the bad news keep on coming - June 19/20

June 19

It's so hard to watch your little baby be hooked up to 40+wires with gauze wrapped around his whole head for a 24hr Video EEG. He's not showing signs of seizures but they have to make sure. He does not like this test at all.

June 20

It's early in the morning. No official results yet but at first glance the nurse practitioner for the neurologist couldn’t see any seizure activity on the 24hr video EEG. Last night he was all stressed out and so exhausted, his numbers were all over the place even while awake. They bumped him up to 6LPM and 40%O2. I hope they just let him rest today so he has a chance of stabilizing himself. The Respiratory Therapist already told me a few days ago that CPAP would be the next step if he doesn’t stabilize his episodes. All these tests are sure not helping and they seem like torture for his little body.

And the bad news keep on coming... We talked to doctor over the phone this afternoon. The EEG did not show any seizure activity and after the process of elimination, it looks like his brain injury is causing coordination issues for his ability to breathe. Wyatt has been having more episodes over the last three days and he keeps dropping lower and is needing more stimulation to come back up. The 6LPM and 40%O2 that they put him on last night didn’t seem to make a difference. Since the 6liters of pressure didn’t work, the doctor doesn’t think CPAP would work either. As a last attempt, he is trying him on 1LPM at 100%O2 today to see if 100% will give him enough O2 reserve when he does have these episodes. If that does not work, he'll have to go back on the ventilator. The doctor’s concern is that if he goes back on the vent, there is no guarantee how long he'll be on it or if he'll ever come back off. There are no guarantees for anything. No one will be able to tell us whether his brain can somehow figure out an alternative route and if so when that will be. The doctor is basically putting the decision in our hands how we want to proceed if he has to be back on the vent. We either need to look at a long-term care facility so he could be on a regular ventilator or Wyatt would need a tracheotomy to do ventilator care at home. How can you possibly make such a decision? Of course we want him home but he'll need 24/7 care and we can’t possibly do that by ourselves with three other kids. I’ve come to accept that I won’t be going back to work but everyone else has to. That’ll leave me as the primary person being home with all the kids. How am I supposed to take care of Wyatt then? How are we supposed to afford all the medical equipment needed and the home health care nursing? Having him in a long term care facility provides the problem of how far of a drive will it be, how often can we really see him, and the simple fact that someone else is taking care of him instead of us. Wyatt needs to be around his family just from a psychological standpoint alone… Nothing makes sense anymore. We keep waiting for a day that we get good news. But instead he’s heading in the wrong direction. I don’t even know what to feel anymore. The thought has even crossed my mind of whether we’re still acting in Wyatt’s best interest instead of our own.