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:

Trach Me With A Spoon

Update on the past few days:

Ian coughed his fool head off and because the wound had not closed fully underneath his trach, the sucker moved.  When they tried to suction it via catheter, they weren't able to get the tube to go down ... so checking for blockage, to make sure he was breathing, all this stuff ... moved him to a medical floor to watch him all night (Sun) till the ENT guy could take a look.  We were told he would be right back down to rehab in the morning, but then the "procedure" wasn't going to be till Tues (today) and so they cleared out his room (I knew once I hung those cards we'd get booted) and THEN they came bedside and shoved the thing around and it was fixed! but then we had to be re-admitted into rehab, meaning a "hurry up and wait call the insurance for clearance, Clarence," etc.  Gah!

SO.

Ian is now ensconced in rehab once again, with a fixed trach.  When he smiled at me today (actually, he was laughing at me, because I was fighting with a lounge chair), it looked like a genuine, full-face smile.  I'll take it.

If you want to send something, send it to:

(James) Ian Maize
UPMC Mercy
Floor 6E  Room 6004
1400 Locust Street
Pittsburgh PA 15219

March 29 2011

Brief update for those of you not following on facebook: they fixed his trach yesterday.  I haven't called yet or been in to find out if he's merrily walking down the halls or not - update(s) to follow.

Update and FYIs

1. This Blog is called No Sugar because I tend to "shoot from the hip," as it were.  A friend helped me name it.  Unfortunately the web address has to be hold-the-sugar because some weirdo already has a blog at "nosugarblogspot" so there you go.

2. If you are not on facebook and want to get an email as soon as I post something new here, scroll down on this page and to the right you will see a white box where you can enter your email.  You will have to enter a "funny word" to verify you're not a spammer and then you will get a confirmation email you will have to click on ... and that's it.

3. At the beginning of the year I took out my "Book of Useless Information" and entered all the fun ones.  They are scheduled to post once a week; I'm not scouring the net for weird facts while at the hospital (sorry, Emily, my secret's out).

---------------------UPDATE---------------------------

Well it was supposed to be another full week of therapy.  Ian is getting stronger on that front and despite his incredible weight-loss program (down 50 lbs, last count), his color is good, his limbs get stronger, his ability to communicate is good.

However last night one big cough and subsequent suction dislocated his trach.  We don't know yet to what extent; he still breathes just fine, but I don't think much is coming from the trach but instead from the ... well, gaping flesh hole underneath it, in his neck.  Sorry - it's gruesome.  So all that to say, we are now waiting for them to tell us when they will take him into surgery, check everything out, reinsert if necessary, possibly address the "wound" by stitches? or something.

Sorry I can't give any more info- we don't have it.  But other than probably being annoyed he can't go for more strolls down the hall today, Ian is doing fine.  He did share with me yesterday that he's worried about the future... we didn't go into detail there but I would imagine it runs along the lines of, "what will I be able to do, not do, will I go back to work or sit at home and sulk, what will that look like, etc."  So your prayers for his neck and head are very much appreciated.

Also, I want to point out that his current condition has NOTHING TO DO WITH BRIAN FIFE OR ANY OF HIS AFFILIATES.  lol.

Fun Fact

Charlie Brown's father is a barber.

March 25 2011

I can't believe it's been a week of rehab already.  Today was a big day; trach downsized again, feeding tube installed into stomach instead of nose (woohoo!) and a fabulous accommodating haircut via our neighbor, Karen.  Awesome.  (I am NOT attempting a shave with that trach in place!)

Today was hard work; same drill with all the therapies.  In speech she asked him to name as many words that start with "M" as he could in a minute.  His words included "mitochondria" and "myriad."  Of course they did.  No cognitive difficulties here.  

In just a day his balance has improved.  He's far from walking on his own, but he finds his "center" more readily.  That right foot will NOT cooperate so it takes quite a bit of effort to flop its size 13 self where it needs to be.  But he is determined and pushed himself quite a bit today.  

Tomorrow: rinse, repeat.  Sunday he gets a sabbath! and Monday back at it again.  

They are focused on getting his trach out.  I have mixed feelings about that, but I suppose since he does have a strong cough, he'll be able to get rid of the crud still in his throat.  (true love is suctioning cupfuls of snot out of your husband's neck-hole while chewing a mouthful of trailmix.)  Anyway, so ... swallowing is still a high priority, for all of us.  Today he coughed a bunch up into his mouth (and made a TERRIBLE face), which means he's pushing that hard, which is great.  So I'm encouraged and I hope he is, too.  

Many thanks to everyone who has called, emailed, txtd, posted, mailed, cooked, kid-wrangled, etc for us.  

I can't believe we're approaching week 4 and I've hardly had to concern myself with the "home front" at all.  Blessed!

I hung the cards, we've got balloons.  Visiting is limited because of his busy schedule, but I'm sure tangible forms of encouragement are/will be appreciated.  He's got at least another full week here, probably more.

Prayers:
Ian -swallowing.  that would be nice.  did you try that exercise yesterday?  difficult, eh?
overall strength: breathing and swallowing and speaking go hand-in-hand with overall strength and muscle use.  Incredible how the body sustains its parts via other parts.
Peace and fortitude.  
Rachel - self-care.  Starting to experience physical symptoms of prolonged stress.  Need physical and mental rest.  Alertness for the drives back and forth, safety.  Wisdom for when to ask questions, when to sit back and listen.
Kiddos -  what to say here?  protection, comfort, assurance that God has His hand on Daddy and we can be confident in His plan.