Not Sure What's Going On...(with Elias or coming home)

Mr. Elias has been spitting up after his feedings the last few days. At first the nurse was thinking it was from the sedation, but it keeps happening & this is the third time Elias has had this exact surgery and he has never responded like that. It also happened the day prior to surgery, on Wednesday after his 6pm feed, but it was the only time that day. So that tells us it is for another reason. They have been working him up to bolus feeds and got him there on Wednesday. We wondered if it was too much too fast, so they continued the bolus, but through a pump at one hour. 10 minutes after it was done he was spitting up again. He did have a temperature of 100.9 the morning of surgery, but it came back down to 97.9 before noon. They ran a CBC test and found his numbers to be slightly elevated. Another CBC yesterday morning showed a little more increase, but it is hard to tell if it is from infection or post-surgery recovery. They decided to draw a blood culture, which they failed getting twice already. This morning they are doing another CBC to see how the numbers are. If they are still elevated then they will try to draw a culture again. We do think he his sick again, Katharine thinks it might be a sinus or upper respiratory infection because the spit up is so mucusy. Unfortunately for now that is all we know at this point. We will certainly keep you updated as we learn more.

Otherwise, Elias was restful and you could tell he wasn't feeling the greatest. We both held him throughout the day yesterday with him often falling asleep in our arms. Mom got to change his trach tube yesterday and she did great! It certainly appears word has spread about our feelings on Elias going to the transitional hospital. One of the nurses, who has had Elias many times, came in to "visit" with us. She openly admitted to us that she was asked to talk to us about our feelings on the hospital, but she would not divulge who. She actually use to work there, but unfortunately it was 12 years ago. A lot can change and she agreed. It saddened her to hear about our experience and she really didn't know what to say. She did the best thing, she was honest with us and told us what she truly thought and gave excellent reasons to back up her opinions. She agreed with us on many points as well. She explained how the specific education process works there and told us that the equipment can sometimes hold you up. The vendors for the equipment are the ones who train the family to use it. They come out to do this, but sometimes they can be slightly unreliable. We felt it was a very constructive conversation with one of the nurses that we keep their opinions in high regard. We felt of everyone we have talked with about this situation, she has been the most informative and with good reason. It has not changed our minds, but understanding that it will likely be where we end up, made us feel better about certain aspects. We are just hoping to give the medical team valid reason and arguments to take to the insurance company in hopes to influence the decision. It is wonderful that the medical team is willing to take the time and energy to listen and consider this, but it is the insurance company that will ultimately decide our path. Things are progressing, but reality is starting to kick in that we are not as close to home as we would like to think. It is heartbreaking and overwhelming at the same time. We are refocusing and will just have to continue pushing down this seemingly never ending path.