Things I Have Learned

Lessons learned lately (not a comprehensive list):

• The Pittsburgh motto: "You can't get there from here" is not limited to the city itself, but includes the hospitals within.  No, you cannot get to the 7th floor of Mercy Hospital this week.  Except you can, except you have to take the green elevator to the 1st or 5th floors and go to the purple elevators, do the hokey pokey and say, "hocus pocus" three times.
  

• Someone has it WAY worse than you.  And he's right down the hall.
• This is what it's like to be a single, working mom.
• In grief: joy.  From the mud: a daffodil.
• Doctors breeze in and out, but nurses are the infantry.
• Many people who know Ian well didn't know his first name is really James.
• (some) Hospital food is not that bad.  Good, in fact.
• We produce, on average, a cup of SECRETIONS* a day, but we swallow them so we don't notice. (Ian doesn't have this luxury. Yet.)
• Sign your will before you can't write ;)
• This is how it looks when a community rallies.  These are the hands and feet of the Body.  This is how my peeps ROLL.   I can't wait to return the favor(s).
• It costs $4/day to watch teevee at the hospital.  I guess they have to pay for the incredible amount of single-use vacuum sealed plastic apparatus they go through in a day ...
• The "INFORMATION" sign at the information desk really DOES need some quotation marks.  Or the irony font (which has yet to be invented).  

And now, your moment of zen:

jailbreak! with proper permission, of course :)

*I haaaaaaaaaaaate this word.

Fun Fact

In the 1983 film Jaws 3D, the shark blows up.  Some of the shark guts were stuffed E.T. dolls being sold at the time.

It's a Beautiful Day

And nearly as beautiful in here.

If yesterday's events were caused by a virus, today the virus recedes.  Slowly.  No fever to speak of, still weak and tired but not wiped out like yesterday.  On the whole, much less snot coming out.  Today's menu included jello and an ensure.  Progress!

A showered Ian is now resting up for physical therapy at 3.

In case you missed yesterday - the MRI is "clear" and showed nothing to be concerned about.  Yes, he still has tingling in his left side, but his foot is better than it was.  It's possible his hand is, too, slightly, but he can't really tell.  His walking today was NOT off balance, but I would say he was lacking in some control of the right side, and looked dizzy/weak as opposed to numb with no center of gravity.  Translation: walk=good.  Sick=bad.  Tomorrow=less sick + more walk + some food.  Progress.

Prayers: sleep.  Poor bugger gets very little contiguous shuteye.  I spent the night last night and I would say he MIGHT have gone an hour without coughing... and when I say coughing, it's not the kind you fall back asleep immediately after.  It's snot-spewing choke-like hacking.  Phooey.

If it's a virus, that it's packed its bags.  We need another setback in rehab like, well, a(nother) hole in the head.

What I Wouldn't Give For a Mesa Plateau

Instead, we get this ^  ... up and down and sometimes UPSIDEdown.

On Monday, Ian got to try pudding and jello and gingerale!  He topped it all off with a chunk of chocolae cake and a glass of milk at the end of a long day of therapy.  You should have seen his eyes when he realized the cake they had (cruelly) baked in the therapy room and the slice she was bringing over with a fork was for HIM.  It was a glorious day.  He was strong, in good spirits, doing therapy without his oxygen supplement. His voice was strong and his "secretions" (if I never that word after we get out of here it will be TOO SOON) were lessened.

Yesterday ... we (his family support staff) took the day off: illness, tasks, etc ... I talked to him on the PHONE to check in.  Wow.  He sounded tired but good.

Today I got here just in time to see him right after his swallowing test (barium swallow with xray picture to see where the stuff goes), which he did not "pass."  So no good foods for him for a bit.  His coughs were thick and different and he had a fever.  And then he threw up his feeding.  Told me that he had tingling on his LEFT side as of the morning.  If you have followed since the beginning here, you'll know that his RIGHT side is mostly numb and tingling, and that we headed to the hospital when the left thumb started to tingle and he couldn't swallow.  So ... any move on the "more things tingling front" leads to immediate concern.

Luckily the doctors here are wonderful and hooked us right up with a scan and then an MRI.  Thankfully, those showed no new bleed and if anything, show a decrease in blood product or swelling from the operation itself.  SO... we don't have any cause for the tingling now except that it's possible some errant blood went carousing and caused the tingles.  In the meantime, it seems to me that he has a virus, but that would be a layman's opinion.  Who knows.

What I DO know is that he has gone at least 30 minutes without coughing, he no longer has the chills with fever, and he's sleeping comfortably.  His color isn't back to normal but it's not green.

What does all of this mean?  Just that every day is different.  We can rejoice in the victories and try not to be defeated in the setbacks.  We have hope, and hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit who was given to us. (Romans 5:5)

Prayer: for health and relief from the cough and fever.  Continued strength.  I'm staying the night- rest for me and that my back doesn't get any worse because of it (it's angry at the moment).  For a fresh, new day tomorrow.  Encouragement and stamina.

Thanks, y'all.

Ok ,Ok, update time!

My apologies to all our loyal fans; I haven't updated in a bit.

This is today:

We're gonna call it "resting comfortably."  He's gone nearly 2 hours now without coughing ONCE.  His body is resting, his throat and lungs and whatnot are cooperating.  Yay!

Today was a therapy day (he has 6/7 days therapy; Sat was his day off this week).  He did some swallowing attempts - I would call his success rate about 50% there (watching someone learn how to swallow is EXCRUCIATING, at least for me).  He lets an ice chip melt in his mouth, then allows it to gradually go into his throat and trigger the swallowing mechanism.  He has to concentrate on breathing through his nose while doing so, and that whole "not going down the wrong pipe" thing.  But in the midst of that therapy, he got a shout-out from the peeps, which made his DAY.

Next was occupational therapy where he put things together using pvc pipe and joints to mimic shapes on a printout.  Then he played solitaire (no, really - coordination, grasping, etc.  It's therapy!).  Then it was off to PT where they had him doing laps (no, really; three walks around the wing, two without an oxygen hookup).  

This was a short day; usually he will do that much, then have a break, then hit it again till around 3, but today he was done at 11. Tomorrow, apparently, will be grueling.

I have to say this over and over, but thank you SO much to ... all of you.  Just reading this means you care, which means so much.  The generosity and kindness of everyone of our friends, family, community and church body has been overwhelming.  We are SO blessed.

Today will be the first time the kids will see Ian in rehab ... the last time they saw him he doesn't really remember seeing them, so I am looking forward to this reunion.  Other than that ... not much to report.  Each day the same and different.  Forward motion (no steps back since the trach incident).  

This was him the other day: 

goofy smile but a smile nonetheless:

FYI Renz and Tucker: he's in the pack and play here:

This is where they put you if you're a bad boy and try to get to the potty on your own at night.
He asked nicely and now he's allowed to sleep in a big-boy bed.

Please, if you want to know something, ask away.  I have time, when at the hospital at least, to answer emails and (sometimes) update the blog.

Fun Fact

The first time the "f-word" was spoken in a movie was by Marianne Faithfull in the 1968 film I'll Never Forget Whatshisname.   In Brian De Palma's 1984 movie Scarface, the word is spoken 206 times -- an average of every 29 seconds.

How's It Gonna Be?

So I think we're settled on the "long road ahead" part of the journey.  Little hills and valleys but not as many bends.  Something like that.

Ian is back in rehab, still coughing up yuck, but less, it seems (at least during the day - fitful nights, according to his mom, of coughing and her suctioning for him).  The days are hard work - learning to walk again (his right side is still numb/tingling, that might not resolve but it's too soon to tell), getting in and out of beds, wheelchairs, dressing himself ... in all of these things he is making progress, to my eye.  His facial muscles are definitely better and his eyes look good ... unfortunately he says he still has double vision and pronounced dizziness when changing position.  Never quite sure whether that's a product of inactivity, lack of cheeseburgers or neuro damage.  Again, too soon to tell.

So each day is an up-and-down, I think, and for the foreseeable future.  That is to say, I doubt I will be able to come home and update: "today was a good day!" without some reservations.  But the truth is, every day IS a good day, and he IS progressing.  Questions abound, but they're none we have answers to, so we'll let them unasked as well.

Along those lines, just some helpful hints for everyone concerned for us:

1. "How are the kids handling things?" The kids are doing well.  They are loved on by family and community, we are all watching for sad episodes and handling them appropriately.  Audrey misses Daddy most vocally, but I'm sure Ezra would love to have him home just as much.  We are not, for the most part, mopey and sad while together.  We are a new "normal" that is a steady line, not a jagged one.

2. "How's he doing?"  He's doing.  He's working very hard.  Emotionally (for me) it is difficult when he gets into his wheelchair and a long line of drool falls out of his mouth... but then again, he's able to put his own pants on ... so it's not like he's not making progress.  His spirits alternate, as one would expect, but he's as sharp as ever and is so far seeming patient and determined and not overly frustrated and discouraged.

3. "How are YOU?"  I'm "doing."  Ian would tell you that I'm lousy at self-care until things get pretty intense, but I'm working on that.  God bless everyone around me for giving me gentle reminders to take care of myself; right now I am battling vertigo (a new thing for me) but otherwise I am doing well.  The drive is tiring; I have gotten some books on tape to keep me company.   I pretty much take one day at a time, although sometimes they DO come all at once ... I'm simultaneously thinking, "how are we going to deal with finances," and "I'm sure he'll kick this and be able to go back to work in time for it not to matter" and "do I need to get a bath chair," and "I wonder if he can help coach T-Ball this spring."  So mentally it's a challenge to cope, but when I re-center and ask God where HE wants my thoughts, He gives me that peace and wisdom.

4. "What do you need? Can I help?"  Check out the Helping Hands website for immediate, tangible needs.  Prayer is ALWAYS needed.  We have no idea how long of road this is, so selfishly I guess I will say: don't forget about us.  When things get "normalized" and we're doing the therapy/rehab thing in Pittsburgh or (eventually, hopefully) closer, we will still have struggles and whatnot - I just ask that as you come along side our family ... pace yourself.  Does that make sense?  Spread the love over weeks and months because endurance is different than emergency.

Yesterday I got a big smile (I forget about what), got to see him being a bit feisty (when his physical therapist turned her back he made a swatting motion, and I know he was thinking, "what a twit" about her, lol).  I also got my first snuggle in four weeks: