I'm Cheating...

I took a day off from blogging yesterday.  I was so emotionally drained and tired that I slept instead.  That was probably a good decision.  Fortunately I have an awesome mother who has been taking notes and writing updates, so I can pass on info without having to do too much more thinking.  This is me, totally cheating, and copying her e-mails into my blog so people know what's going on...

This one is from Thursday night:

I stayed with Mark last night, when Rachel and Elaine went home to get some real sleep!  He slept deeply until 2am.  He was hungry and was able to eat jello - 2 containers - of somewhat real food :-).  Before that he had only had apple juice and he really wanted more food!   He was able to hold the jello container in his left hand and feed himself with his right - all while lying down and not really able to see what he was spooning.  Mark also suggested that Rachel should change her cell phone ring to, "Mommy, mommy....mommy...".  Katie's has "Randy, Randy, Rannnddyyy", but Mark wanted Jason or Emily to record, "Mommy" for Rachel.

Mark wanted to change positions, but with the brain fluid drain that he has in his head, he can't really move his head much and not allowed to lie on his side.  But the nurses came in and rolled him a bit so that they could put 2 pillows under his right side and give him some relief.

Mark wanted to call Rachel at 2:50am and I suggested that he might want to wait and let her sleep a little longer - he said that he could wait for a little bit.  I got online a few minutes later and saw that Rachel was online.  I texted her to make sure she was awake, she was and happy to talk with Mark.  They chatted for a few minutes and then Mark was happy to go back to sleep.

They came to get him at 3:35 for a CT scan.  They do them during the night so that they are ready for the doctors when they do their rounds in the morning.  They wheeled him out in his bed and brought him back about 20 minutes later.  He was able to get back into a deep sleep until they woke him up at about 6 - during shift change when they check all his vitals.  They started asking him questions to check his mental conditions.  The first question was, "What day is it?"  I thought real hard and I didn't know the answer!  Neither did Mark.  Next question, "What is the date?"  I only knew that because they had made a big deal of yesterday being May Day.  Mark did know what year it was though.

Then she asked Mark some interesting questions - Do you use a hammer to pound a nail?

Mark was able to smile a real, 2 sided smile this morning, the left side of his face was working again.  He was able to squeeze with his right hand and slightly move his left side, or at least feel when they were touching.

This morning he had a clear liquid diet and had chicken broth and yogurt - followed up with french toast and scrambled eggs, after the doctor cleared him for real food.  Mark was able to move his left hand/arm up onto his stomach by himself to hold the yogurt container - way to go Mark!!!!

Mark started physical therapy this morning, trying to build up his strength in his left side - they came twice, once in the morning and once in the afternoon. He walked a few steps to the wall and back again to the bed. Not very far, but at least he's moving! In the afternoon he was able to walk across the room twice!

When I got back to the hospital in the afternoon, after my nap, most of the people were in the waiting area instead of in Mark's room.  Rachel was with Mark and they were letting them have some time together.  Katie went in after a while to check on them and both of them were asleep - so of course she took a picture!!!

At 6pm food magically appeared in the waiting room for those of us at the hospital - there must be pixie dust here, because it happens every night.  There was a steady stream of people waiting to visit Mark this evening - aunts, uncles, cousins, grandma.... even the kids got to visit him.  Nate, Doug and Cindy came with the kids, so it was a regular party in the waiting area!!!  Only a few went in at t time so as not to overwhelm Mark - but he was rather tired by the end of the visits.

Everyone has left and I'm now with Mark for the night.  He has had a pain pill (which he hasn't needed many of) and hopefully will get some good sleep.

And here is one from Friday morning:

After an evening filled with many visitors; everyone left by 9:30, Mark had been given a pain pill and was settled down for the night, Rachel and Schofields left and I took up watch in Mark's room.  I stayed awake quite nicely until midnight, when I gave up and went to sleep.  I slept until 2, sitting up in a chair - I knew the fact that I can fall asleep anywhere would come in handy sometime!

The brain drain fluid is much clearer today than it was last night - a good sign I'm assuming.  They removed the blood pressure line that was measuring it internally & consistently and he now only has a cuff that measures it once an hour.

Mark woke up at 3:30 and wanted to use my phone to call his mom.  He was easily talked into waiting until later in the morning.  He also is looking forward to seeing the kids again today!  Then we had a fun time chatting about all kinds of things; BYU football, history and our trip to DC, the Single's regional conference, a movie Mark had seen at work.....  It was fun to have some time with him.

While we were chatting I noticed that his foot was moving - and it looked like his left foot.  So I felt through the blankets to find his right foot and sure enough, Mark was moving his left toes and foot!  I congratulated him and got a big smile!  So I asked if he could move his left arm.  He used his right arm to lift it up and then held it up by itself!  Progress is happening :-).

Rachel and I talked about bringing Emily and Annie to visit Mark in the morning while the other kids were at school.  During the day there aren't so many visitors and Mark would LOVE to see the kids and have them snuggle with him.  Mark really liked that idea.  Then we can bring all the kids to visit later in the day when the school kids are home.  I think it would do Mark good.

At 5am Mark said that he was hungry, but the food service didn't start until 6:30.  I told him that I would be delighted to go to the 24 hour cafe on the bottom floor and get him something.  He asked for pancakes and eggs.  So after telling him not to go anywhere, I left him to find him some food.  Well, when I got to the 24 hour cafe, I found it wasn't really a 24 hour cafe - it had closed at 2am.  So I got in the car and drove 2 blocks to McDonalds to get some food for him.  I bought a pancakes, eggs, muffin, sausage meal and drove back to the hospital.  When I got back to the room, Mark was still here, but sound asleep!  So I did what any normal person would do, ate the food and hoped that he wouldn't wake up until 6:30 :-).  It is 6:20 and he is stirring, so I might be okay with having eaten his food!

Another item that we learned yesterday was that after Mark leaves the ICU, he will spend 2-3 days in the regular part of the hospital and then he will go to a re-hab center - there is one in this hospital - for another 3-10 days to have physical therapy to strength his left side, before going home.  We haven't heard anything about when he will be starting radiation or chemo.  The CT scan that was taken yesterday morning for a baseline of post-surgery looked good the doctor said.

Well, shift change will be happening and others will start to arrive soon, so I had better send this off before I head home to sleep.


And here is Saturday afternoon's update:

Yesterday Mark had his brain drain tube removed, his IV drip removed, the catheter removed, bandages on his wound removed.... he is really improving and impressing the doctors!  But..... because the catheter was removed, Mark would be using either a urinal in bed or the toilet through the night - and he didn't really want his mother-in-law being the one staying the night with him that night :-).  So LaMont, his dad, stayed with him and I got 10 hours of sleep :-)!!!

With the bandages removed we are able to see his scar.  I pointed out that it was too bad that they couldn't have done it in the shape of "BYU".  Rachel said that it looked like a "U" - which certainly wasn't acceptable.  Then we realized that it also looked like a "C" from the right angle - C for Cougars, we liked that!

There are MANY staples in Mark's head - 31 to be exact, which is how old Mark is :-).  He is feeling much better.  He has done 2 rounds of physical therapy today, moving his arms / legs, walking around the ICU floor on his own power with a walker.... a FAR cry from when I had to move his arm for him to hold the jello!

Mark was moved out of the ICU back to the 4th floor this afternoon - in a wheelchair instead of a bed - and all of the rest of the wires were removed, he only has a blood pressure cuff left.  Rachel just said that he is trying to stand up by himself and he will probably drive the nurses crazy on this floor!!!

Elaine learned that for Mark to qualify to go to the re-hab center he needed to be strong enough to take 3 hours of physical therapy, twice a day.  Mark has decreased short term memory and his visual / spacial have been affected.  The doctor had to get really close to those nerve areas during the surgery - but everything should return to normal when the swelling goes down.

Rachel and I were in the room while Mark was doing the physical therapy this afternoon and the look on Mark's face was just delightful as he was able to do more and more.  He loved being challenged and pushed -his smile could have lit a small town.  He said that he wanted to know when the walker races were being held because he planned on winning!!!  His fast progress is encouraging us all!

The doctors were impressed with what he can do already, but warned about the 'porpoise' affect, little jumps up and then small downs.....   over and over.  The doctor said that if he continues on recovering quickly, they might keep Mark in the regular hospital a day or two longer and then send him home - by passing the re-hab part!

Mark passed, with flying colors, the mental/math challenges they gave him - but was surprised that the visual/spacial ones were hard.  He was asked to draw a clock and put the numbers on it and he found that difficult to do - though he could answer what is 100 minus 7, what is 93 minus 7.

Mark is having an MRI right now so that they can double check how things look like in there.  They were working through a rather small hole - though the incision is larger - and he want to make sure he didn't miss something that might have been hiding.  They learned that the best time to do that is within 3 days of surgery.  If they wait for a week or two, the brain starts to heal and reform and the MRI is less useful.

Here is a run down of what is happening at the Provo house:  Becca and Bryan arrive about right now in SLC and will leave on Tuesday afternoon.  William and Danielle are here and I think are leaving on Monday.  Katie is leaving on Sunday evening, finishing up the school year as an IA, packing, tying up loose ends in Cedar and will move up Memorial Day weekend.  Cindy says she is available to stay for 3 weeks, until Katie returns.  I'm staying at least another week - we'll see how Mark is doing, what the biopsy shows, how Rachel and the kids are doing ..... and go from there.

Today was probably the best day ever!  It took me a while to get to the hospital.  Apparently there was a marathon in town today (turns out I've missed much of the news the last few days, and time has gotten away from me - maybe I would have known that if I had been paying any sort of attention...), and the route the runners took pretty much cut off my access to the hospital.  From the canyon to the lake was covered in runners and the hospital and the house were on opposite sides of the route...  My brother and his wife were heading our way from the other side of the 'runner blockade' and it took them a full hour sitting at one intersection to get across the street.  So, I waited until I was fairly sure the beginning of the route would be mostly cleared out (who needs an hour sitting in a car with nothing to do but think?  Not me, that's for sure), and then headed on a rather round-a-bout way of getting here.  Turns out I missed rather a lot of stuff in those few short hours.

I missed physical therapy where he was able to walk with just a walker (and a spotter).  He went out into the hall and back!  His left foot/leg is working again!  And he had to use his left hand to hold onto the walker - so improvement all around!

I missed speech therapy.  I'm guessing that the speech therapy that he would have would be different from the kind Jason is getting.  His pronunciation is fine.  I'm thinking all the questions he had to answer (from Mom's updates) are from the speech therapist - but I didn't actually check that...

I came in right when the first doctor was making his rounds, and got to hear the tail end of that conversation.  The doc was impressed at his improvements and said he was doing really well.

Poor Mark was getting hungry by that point and wanted lunch.  His sister brought him some soup his Uncle Jim made just for him.  He was finally about to get some rest when he realized he needed to use the restroom.  Can I just tell you that was the best part of the day for me at that point (since I had missed actually watching any of the movement in the beginning of the day).  I realize that Mark wanting to go to the bathroom doesn't (and probably shouldn't by any reasonable standard) really sound like the kind of thing that should get someone excited.  The awesome part was watching him stand up - almost completely by himself - and then walk to the back part of the room to use the toilet.  He walked like an old man - a bit slowly and sort of shuffling - but he walked!  By himself!  Without someone needing to move his left foot for him!  And then he walked back to bed - all by himself!  The aid who had come in to help get him up had left and it was just his regular nurse (a tiny little thing who could only barely have caught him if something went wrong) there keeping an eye on him.  It was AWESOME!  I almost cried at how exciting it was!

Then, just when he was finally about to get some sleep, in came the physical therapists.  I LOVED watching him while he was working with them.  He was so happy!  He was laughing and joking with the guys and smiling the whole time.  And!  And!  He was able to do all the stuff they asked him to do! His left side was a bit weaker and slower than the right, but he could move his left side!!  Almost the same as his right!  Yeah, it was pretty awesome, but the BEST part was when, at the end of his walk in the hall, the therapists had him stand on his own and give me a huge hug!  He also snuck in a kiss...  :)  It was a good moment.

His other doctor came by just as Mark was walking out into the hall to go for a walk.  The doc was super impressed with his progression!  He actually seemed a bit pleased with himself for stopping at just the right point in the brain - I agreed with him wholeheartedly!  The doctor also ordered an MRI for today (if there was a tech available - or tomorrow at the latest - Monday would be too late).  He wanted to see how much was left.  The CT looked like they had gotten most of it, but the doctor wanted to make sure they didn't miss a part that was tucked up underneath where they couldn't see.  Depending on the size of what's left in there (there IS some left in there - he just isn't certain as to the size of it) he will start radiation in 2-3 weeks.  If the pieces are smaller then they can wait a bit longer to let the incision heal before starting treatment.  If the pieces are bigger, they are going to want to get at the stuff sooner.

And the order to move him out of ICU and to a regular room came in the middle of therapy, so they moved him upstairs right after that.  Just after he got settled he realized he needed to use the restroom.  He finished and was finally resting and snoring gently for about 5 minutes when the nurse came in to take him down to his MRI...  He got back from that and not 10 minutes later my side of the family started showing up for visits.  Most of them live out of town, and they all started showing up this weekend, so it's the first time he's really had a chance to visit with them.  Our kids were part of the party, and they had more fun walking (well, running really - but I'm pretty sure that's not allowed in a hospital, so I'm going to pretend they were walking quietly...) up and down the hall between Mark's room and the chairs in the waiting room at the other end of the hall.  His current room is a straight shot from the elevator, so the kids were always in view of Grandma and Grandpa (and Cindy who was NOT A FAN of the exposed staples in Mark's head - she was a trooper for even coming in the room, even though she stayed by the door and made sure to stay clear away of any possible view of Mark's head).

He finally asked everyone to leave so he could use the restroom, and right after that his dinner came.  He is one tired guy!  JB was with him while he was eating and she helped him get comfortable so he could sleep (I had gone out to say bye to my family while he was in the restroom, and while I was out food came so I stayed, ate and chatted for a bit).  He asked to stay that way (asleep).  I went in to get my bag, left him a note and headed home.

I confess that the last few days have been rather discouraging.  Today, none of that came back.  Today was all progress.  I'm not oblivious to the fact that there will be bad days yet to come, but there is no way I am going to let some unknown future set backs ruin the awesomeness that was today!