Another Day...Another Frustration

It seems as though the last eight days or so have been plagued by new worries and concerns. It has ranged from Elias spitting up to the G-Tube to elevated CBC numbers signaling potential infection. It has been very frustrating because there are no straight answers. Maybe it is partially us becoming a little impatient, but it seems like there is something on a daily basis now that tries our patients to the point of disbelief. I think it is really frustrating to hear the "every baby does that" and "every baby is different" phrase over and over. So which is it, are they the same or are they different? Going forward I will be pointing out this oxymoron everytime I hear it.(**ding ding**)

So far today Elias has not spit up after his feeds. He hasn't since last night just before 7pm. That is wonderful! The only problem is it seems very odd that he only seems to spit-up when we are there. It is rare that we get a report over the phone that he has. If he does it when we are not there it usually just before we get to the hospital. I'm not suggesting anything here, but it does seem rather odd. Are we causing Elias to get sick after his feeds? I think not, we are not doing anything. Everytime we bring it up we are told that, "babies just do that." (**ding ding**)
We are so much concerned that he is just spitting up it is more about the reflux issues all TEF babies have. We were told it varies from baby to baby (**ding ding**)
The problem with reflux is it can be more problematic than just regurgitating feeds. Especially because of the trach there is a greater risk for aspiration which causes pneumonia among other things. Secondly it can cause the stricture in the esophagus to tighten again at a more aggressive rate. We are hoping now that his dilations are getting to be longer lasting this is not a concern anymore, but we have not received that answer yet. So until I hear that we do not have to be concerned with it as much, it makes sense to act as though it is a problem. We are being proactive here not reactive. No one will give a straight answer when we ask what would we expect to see if this were reflux rather than him just being a baby and spitting-up a lot. We are told things like "Oh well, it would be more projectile." They have never witnessed him spitting up we have to go get the nurse and say he did it again. They are not even logging it on the flow sheets anymore...they use to? Why is it now that he is on the compressed feeds its ok to spit-up but he never did it before unless he was sick or his OJ tube had migrated up out of the jejunum....hmmmmm, reflux from the stomach maybe? I mean this is not rocket science here, it could be completely false, but putting two and two together leads you to that logical observation. Seeing how no one can present any evidence to disprove my theory also seems strange. that is my rant on the spitting up issue.

On to the G-tube...so it leaked again considerably after Elias had a bath. The Nurse Practitioner came and looked at it. Then there was some discussion about how much water was in the balloon (oh no here we go again.....wait for it.....wait for it....)
They discovered that only one and a half CC was in the balloon, there is usually five CC's. So the NP decides to put three CC's in the balloon. If you recall a few weekends ago we went through this whole fill the balloon because it is leaking thing and then ultimately it turned into deflate the balloon because it is leaking. It is like history repeating itself. Two things that drive us batty about this is first of all that information is in his chart? Why was this not looked at prior to the action. Secondly, we are told that in terms of the leakage every baby is different (**ding ding**) but some leakage is expected, but when we questioned this decision (based on the last time) we were told that is what they do with every baby that has leakage (**ding ding**). Well obviously Elias is the exception because the did actually deflate the balloon. While we talked to the resident they were flipping through the chart and saw this. They had no response except for oh you are right. Then to top it all off the resident for the NICU (they just rotated again) had the nerve to tell Katharine on the phone that the people who know him best are at his bedside and say he is having a good day. Katharine told her, "No the people that know him best are not there right now!"

This update has turned into more of a rant, and I apologize. Inconsistency, is my pet peeve. Hopefully we will have a better update tomorrow.