Thursday’s Developments

Thursday is “sit down rounds” day on our unit. This is when the team meets in a conference room without parent involvement. So we got little information. We will say that things are moving very fast, one of the advantages of being admitted by Dr. Wood rather than the ER! Elias has been on the EEG for about 30+ hours now and it seems they will leave him on until at least tomorrow afternoon. Tonight he is having a sleep study in the sleep lab on top of the continued EEG. So Elias has more  wires attached to him than he has open skin for. They were literally seeking a spot out to place the final lead for the study. Poor Elias! Katharine commented that when you look at him with the Red wrap on his white “hat” and the taped leads on his cheeks it looks like he is wearing one of those Trojan helmets. He is so exhausted and frankly tired of people messing with him. Again the hopes is to capture one of these evasive episodes while on these studies. As Katharine said, how ironic is it to pray for your child to stop breathing so this can be figured out. 

They attempted to place an impedance probe but failed, miserably. This is a thin wire that is inserted through the nose and down the esophagus, much like a NG or NJ feeding tube. The could not get it down the esophagus. They did try this at the bed side and Elias was 50 ways to pissed off that even I have never seen before. It was insane how mad he was. Not that I blame him, but wow that kid has some spunk! It took 3 of us to hold down this 17 lbs child. Elias is STRONG! The GI doctors that were placing the tube decided to stop because Elias was beginning to clamp down, which means shut his airway down. Maybe next time he is under anesthesia it will be tried again. We actually had several people ask why are they doing this? Well reflux is another theory behind these spells in addition to the Central neuro  thoughts. In theory with a Nissen and being on reflux meds this should not be occurring, but as Dr. Wood says, rule #1, never trust a child regardless of measures in place. Children will find ways to do things when you block their efforts. This probe would rule out reflux. Why exactly reflux would cause this other than aspiration is still a little foggy, but Dr. Wood knows a thing or two so we will trust that. If Elias does not have an episode tonight that defines this as neurological then we are going to ask if we can consider a stronger dose or even different medication for “reflux management” at least until the probe can be done.

The real question is going to be what is going to happen if nothing happens tonight? We also are up against a bit of a dilemma. Monday, Elias has to get his synagis vaccine. This is the last day it can be done as it is a timed shot. We had to rearrange everything to make it possible to get the vaccine delivered to his pediatrician’s office versus getting it at home so the pediatrician could even see him, long story but insurance is involved. Since the vaccine has been delivered and confirmed there already the insurance will not approve the hospital to administer this. So we either have to be out or given a “pass.”  We really do not want to be there over the weekend. If Elias has not had an episode it will have been nearly 48 hours since the final. It could be another 10 days before we see it, if ever again. Tomorrow should be interesting to hear the thought process. We will keep you update as we can. Thank you all for the continued thoughts and prayers. Sometimes we wonder how we manage to get through all this. We truly appreciate everyone! Maybe if we all hold our breathe together at the same time…..nah that be too easy!