Surgery was cancelled at the last minute

Okay... Max's feeds were stopped at midnight, dialysis was stopped at 6:00am, he was taken to the OR at 7:50am, I said my goodbyes at 7:55am, I was called up to the OR receptionist at 8:05am to tell me that the surgery was cancelled and Max was back up in the RCNIC at 8:10am. Why you may ask? Because a GI doctor that has NEVER seen Max or his chart thought that the surgery should be cancelled because kids with kidney failure could be uremic, which causes nausea and vomiting (rather than the reflux causing it). Did anyone think to call the nephrologist to see what his input on this was... NO! That is his line of work, but instead of asking what his thoughts were they cancelled the surgery! So, when I got back upstairs and was told of why this was happening, of course I broke down in tears and voiced my opinion. His attending physician was not happy, the nephrologist was not happy, the surgeon was not happy, and of course myself and the nurses were not happy. We were told that this shouldn't have happened and were apologized to more than enough. Max's nephrologist came up to talk to Tim and I and his exact words were, "the most frustrating part about all of this is that this is my line or work! If I had the slightest indication that Max was uremic I would have said something." He went on to say that out of all of the infants/kids that have end stage renal failure, only one, that he can think of, hasn't had a g-tube nissen put in place.

We were told of the options that we had. The first being we try to see if they can fit him into the OR schedule for later this week or we go ahead and get him switched to the cycler and go home- we would have to come back to have the surgery done with this option. At this point in time we were under the impression that the surgeon didn't have any openings for 4 weeks. The surgeon came up and told us that he was trying to squeeze him in and that he would have an answer for us by the end of the day. So, after getting up at 5:30am, I was not only tired but VERY cranky, so I went home and took a nap to calm down a little bit. I got a call at 1:00pm from the surgeon himself saying that he got him in at 7:30am Friday morning. I am very thankful that everyone is doing everything in their power to get this taken care of before we go home. I know that it is no one's fault but this GI guy that had absolutely no idea what was going on, but this is SO frustrating.

On a good note, our meeting with the doctors and nurses went great Monday! Everyone made it very clear that the main goal was to get Max home, even though no one wants to let him go. So, the final decision was that he should be able to come home in
two and a half to three weeks. They will do the surgery (at the time of the meeting was on Tuesday), they will train his nurses next Tuesday and Thursday (19th and 20th) on the cycler (so that he can stay in the RCNIC), and on Thursday the 21 he will be able to be put on the machine. From that point, they should only need 7-10 days to get him fully transitioned to it. Of course all of this is pending that all goes well with the surgery.

Max has his photo shoot tomorrow afternoon at 2:00. We were looking forward to not having the feeding tube taped to his fact, but that of course is not going to happen. So, I took a few pictures for all of you to see him without any tubes on his cheeks. As his attending physician says, "He is the cutest baby we have in the unit!"