Why Will They Not Listen?

We are obviously not the experts medically, but medicine is primarily science, and science is very logically based. We are very logic minded individuals. This is apparently where we go wrong. We hear all the time that we as parents know our children better than anyone, so why is it when we voice a concern with medical basis we are so often thought of as the over reactive parents? There is no possible way we could have any idea what we are talking about. After all we haven't slaved through endless years of schooling, hierarchy, low pay & long hours, and amounted huge debt to achieve that title or privilege . Sometimes we believe that is what some medical professionals think. We have proven ourselves not to be those parents that jump every time he coughs or makes a funny sound. We have shown that we understand his base line and can tell when he is "off." We have been praised repeatedly about our enthusiasm, eagerness to learn, and ability to perform, telling us how (sadly) we are the exception in terms of involvement. Yet, we still are not listened too when we have a concern with something clinical. The reason for this ranting leading us here is because again for the last week and a half, we have been repeatedly voicing concerns about Elias' labored breathing. Things are not quite right. He breathes really hard and shows signs of struggling. At times we have heard him wheezing and the secretions in his mouth are becoming much more prevalent. We learned about four days after we first brought up the issues the flowvent breathing medication had been discontinued. We asked if that might be a contributing factor to our concerns, but were told no. It has continued and actually become worse. We were under the impression that was a medication he would go home on, as a long term treatment to help prevent inflammation in the airway. We asked one of Elias' trusted respiratory therapist about the decision to discontinue administering the flowvent. She did not give us a direct answer, but you could tell she was not pleased with that decision. This did not set well with us and as we watched Elias continue to worsen, and over the weekend we decided to again voice our opinion and question why he would be struggling. The nurses, could hear the wheezing, we could hear it, but the doctors never seemed to be able too. We pause here because the next item brings us back to this point causing wonderful confusion. The surgical team has been pushing for 8 weeks for a try at oral feeds, just to see how things go. Sunday the occupational therapist came in and decided she had enough free time to give it a go. Elias was not too interested, and only took a tiny tiny amount. However, it was enjoyable to watch Elias try this for the first time. Yesterday, the speech therapist came in to repeat the study, this time with a  blue dye to check for aspirations (liquid going into the airway). Elias only took 1 ml and blue dye was seen in his trach confirming aspirations. However, the therapist noticed something that caused her to consider that he may be doing this with the secretions in his mouth on a more regular basis than we would want. She also noticed a foul odor from the trach tube, which is not a good thing and potential sign for infections, and brought that to the doctors attention. She too noticed a difference in his breathing from her last visit a week ago.  A culture was taken last night and we will wait until tomorrow for results. With the micro-aspirations being an issue they decided to restart the flowvent. So the doctors are saying it is because of the aspirations, not the difficulty breathing that the flowvent is being restarted. This morning his breathing was even worse and becoming more difficult to soothe due to positional induced difficulties. In other words when Elias would sit, lay, or be held certain ways his struggles were magnified. The secretions we were suctioning out of his tube last night and this morning were extremely thick and almost constant. Since Elias, yet again had a nurse (this has been going on for almost 2 weeks) that had never had him before, she did not know what to compare it to. She called in respiratory and the therapist did not like the situation. You could feel the secretions his lungs by simply placing your hand on his back. She immediately talked to the attending and god love her got action going. An x-ray was taken, but nothing showed up as abnormal. So pulmonology was consulted. Based on the information they got from the doctors, we now have a family meeting tomorrow afternoon to discuss this problem. They are concerned that he might have an upper respiratory infection. Great...so we had to let it get so bad clinically before we acted instead of listening to us almost two weeks ago, when we could have potentially prevented this. It is not certain he has that infection, test will tell. However, if that is not what is causing him to struggle breathing, then what is? The other concern we are feeling is that they do not seem to be overly concerned about this in term of the timeline. We are curious to hear how discharge rounds go today to see if this is brought up as a potential set back, or if they plan to push ahead. Yes we want to go home, but we do not want to come right back to the hospital. We would rather everything be stable and certain than take a chance. It is difficult to put in words to describe how labored his breathing is, but he can not go home like this. Coming from parents that have spent literally five months to the day in the NICU, this should be considered a concern. We could not even hold him today it was so difficult for him. That doesn't sound like a scenario to go home with. Everything has had a way of working out for all the right reasons during this time. We are just starting to wonder if this isn't a sign telling us to slow down a bit with going home. We will keep you updated on changes and news regarding all of this.