Saturday continued to be a pretty normal day... other than chris wesiting a weird thing on his head... My parents came by to visit... Chris's roommate in 7Tower is pretty coool... 62 yr old man who like like he is 50-- had a stroke in his optic nerve...
Dr Harrison and the team came by and said that if the anti-seizure med is working, he can go home Sunday... We saw Dr Naylor again.. love him
They have him on Topomax... no episodes seen yet.. they did detect seizure activity on the recording.. but want to video him and monitor until Sunday morning
Dr Harrison says Chris can go home Sunday as long as there are no more episodes
I go home Saturday night.. I had been there since 430pm Friday.. more than 24 hours
Sunday morning, Chris calls me and tells me they will be disconnected his head and discharging him... I go pick him up after lunch time and they prescribed him the topomax and gave him dilaudid for home... to ween him off the patch..
Remember, Chris took the fentinol patch off cold turkey and after a month of patch, thats not good.. they felt he was going thru withdrawals from it, so they are having him wind down...
We went home... I had some issues with the CVS folks, but thats my own lil frustration with the guy who didnt call me when he didnt have the right dose of his meds.. so i had to spend extra time there when i went back to get some answers and things straightened out
Its now Monday evening... Chris is home resting.. feeling better... and we will watch dancing with the stars tonight ;) yay!
We have an appointment tomorrow morning (Tues 8am) with Dr Strair.... follow up appointment.. not sure if we will find out about donor or transplant schedule.. but if we do, i will post ASAP tomorrow
Feel free to call or text me tomorrow after 10am to get info
Friday mid-day Chris has a spinal tap (one last one before transplant just to make sure there is no fungus or anything) and he has an MRI with anastesia after that on Friday to check the rest of the spine ...
Tomorrow, we will get more info on petscan and whether we need mugascan and or pulmonary tests again
Until tomorrow... Goodnight!!
xoxox Jenn & Chris
Monday, November 24, 2008
Saturday, November 22, 2008
Photos of Chris on the Neuroscience Floor- Brief Update
Not too much new to report
Pics for you guys... info below.. one pic is Chris late last night while they were attaching wires to head... other pic is Chris today sitting in chair.. they are videoing him 24/7... He is feeling good.. we are watching football
Chris has been hooked up to lots of electrodes and head is wrapped (so they dont come off) and has wires in a sock like thing...
They gave him a button to push if he has an episode (so they know to pay attention to that part of the recording..) Well, all night, he had no episodes...
only episode was that at 3am or so i was awakened by a very loud noice... a helicopter was landing on the roof about 50-75 feet outside the window... i watched it land..i closed my eyes again... great view of the landing pad area.. lol
Chris heard it too and we both went back to sleep
This morning, the neurologist Konstantin Balashov came in and said they were putting him on anti-seizure meds ... they said he didnt sleep much during the night but they saw some sort of seizure like activity.... the original EEG from earlier yesterday saw stuff but they didnt see the beginning of his episode... Preliminary of the MRI looks fine... no leisions... they will probably re-MRI the head in a few weeks
So far today, Chris has had no episodes...
We will be here in 7 Tower all day so they can continue recording him.. ugh
I am posting pics of him... thanks everyone for the prayers and thoughts...
Friday, November 21, 2008
Back in the Hospital - Ugh
Well... late Wednesday night after hanging out, having good conversation... Chris, my brother, and I.... all of a sudden, Chris sorta spaced out... I asked him if he was gonna eat his jello and he sorta looked at me like he didnt know what i was talking about...
He snapped out of it pretty quickly... and I asked if he was ok... took his sugar, blood pressure, and temp... all was good... we decided he was probably tired...
He also took his fentinol (pain) patch off earlier in the day (he saw a commercial about its side effects) and wasnt having pain anyways...
So, we went to bed.. I talked to him,,, he was a lil weird at first with some odd focus on the tv.. but then just talked to me til he fell asleep...
I watched him for a couple hours... he was ok, except waking up with some gas discomfort (sorry, too much information )
Anyways, Thursday morning, he seemed fine. I went to work. He text me a bit... and then he fell when trying to get up to use the bathroom
My mom left work (thank goodness) to go help him up. She called me after 3 to tell me he was acting disoriented...
I called Dr Strair... I explained his moments of disorientation... Dr Strair said if he snaps out of it within a few seconds it is ok, otherwise go to the emergency room
I got home from work.. Chris was ok.. we had dinner.. started watching tv.. and then out of nowhere, he spaced out... He looked at me with a blank stare and did not respond to me asking his name or anything... so in a panic, i screamed for my parents.. Mom called 911 and I called Strair.. while these phone calls were going on, my dad told us Chris snapped out of it...
He is aware of the fact that he is disoriented.. says his brain feels disconnected...
EMS comes.. Edison Twp and a cop... they talk to him.. vitals are ok..
I grab his cell, charger, my purse and shoes and a drink.. and my mom met me at the hospital (she drove my car there for me) and my dad would pick her up
Chris wasnt able to say much in the ambulance ride... but once we got to the ER, he was whispering to me.. He was aware the entire time of what I was saying.. he would smile, squeeze my hand, sometimes talk, etc.. he was happy to see my mom too..
They only allow one person per bedside so mom couldnt stay too long... It was soooo scary watching Chris like this... Chris snapped out of it 30 minutes after we got there... and was talking to me for the rest of the night ... he told me that he saw me looking at me but couldnt reply... he remembers most of the night...
There was one other episode in the ER while we were waiting for him to go to catscan.. it was brief.. he felt it coming on... he said he was fixated on the tv and couldnt turn head towards me
He didnt blank out this time.. just a lil weird... it was brief.
They took him to catscan and took xray and he was ok.. we moved up to the 5th floor and he was admitted
He seemed better and we went to bed (after 3am)
Friday morning, we saw all sorts of doctors.. I didnt physically go into work.. i went home to change and shower and get my laptop and I worked from home for a bit and from hospital for a bit... i will catch up on the rest over the weekend
Friday (today) while i was still home, they did the MRI of his head and when I came back they did the EEG (record brain waves)... He was pretty ok during the day... but when she came to do EEG, he had an episode where he knew it was coming on... he couldnt turn his head on his own nor could be move limbs... the neurologists came in to see this, but couldnt check him out during the EEG
Of course, once EEG was over, they came to see him and he was able to move
The neurologists and oncologists seem to think these are all symptoms of seizure.. but not the kind where you shake and whatnot.. they are called absence or petit seizures.. common more in kids... now they have to figure out why...
MRI should be read by the morning... its 930pm.. 6 hours since MRI and we havent heard anything... so we will see... they have to read the EEG too
Doctors have suggested that the reasons for the seizures could be: all the stress his body has been through since june... manefestation from when Chris got hit by a car when he was 10... leukemia (in the brain, i guess.. maybe tumor)... possibly combo of medicines or chemo... a bunch of good reasons.. but once they see MRI and EEG.. they should be able to figure out what medication to use...
I came back from my stop at home (when his MRI was over) and I ran into Dr Harrison in the hall.. I called his name and he turned around and said "I am not Dr Harrison.. I am Mammal something or other...." i was dying.. he makes me so much more relaxed.. except he continued to say "thats the brain transplant surgeon in there with Chris now..." I freaked and before i could really think about what serious something they may have discovered, he told me "they dont do brain transplants.. just kidding" i am obviously not thinking but now i get it
haha... anyways, Neurologist is talking to chris and checkin him out... Harrison is happy to see how nicely he has recovered from the infection and all.. said his counts look great and nutrition is great.. he told me to keep feeding him whatever he has been eating :) Harrison comments on just getting this resolved so we can move to transplant
Earlier in the morning, Strair had come by
ok... so while i was typing this blog entry, the EEG lady came back... they want to video monitor him for 24 hours... everything he does and everythng we say will be recorded... wonderful... but when he feels an episode happening he can push a button and either of us can talk.. so they will listen to what is being said around the time of the button being pushed... sooo depending on what happens, i might need to jump up and push the button... and as i type more i am hearing that they might have to move him to the 7th floor.. the neuroscience floor for this 24 hour period..
could this get any more complicated? this tech cannot tell me what they may or may not have seen in the EEG...
Here we go again... Just as I get settled in after an unsettling 24 hours, I have to gather our crap that i just lugged here for him (his clothes and stuff)and my laptop and work so i can function here)... do i sound cranky? sorry...
Chris was so excited.. his dad called a day or so ago and wanted to come see him this weekend (at home) and now here we are...
sooo yea... thats that.. now we wait. not sure how soon we will have to move... or when i will get to bed.. or if chris will have another episode
they started giving him ativan a couple hours ago and he seems to be fine... so this should be interesting
I got Chris food from Paulie's tonight..well for both of us... so he ate good...
The 7 Tower rooms are doubles... so i would get a recliner.. they sorta hinted that i should stay with him so i can help push the button and talk... this is weird...
They say they cannot monitor him here cus its neuro equipment and whatever
They are attaching stuff to his head as we speak... the glue smells....
Ok... well i will write more once i have more info... results of the MRI and EEG and all that good stuff
xoxox Jenn
He snapped out of it pretty quickly... and I asked if he was ok... took his sugar, blood pressure, and temp... all was good... we decided he was probably tired...
He also took his fentinol (pain) patch off earlier in the day (he saw a commercial about its side effects) and wasnt having pain anyways...
So, we went to bed.. I talked to him,,, he was a lil weird at first with some odd focus on the tv.. but then just talked to me til he fell asleep...
I watched him for a couple hours... he was ok, except waking up with some gas discomfort (sorry, too much information )
Anyways, Thursday morning, he seemed fine. I went to work. He text me a bit... and then he fell when trying to get up to use the bathroom
My mom left work (thank goodness) to go help him up. She called me after 3 to tell me he was acting disoriented...
I called Dr Strair... I explained his moments of disorientation... Dr Strair said if he snaps out of it within a few seconds it is ok, otherwise go to the emergency room
I got home from work.. Chris was ok.. we had dinner.. started watching tv.. and then out of nowhere, he spaced out... He looked at me with a blank stare and did not respond to me asking his name or anything... so in a panic, i screamed for my parents.. Mom called 911 and I called Strair.. while these phone calls were going on, my dad told us Chris snapped out of it...
He is aware of the fact that he is disoriented.. says his brain feels disconnected...
EMS comes.. Edison Twp and a cop... they talk to him.. vitals are ok..
I grab his cell, charger, my purse and shoes and a drink.. and my mom met me at the hospital (she drove my car there for me) and my dad would pick her up
Chris wasnt able to say much in the ambulance ride... but once we got to the ER, he was whispering to me.. He was aware the entire time of what I was saying.. he would smile, squeeze my hand, sometimes talk, etc.. he was happy to see my mom too..
They only allow one person per bedside so mom couldnt stay too long... It was soooo scary watching Chris like this... Chris snapped out of it 30 minutes after we got there... and was talking to me for the rest of the night ... he told me that he saw me looking at me but couldnt reply... he remembers most of the night...
There was one other episode in the ER while we were waiting for him to go to catscan.. it was brief.. he felt it coming on... he said he was fixated on the tv and couldnt turn head towards me
He didnt blank out this time.. just a lil weird... it was brief.
They took him to catscan and took xray and he was ok.. we moved up to the 5th floor and he was admitted
He seemed better and we went to bed (after 3am)
Friday morning, we saw all sorts of doctors.. I didnt physically go into work.. i went home to change and shower and get my laptop and I worked from home for a bit and from hospital for a bit... i will catch up on the rest over the weekend
Friday (today) while i was still home, they did the MRI of his head and when I came back they did the EEG (record brain waves)... He was pretty ok during the day... but when she came to do EEG, he had an episode where he knew it was coming on... he couldnt turn his head on his own nor could be move limbs... the neurologists came in to see this, but couldnt check him out during the EEG
Of course, once EEG was over, they came to see him and he was able to move
The neurologists and oncologists seem to think these are all symptoms of seizure.. but not the kind where you shake and whatnot.. they are called absence or petit seizures.. common more in kids... now they have to figure out why...
MRI should be read by the morning... its 930pm.. 6 hours since MRI and we havent heard anything... so we will see... they have to read the EEG too
Doctors have suggested that the reasons for the seizures could be: all the stress his body has been through since june... manefestation from when Chris got hit by a car when he was 10... leukemia (in the brain, i guess.. maybe tumor)... possibly combo of medicines or chemo... a bunch of good reasons.. but once they see MRI and EEG.. they should be able to figure out what medication to use...
I came back from my stop at home (when his MRI was over) and I ran into Dr Harrison in the hall.. I called his name and he turned around and said "I am not Dr Harrison.. I am Mammal something or other...." i was dying.. he makes me so much more relaxed.. except he continued to say "thats the brain transplant surgeon in there with Chris now..." I freaked and before i could really think about what serious something they may have discovered, he told me "they dont do brain transplants.. just kidding" i am obviously not thinking but now i get it
haha... anyways, Neurologist is talking to chris and checkin him out... Harrison is happy to see how nicely he has recovered from the infection and all.. said his counts look great and nutrition is great.. he told me to keep feeding him whatever he has been eating :) Harrison comments on just getting this resolved so we can move to transplant
Earlier in the morning, Strair had come by
ok... so while i was typing this blog entry, the EEG lady came back... they want to video monitor him for 24 hours... everything he does and everythng we say will be recorded... wonderful... but when he feels an episode happening he can push a button and either of us can talk.. so they will listen to what is being said around the time of the button being pushed... sooo depending on what happens, i might need to jump up and push the button... and as i type more i am hearing that they might have to move him to the 7th floor.. the neuroscience floor for this 24 hour period..
could this get any more complicated? this tech cannot tell me what they may or may not have seen in the EEG...
Here we go again... Just as I get settled in after an unsettling 24 hours, I have to gather our crap that i just lugged here for him (his clothes and stuff)and my laptop and work so i can function here)... do i sound cranky? sorry...
Chris was so excited.. his dad called a day or so ago and wanted to come see him this weekend (at home) and now here we are...
sooo yea... thats that.. now we wait. not sure how soon we will have to move... or when i will get to bed.. or if chris will have another episode
they started giving him ativan a couple hours ago and he seems to be fine... so this should be interesting
I got Chris food from Paulie's tonight..well for both of us... so he ate good...
The 7 Tower rooms are doubles... so i would get a recliner.. they sorta hinted that i should stay with him so i can help push the button and talk... this is weird...
They say they cannot monitor him here cus its neuro equipment and whatever
They are attaching stuff to his head as we speak... the glue smells....
Ok... well i will write more once i have more info... results of the MRI and EEG and all that good stuff
xoxox Jenn
Wednesday, November 19, 2008
Bloodwork Appt Today- Counts are good
Chris has been home since Monday night. He is enjoying being home very much
Since Monday night, he has gotten a little bit stronger in his legs...
On Monday night, he walked up the stairs ... took a break half way up and needed help...
Tonight, he got all the way up before needing a break...
This morning, he had a bloodwork appointment... Platelets were good... white blood cells are up to 6 and I cannot remember the red blood number.. but we were sent on our way home... no transfusions needed ;) Jackie was a pleasure as always... The appointment went smoother than we could have imagined...
I was worried about what we would do if he needed a transfusion because I had to get Chris home and then go to a job fair for work.... and if he needed a transfusion, I would have had to go.. and we had no ride scheduled until 3pm :( But... it worked out... whew..... Little things like this cause such craziness because they often schedule Chris on their time.. and it is often at bad times for us to get him there... Friday, we have an appointment with Dr Strair... and more bloodwork... but its super early in the morning.. so thats good
Jackie is working on scheduling the donor.. so the bone marrow transplant will happen whenever the donor is ready... Jackie is pretty sure it will be after thanksgiving.. but it can be very soon after thanksgiving if the donor is ready that soon... so we might have a better idea on Friday
On Friday, we should also get more info on the final biopsy...
Remember, the preliminaries of the bone marrow looked much improved from last time.. but the final will tell us exactly what it looked like...
As much as Chris doesnt want to be back in the hospital soon (cus its nice to be gome after 25 days of hospitalization).. we both know that the sooner the better...
We (me, chris, all of you, etc) have been praying for a miracle.. praying for good news, cure, strength, etc... So, whenever Chris can get in for transplant, is a good thing... its a blessing...
We are going to enjoy this time home ... and look forward to the transplant...
Keep you all posted
xoxox Jenn
Since Monday night, he has gotten a little bit stronger in his legs...
On Monday night, he walked up the stairs ... took a break half way up and needed help...
Tonight, he got all the way up before needing a break...
This morning, he had a bloodwork appointment... Platelets were good... white blood cells are up to 6 and I cannot remember the red blood number.. but we were sent on our way home... no transfusions needed ;) Jackie was a pleasure as always... The appointment went smoother than we could have imagined...
I was worried about what we would do if he needed a transfusion because I had to get Chris home and then go to a job fair for work.... and if he needed a transfusion, I would have had to go.. and we had no ride scheduled until 3pm :( But... it worked out... whew..... Little things like this cause such craziness because they often schedule Chris on their time.. and it is often at bad times for us to get him there... Friday, we have an appointment with Dr Strair... and more bloodwork... but its super early in the morning.. so thats good
Jackie is working on scheduling the donor.. so the bone marrow transplant will happen whenever the donor is ready... Jackie is pretty sure it will be after thanksgiving.. but it can be very soon after thanksgiving if the donor is ready that soon... so we might have a better idea on Friday
On Friday, we should also get more info on the final biopsy...
Remember, the preliminaries of the bone marrow looked much improved from last time.. but the final will tell us exactly what it looked like...
As much as Chris doesnt want to be back in the hospital soon (cus its nice to be gome after 25 days of hospitalization).. we both know that the sooner the better...
We (me, chris, all of you, etc) have been praying for a miracle.. praying for good news, cure, strength, etc... So, whenever Chris can get in for transplant, is a good thing... its a blessing...
We are going to enjoy this time home ... and look forward to the transplant...
Keep you all posted
xoxox Jenn
Monday, November 17, 2008
Chris is Home!!
Well, I went to see Chris this morning at the hospital and he was determined to get home today... I thought he was out of his mind (docs said MAYBE tues or wed when we saw him yesterday) but Chris was walking around pretty good today and Dr Strair said SEND HIM HOME
So, after work, I went to pick him up.. and he goes to see the doc for a follow up and bloodwork on Wednesday
He is home!! Woohoo! Rex is beside himself and We are all so happy to have him back home...
Thats all I have to say
Let us know if you want to visit... we'll be here :)
xoxox Jenn
So, after work, I went to pick him up.. and he goes to see the doc for a follow up and bloodwork on Wednesday
He is home!! Woohoo! Rex is beside himself and We are all so happy to have him back home...
Thats all I have to say
Let us know if you want to visit... we'll be here :)
xoxox Jenn
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