The last several days have been more than frustrating for us and even more so for Elias. We have experienced mishaps, miscommunication, no communication, contradicting information, poor judgment and above all complete disorganization. I will not go into detail about all of these things mainly to keep from being infuriated further, but there are a few that bear mentioning to understand how and why things transpired they way they have. It is so bad that the doctors are calling a family meeting to help dig themselves out of this hole in which they put themselves.
In order to get the full picture we will need to back track a week to last Tuesday, when the PH probe study began. At this point Elias had been off his anti-reflux medication, prevacid for 7 days to prepare for the study. The study ended around 2 pm on Wednesday afternoon. They continued the home regiment of 3 hours fed, 1 hour rest post study gastric feeding. The results were analyzed by the nurse practitioner that told us they were interesting, but that was all she could say. They knew at this point, around 4 pm that he had significant reflux, but continued to leave everything unchanged. When we talked with the surgeon on Thursday late afternoon we thought it had been communicated to everyone what the results were, but they were not. We also asked about his prevacid resuming and it was Friday morning before he got any. So he went 72 hours on Gastric feeding without reflux medication…oops, I’m sorry! It takes about 72 hours to start to take effect so Elias was miserable and they were still feeding him gastric. I remember somewhere along the way throughout this whole journey something about continuous feeds help reduce the acid and helps obviously with controlling reflux. When you are not pumping food into the stomach, that is when acid is produced. No breaks minimizes the amount produced. I had to beg them to change from his regiment to continuous and defend my reasoning, but they did ultimately make the change. On Sunday the attending on service was impressed with our advocating and apologized that it had not been done sooner. We have since learned that he is the head of pediatric medicine and working on “some issues.” Apparently, at the time the feeds were changed the nutritionist on the unit who despises Elias feeding schedule and calorie levels advised that his calories be reduced from 30 to 24. We are still working to resolve this issue, but the principle is two fold. One, we were not informed of this change, we simply found out by accident from observing (that is why we are having to be here around the clock) and questioning. Secondly, he has a GI doctor that placed him on this regiment and calorie count for a reason, do not under mind without a excellent reason and a consult from the specialist, I think there is a reason they are called that. Finally is the question on everyone’s mind, why are we waiting three weeks for the Nissen? All we really want is to ensure that the entire team is onboard with this plan of sending home to bring him back for the surgery, particularly pulmonary. However, no one knew for 36 hours after the study ended what the results were and the Pulmonologist team found out on Monday, 6 days later. The strange part is none of them want to answer the question directly with any confidence. The absolute blunder of all blunders was the placement of the G/J tube, why does it always have to be about that tube! Katharine gets a phone call on her cell phone from a doctor from the Interventional Radiology department explaining that Elias would be having his surgery done at 11 am. We told the PICU doctors about the call, but when they called back to confirm a few details, only hours later, no one knew what was going on or anything about Elias. Long story short it took all night to sort out, ending with Elias not going down and having to wait until Tuesday to get it placed.
With that said Elias has the G/J tube and being fed jejunal. He has a drain bag for stomach acid that is filling at an amazing rate. This will only be in until the Nissen Surgery.
Update since I have been writing this update things have changed a little. There is a possibility that Elias will get the nissen surgery on Wednesday February 4th, due to an OR spot opening. We will not know for sure until Monday if we will be doing it then. Tomorrow they will do a modified Barium swallow test. This will identify prep for moving to oral feeds as well as another look at secretion management and aspiration potential. With that happening it looks like Elias would go home at the earliest on Monday, if the Nissen surgery remains mid-February. If we do the Nissen next Wednesday then we would be looking at discharging from the hospital around the 11th of February, which would be 2 more weeks. We will keep you posted on this very rapidly changing scenario.