Update from last night, again THANK YOU for your prayers!
Where to start for today...let's start with the positives....first of all Dr. came in this morning and clamped the drain in Joey's brain to see what his pressures would do and they did great all day! Pressures are staying well below the "danger" zone and we are planning on pulling that drain possibly tomorrow but more likely Wed. His arterial line was never replaced yesterday so we are once less tube. Tube in his lung was removed today and lung status has remained stable on breathing machine. He still isn't breathing on his own, at all, but we are looking forward to addressing that in the next few days. He was a little more swollen today so he was given a medicine in his IV to make him pee more and that seems to be helping. His urine is clear which is a sign his bladder is continuing to heal. Dressings to both of his legs were changed again today and all looked good and continues to heal. Long way to go especially on his right thigh and right hand but still slow improvement. His blood counts remained stable except for his sodium level which the nurse was addressing when I left and they will probably just change his IV fluid to compensate for this deviation. Not terribly concerned about this as it should be a relatively easy fix. Also good new is that he pooped 3 times today and I'm sure he is going to go some more tonight. Yes, he will love this post especially when he sees that I am now going to tell you he is a "sharting" machine, lol. (meaning wet farts
...if he doesn't wake up on his own my posts will make him wake up because he's gonna have to come kill me!!!
Now, on to more important things such as breathing machine and sedation vacations....we did one sedation vacation today at 3:35 but we did it a little different this time....we turned the sedation off but left the pain medicine on. Not much happened for over an hour so the nurse decreased the pain medicine by 1/4. After some time Joey did seem to arose a little bit. He opened his eyes, began to move his mouth some as if to try and talk to us and moved his right hand some. Vitals and brain pressure all stayed stable during this time, first time EVER!! The not so great news was that he wouldn't follow any commands...the good news was that he lasted 2 hours and 35 minutes with zero sedation and 1/4 of the pain med before his heart rate sustained at a high level and we had to turn the meds back on. This is almost double the time he has lasted on every other sedation vacation!! However, we would really like to get him off of the sedation and pain drip and get him off of the breathing machine. In order to do this tho we have to know he can follow commands. We need to know he can cough on demand etc...Why is this important you may ask...well we need to know he can cough on demand to clear mucous. This is important for us to ensure he has a safe airway-meaning we don't want to re-tube him once we remove it. So, how do we accomplish this...well, this is part of the news we really didn't want to hear either....in a perfect world...Joey would tolerate no sedation with pain medicine every hour or so in his IV and be able to breathe on his own and we would be able to pull that breathing tube...we aren't there yet, so, plan at the moment unless they change their minds tomorrow will be to in the next 24-48 hours to put a tracheostomy tube in his neck and remove the breathing tube from his mouth. (A tracheostomy is a tube that goes thru the front of your neck and into your windpipe which we can hook up to the breathing machine etc..we'd be able to plug it and see how he breaths later and reopen it if he can't breathe on his own) The hopes for this is that it would be temporary until he is able to come safely off sedation and be able to breath on his own. This would help us ensure we have a safe airway when we do try and wean him off of the breathing machine whereas the tube in his throat doesn't give us that "safety". In addition to a tracheostomy we would need to get rid of the feeding tube going down his mouth and into his stomach and put a long term (hopefully not permanent) tube in his belly that goes into his stomach called a feeding tube. We would be able to give him nutrition thru this and get all the tubes out of his mouth.
For my nurse and doctor friends reading this....Joey did have 2 episodes of what appears to be definitive for decorticate posturing during his sedation vacation. I was especially disheartened to see this as it is a sign of brain damage...doesn't mean it's permanent damage but it's a definite sign that we will have a LONG road ahead of us. We have been seeing signs of this before but we weren't sure if it was posturing or not but the more time I spent with him tonight I am positive it was as well as the nurse. I told everyone before I will not sugar coat things, just as the doctors are not sugar coating this for us. I can't lie and make this process a bed of roses but I can be honest and let you know what we experience and see on a daily basis so you can help us pray for COMPLETE healing. Knowing what we are dealing with and what we need to pray for will help us directly impact Joey's care. This isn't easy to write and I hope everyone understands I am just being completely transparent with Joey's progress. I remain optimistic in his outcome but I also remain realistic in the road that lies ahead of us.....
