Well today was the day that was meant to be to finally return home. After 59 days for this admission and less than 10 days home since mid-August we welcomed it with great enthusiasm. Unfortunately, the discharge was premature by two days and with great disappointment. This morning there was another incident with a nurse. Somehow Elias had managed to get his feeding tube disconnected from the port so the feeds were pumping straight into the bed, That was not the issue. The nurse came in to give Elias a due medication around 9 am. Apparently, she noticed it and put it back into the port, administered the medicine and then just left without saying a word to Katharine who was taking advantage of Elias resting to get some of her own. Katharine got out of the parent bed shortly after to check on him and noticed visually that he was soaked with feeds. Upon further investigating she noticed that there was a puddle of feeds that Elias was laying in. Why we were upset is why did the nurse not notice or at least say something to Katharine about it. She chose to ignore or was going through the motions so much so she failed to noticed the issue. Regardless, had one of us not been there Elias would have more than likely stayed soaking wet for hours. We discussed the problem and what we should do to address it. We decided that we were not going to sit around for another two days to allow this behavior to continue so that we can get to a more convenient day for discharge. Especially since we had just had a conference with the unit manager about things just like this. The charge nurse was called and the issue explained followed by, “ I don’t care who you have call, We are going home today!” The look on the charge nurses face was stunned. She realized and ultimately agreed that while this incident was not the reason it was the final straw. There was not too much resistance, but it did stir up quite a buzz. Apparently, Monday morning things are going to hit the fan! People had to be called at home over this so I can imagine they were not very happy having their day off interrupted by this. Our reasoning was obviously so profound they were bending over backwards to make us happy. It is a shame it had to end like that, especially since anytime we have to be admitted that is the unit we have to go. Unfortunately that includes transplant :( ventilator patients are not able to be on the BMT floor. Thankfully we are no where near ready for that and hope to be off the vent when that time comes. Overall, the fact that we came home two days early does not impact Elias’ safety and there is not really any difference as we don’t have nursing anyway. So it was just status quo until they could get us out.
We are happy to be home and today was a very busy day getting the new stuff the way we need it and unloading all the new supplies. Elias is loving it too! He smiled and laughed the entire car ride home. When we arrived home Elias was so amazed and happy with looking around at everything. He has especially taken an interest in our dog, Rusty. He has been watching him all evening laughing at him. It has been a joy. Well, bedtime calls. It has been a long day. We will update more later. Thank you all for the continued prayers and support.