First Full Day in the ICU

I had my first decent night of sleep in a few days last night.  That was a blessing!  I had more energy to be helpful, which is good because Mark still needs a bit of help doing some basic things right now.  I was able to be more cheerful with Mark and better able to have somewhat coherent conversations with visitors (I'm not convinced that I have been able to say much more than 'thank you for coming' for a while now).  I am also now super proficient at hand holding.  Mark says that the best part of recovery is getting to hold my hand.  So that's pretty much what I do, all day.  I sit next to him and hold his hand.  And I smile at him.  He likes to just look at me (which I consider a bit of an odd thing to do, but he says he enjoys it, so I let him).  I always feel a bit bad when it's time for me to eat.  Some times I can do that with one left hand, but mostly I'm not that good, so I have to let go.  I usually only get a few minutes before his hand is reaching out for mine again.  I eat in 2 minute intervals.  It's a talent I'm working on. :)

But getting sleep has had a few negative side effects as well.  For one, I stayed home to visit with the kids while they were getting ready for school (that was actually a good thing - I think the kids needed a bit of time with their mom) and because of that I missed being there while his doctors were doing their rounds and the first round of physical therapy, so any info I have from that is second hand.  Also, with more sleep and time to think, I've been able to actually process some of this, and I haven't been quite as able to keep myself together as I could before.  I was pretty good at being a complete non-thinking zombie and still putting on and keeping on a cheerful(ish at times) face for Mark.  Once my level of functioning increased, I have had a bit more of a roller-coaster experience.  I have much higher highs, and am able to find actual enjoyment in some of this new and different experience, but I still hit the zombie-like phase.  The problem is that I can tell the difference now, and some of the reality of what is going on is sneaking it's way into the my thoughts and keeping a cheerful face on is harder in those moments.  I have tried to keep under control so Mark doesn't worry any more than he already is - recovering from major brain surgery is enough of a chore without having to also worry about me and how I'm doing - but I haven't always succeeded.  I have always managed to get back under control fairly quickly though (at least when he's watching me).

Mark really is doing well for what he's been through.  Pretty much all of the visitors have told him that. I think he's catching on though.  Tonight when he heard some family say that to him, his response was 'I'm going to take that to mean that I'm actually looking pretty rough, but that I have a reason too.'  I guess that pretty much sums it all up.

His left side is still really weak.  A few hours after surgery he was able to lift his left arm above his head and slowly hold up two fingers.  He could hold his left leg up.  He was even able to use his left leg rather well as he walked to the toilet (a good 20 feet).  I think that walk, and then a tiny bit of a wait to get back to bed took a bit of a toll on him (that and the swelling in his brain has had time to increase a bit now).  He decided to do all of this at shift change.  The nurse was more than awesome, but as it becoming apparent that Mark was going to be a while still on the toilet, the nurse asked me if it was ok if he did a few last minute shift change stuff while I stayed nearby.  We only waited about 5 minutes, but Mark was got weaker and needed much more help getting back to bed than he did to get to the toilet.  Today he can move his left arm up just enough to get it onto his stomach to hold a dish for eating, but sometimes needs help to do even that and he's having a hard time wiggling his left toes.  By the end of the day he could move his foot just a tiny bit, but it moved!

Physical therapy early this afternoon went fairly well (I wasn't there for the morning one, but I hear there was improvement from then to this afternoon).  They got him up and had him walk to the cabinets on the wall by his bed (maybe 7 feet away) and back again.  He did that with a just a little bit of help getting his left leg to move into place with each step, and then he went most of the way a second time and then back and then into to bed.  He was glad for the change - to be able to get out of bed and moving again.  I think he's already tired of being in a bed all day.  Especially since he spent his entire childhood living and working on a farm.  Moving and being able to do stuff is one of the things he has always taken for granted.  In fact, one of our jokes throughout our marriage has been that his talent is carrying stuff.  Well, carrying stuff and getting spiders and other icky bugs.  (He has many talents, but since I don't really enjoy carrying stuff - or getting spiders - he LOVES to do those things for me so I don't have to, we have always joked about that.)

The best news of the day: he can smile again!  The muscles on his face are working enough that he can do a fairly good smile!  This afternoon after we both took a bit of a nap (and apparently Katie snuck in a took a picture of us - holding hands with my head on a folded up blanket on his bedside tray and him in bed - sneaky Katie!) Mark out of nowhere just up and gave me the biggest smile I have seen from him in days!  It was so cute and awesome that I just giggled and laughed at how happy he looked!

His speech is still a bit slow.  He almost sounds as if he just woke up, a bit groggy and tired.  I asked him if it was just his body that was slow, or if his brain was also a bit slow.  He said both were slow, but that his body was slower than his brain.  I might have to wait for a few more days to start delving into the philosophical conversations we used to have.  I guess it's a good thing that I know how to be patient, and I know it's worth the wait - even if it never comes in this life, it will have been worth the wait.

For dinner he asked to sit up.  Not raise the bed to a sitting position, but put his legs off the side of the bed and eat as if he was sitting at a table.  We had to unhook a few things and it took a bit of help from the nurses to get him to a sitting position, but once he was there he held himself up really well.  He has pretty good trunk control (at least that's what I heard the nurses call it), it is just moving those left extremities into position that takes help from other people.

He's had a good appetite.  He ordered eggs and french toast for breakfast, roast and mashed potatoes for dinner, pasta and a roll for lunch.  There was also fruit and a dessert to go with each meal.  He has eaten almost everything on the tray - he does try to give me some of his food, but I am well taken care of in the food department so I only snitch the stuff he won't eat (cantaloupe and honeydew and one slice of his roast) and I make him share his dessert - who can pass up sugar?.  He has also gone through a lot of apple juice.

Mark is in good spirits, even though he dislikes the idea that he needs help doing things.  I have a feeling that this can end up being both a good thing and a bad thing.  He's already trying to do things he doesn't really have the strength for, which should be good practice and motivation to get better.  At the moment it's not a problem because he's still pretty much stuck in bed and can do little to hurt himself there, but I have a feeling there will come a time when the things he can't do, but tries to do anyway, will get him into trouble.  I expect that, for the most part, this independent streak will be a good thing far more often than it will be a bad thing, so I'm not going to try stop him unless it becomes a problem.


The kids got to visit with their Daddy for the first time post surgery!  We tried to hide all of the wires coming out him so their first impression wasn't of him with all sorts of wires everywhere.  For a while we were wondering if we should expose them to what their dad was going through, but in the end we decided that they would find out at some point (how could they not?), and to hide this from them would be of no benefit.  We have always tried to explain everything to our kids - even (especially?) the harder facts of life.  Of course we try to do it at their level ("Daddy had a cell in his brain that decided it wanted to do something silly and grow differently than how it was supposed to, and it got too big.  The doctors thought it needed to get out of there, so they made a pretty cool looking cut in Daddy's head and used something like a spoon and scooped it out.  Then they sewed him back together again!  How awesome is that?  Isn't it pretty weird that they sewed Daddy's head?  He's going to have an awesome looking scar!  And we'll need to be gentle with Daddy for a while until he feels better.  No more 'tackle daddy' games for a little bit.")  So, they came to visit in the evening.  We had them come in one or two at a time - just so we could focus on what the kids needed to feel comfortable.  As the kids get used to what's going on we'll probably start bringing them all in at a once, but we felt that for the first visit they needed more individualized attention.  Shelly took a minute or so to warm up to seeing her Daddy so unlike her normal Daddy.  She asked a few questions about what all the numbers on the computer screen meant and was fine, she then spent a little bit of time talking to Mark and a lot of time listening to my explanations as I talked to Jason.  He took a bit longer.  Jason wouldn't hold Mark's hand at first (not sure that he ever actually did - we didn't push it in the beginning and I forgot to pay attention later - he did give him a hug and kiss goodbye!).  He sat on my lap and asked a lot of questions - mostly about the numbers on the screen.  There wasn't a number he didn't want explained (and I don't know what they all mean, so I got to make a few guesses myself).  He did eventually get to the point where he would wander around the room to find more numbers that needed explaining.  He never really did get past saying 'hi Dad' to Mark.

Emily and Annie came in next.  Apparently there was a huge crowd of people in the waiting room, so our time with the two little ones was short.  Mark and I both got to give them a hug and kiss and say a few words, but then they left to make time for everyone to have a chance to come in before Mark got totally worn out.  I think we'll plan the kids visits for a bit earlier in the day next time, so we have more time without all the extra people waiting and so Mark isn't quite as tired.

All in all, life is still good.  I do miss the 'old' Mark at times, but I am grateful for what I have.  What I have is awesome!  I have lots (TONS) of love and support.  I have awesome kids and a caring husband.  I have amazing family members who have dropped almost everything to be here for me.  I have more amazing family who are doing what they can to help give the support we need.  I have friends and family too far away to much more than pray, text and e-mail, but they do that well and knowing they are out there is incredibly comforting!  I have food just magically appear around meal times.  I have the blessing of modern medicine and good doctors who know what they're doing.  Mark has had amazing nurses and staff at the hospital.  Yup, even (especially?) in the worst of times, there is still a lot to see of the best there is out there!






P.S.  My sister informs me that there are typos in some of these recent posts (and I read a tiny bit over her shoulder this afternoon and cringed at some of the poor sentence structure).  Please forgive me.  Most of these have been largely typed up at some obscene hour of the morning (while Mark is asleep and I can let his hand go for a bit to type).  I spent a while trying to find some of them, but finally decided that sleep was more important.