todays update: sounds like the stress is really getting to the family now. Not sure if Erin or Russ wrote this, couldnt really tell and i missed them online because i had a ton of errands to run today.
10:15 AM -- Russell leaves for two interviews. He doesn't return until after 4PM. Erin has to stay in the sleep room "pretty much" all day (see next time stamp).
Noon -- After Evan went down for a nap, Erin goes to see Aidan. His nurse lets her know that they had taken him off of the medicine that was keeping him paralyzed. The reasoning behind doing this was because Aidan has a pretty large air leak around his trach and they are hoping that with him breathing more on his own it will help "seal" that leak. They also lowered his sedation meds. He was doing really well this morning, and was really calm this morning. When Erin was back there his heart rate was low and he was resting.
Sometime between Noon and 4PM -- The people from the Rehab Center come in to do an initial assessment. The case manager couldn't tell Erin for sure that Aidan would be accepted into the rehab program. They said the call was up to the doctors at the rehab.
4PM -- Russell gets back from his interviews (both went well, but he is leaning toward the latter one since it has the possibility of going permanent). The nurse comes in a little later to tell us that they took Aidan off the ventilator at around 3 and that he had been doing pretty good on his own, but was having some storming episodes. Erin goes back to see him, while Russell keeps an eye on Evan. Nana, Uncle Matt, Aunt Bev, and Mamaw arrive a short time later.
5PM -- Erin comes in with dinner and lets everyone know that Aidan had been having the storming episodes. The first bolus of Ativan was given at that time.
9PM -- After trying to feed Evan baby food, getting him to take a bottle instead and finally getting him to fall asleep, Russell comes to Aidan's room to check in after hearing Erin was crying. Aidan's heart rate was well over 200 again, and his respiration was over 100! This had been going on for 2 hours (2 hours previous, his heart rate was at 180). He was posturing severely (i.e, very rigid) and red as a beet (remember, elevated heart rate = elevated temp). Nana is holding one of Aidan's hands, while everyone was wondering why the hell nothing was being done. Russell was ready to have malpractice lawyers on speed dial and just about ripped the nurse and respiratory therapist (RT) on duty a couple of new bowels until Erin proceeded to rip him one and accuse him of being more concerned with listening to the Bedlam basketball game online (Pokes lost 68-56 -- darn) than Aidan's condition (for the record, Evan was fighting sleep and Matt doesn't do well when the kiddos are crying). Aidan's nurse proceeds to get on the phone in an attempt to get Dr. B in STAT.
9:30PM -- Russell comes back in to the room after a few minutes. Dr. B is there. He explains that he feels terrible about what is happening to Aidan, and can only imagine how we feel. Russell apologizes to the nurse and the RT, and the nurse proceeds to start crying not because he hurt her feelings, but rather because she feels as helpless as we do (it doesn't help that she, too, is pregnant). The RT is even tearing up. Obviously, the past 4 hours have taken an immense toll on everyone. Dr. B assures us that Aidan is not getting any further damage from these storms. the "secondary brain damage" referred to in many of the documents we have read about this condition would only happen if he was not getting oxygen to his brain. His oxygen saturation has been at least 95% since they revived him. Dr. B increases the drug dosages again, and orders boluses of Ativan to be issued every 2 hours.
10PM -- Erin leaves to go home after Aidan calmed down.
11PM -- Russell goes to Aidan's room to keep vigil. He was having a storm when he came in, but has since calmed down. His heart rate is back down to the 120 range and his breathing is much better at 40 bpm.
Everyone who has been keeping a prayer vigil over Aidan, we ask that you concentrate your prayers on ending these sympathetic storms. We will not be able to make ANY significant progress until those are COMPLETELY GONE and he is off the ventilator. We don't care what the intake people said about it being likely that he may not be admitted ... we want to leave no doubt that he is ready to go when the time comes. We can't even begin to describe how hard it is to watch him have these storms. Imagine the worst temper tantrum a child can have and multiply it by at least 20. The sad thing is that he can't control them and we're all helpless and can only sit and watch.
We appreciate everyones continued prayers. With them and God's grace, we've gotten this far. Things usually get worse before they get better, so we're hoping and praying that this is just the worst of it.