Late, Tired, More Tomorrow

Today has been long, frustrating and a little irritating to be honest. Elias is stable but having some difficulties with the breathing still. He remains on the ventilator on a very high pressure setting to help with the still labored breathing, but he continues to work very hard despite the assistance. The airway appears to still be very floppy and continues to collapse. Looks like the doctors that said the heart surgery would get rid of the compression, but the need for intervention would still exist are the winners here. To the doctors that thought this was THE fix and kept telling us no other plan was needed, well here is the proverbial sticking out of the tongue, with raspberries! There are so many places, people and things that caused today to be immensely stressful that I do not know where to begin. We are glad the day is over and hope tomorrow brings more cooperation and the ability to find answers to plaguing questions. The ICU doctors, on the other hand have been great! We appreciate their thinking ahead and including us in that process. It has been the outside services that are creating havoc.  You may have read the previous post and our anger over that has only added to the pressure. We just want Elias to breathe comfortably, is that too much to ask? We need to try and retire for the night, but wanted to let everyone know that Elias is doing well. He is still in a lot of pain in addition to the labored breathing and if that were not enough for the poor guy to suffer through his G-tube stoma is the worse we have ever seen, It is actively bleeding and looks absolutely painful and disgusting. The disc is not sitting correctly and the tube will not push in and we can not get general surgery to come look at it and acknowledge the problem. A wound nurse looked at it today and was very upset by the way it appeared. When Elias is awake he has this wimper cry that breaks your heart. It sounds almost like a tiny kitten under a porch meowing. He is miserable and with everything going on it makes it harder to watch him and figure out what is causing him more issues. They did try to get Elias off the ventilator, but had to put him back after a slightly scary “event” where his oxygen saturations bottomed out to 22%. It is very difficult to watch Elias this way. We have been through a lot with him and seen a lot with him, but this is the most uncomfortable we have ever seen him. Sadly the majority of it does not seem related to the operation itself. With all the changes his base lines are so different now that it makes it hard as well. On a positive note his vitals, blood work, and blood gases are looking great, just physically he continues to struggle. Thank you all for the thoughts and prayers. We will try to update more tomorrow.