G-Tube Woes: A Spirited Update

We apologize for not getting an update up last night, but we were at the hospital much later than we had expected because of the G-Tube fiasco. This update is a bit spirited and rather lengthy. The day left us biting our tongues until we were a bit more collected, reaching a frustration level beyond imagination, & the demand for answers.

We had called up in the morning, as usual, before going up, to see how Elias' night went and to get any updates. We were told that he had spit-up 3 times overnight, about 15-20 mls each time. His G-Tube site had increased leakage again forcing the nurse to change his clothes 6 times from 11pm-7am. The Ped Surgery team usually rounds about 5am everyday so the nurse showed them and explained. It was just the resident team so they were going to send up Elias surgeon to look at it. In the meantime an abdominal x-ray was ordered with contrast dye and potentially a fluoroscope study (live contrast study watching the flow to find a leak). 930a they come up for the x-ray, but tell the nurse the wrong contrast dye was given so they could not push that through. They decided to continue with just the x-ray hoping to see something with positioning. When we arrived at the hospital shortly after 2pm the nurse told us that Elias' surgeon came while she was at lunch and told the nurse covering that the leakage was still not cause for concern, it looked fine. To defend his Surgeon a little here he was basing his decisions based on what he was seeing and partial information, so he is not the bad guy here. We trust him explicitly with Elias and we know he would do what is best. We didn't like what we heard and when we heard that Elias had also lost almost 200 grams in one day we wanted an explanation on if they thought it was due to the leakage or if he possibly sick. The resident was called, but was on a delivery so we had to wait a few minutes for him to return. We noticed that Elias was lethargic, slightly paler than normal, and the soft spots on his head were a little sunken, along with his eyes not being quite as bright. A classic sign of dehydration. We were talking with the nurse about his activity level prior to us getting there and she said he had been a little active, but not nearly as active as the day before. When we spoke to the resident about our concerns he addressed a few things with us and told us that he would contact Elias' surgeon to make sure he knew that Elias had been losing weight since the surgery (we was roughly 6 lbs 5 oz July 15, he roughly 5 lbs 5 oz as of yesterday) and to come and speak with us. We also explained our concerns about the way Elias looked. It was very reminiscent of the day prior to his surgery. He just seemed off to us and he had been spitting up an unusual amount, he ended up having pneumonia and nearly died because of the surgery . We were not willing to stand by and let him get sick again, even if our concern was unfounded having gone through this before warranted looking into. They agreed that he had not had any blood labs recently so it could show something, but Elias seemed fine clinically and it was possible the G-Tube issue was causing the problems. So it was agreed to resolve that first and depending on the findings proceed as necessary to see if Elias was getting sick or an infection.

The nurse practitioner (NP) for the Peds Surgery team came up ahead of Dr. Stuart to check it out again. We explained that we had a difficult time understanding how having to change a baby's clothes 9 times (overnight and up to that point) was "normal leakage." As she uncovered Elias to examine him she saw his clothes soaked with breast milk again. She looked at the sight and it started to gush out not quite as bad as we had seen it before, but enough to make her WOW. We explained that this volume had been going on for more than a week, but every time a doctor would look at it it was closer to what you would expect. At the same time it was time for Elias' antibiotics which is administered through the G-Tube. It is bright pink and very quickly we saw it running down Elias stomach. The NP went to make a call and returned to tell us they wanted to do a dye study in fluoroscopy. OK great we were told they were going to do this earlier this morning, so what happened. Apparently a doctor decided to hold off on the fluoroscope for now. It was 330p on a Friday afternoon, I looked at her and said when are we doing this study. She told us they wanted it today. So now they are scrambling to get Elias ready for transport off the unit and we still do not understand what is going on. In the mean time they switched him from breast milk to Pedialyte. Finally at 430p we see an x-ray tech wheeling in his machine and the doctors come in and tell us that the doctors in fluoroscopy had left for the day so they would have to do a contrast x-ray here. We were beyond angry at this point. I decided it best to keep my mouth shut until I was much more calm. First of all this contrast x-ray they were about to do was the same damn thing they were suppose to have done at 930am, but someone screwed it up. Secondly, it is not as reliable as the fluoroscope which is a live view. So again we were faced with having to make due because it was approaching the weekend. I wanted answers as to why it took us coming in and not accepting what we heard to get the ball rolling and finally getting the result we wanted!!

We talked with the head of the NICU and explained our frustrations, not with them, but with the Ped surgery communication. We had spoken with him before about this and he was very upset himself and agreed that they needed to fix the system. He was also talking and asking questions with out nurse at the same time and explained how we were frustrated because we had been pushing this for over a week and felt pushed off. She made the comment that she felt the same, as well as feeling ignored herself with her requests. Apparently, one of the nurse management team came in at that point and heard her say this. It appears she may have been reprimanded for saying that in front of us. We find that a little absurd. We understand that you have to maintain a level of professionalism in front of the parents, but she was only accentuating that the parents were not the only ones not being listened to. She had been doing what any parent would hope a nurse would do when they were not present...fight for the patient's advocacy if they felt strongly one way or another. That is why we can go home everyday and not feel as though we have to live by the bedside. On more than one occasion has the nursing staff helped us out with scenarios like this.

Now when the study results return they feel like they have an answer. There is a silicon balloon that is filled with saline or water. This provides pressure to hold and help seal the site. Particularly while the skin around heals and tightens. It looked as though the balloon was slightly over-filled and because of Elias being so tiny repositioned to a point it was blocking anything from getting into his stomach or very little. Think of a slow water drain. It goes down, but if you add water constantly the sink fills faster that it can drain. We found this diagnosis amusing since last weekend it was, "OH it's leaking, we need to fill the balloon." Now it is , "OH, it's leaking, we need to deflate the balloon." Again, the weekend and not the normal doctor UGH!! So they did the procedure and decided to keep him on the pedialyte at 10 mls per hour.

They went ahead and did blood labs for potential infection and did find elevated numbers pointing to some sort of infection as well as dehydration. They have drawn cultures of blood and urine and started 2 different antibiotics. Here is where it gets interesting, like it wasn't already. Since he is dehydrated IV fluids need to be given. We all know how difficult it is to start an IV on Elias, but more important the fact that he does not keep them very long. It took them 3 hours to get the blood needed for cultures and start an IV. Overnight he went through several IV sites. This morning when they lost the access they were unable to get one. So they are resting him on trying for a little bit. The problem and major concern is the antibiotics have to be give through an IV. So now he is not getting them until they can gain access. They also had to restart his breast milk earlier than they wanted and at full feed volume to get fluids in him. So they are hoping and watching the G-Tube sight close. When they try again in a few hours to get IV access and fail then some sort of line will have to be done by surgery. They really want to avoid this if you remember back to the days following his surgery. There is a greater risk of infection, another one, but this time they will have no choice.

To close this lengthy update we want to say that in spite of our frustrations, Elias is getting the best care he could possibly have. There is no doubt about it. We just want answers when we ask and action when we request it. We feel as though we have proven ourselves not to be those parents that jump every time Elias moves or sounds funny. We educate ourselves as much as possible so we know and understand what is happening. Again this frustration is born out of logic and emotion not mixing and not the competency of the medical teams. It is drawn out by not being able to pick our baby up to comfort him or do anything other than watch and wait. We did not go into this to be spectators regardless of the extra commitment in regards to caring for him. We are extremely active and will not idly sit by if we do not agree. The amount of time we have been in the NICU also adds to the frustration. The longer you are there, the more you learn and the more you see. Nothing is flawless and mistakes happen, but you do need to work on reducing the number of times they are exposed. I suppose it is fortunate that our frustrations and flaws are with communication rather than execution based. That is our "glass is half full" outlook on this scenario.