Day one of this admission was for pre-surgery preparations. What exactly that entailed we had no idea because well no one bothered to tell us despite our questions prior to today arriving. There is some bowel cleansing that occurred this evening and will be repeated tonight at midnight through the mucus fistula of the colostomy. He was also made NPO (without food or drink) as of 10am. That would mean 24 hours prior to surgery. We are not exactly certain that this is part of the protocol because there was some back and forth between what should be done. Overall the day was a bit confusing, a touch amusing – if only to keep from crying – and a little frustrating.
Here is a timeline of what transpired today:
1000a Arrive @ hospital for admission
1045a In our hospital room after some confusion on which unit he needed to be on, we called it!
120p Elias! stops breathing - (now you know why there is an exclamation point after his name)
145p surgical resident finally come to room (sat for three hours with NO orders or directions)
440p Colorectal doctor appears in room for 2 minutes looks at colostomy and leaves
500p nurse is still trying to figure out if Elias gets pedialyte or IV fluids ( Elias last fluids @ 10a)
755p Zosyn pre-operative antibiotic begins (dose was scheduled for 530p every 6 hrs)
935p Vent settings still trying to be figured out have to go home and take photo for them! Why they would not just look up the previous orders is beyond us. More importantly why would they simply accept what the parents say as the proper settings? What is we misspoke or just got it wrong? We do not have medical degrees after all. This is pushing “Family-Centered Care” a bit over the edge.
That should be enough to give you an idea of how completely unorganized this PLANNED ADMISSION was. To be this highly unorganized when we have known for almost 4 weeks about this is beyond disappointing. Elias poor nurse today at the hospital was about to pull her hair out trying to get everything together into a comprehendible action. The bowel cleansing took 6 hours to get to and it was merely because there were no orders and the nurses on the vent unit had no clue what to do. They had to wait for a nurse from the GI unit we would have been put in had Elias not been on a vent to come us and teach them. The other very bizarre event was that some doctor from the surgical team ordered a NG feeding tube placed. This is not necessary with Elias as he has a gastrostomy aka G-tube that is perfectly functional. This was someone just not paying attention to the chart. Needless to say that order was cancelled after our nurse all but called the doctor a dumbass….spared us from having to do it instead LOL!!!!
All we know is that somehow by the grace of God we managed to keep our wits and sanity. We have been pretty calm considering the amount of additional stress this is placing on us. Sadly the communication between themselves has been contradictory much like it has been with us the past few weeks. At least we know they are consistent :) Even a simple answer like what time is the operation is apparently more than can be handled. We got three different times and one “I’ll find out and let you know” which by the way we still have no clue. The FA team thankfully looked it up for us yesterday so it is not an impossibility, you just have to take a minute. All of this is certainly not giving us a warm fuzzy feeling at the moment. I suppose that despite all of this the bottom line is the end result of the surgery and its success. This is the best team as they created this procedure so that is all we should focus on maybe. Still you’d think they’d have this down to a science with as many as they do.
While typing this update Elias has had another episode, his second today that he has stopped breathing. Not sure how this impacts tomorrow. After the first episode today they were not concerned and we do not expect that to change. The point was made that the behavior does not directly affect the surgery itself and he would be on a ventilator during procedure. There are positives as well, he is getting an MLB by ENT tomorrow and we will be contacting our pulmonologist in the morning. So his airway will be looked at via scope. We also have the ABR. We will see what happens. Definitely gives us a bit more to be concerned with while he is under as well as the post-op vent weaning. Extra thoughts and prayers will be appreciated!