We got home later than we expected last night. Elias was able to calm down a little and relax after Mommy was able to hold him. He fell asleep in her arms, his heart rate decreased closer to normal and his respiratory rate also came down closer to his baseline. He did not want to be put down though, so we stayed awhile to keep him comforted. He slept through the night, which was no surprise, considering how little sleep he was able to get yesterday. He was awake yesterday morning about 6 AM and was awake until he was put under around 12:45 PM. Then he woke up about 4 PM after recovery and was awake and visibly uncomfortable until he fell asleep in Mommy's arms around 9 PM. It was a very long day and we were glad he was able to remain comfortable enough to sleep through the night. This morning he is much happier and going through a few sleep/wake cycles already.
As for yesterday, they only did the dilation which wasn't that big a surprise to us considering our conversations and interactions on Tuesday concerning the consent. I think what bothered us the most about the entire scenario was that no one seemed to know a definitive answer and (this is the best part) Elias' attending from the NICU asked after his surgery, "so they did not do anything with the G-tube I hear. Did anyone give you a reason why?" She admittedly was surprised that nothing was done. During our lengthy discussion she told me she had already paged the surgeon to inquire about this and to find out what our long term plan would be now. We missed his surgeon last night of course, he came by looking for us at shift-change ( you have to leave the room during this time period) and we had gone downstairs to get some dinner. He is supposed to contact us today. So we still have not talked to him or anyone else that can give any indication on what happened over the last five days. Apparently, there was an interesting misinterpretation of communication. I think everyone thought that when the chief of pediatric surgery, who was on duty this weekend, commented about the tube, 'enough is enough, we need to either redo this one or place another type in the existing stoma that might work better', this would be a good indication that it is time to move forward. We do not know what discussions took place though amongst the surgeons about this comment, but it was obviously misinterpreted and not followed up properly.
One thing that we have heard as a recurring theme in relation to the G-tube issues from surgery is that Elias continues to gain weight. Our speculation is that, while they are looking at the numbers and measurements for the leakage, a greater emphasis is on Elias' weight gain. The fact that he is gaining weight makes this interpretation appear as if the leakage is not that bad. We believe they are forgetting the fact that Elias is continuously fed 24/7 without rest to compensate and replace what he loses in the leakage. His breast milk is also fortified to make it 28 calories, which will also assist in the weight gain process. While the calorie intake is not directly related to the leakage as the rate of feeds, it still contributes as a factor that might be causing misinterpretation of the leakage and data pertaining to it. I brought up the lack of rest to the attending during our discussion yesterday. I asked what the medical reasoning was behind resting babies on continuous feeds. She explained that it gives the stomach an opportunity, not only for a break in work, but also time needed to reproduce enzymes and other things (she obviously did not say other things, I simply can not recall them) that are used in the stomach's process. So I posed the question, with Elias on continuous feeds without rest, to compensate for the leakage, what impact then could this have long term since he does not have the opportunity to stop and rebuild? She smiled, shook her head, and told me that was a great question that she did not have an answer to, but it did give her something to consider as they discuss and evaluate what the plan will be. Her guess is that since the absence of rest from feeds was a recommendation from the G.I. docs, this is not something that would create a future problem. However, she agreed it was also a recommendation made as a short-term solution. The bottom line here is we can not continue to cycle through the same hopeful solutions again and again. It is time to move on and try something fresh and productive. We are not 100% ready to say another surgery, but apparently there is another type of G-tube we could potentially try that would use the existing stoma, from what we understand. Whatever it is we do, we just need to create a plan rather than fly by the seat of our pants.
Finally, as if the day wasn't already filled with enough frustration to make your head explode, our case manager found us yesterday. Our medical assistance application is now on hold until Michael can get a letter from his company about his employment status and leave payments for the year. This was a necessary document needed from the beginning, but the stupid state neglected to inform us about that. OOPS! I told our case manager, " You know this really pisses me off. This is now the second thing they neglected to tell us at the beginning that we needed to process the application. It pisses me off even more that when we followed up with the first items we specifically asked is there anything else needed? The response was no, we have everything we need. It has been 8 days and I am hearing this from you and not them? This is absolutely ridiculous." Fortunately, it is a simple request that should be able to be faxed in today, but it is the principle here. We are up against a clock to get approved for this REM program and not miss an opportunity to get a model waiver spot should we get denied. This is why we are mildly upset about this tiny set back.