Tuesday, March 27, 2012

heart breaking times

The family is incredibly saddened and we are trying to come to grips with the latest news that hits way too hard....
Mark was diagnosed to have severe brain damage from the pulmonary embolism that triggered two cardiac arrests resulting in global ischemia and uncontrollable status epileptics from sustained lack of oxygen to the brain as well as residual effects from his crainiotomy to remove his most recent recurrent stage 4 brain cancer tumor (GBM) . Based on 2 weeks of continual ICU observation, clinical tests, EEGs and many many other medical results, over 6 doctors determined that he will not have any chance of meaningful recovery. Mark has just today been moved to a hospice care facility that is close to our home in Huntington Beach where we have spent our last 23 years together, he is comfortable and many close family members are here with him loving him up.

Friday, March 23, 2012

latest

Unfortunately, we're now on day 12 and Mark continues to remain unconscious in the ICU.

Tuesday, March 20, 2012

slightly less on the seizures

Seizure activity does show signs of lessening since he got his dose of the stronger med but still seeing some spikes. Vitals are still good and his temp was below 100 most of today and his arms and hands felt normal. Still waiting to see if there was any indication on cause of blood infection, results not definite yet. His skin was checked and looks good. Our UCLA and ICU team both agreed that they need to try to stop the seizures in order to see how Mark can respond without them. EEG does show baseline brain activity which is why they're trying so hard to control the seizures so he can respond. Today they also put in a central line which will be more comfortable for him rather than having to stick him for meds and blood draws. He will keep the EEG on all night so they can monitor throughout the evening. Mark still looks good, it seriously just looks like he is sleeping (with lots of tubes). He looks totally relaxed and his coloring looks great. He's definitely the most handsome patient in the ICU! Still waiting for him to wake up and start cracking jokes :)

Monday, March 19, 2012

continued seizure activity

Vital signs still good, still has low grade temp. Tests have not yet concluded the source of the blood infection. They did restart the feeding, but slowly. Unfortunately, today's EEG was showing consistent seizure activity, even with the 3 meds he is on to control it. They are not visible seizures, but are happening in pretty consistent intervals in his brain. There is still brain activity, so they are adding a 4th strong medication to help his brain stop seizing. CT scan did not show blood or extra fluid in the brain, but is consistent showing the damage from lack of oxygen that we'd seen before from the codes. The posturing we are seeing is related to his brain activity and not excess fluid. Dr Chen did consult with Dr Cloughesy and they agreed that the added med was the next step needed to get more aggressive at controlling the seizures. Dr. Chen assured me he is not feeling any pain right now and with all the seizure medications he is currently not aware of what is happening and is comfortable. We'll be monitoring him for the next couple days, but he will definitely be sedated while on the strong med.

new week, hopefully no new challenges

At the time of the last post, the blood cultures weren't showing any growth, but by the next morning it does appear that there is an infection in the blood. The doctors thought they'd be able to stop antibiotics, but with the new findings they now know which one can target the infection that he has. Test are still out to see if they can determine the cause of the infection, but it is known to be in the blood. Pneumonia and urinary infections have been ruled out for now. He still isn't showing response to the pain tests where they put pressure on his nail bed to get a reaction. Normally when they do this test, a signal is sent to the brain and it triggers the reflex to pull away. They have stopped the feeding a bit for now, because he body doesn't seem to be processing it all yet and it can pile up in his belly. They are also trying to help him make it pass (nicest way I can say it). A lot of times when the body is in trauma, it focuses on the vital organs and the stomach isn't one of them and it can decline to pass things through without a little help. I did feel a couple of thumb squeezes yesterday, but the nurse advised the grip is a normal body reflex and it may not necessarily be triggered by command or response to me. :/ We don't have to believe her though. Also, over the weekend while I was there he demonstrated what is called posturing. This is where both arms stiffen and the shoulders roll in a bit. This is typically an indication that the brain is hypersensitive and sick. :( The nurse recommended no visitors except me and immediate family for now since he is extra sensitive to stimulus. Today Mark had a bite blocker in his mouth because he was trying to bite down on the breathing tube. The neurologist will be again conducting an EEG and a CT scan on the brain and I'll hopefully have some results this evening. Depending on the results he may try to ween down the seizure meds again that could may help him wake up a bit more. His lungs seem clear, his coloring is good and vitals are good. He still has a low grade fever but tylenol seems to help a bit.

Saturday, March 17, 2012

hoping for a restful uber healing weekend

Saw the neurologist again before leaving last night. He again mentioned that his brain activity logs were pretty consistent He said there were a couple spikes earlier on that may have been slight seizure activity so he had increased seizure meds a bit to help control. He had mentioned this before, however, this time he also added that the increased dosage can have a sedation effect. This probably explains why he seemed less responsive yesterday. They said they were going to stay at that dosage to help control and seizure activity to allow the body to heal for the next 48 hours. Today things remain pretty much unchanged. His temp is again around 100 and dropped to 99.7 while I was there. After the blood cultures came back, Dr Singh determined there was no presence of infection causing the low grade fever, so antibiotics were stopped...thank goodness, Mark doesn't really need any more things to fight at this point! His vitals are good. He had a slight twitch in his left thigh the neurologist watched throughout the day, but it was suspected to be seizure effects and the meds were upped slightly to help...which they did. He continues to show active salivary glands which results in alot of suction. Pretty sure we saw some slight arm and finger motion yesterday and when Brock and I visited this evening, we think we got a few slight finger squeezes from his left hand. His eyes were slightly open this morning for me, but he definitely looked like he wanted to keep them relaxed this evening.

Friday, March 16, 2012

road to recovery is slow going

Spoke to the neurologist this morning about yesterday's tests. Results of the SSE show that there is some connections in his arms, but it didn't show too much in his legs, at least for now; however, he said that Mark's legs are really tight right now that can explain the readings. The MRI does show that there is some damage to the right side of his brain; however, it does not show a major damage that is not healable like what you would see from a stroke. Because his brain now has damage on the right as a result of his code AND his brain has damage on the left that is trying to heal from surgery, his body is really trying to repair itself which is why he is not jumping right up to tell us jokes! Add on top of that his body is ALSO dealing with the pulmonary embolism in his lungs...his body has to fight exponentially hard! We are continuing the heprin drip to control the clot in the lungs while Mark's body buckles down to heal his head. The doctor's goal is to have him continue to rest and repair, remain stable over the weekend and the next milestone is to see how he is doing in days 7-10...in his words, "we're ONLY at day 5." He also exclaimed that from what he sees in the brain scan, the damage he sees there he would not label as terminal. We'll continue to see what more we can learn today

Here's an unexpected surprise. My brother-in-law did a search on Mark's name and we found this video piece that was recorded a few months ago. Funny thing is, none of us have ever seen it...including Mark!
http://www.youtube.com/watch?v=F94s8Tmxpm4

Also, here's an article we dug up as well:
http://articles.hbindependent.com/2008-05-07/features/hbi-pace050808_1_brain-cancer-life-expectancy-team-pace

Thursday, March 15, 2012

the eyes have it

Last night as we were leaving, it seemed that he opened his eyes the biggest we've seen yet....almost got to see part of his iris. When Brock was saying good-bye, we think Mark was trying to give him a thumbs up. :) Today I spoke with the neurologist. He said that the eeg log looks pretty good and today he'll be ordering up an mri. He'll also be getting a sensory test (SSE) that will measure how the brain and spine are communicating with other parts of his body as well as another eeg. They say that all his reflexes seem hyper sensitive and there is a lot more "coughing"...translates to Mark has super active salivary glands so we're having to suction quite a bit. The nurse even showed me how to do it! This morning I was reading him all of the facebook posts and he really was trying hard to open his eyes. I saw alot more of his iris and now we're trying to see if he can work to focus his eyes purposefully. It seems like it is alot of effort for him to pull those lids up. Haven't felt much squeezing in his hand today, but today seems like he's really working to bat those eyes at us ;)

Wednesday, March 14, 2012

still waiting

Today's brain scan still confirmed that there is no new bleeding in the brain. His fever is still going between 100-101. We're still waiting for him to show movement and wake up. He is showing some more signs though and has been coughing (but not what you think)...coughing for some one on a ventilator looks like a terrible experience and pretty tough to watch, but is still a reflex motion that is hopeful to see. Today I saw more movement in his eyes and it looked like he would blink when I would touch over his brow. At one point I swear he was struggling to open his eyes, but it looked like it was quite difficult. Like every day though...there seems to be some surprise. Today the cuff of his ventilator was exhibiting signs of a leak which is not good and could prevent his lungs from getting all the oxygen they needed. They said it is kinda rare to have this kind of problem with the equipment, but it did seem to happen. They called in the anesthesiologist and replaced the tube asap. It was a pretty quick procedures, but I doubt Mark enjoyed it. We've been telling him stories and jokes all day. Tomorrow I will print out all the facebook wishes and read those to him. Still asking for extreme praying!

Tuesday, March 13, 2012

a bit calmer, but the wait is overwhelming

Mark just got back from the procedure that inserts the filter into his large vein to prevent further clots from getting to his upper body. They have stopped the phenobarbital around 8am which is the drip that put him in the coma to stop the myoclopic? bursts that were happening every few seconds yesterday. Since they stopped the drip he hasn't shown signs of any seizures. He still has a bit of a fever and is getting antibiotics to help fight any infection. They have been reducing the medicine that was bringing up his blood pressure and he has received the blood transfusion that was helping to up his platelet counts. He is still getting the medium dose of the blood thinner to help prevent the clot in the lungs from getting bigger. In a normal situation, they would give him a much higher dose to break up the clot and get rid of it, but because of his recent surgery, there is a huge risk of brain bleeding that can occur if he gets too high a dose. Doctors in UCLA and OC are consulting on best treatments. It is too risky to transport him to UCLA, so we'll be continuing to treat him here at Western Medical. Now we are waiting to see if he shows any signs of movement. Unfortunately, it can take 24-72 hours for the phenobarbital to get out of the system that would allow us to see movement. The waiting is incredibly stressful to see how his brain functions will be after this ordeal. Keep the prayers going!

latest news

Mark definitely has a large pulmonary embolism which look like what caused the problems. His heart looks good, he lungs look good and currently no evidence of clots in his legs. Normally they would give high dose of anti-coagulant to thin the blood, but because of surgery this is most likely not advised. He currently has a low dose, but there are concerns that the dose isn't high enough to prevent any more clots from forming and going to the wrong place. We are trying to get consent to put in a filter in the groin that can help prevent any clots from getting higher than the legs as a precaution. His blood pressure was a bit low so he's on medication to help get it up and he is currently running a fever which may be caused by urinary infection that they are looking into. We are also working to get Mark up to UCLA. Looks like he might get to go by helicopter..which is what we are hoping!

so far today

Dr Chen the neurologist is there this morning. Follow up cat scan shows no evidence of blood in the brain! Seizures have died down a bit with the treatment last night. Pupilar response, coronary response, nose hair response all good. They are backing away from some meds to see. Will have a followup eeg, to see if there is still further seizure activity. Dr. Liau does want him back at UCLA. We are waiting for stability test results and clearance before he can safely be transported.

Monday, March 12, 2012

major setback, prayers needed!

Today started out good, I talked to Mark this morning around 9am and he said he had a good breakfast, got to shower and shave and finally got rid of that goatee that was catching all the crumbs. He had some speech therapy and then on to physical therapy. They taught him how to get around in his wheel chair with his left foot and even got him to stand with a cane. After that he said, that he was a bit tired and asked to sit down. Once he sat, he collapsed and went into cardiac arrest. The emergency team went into action and got the paramedics and started CPR. His heart did stop while at the rehab hospital and again right when he reached the ER. He's currently on a ventilator and is sedated with all the tubes, bells and whistles. They are trying to figure out what happened and doing all sorts of tests to try and figure out what happened. He is having myopic? bursts (similar to seizures) that are happening every few seconds that they are trying to control. He's had echo cardiagrams, ekgs, blood tests and all sorts of things. So far vitals are good, lungs are clear. We're waiting to see if there is heart damage, possible clot or other brain function issues. We're currently at Western Medical Center waiting for results. He will keep the breathing tube in for tonight for sure. There may be an MRI tonight or tomorrow as well. We're in a wait and see situation right now. Quite a big change from playing dominos last night!! Prayers please!

still moving forward

Mark has now started a pretty consistent regimen of therapy each day. He has a minimum of 3 hours spread throughout the day which includes physical, occupational and speech therapy. His speech is definitely coming back from that last mini seizure and sounds pretty good...much like he did before surgery. His right hand is also showing some improvements and we even got him to play dominoes with us over the weekend. His said his therapy makes him feel like his is having fun in kindergarten again, because he gets to stack alot of blocks...we may have to challenge him to a game of Jenga! Still having some trouble with the right leg and in fact he accidentally slid out of the bed the other night when he was working his way to the edge to get ready for the bathroom. He said he was pretty gracefully but still ended up banging up his hand and looks like he also may have a slight sprain on his right ankle which makes it harder to try and get up an do walk training on it :( The rehab facility will be doing an evaluation on Tuesday to see where he's at and will recommend a length of stay at that point. Dr. Cloughesy and Dr. Liau will be having tumor board on Wednesday to review everything and will get back to us regarding recommendations for the next steps.

Saturday, March 10, 2012

1st day of rehab

The first day in rehab didn't start out that great. Mark had a mild seizure in the morning which seemed to affect his speech. I happened to be on the phone with him while it was happening and called the nurses. He also had quite a bit of head pain, but Vicodin helped that out quite a bit. After some rest, things seemed to get a little better. He had his first stint of physical, speech and occupational therapy throughout the day. He was able to take a few steps assisted with therapists and a walker and even got to take a shower which he was extremely happy about. Later we played cards and watched the Laker game and today the dog gets to come for a visit! He could definitely use visitors during the week if anyone wants to check-in :) Email me at andrea@pace-family.com and I can give the details.

Thursday, March 08, 2012

get to go!

Today, Mark got in trouble with the nurses! He decided he really wanted to take a leak and figured he'd try getting to the bathroom himself (even though we all told him NOT to do it the day before). Inevitably, he fell! Luckily he didn't get hurt, but his punishment was that he now had to have a catheter and he got labeled as a "falling star" patient on his door so nurses knew he was a risk for falls. I think he learned his lesson though and asked for help each time he wanted to get around after that! This morning, I went and did a tour of a few acute rehabilitation facilities where Mark could possible go next. I'm super glad I went to check them out, because the vibe between the two was night and day. We picked a place in Tustin where he'll get to spend his next weeks in inpatient rehab. It is a bright, sunny place and the dog can visit! We're waiting for his ambulance transport to get him down there...at least HE will get to drive in the carpool lane! ;) If you have his cell number, he may be up to phone calls Friday or later and possibly a visit as well. If you need information on how to connect, please email me at andrea@pace-family.com

Wednesday, March 07, 2012

getting out of here soon...sorta

Today Mark got his first taste of physical therapy and was able to walk assisted and do some exercises. His therapist's name is Andrea and she was encouraging and helping him get moving. He'll also be getting to see a speech therapist today as well. Mark also was able to get his "turbin" removed. Dr. Liau did a great job on the incision and it looks pretty clean. The doctor's think he's probably ready to go tomorrow, but not home like we thought! Instead he'll be referred to an acute in-patient rehabilitation facility for 2-3 weeks. There aren't that many facilities that do this type of care so we have a list of about 5 to choose from and some are closer to home...but not much...he already nixed the one that was located in "the hood" ;) So today, we'll be trying to get information and maybe visit to see where the next 5star hotel for Mark might be!

Tuesday, March 06, 2012

no longer in ICU

Today Mark got to move from the ICU to a private room which is pretty nice with its own bathroom and no other roommates. He's no longer connected to any tubes except an IV for fluids. His speech seems to be getting a bit better and he seems to be gaining alot more control of his right leg. His right arm is still according to Mark, "jacked up" but...there is definitely some improvement. Dr. Liau came to visit and again mentioned that we were waiting for final pathology and readings of the MRI he got to have at 3am!! Physical therapy is most likely going to start tomorrow and we're taking bets to see if he'll get out on either Thursday or Friday. The anesthesiologist from the surgery came to check up as well and had some funny stories of Mark during surgery...apparently he was cracking them up in the operating room when they had to wake him up to test his functions mid-surgery. Apparently he answered some of the questions in Spanish trying to be smart, but Dr. Liau wouldn't have it ;) He then told them all how much he loved them all and once surgery was done, as he was being wheeled to PCU he was exclaiming over and over, "You guys are rockstars!!!"

on the road to bouncing back

Today started off a bit less jovial than yesterday. When Mark woke he saw he had little control over his right side and speech, but didn't remember hearing the part about an expected deficit, so he was a bit confused, sad and angry. Once I was able to connect with him again I helped explain what all went on yesterday and he felt a bit better that he had an explanation of why the right side was quite weak. We've been told that rehab will help him regain some control and so it begins. He now has orders to be moved from the ICU to a regular room, so we're waiting for our private room in Hotel Ronald Reagan ;)

Monday, March 05, 2012

comedy in the ICU

In the ICU, Mark is cracking up the whole ward! He sounds like a drunk comedian and is making everyone laugh. He was just able to move his right leg for the first time and yelled so loud in joy and triumph, it made everyone turn around ;)

out of surgery

We had a call time of 4:45am at UCLA for a 7:30am surgery today. This time we got to be in the brand new Ronald Reagan hospital that has been newly built since the last time we were here. Everything during the checkin process seemed to flow along fine. We escorted Mark up to the preparation area and sat with him while he got debriefed by about 6 nurses and 3 anesthesiologists about what to expect during the operation and answered any questions we had. Mark seemed to have quite the international team, everyone was quite nice and we met players in the surgery from Iran, China, Greece and more! They whisked him off on time around 7:30am to the operating room and he was in good spirits joking all morning as usual. The waiting area was beautiful and seemed quite high tech. They set us up with a restaurant style pager and we parked ourselves by a monitor where you could watch the progress of where patients were in surgery…big improvement from last time where they never told us anything! About an hour in, there was a loud announcement over the speakers that said “Code BLUE, Code BLUE, radiology intervention needed on the 2nd floor.” It was quite unnerving and sounded alarming and we were questioning what code blue was, but agreed it didn’t sound good. The next thing I knew, some one was asking I come to the phone because the doctor wanted to talk to me! My heart raced as I went to the phone, but was relieved to find out it was just a coincidence that the two announcements happened at the same time. The doc on the other end of the line said that incision happened about a half hour before and everything was going along fine. Whew! I later found out that code blue is related to some sort of cardiac emergency..but fortunately it had nothing to do with Mark!! The next update I got was from Dr. Liau herself. Surgery finished about 1pm and she said it went well. Initial pathology did conclude that it again was a GBM, the tumor was about walnut sized and again had all the characteristics of a stage 4 tumor. She said they did wake him up mid surgery to assess function and he was able to move all of his extremities and talk. She said this tumor was invading on the motor sensory areas and she did have to be a bit more aggressive than last time since tumor growth would affect his motor skills anyway and it was better to resect. She said that she got 90-100% of the visible tumor, but it is likely that he will have deficit on his right side; however physical therapy can help regain much of it. Next step is to wait for final pathology results in about a week. After that it is typically at least 4 weeks before any chemo or radiation plans are made so the situation can be assessed. He will be having a MRI later this evening and will most likely be in the hospital 2-3 nights. He will again be eligible for the vaccine trial since there is new tumor. She mentioned that he may not be able to drive for about 3 months, but depending on how he feels he may be able to go short distances…but no freeways for awhile! Once we see how things go, regular physical therapy arrangements can be made either in hospital or somewhere closer to our home. For now, Mark is in the recovery room and we’ll be able to visit in about 2 more hours.