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
Mar 10 - Mike's Health Care Blog
Mar 10 -
Mike had an appointment Wed Mar 7th with his primary doctor, who is the doctor who sees him for his bleeding disorder. He had tests and an x-ray and has been all cleared by her for surgery. This is good.
While there, Mike's doctor said that she referred Mike to a UCLA hematologist who will be the hematology doctor who will oversee Mike during the surgery. Their office called us already to schedule the appointment. We will be seeing him Friday Mar 16th at 9am.
Mike will also be banking his own blood that day and hopefully they will be able to schedule the next MRI (actually called an MRA due to it being more specialized -they will be using that for the surgery) that they have to do so that we can get all of this done in one day.
Mike's had a couple of bad migraines this past week. but he is hanging in there. today he is out with brother-in-law, Ron, to get out of the four walls of our house and have a distraction.
Our van has been giving us trouble....in the beginning of Feb we had to have some major work done to it; rear brakes and the head gasket fixed (it was cracked). The also replaced the some things on the coolant system. Anyway, this was happening all at the same time as we were finding all of Mikes results out. Bummer, but oh well. Then two weeks ago, the check engine light came on. New issue, the coolant system needed the sensor replaced and they didn't do that before and also they found that the gas tank had a crack in the pump as I had been smelling gas. So again, it was in the shop. Last week two more times my check engine light came on. These things were fixed under warranty but just one more thing we didn't need to deal with.
Anyway, that i all that has been going on for this week.
Thanks,
Leslie
Mike had an appointment Wed Mar 7th with his primary doctor, who is the doctor who sees him for his bleeding disorder. He had tests and an x-ray and has been all cleared by her for surgery. This is good.
While there, Mike's doctor said that she referred Mike to a UCLA hematologist who will be the hematology doctor who will oversee Mike during the surgery. Their office called us already to schedule the appointment. We will be seeing him Friday Mar 16th at 9am.
Mike will also be banking his own blood that day and hopefully they will be able to schedule the next MRI (actually called an MRA due to it being more specialized -they will be using that for the surgery) that they have to do so that we can get all of this done in one day.
Mike's had a couple of bad migraines this past week. but he is hanging in there. today he is out with brother-in-law, Ron, to get out of the four walls of our house and have a distraction.
Our van has been giving us trouble....in the beginning of Feb we had to have some major work done to it; rear brakes and the head gasket fixed (it was cracked). The also replaced the some things on the coolant system. Anyway, this was happening all at the same time as we were finding all of Mikes results out. Bummer, but oh well. Then two weeks ago, the check engine light came on. New issue, the coolant system needed the sensor replaced and they didn't do that before and also they found that the gas tank had a crack in the pump as I had been smelling gas. So again, it was in the shop. Last week two more times my check engine light came on. These things were fixed under warranty but just one more thing we didn't need to deal with.
Anyway, that i all that has been going on for this week.
Thanks,
Leslie
Sunday, March 4, 2012
Mar 2 - The Start of Mike's Health Care Blog
On Feb 7, one week after Hannah's Bat Mitzvah, Mike went to the eye doctor to look into his vision loss and get glasses. After the first appt, the doctor wanted to do more tests. Mike went back on Friday the 10th. Had more tests done and then the doctor told him to come back the following Tues, Feb 14th for results.
The eye doctor's discovery was that there was nothing wrong with the eye itself. He was perplexed as to what it was because there were no markers showing what it might be. So, he recommended Mike see a neurologist right away.
We contacted a neurologist who we know from our community right away and she saw him the very next day, Feb 15th.
She was helping us to arrange getting an MRI right away, but when he was examined for his appt, his blood pressure was 191/122. Way too high, so she said that he should go into ER and have them get down his blood pressure and then they can do the MRI.
Well after arriving at 10pm and 5 hours of just waiting, they took Mike in for a CAT scan. After about an hour, they came back to tell us that they found something with the CAT scan and they want to do an MRI.
They did the MRI about 8 am. After waiting and waiting, they told us the neurosurgeons, who were supposed to come and deliver the reports, were in surgery and there was a brain tumor and they couldn't give us any more information, just that we were being released and call a neurosurgeon for follow up and surgery. They sent us home with all of the reports from the tests, and after reviewing them with the neurologist and reading them myself, we were under the impression that the tumor was small and that they might possibly remove it by going through the nose or roof of mouth. The bomb was dropped. This was shocking. It explains the vision loss and headaches.
As you might or might not know, Mike also has a bleeding disorder, vonWillebrands disease. So, first we contacted Mike's primary doctors from his hemophilia clinic. The scheduled us an appt with the head of neurosurgery at UCLA for FEB 29th.
Their office had Mike do a blood test Monday 27th, a CTA and CT scan (very detailed brain scans) and a consultation appt for Feb 29 to review the findings and options with Dr. Neil Martin, neurosurgeon.
My parents, Gerry and Linda, came with us to the appointment. This was where the bomb exploded. The doctor said Mike has a tumor the size of 1/2 of a baseball and located right in the front and towards the left side of the brain. It is a meningioma tumor that the doctor thinks is benign (90% of the time these types are). It is huge so the only option (since leaving it is life threatening) is to remove it. The only way they can remove it is by going through the forehead. The bleeding disorder complicates things although they will be doing extra precautionary procedures to help stabilize that.
Mike will be having surgery to remove the tumor on Thursday, March 22 at UCLA. He will be in IUC for 3-5 days and then in the hospital for 2-3 weeks. Then he will have 2-4 months time of rehabilitation at a facility to help him recover.
I will be doing my best to keep this updated as to how things are progressing. Please use this to keep posted on how Mike is doing and post comments below and I will read them to Mike.
Mike definitely would like visitors just in case you were wondering.
We want to also thank you all for your support!
Love,
Leslie, Mike, Hannah, and Jordan
The eye doctor's discovery was that there was nothing wrong with the eye itself. He was perplexed as to what it was because there were no markers showing what it might be. So, he recommended Mike see a neurologist right away.
We contacted a neurologist who we know from our community right away and she saw him the very next day, Feb 15th.
She was helping us to arrange getting an MRI right away, but when he was examined for his appt, his blood pressure was 191/122. Way too high, so she said that he should go into ER and have them get down his blood pressure and then they can do the MRI.
Well after arriving at 10pm and 5 hours of just waiting, they took Mike in for a CAT scan. After about an hour, they came back to tell us that they found something with the CAT scan and they want to do an MRI.
They did the MRI about 8 am. After waiting and waiting, they told us the neurosurgeons, who were supposed to come and deliver the reports, were in surgery and there was a brain tumor and they couldn't give us any more information, just that we were being released and call a neurosurgeon for follow up and surgery. They sent us home with all of the reports from the tests, and after reviewing them with the neurologist and reading them myself, we were under the impression that the tumor was small and that they might possibly remove it by going through the nose or roof of mouth. The bomb was dropped. This was shocking. It explains the vision loss and headaches.
As you might or might not know, Mike also has a bleeding disorder, vonWillebrands disease. So, first we contacted Mike's primary doctors from his hemophilia clinic. The scheduled us an appt with the head of neurosurgery at UCLA for FEB 29th.
Their office had Mike do a blood test Monday 27th, a CTA and CT scan (very detailed brain scans) and a consultation appt for Feb 29 to review the findings and options with Dr. Neil Martin, neurosurgeon.
My parents, Gerry and Linda, came with us to the appointment. This was where the bomb exploded. The doctor said Mike has a tumor the size of 1/2 of a baseball and located right in the front and towards the left side of the brain. It is a meningioma tumor that the doctor thinks is benign (90% of the time these types are). It is huge so the only option (since leaving it is life threatening) is to remove it. The only way they can remove it is by going through the forehead. The bleeding disorder complicates things although they will be doing extra precautionary procedures to help stabilize that.
Mike will be having surgery to remove the tumor on Thursday, March 22 at UCLA. He will be in IUC for 3-5 days and then in the hospital for 2-3 weeks. Then he will have 2-4 months time of rehabilitation at a facility to help him recover.
I will be doing my best to keep this updated as to how things are progressing. Please use this to keep posted on how Mike is doing and post comments below and I will read them to Mike.
Mike definitely would like visitors just in case you were wondering.
We want to also thank you all for your support!
Love,
Leslie, Mike, Hannah, and Jordan
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