Our day started off going to see Danny's neurologist. I had some anxiety going there, Not only because we were going to talk about Danny's "episodes" but also the appt was at the hospital where Danny was born. Eeeeek! I have issues just driving by there and now I had to go INSIDE. Thankfully Danny's nurse was with so she could help ease my nerves -I think I did pretty good :). It is believed that due to Danny's brain damage and where the damage is located his autonomic functions are not functioning properly and he's having dysautonomia "storms". He just can't control the adrenaline overload that happens when these storms come on. Hence why he has this fight for life actions, holds his breath, heart rate increases, sweats, extreme nystigmas with his eyes. I sent his neurologist a video of his storm (episode) and he described it as "impressive" ..... Um I guess that's not good in the medical language :(. The concern is that his heart will go into an arithmia or he'll forget to breathe, or .......... Let's not go there! Dysautonomia has no treatment and it's a progressive disorder, so wer are going to try and suppress the storms the best we can without compromising what "normal" functions he has. We are going to "try" him on a beta blocker med and see how Danny reacts to it. The only concern there is it will drop his already low B/P even lower AND it will counter act the albuterol if he should need to use it. Thankfully we don't use albuterol often and he is not on it now so we are going to give this new med a whirl and Danny will be the deciding factor if it works or not. Thankfully we are In the hospital to try it out JUST in case Danny throws us a curve ball - which leads us to the rest of the day.
The time has come..............to bring the vent on board. A step I knew was always in Dannys future ....I was just hoping to put it off for a longer time, but as always it's in the best interest of Danny. Which also ties into the dyautonomia .... His Automatic funtions are not doing what its suppose to do He just doesn't regulate well when sleeping and will tend to "pause" his breathes while sleeping. With having 3 respiratory illness just this summer and his labs going haywire now we are putting Danny on the vent. Right now it will be on only at nite and when we sleeps. I hope n pray it stays that way for a VERY VERY LONG time!
It was so weird coming into CHOW "healthy" .... We usually come to the floor via ambulance or O.R. that I didn't even know where the admitting office was - LOL. We unfortunately did not get on the floor we would have like to, but we have framiliar faces here too. It's that this floor AND this room doesn't hold the best memories for us. It's where he was back in the summer of '09 for 75 days straight. YIKES!!
In true Danny form he is being SASSY since we've been in the room and hooked up to monitors because he's been setting the alarms off left n right. Danny you are NOT sick, KNOCK it off!!! So awake, but drousy, he is on oxygen, grrrrr. I AM going home Saturday MIster and you'd better shape up. I cant wait till they put the vent on him later..... can you say alarming party in Danny's room tonight - anyone want to join us??
Tomorrow the ENT is going to put ear tubes back in Dannys ears .... Seeing we are here and he has fluid behind the right drum and with being on a vent that potentially could be very discomforting. BUT my dilemma is I am going to be gone for my MS infusion tomorrow for aprrox 3hrs ..... I've never NOT been there for him during a procedure so I hope and pray it works out that I will be here when he goes down to the O.R. Its so wonderful that the ENT can make room for him, but........... Thankfully my good friend will checking in on him while I'm gone so I can relax alil about it.
I think I'm going to HAVE to run next door to Froedert and get me some Ice Cream tonight :). Please pray for an easy transition for my Lil Man and the vent. I am geared for the worst and hoping for the best.
Where Are You Christmas?
22 hours ago