The doctors began a 20 hour compressed feeding schedule at 30 ml per hour on Thursday. The hope here was to give Elias 4 hours rest off the feeding pump to be disconnected for Dr. appointments, therapies, playtime, etc. Starting on Thursday we noticed our weekly significant G-tube leakage, which usually presents itself on Fridays. The last 2 days have been more like the leakage of the past with 21 ml on Friday and 28 ml Saturday. Remember before they changed the type of tube, it was 24.5 ml per day on average. We are watching this through the weekend to get a 4 day average. We know there is a positional problem, it sits too close to the pylorus. However, we are thinking that the volume per hour is also contributing. When he was on continuous feeds at 24 ml per hour there did not seem to be as much if any leakage after the tube change. This may be the time that proves the positional issue will prevent us from going to compressed and bolus feeds no matter what type of tube is in. The only other thought we have is that maybe on this compression volume, Elias' stomach would expand and be able to accept the feeds without leakage, decreasing over time. The question is, will that truly happen and if so how long could that take? They already tell us Elias' stomach has grown, yet we still have this issue. This signifies to us that stomach size may not matter and that it is truly a positional issue. The fact that we found medication in part of the last few days leakage is probably the most concerning, especially on the verge of being discharged. So based on this development we still have the dilemma of what do we do? Demanding they redo the surgery will postpone Elias coming home by another week or two. On the other hand we do not necessarily want to be battling leakage and the host of issues it can contribute to in the home environment. We believe that they will just put him back to continuous feeds again and discharge him. This means Elias will always be bogged down by being connected, even when traveling to doctor appointments. Even if we do end up in that scenario, what then? are we going to keep him on continuous feeds indefinitely? Will the situation get better over time or will the next time we attempt this we still have the same problem. It is almost as if all the signs point towards redoing the G-tube as the ultimate answer, but when would it be safe to do so?
In other news...Elias this morning is still breathing better, but still with some difficulty. He has been getting extra doses of albuterol from time to time. He seems to be holding steady to yesterday and not showing as much improvement over 24 hours as he has the last several days. He is right at the end, but is having a hard time shaking this last bit. He is still happy, cheerful, and willing to play he just tires out quicker and has a more difficult time going to sleep mainly due to his breathing.
One of the nurses yesterday said she had overheard October 14 as the target discharge. This makes sense and confirms what we already figured, although we have not been officially put into the loop with that date, so it remains to be seen. Elias also did his car seat evaluation yesterday. He had to be seated in his car seat for more than an hour demonstrating no desaturation of his oxygen levels. While he passed the standards they do want to repeat the test a few times because Elias needed suction from his nose and mouth during that time, but not his trach. They are not sure if the secretions were increasing because of his viral infection or if it was sitting in the seat. They just want to be sure, for our benefit that he can tolerate it, because the car would be a horrible place for an emergency. He was also very fussy about being in it, but that could have been exasperated by his increased secretions. Well, another day down and hopefully only a few more to go. At least we can relish in the fact that there are more days behind us (158 of them!!) than there are in front of us!