Hello, long time no post. SORRY! It has been over a week since Mike has been home from the hospital and last Thursday it was the two week mark for the date of the surgery.
Mike is getting some of his staples (he has 62) removed today. He says: YAHOO!
Mike has been having in home PT which has been going very well. His balance is good and alot of his small motor skills having been coming back.
He picked up a drawing pad and pen, which he hasn't done in a long time, so I was really happy about that. And soon he is going to start playing the guitar again, which again has been years since he plucked some strings.
We can tell he is still recovering though because his processing (thinking and speaking his thoughts) can sometimes be a bit slow and he tires easily, but otherwise it seems very miraculous how well we are doing.
Some other things that are going on are that he is having major trouble with sleep apnea, so he is not really sleeping and is very exhausted. We went to a doctor today and are in the midst of fixing that. Post surgery, he can tell that he is having trouble with the apnea, before surgery, he was not aware, although I was.
The other thing is he is having is really bad edema but that is a temporary issue.
Being at home, it has been harder to get a chance to sit down at the computer and do this, plus I was sleep deprived as well as Mike, so our first week was an adjustment.
Each day gets a bit better and now, I am trying to start to work again for some time each day.
Mike has been navigating his computer again and finally figured out some ways to get back onto facebook, so if you see posts on his facebook, YES, that is really Mike doing the posting.
He is spending time, listening to music, doing some meditation, and doing art or other things like that to keep busy.
Slowly Mike would like to see visitors. Make a request to me, and please don't take offense if Mike denies a visit at that time, some days are better than others. Refer to Brian Wilsons song, 'In my room'.
Monday, April 9, 2012
Tuesday, March 27, 2012
Mike's discharge plans
I am sorry i have missed a couple of days of posting. It has been a bit crazy for the last couple of days.
Last night mike got moved from ICU to a reg room on the neurosurgery floor. He has not slept well while in the hospitawhich has been a problem and has increased Mikes anxiety. But they are taking care of home really well.
Now for the big news.....
Well you are all not going to believe this.....Mike is doing so well that the doctors and physical therapists are discharging Mike home for care by me and in-home PT and OT. So his rehab isn't as we had been informed and he is really doing remarkably well. Yeah, Mike! Hopefully his recovery will speed up while at home because he can relax better.
He had a lot of great help here at UCLA.
He is seeing remarkably well. Today he has been using his iPhone and sending texts and making phone call. He has walked and is doing more things by himself now.
It's funny how they really prepare you for the worst and wow, we got the complete opposite. Mike going home after a week instead of 3 or 4 months.
So now life changes again and we will be traveling home tomorrow. I have shared all of your Facebook comments, and he has appreciated them all. Thank you!
Saturday, March 24, 2012
Saturday Morning - ICU
Hi. Mike is trying to take a bit of food today. They took him off of the ventilator (and intubation tubes) around 1pm yesterday. And after that they just did a good job of making him feel comfortable. He was talking and fairly out of the anesthesia fog later in the afternoon.
His eyes are totally swollen shut today, so I was glad he could open them yesterday and they determined that his vision is okay. We do not have confirmation that it is better, but he could see and count the right amount of fingers.
He is having a lot of anxiety (understandable), and he's lucid and aware of what's going on around him.
He might get out of ICU tomorrow because he is doing well.
Thank you for your continued thoughts, prayers, and well-wishes.
His eyes are totally swollen shut today, so I was glad he could open them yesterday and they determined that his vision is okay. We do not have confirmation that it is better, but he could see and count the right amount of fingers.
He is having a lot of anxiety (understandable), and he's lucid and aware of what's going on around him.
He might get out of ICU tomorrow because he is doing well.
Thank you for your continued thoughts, prayers, and well-wishes.
Friday, March 23, 2012
Post procedure Friday morning
Mike has "woken up" from his surgery. He opened his eyes for me for one sec and for the doctor to track his fingers, which he did a good job of. But mosty he is sedated w pain
Meds sleeping. His is still intubated and on a ventilator which they are trying to wean him off of but mike was too agitated and that was not good. Later in the afternoon I will have more info after his main care drs come to see him. Tumor news: it was a 13+ hour very difficult surgery. They could not remove all of the tumor. Some was left that was too emeshed w his optic nerve and his carotid artery. Don't know more until later. That's all for now.
Wednesday, March 21, 2012
Today it starts.
Today it starts...please keep Michael in your thoughts today and tomorrow. He is admitted to the hospital today for a procedure to help them accomplish his brain surgery tomorrow.
Saturday, March 17, 2012
More appointments
Well, Yesterday, we spent a grueling 12 hours going to six appointments for Mike. Oi Vey! we both are wiped out from that. We left about 6 am and got home about 9 pm. The kids did not have school that day so their grandparents, Gerry (gramp) and Linda (Bubs) came to get them and kept them occupied for the day in Santa Monica.
He saw a new doctor, a hematologist, whom we both liked, who was on board with treating Mike with bleeding disorder medicine aggressively during any of the procedure days. He was funny and had a good bedside manner.
But, he wants us to come back on Tues to do a special test to check how Mike's medicine works in his system. We arrive and he initially gets a blood draw, then we give him his medicine, then he gets his blood drawn again, then after one hour, then at 6 hours. So another long day in LA on Tues. Then back on Wed am at 6:30 for the embolization procedure. This procedure will admit him to the hospital and there he will stay thru his brain surgery and recovery.
Mike wasn't able to bank his own blood yesterday. His pulse was too high. That was a bummer, but better to be safe. They said to draw blood when it is too high is a risk, one that we don't want to take right now.
He had another MRI. He said that was fun, NOT! He dislikes them anyway, but for this one, they were almost done and they had an IV in with the dye (called an MRI with contrast) and the tube opened and sprayed the dye all over Mike. they had to stop and pull him out, get him cleaned up and redo that last section of the MRI. POOR GUY! Poked and prodded all day.
Today, we got up to go to temple. Our community said a prayer for Mike and for our family. It was so nice to be able to gain strength and comforting words from them.
We are in the countdown for the last few days and in some ways, it doesn't seem real, but in others, it is OH so very real and we are going to turn around and it is going to be here.
We keep hearing that we are in very good hands at UCLA. Yesterday, we finally got to see the bottom level of the hospital. WOW! it is so posh and impressive. From what I can see, it looks like he would be walking into a very nice hotel. I hope the rooms, care and service are just as nice :o).
I guess that is it for now.
Until later....
Leslie
He saw a new doctor, a hematologist, whom we both liked, who was on board with treating Mike with bleeding disorder medicine aggressively during any of the procedure days. He was funny and had a good bedside manner.
But, he wants us to come back on Tues to do a special test to check how Mike's medicine works in his system. We arrive and he initially gets a blood draw, then we give him his medicine, then he gets his blood drawn again, then after one hour, then at 6 hours. So another long day in LA on Tues. Then back on Wed am at 6:30 for the embolization procedure. This procedure will admit him to the hospital and there he will stay thru his brain surgery and recovery.
Mike wasn't able to bank his own blood yesterday. His pulse was too high. That was a bummer, but better to be safe. They said to draw blood when it is too high is a risk, one that we don't want to take right now.
He had another MRI. He said that was fun, NOT! He dislikes them anyway, but for this one, they were almost done and they had an IV in with the dye (called an MRI with contrast) and the tube opened and sprayed the dye all over Mike. they had to stop and pull him out, get him cleaned up and redo that last section of the MRI. POOR GUY! Poked and prodded all day.
Today, we got up to go to temple. Our community said a prayer for Mike and for our family. It was so nice to be able to gain strength and comforting words from them.
We are in the countdown for the last few days and in some ways, it doesn't seem real, but in others, it is OH so very real and we are going to turn around and it is going to be here.
We keep hearing that we are in very good hands at UCLA. Yesterday, we finally got to see the bottom level of the hospital. WOW! it is so posh and impressive. From what I can see, it looks like he would be walking into a very nice hotel. I hope the rooms, care and service are just as nice :o).
I guess that is it for now.
Until later....
Leslie
Saturday, March 10, 2012
In response to your offers to help...
Dear Friends and Family,
Alot of folks have asked if they can help and how. Our temple community - the comfort committee - has put together a care calendar for that very purpose and it is for everyone and anyone who wants to help.
This is the information to get access is:
Leslie
Alot of folks have asked if they can help and how. Our temple community - the comfort committee - has put together a care calendar for that very purpose and it is for everyone and anyone who wants to help.
This is the information to get access is:
Thank you,Calendar ID: 105504Security Code: 9300
Leslie
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