'm not a doctor, as I've said before, but lets see....the kid spit up and was choking, probably aspirated some and now his lungs need time to heal....hmmm..
It's another waiting game and I'm just hoping it won't be another three week stay and will have minimally invasive tactics necessary to get him home again. But this place is all Cohen knows as home.