Yesterday the doctors decided things looked okay to begin pedialyte through his G-tube at a slow rate of 10mL per hour. Everything went well from 10a to about 6p. The decision was made to switch to formula still at 10mL with an increase by 5mLs every 4 hours. Shortly after they increased the rate at 10p Elias was visibly uncomfortable and his stomach became very distended. A clear sign that things are not working, so they were stopped. He also had not had any stool in his diapers for several hours and as of this morning there still has not been any.
This morning we have been waiting for answers on what might be the issue and what the next step will be. Again the doctor apparently came in and out very early without talking to us, despite a very large note hanging on the end of Elias crib asking them to wake us if we are asleep. A surgical resident just informed us the plan in to take another x-ray and begin TPN. She foolishly began the conversation with, “I suppose you already spoke with the fellow…” Mom lost it and told her actually we have not and demanded both the fellow and the attending come in ASAP to explain to us why we continue to have this cloak and dagger, sneaking around mentality and then taking hours, if at all to get answers to questions they could easily answer while here. It is not like his nurse even knows either, they are not always passing info on to them. At times we have informed his nurse of the plan.
This set back is just very heart-breaking. We have been in much more serious positions with him, but we have never seen him down and out of commission for this long. Even comprehending the reasons behind this, which all make sense it is still rough to see him just lay there uncomfortably. It definitely adds to the stress level exponentially. At least he had a few hours where he felt good yesterday, that was a welcomed time with lots of smiles and fishy kisses. Last night and this morning, back to reality. This admission is now very uncertain in length and no one is going to even attempt to guess how long we will be in for with this set back. Thanks for the thoughts and prayers we truly appreciate them and everyone’s support helps to lift our spirits through this difficult time.