Fisher-Price Rainforest Waterfall Soother Saves The Day

Yesterday turned out to be good for Elias, but it started off a little rocky. Grandma O had driven in late Saturday night for a quick one day visit. She was very excited to see her grandson. We were up bright and early and arrived at the hospital. Since there can only be two people at the bedside, I let Mom & Grandma go in first, while I sat in the waiting room. Shortly after I sat down, Grandma comes in and tells me I need to go down with Elias, there is something wrong. So I rush down there to find several of the hospital staff and Mom hovering over Elias. When Kat had walked in he was on his back and he looked very pale. She turned him on to his side and noticed his fingers had a blue tint to them. His secretions were also very thick and "milky." It was just that, breast milk. Elias should not have milk in his mouth. His feeding tube goes past his stomach into his intestines. They suctioned him and got breast milk. Uncertain as to why this happened, they called for an x-ray to check the placement of the tube. Elias was starting to regain his color and calm down a little. After the x-ray was taken, the nurse noticed more milk in his mouth and something else wasn't quite right. She saw that the end of the tube was in his mouth. They stopped the feeds, removed the feeding tube and paged Pediatric Surgery. He would have to get it replaced. The only down side was because it needs to be placed so far beyond the stomach it would have to be done in radiation under fluoroscope. We were waiting for Ped Surgery to give some orders on what they were going to do. We happened to bring in Elias' Fisher-Price Rain Forest Waterfall Peek-a-Boo Soother to stimulate him. By the way Terri, if you are reading this, a million THANK YOUS for gifting this to us. It really saved the day!! Katharine placed it on the side of the bed and started playing the music, lights & sounds. Elias was mesmerized by this. His eyes lit up and you could tell he was loving it. Michael had Grandma go back in the room. We were feeling bad that she had driven up for this one day and all this was happening. She potentially might only get to see him for a few more minutes depending on what was decided.

There was a little bit of confusion and communication issues between the teams. We are learning to expect this on the weekends, its more about managing problems and getting them to Monday than being pro-active in correcting. We are sure it is because of staffing. It was now approaching the time for Elias' morphine dose, which unfortunately is administered through his feeding tube. He is obviously starting to show signs of discomfort and his meds are wearing off. Again we turn to the Rain forest Soother after failing to calm him on our own. He calmed down almost immediately. It was amazing, and soon he was off to sleep. Each time he'd wake up we would play it again, it became his medication and kept him soothed, thank God! It ended up being almost 4 hours after his morphine was to be administered before they actually were able to give it via IV, which was also put in to give him fluids while the feeds were stopped. Ultimately, the decision was made to keep him on the fluids overnight and have the feeding tube replaced today. We are not exactly sure why things happened that way or why that decision was the best, but we were a little disappointed and will be seeking answers today. There might be a real medically sound reason, but from our perspective it doesn't make sense. Most of the issue was with Ped Surgery, Elias' normal doctor from the team was off this weekend. We know he will not be pleased with what happened. He is very protective of Elias, and we certainly appreciate his dedication. Please do not mistake this little rant as a showing of not being pleased or confident with the care he is being given. It has been outstanding and normally there are not these communication breakdowns, at least if they are, they are controlled and corrected before we notice. This was just an isolated incident, but we would still like to understand why they made that particular decision.

Overall Elias handled the day very well. He seemed content and was actually pretty interactive. Grandma O was very happy at how he pulled through and gave her a wonderful visit. Elias is certainly ready to be stimulated and his mind challenged. He is showing us that he wants to learn. That makes us very happy. He is such an amazing child and we feel so blessed to have him as our son. We certainly feel with everything said and done, looking back it was a good day. However, if it wasn't for the Fisher-Price Rain forest Waterfall Peek-a-Boo Soother, the day might have turned out different.