Sunday, April 30, 2006
Sunday 4/30
Michele did good today. There were 3 times thru the day that they removed the ventilator from her trach tube and allowed her to breath on her own; each time over 20 minutes. They will increase the frequency of these and lengthen the time over the next few days till see is free of the ventilator. Best guess is 3 or 4 more days.
Saturday, April 29, 2006
Saturday 4/29
Michele is doing well after the traceotmy. She now has the ventilator hooked up to the trach tube. The plan is to wean her off the ventilator by turning it down to it's lowest then removing it for short periods at a time then building up those times till she is free of it. They can then start getting her off the IVs and getting her moving some. There is no timetable for any of this; it'll all move at Michele's pace on her schedule. The swelling in her tongue is going down but still painful. Her fevers continue to baffle there are no infections found.
Friday, April 28, 2006
Friday 4/28
Michele fought hard but was unable to breath well off the ventilator. She asked for it back after about 45 minutes. They will go ahead with the tracheotomy this morning. She can then get the tube out of here mouth.
Thursday, April 27, 2006
Thursday 4/27
The doctors removed about 16 ounces of fluid from around Michele's right lung today. They weren't able to do it till late afternoon so They put off removing the ventilator till early Friday morning. The fluid did not visually saw any signs of being infected but tests will be run. Her fever still comes and goes.
Thursday 4/27
They will try again to remove Michele from the ventilator today. She has a little collection of fluid around her right lung that they want to siphon out first. Her fever still comes and goes with no known source
Wednesday 4/26
Michele was a little too weak to attempt removing the ventilator today; they will re-evaluate her again Thursday. Her fever continues to come and go. They have her scheduled for a CT scan over night to see if that will show them anything
Tuesday, April 25, 2006
Tuesday 4/25
Michele was taken off the ventilator on Monday - but unfortunately it was only for a short time and then they had to reconnect her. Over the past few days she had been biting down on her tongue causing swelling when she was off the ventilator she wasn't able to cough up what she needed to breath good enough. They will rest her up and try again in the next day or two. I know everyone has been hoping and praying for her but we need a few extra prayers now. When they take her off the ventilator if she doesn't respond they may need to do a tracheotmy as a temporary measure.
Monday, April 24, 2006
Monday 4/24
Today they may try to take Michele off the ventilator, they just need her to wake up a bit more. She has picked up another infection somewhere and is running a fever. They are giving her antibiotics while they are running all the tests to see if they can narrow it down.
Sunday, April 23, 2006
Sunday 4/23/06
Michele is continuing to do well. She is doing most of her breathing w/o the help of the ventilator.
Sunday 4/23/06
Michele is continuing to improve. She is more awake today and is doing most of her breathing w/o the help of the ventilator.
Sunday 4/23/06
Michele continues to do well. She is a little more awake today and is doing most of the work breathing.
Saturday, April 22, 2006
Saturday 4/22
Michele is doing good, Everything is about the same. She sleeps most of the time. When she's awake she will respond to you and she can wiggle all her extremities
Friday, April 21, 2006
Friday 4/21
Michele is off all the sedation medicine as of yesterday morning. She did have a seizure Wednesday night and they increased her anti seizure medication. She is doing good, she responds to verbal requests to move fingers and toes and is opening her eyes with out being asked. Her liver and kidney tolerated all the medications and continue to function well
Thursday, April 20, 2006
Thursday 4/20
Michele is starting to show signs of waking -fluttering eyelids, moving arms and an occasional yawn. They have reduced the remaining sedative about half way at this point and plan to eliminate it today
Wednesday, April 19, 2006
Wednesday 4/19
Michele is doing well, she has remained seizure free since Saturday. They just finished removing one of her sedation medications. They will watch her EEG today and if it remains good they will start on the other (last) sedation medication this afternoon or Thursday.
at some point when they are easing her off the last medication they will begin to wean her off the ventilator. Even after all the medications are removed she will probably sleep for a while
at some point when they are easing her off the last medication they will begin to wean her off the ventilator. Even after all the medications are removed she will probably sleep for a while
Tuesday, April 18, 2006
Tuesday 4/18
All is going well and according to plans. The doctors began to back down the sedation medication. They will knock it back about every 4 hours then take a look at her EEG to make sure it remains seizure free before they continue
Monday, April 17, 2006
Monday 4/17
Michele has gone since Saturday afternoon w/o any seizure activity on her EEG. They will start Tuesday morning to lighten her sedation
Monday 4/17
unofficially - Michele remains seizure free and they may begin to lighten up the sedation medicines this afternoon.
Sunday, April 16, 2006
Sunday 4/16
22 hours seizure free!!!
Saturday, April 15, 2006
Sunday 4/16
Happy Easter All!
Hopefully there'll be good news on Monday
Thank you for keeping us in your prayers and thoughts
Hopefully there'll be good news on Monday
Thank you for keeping us in your prayers and thoughts
Saturday 4/15
Well the experts agreed with the surgeons; there is still some seizure activity on Michele's EEG. They switched to a different type of medication for sedation to see if it will stop the seizures.
Saturday 4/15
The neuro surgeons saw a few spikes in Michele's EEG last night so they have bumped up her sedation medication. These surgeons do a good job reading the EEGs but the expert doctor in the lab is the final word which we won't hear till probably around lunch time.
Friday, April 14, 2006
Friday 4/14
According to the neurology residents Michele brain is still having seizures. The have increased the sedation medicine still looking for a 24 hour 'quiet' period. The doctor sezs he has seen cases like this where the patient was sedated for 2 weeks.
Thursday, April 13, 2006
Thursday 4/13
Well I mentioned there was no seizure activity to the untrained eye; the trained eye found some. They have increase both the sedative and the anti-seizure medicines for Michele. They are going to have her sleep today in an effort to help her brain activity quiet down
Thursday 4/13
Michele had a good night last night. No visual signs of seizures nor any signs on the EEG when viewed by the untrained eye. The MRI came back OK. She had to go back for a second part and then the radiologist had trouble reading it of the computer so he had to come in and read it off the film; keeping Sherry here late.
the plan today is to start getting her off all this stuff and on her own. They will be moving slow and watching closely
the plan today is to start getting her off all this stuff and on her own. They will be moving slow and watching closely
Wednesday, April 12, 2006
Wednesday 4/12
Michele is still sedated. The overnight EEG showed no signs of seizures Tuesday night. The MRI was late so the results aren't available yet; but they don't expect any surprises. Thursday morning they will start waking her up and then removing the breathing tube. This will be a slow process as they have to watch for any seizure activity as the brain wakes up.
Tuesday, April 11, 2006
Tuesday 4/11
They have decided how they are going to treat Michele's seizures. They have put her under sedation (the same stuff they use in surgery). While she is sedated they will monitor her brain activity and get the anti seizure medicine levels where they need to be. Once they have no seizure activity showing up on her EEG they will slowly bring her out of it and monitor her in a conscious state. Her liver and kidneys are working good and this should not effect them
Tuesday 4/11
The medicine has controlled Michele's seizures somewhat. Instead of her body shaking it is just a tremor on the left side of her mouth. The medicine is just controlling the physical part of the seizure right now. She continues to have the seizures they have her hooked up to the EEG to monitor her brain activity. The 1st anti-seizure medicine doesn't seem to be helping so they are starting a different one. This one takes time to build up before it becomes effective.
All her magnesium and other blood stuff is good so it appears this is just due to the nuero stuff. She wakes occasionally and will follow request to move and wiggle. She will probably need at least a couple more days in ICU to get the medicine right
All her magnesium and other blood stuff is good so it appears this is just due to the nuero stuff. She wakes occasionally and will follow request to move and wiggle. She will probably need at least a couple more days in ICU to get the medicine right
Monday, April 10, 2006
Friday 4/10
About an hour after posting her note below and as we were getting ready to go visit RIC Michele had a series of seizures. She is now in the ICU room 924. They haven't narrowed down the cause yet. They do believe it is probably one of two things or the combination of them. She had a CT scan that showed that nothing had changed. The doctors told us that it could be due to the previous blood that was on the brain and that seizures are about 50-50 in these situations. (though neither Sherry or I remember hearing this before, of course that is the least serious of the options) They don't automatically prescribe anti-seizure medication because it can interfere with the healing and rehab process. The other thing was a very low level of magnesium in her blood. She has been taking supplements for this. Magnesium is one of the essential minerals that your body needs.
She is resting comfortably and will stay in the ICU till they get the medication regulated. This is another medicine she will have to take the rest of her life.
She is resting comfortably and will stay in the ICU till they get the medication regulated. This is another medicine she will have to take the rest of her life.
A note from Michele
Hi Everyone,
I'm laying here at Northwestern waiting for them to find me a bed at RIC hopefully it will be today. I'm feeling pretty good. Just a little upset stomach here and there. Yesterday Mom and the nurses got me to wheel chair and I got to go to the cafeteria and outside for a little bit. A little chilly but it sure felt good.
Thank you all for keeping me in your prayers and thoughts. I'm looking forward to seeing you soon
Love
Michele
I'm laying here at Northwestern waiting for them to find me a bed at RIC hopefully it will be today. I'm feeling pretty good. Just a little upset stomach here and there. Yesterday Mom and the nurses got me to wheel chair and I got to go to the cafeteria and outside for a little bit. A little chilly but it sure felt good.
Thank you all for keeping me in your prayers and thoughts. I'm looking forward to seeing you soon
Love
Michele
Friday, April 07, 2006
Friday 4/7
Michele is doing good. Her pain is eased up just waiting for the tummy aches to go and the appetite to come back. The doctors said that she was OK to go to RIC, but RIC doesn't think that they'll have room for her till Sunday or Monday.
Thursday, April 06, 2006
The neurosurgens have released Michele back to the transplant team and the transplant team is working to release Michele to the Rehabilitation Institute of Chicago (RIC). She will be moved there as soon as they can but it may take till Monday. She is doing good; the pain is going away but we're still waiting for her appetite to kick in.
Wednesday 4/5
Michele's doing good, she got the drain out this morning and moved up to the 11th floor this evening. She can eat what she wants. She still has some pain from the latest procedure. She is in room 1124.
312-926-1124
312-926-1124
Tuesday, April 04, 2006
Tuesday 4/4
Michele is doing good today. Still pretty painful from the operation to put the drain tube in. They finally found room for her last night in the ICU (room 948) about 6pm. The drain seems to be doing it's job according to the neurosurgen. The symmetry of Michele's brain has improved by about 50 % overnight. They plan to remove the drain probably Wednesday; Thursday at the latest.
Monday, April 03, 2006
Monday 4/3
Michele's surgery went just as planned today and she's doing good. At this time they still haven't found an ICU room for her so she is still in recovery. She will be flat on her back, till Wednesday( or so) when they remove the drain. This will be done at her bedside so she should be done with ORs!!
Sunday, April 02, 2006
Sunday 4/2
One last time. The neuro surgeons have decide to do one last procedure before letting Michele move on. The CT Scans of her head don't show new fluid, but they also don't show that the existing fluid has gone down. So on Monday they will put a temporary drain in to relieve the fluid. They plan to use the a small part of the current incision. At this time they say they are not certain if they will do it till they get another CT scan but they did reserve the OR for Monday 10 am just in case they decide to.
Otherwise Michele is doing great She has sat up in the chair for a couple of hours each day this weekend; and she looks good doing it. She is free to eat what she wants.
Otherwise Michele is doing great She has sat up in the chair for a couple of hours each day this weekend; and she looks good doing it. She is free to eat what she wants.
Saturday, April 01, 2006
Saturday 4/1
Well she was supposed to get real food on Friday but now they say maybe today. Otherwise everything is going great. She got to sit up in a chair today and she is working to build her strength
