Still on the Ventilator

It looks like Elias is going to be in the ICU through the weekend at least. He is still on the ventilator and unable to be weaned. His breathing is still very much labored. The best way describe it  is to think of Darth Vader in Star Wars. The short inhalation with prolonged exhalation along with that mechanical sound. The breathing is very pronounced in his belly like he is pulling. They have his peep (pressure) set at a very high level to help maintain the positive pressure but it still is not helping much. They have taken him off the sedation medication to see if him being more awake will help any. He will still get his pain management medicine and is very much in need of them even at this point. They have put him in an appropriate size bed as well, after last nights incident. The restraints have thankfully also been removed. The plan seems to be over the next 48-72 hours allow the ICU team the opportunity to wean Elias off the vent to at least Si Pap. This will clear out any of the outside variables for the ENT team to evaluate his airway properly. At that time he will be moved to another unit depending on where we are with the vent weaning. The nurse practitioner for ENT came by to tell me that it is a strong likelihood that we will be going home on the Si Pap. A longer trach tube is not really a safe option for the depth and risk of irritation associated with this.
Also last night, at about 3:20am Elias ripped out his G-tube. Those restraints did not work and we told them that. The G-tube was already looking very bad and Elias had apparently had enough. He wiggled out of his restraints pulled out the G-tube and there was blood everywhere. Katharine was so upset and on top of everything else from yesterday it was a little overwhelming. If the damn surgical team would have acted with more haste when they were paged on multiple days, one of which they just never came, this may not have happened or been as bad. Last Friday the nurse had documented the blood on his chart, but when the Nurse practitioner was paged from surgery to look at it she said it was just granulation tissue and there was nothing that could be done. when we asked about the blood she told us G-tubes don’t bleed. So we made it all up apparently and convinced the nurse to visualize it and chart it as well. That’s us the crazy parents that make crap up and make doctors work harder because we have nothing better to do. Needless to say after that and the other experiences in the days leading to this coming out they demonstrated to us a lack of caring and ability to communicate in an effective manner. It has been a rough 24 hours, but things are clearing up. Unfortunately, the doctors have admitted that sometimes it takes the parents to speak up to encourage better communication.
They are hoping to restart Elias feeds today. We are just waiting to get a blood gas to ensure he can tolerate the feeds from a ventilation stand point. Then we will slowly build him up to his rate to ensure his stomach will handle it. Elias is handling coming off the sedation fine, but the breathing is not really improving. Depending on the blood gas, which shows carbon dioxide levels they may try and see what we can do about some weaning. Not much more than sitting a waiting over the weekend, but what is new. They will periodically try doing some things to get Elias off this ventilator, but it will not be as aggressive. Sorry the last 24 hours has brought out rants, but Elias care is paramount to us. Ensuring he gets the best he deserves is what we desire and we will do what we have to in order to ensure it happens. Thank you all for the thoughts and prayers. Especially pray over the next few days we can get Elias off this ventilator. God Bless Elias!