Better Day For Elias

Elias seems to have turned the corner in terms of his withdrawal. He had some periods of long rest yesterday. We are beginning to hear him cry around the leak in his tube. I bet you've never heard any parents say a baby's cry is music to our ears. Admittidly we were stunned and concerned the first time we heard it, and the nurses were too so that made it more concerning. One thing we have all forgotten is that Elias is much smaller than they normally like to trach, therefore they used the smallest tube possible rather than slowly weening down. So the leak is natural and earlier than you find in most trached babies. He will be able to make sounds, but not really talk. His cry was loud, but still softer than we think he is capable, and very sustained. When we left him last night he was sleeping very soundly.

They had replaced his OG tube with an NG (nose) tube early yesterday morning, but that came out around 2:30pm. Surgery said they would be in around 8 pm to replace again. The nurse was waiting to do his cares in conjunction with Ped Surgery's visit so he could get less disturbance. When they had not come up she paged them to inquire a time for the procedure. They informed her they would not be doing it until the next day. What!!! Michael was a little upset at this point and asked to speak to the resident of the NICU. His G-tube had been leaking more than normal again and we were waiting until they came up to show them. They had to refill the balloon twice the night before, this is not normal. When the resident came in I explained how I wanted to go through the proper channels to express our discontent about them not replacing the NG tube. Note this was a Sunday and the last time Ped Surgery dropped the ball was when Elias' feeding tube came out the first weekend he was in isolation, another Sunday!! I explained how I understood that this was not a feeding tube anymore, but Dr. Stuart made it very clear after the surgery he needed that to keep his access open to the esophagus. He told the nurse to tape it well and guard it with your life. Apparently, this doctor, who has taken wonderful care of Elias, felt it necessary to leave this in for good reason. The resident told me he would contact them and request a reason, as well as let them know about the G-Tube. When he returned he told us that the chief surgeon gave the order to hold off NG replacement in Elias because he had replaced it himself and it was difficult. This is quite the contrary from what we were told about the procedure. We were told it went in easily...hmmmm, it's Sunday, I'm thinking repeat here. I told the resident for the record I was not pleased with this decision and hoped there would be no complications due to the length of wait time. He told us they assured him it would not close up. Again experience tells us otherwise...DOESN'T ANYONE READ HIS FREAKING CHART!! As for the G-tube again we were not pleased with the recommendation. They said to stop his feeds and begin IV fluids and they would review it during rounds in the morning. WHAT!!! Even Elias nurse objected strongly to this recommendation. Elias is not the easiest to stick for IVs and they generally do not last even when you get one in. So this was certainly not a good option and for what? Again to wait until the morning rounds to address the situation. Our point was we have been pointing it out and saying hey this doesn't seem right for a week now. They finally came up and re-inflated the balloon on Saturday night (twice in 8 hours) but now it warrants completely stopping his feeds, without even coming to look at it? This will certainly be brought up at the Family Meeting on Thursday. It is too the point I dread the weekends because that is when we seem to have the most issue. Sorry for the rant again, but common sense is not lining up with medical practice right now.