Fun Fact

Matt Groening, creator of The Simpsons, incorporated his initials into the drawing of Homer.  M is his hair, and G is his ear.

Sunshine and Daffodils -March 19

Yesterday was a much better day.  I don't apologize for the last post's tone, as it was accurate to the day.  But yesterday was fresh and new, and Ian was MUCH better.  Praise God.

He has both chest tubes out, spent most of yesterday breathing on his own, is off sedatives and pain meds.  He still oozes nasty from his trach but he is able to cough to get the stuff out, so that's a step in the right direction.  He is physically weak - I watched him get cleaned up and he had to be rolled and held in place to clean his back ... but there is still movement and strength in all his limbs.  His eyes and face look better, and I'm PRETTY sure we got 3 smiles out of him: one when Audrey went in to see him, one when one of the Nica guys said something fun (I wasn't in the room but saw them all laugh) and once when I told him it was time for his bath, but that his nurse was not hot (Frank got a big chuckle out of that).

Today I am going to get some things done around the house and town.  This is key:

That woman in front of you in the grocery store with the spaced-out look?  Her husband could be in the ICU, fighting.  That other woman with the screaming toddler who is writing a check? could have lost her wallet in the accident.  That impatient driver behind you who honks and swerves out around? could be desperately trying to see his mother one last time before she passes on.

You have NO idea what is going on with the people you encounter every day.

Be kind, for everyone you meet is fighting a hard battle. ~Plato

March 18 2011

I was always kind of ready for this: husband, barely responsive, lying in a hospital bed.  Five years ago a look into the future held such ugliness and grief; but as year after year came and went with a healthy, brain-cancer-beating husband, that image faded.  Still out there somewhere, but not hovering, casting a pall.

And now, here we are.

Don't misunderstand; I've not given up hope of a full recovery.  I just know that in any case, this is a long journey.  Ian is likely to be frustrated - with me, doctors, himself.  I am likely to be discouraged - can't do much to help him, sometimes the little I can do (stay by his side) he doesn't want, trying to maintain some kind of "normal" for the kiddos... not to mention that my best friend isn't able to talk to me about the day's events.  Sad.

The past few days have had their ups and downs.  He was able to breath off the ventilator for a bit, but that tired him out so much that he wasn't able to do it at all the next day.  He had a chest tube removed yesterday and one should be removed today (this was to remedy the collapsed lung).  He is off all pain meds and sedation for the most part (instead of a constant IV drip, he has a shot as needed).  He is no longer in restraints!  All day yesterday he did very little opening of his eyes.  Is he tired? depressed? coming off all the meds? can't tell.  I can say with NEAR confidence that he hasn't given up - he's just tired.

Taking the kids in today to send them home with grandma.  Audrey and I will go in to see Daddy as we did once before, and I am praying for the right words to comfort her.  What a blessing it would be if he was able to open his eyes and see her there!  I guess I can pray for that, although since he won't be able to speak, I don't know if that's better or worse for either of them.  Hmm.

Yesterday was a down day.  Today just is, at least till I get a better picture at the hospital.  You know you're going to get the straight story from me, so there it is.

To my pray-ers:
Everyone spirits, for today and the long haul.

That I'm able to coordinate the truckload of volunteers willing to help so I can get the kids taken care of, food on the table and misc. tasks under control while I do the daily commute.

For complete healing!  specifically: he needs to breathe and swallow.  If he has to be prone forever, I'm ready.  I just can't nurse a man who can't keep his breathing and secretions where they need to be, at least from home.

Patience for the staff: we've bent the rules a few times and the nurses have been gracious. I don't want to annoy any of them! I try to treat them with respect even when I don't think they've earned it, try to smooth over the edges when at all possible and stay out of the way while they do their jobs.

1 Samuel 3:18:  So Samuel told him everything and hid nothing from him.  And he said, "It is the LORD; let Him do what seems good to Him."


Lamentations 3:19-38 (New International Version, ©2011)

 19 I remember my affliction and my wandering,
   the bitterness and the gall.
20 I well remember them,
   and my soul is downcast within me.
21 Yet this I call to mind
   and therefore I have hope:

 22 Because of the LORD’s great love we are not consumed,
   for his compassions never fail.
23 They are new every morning;
   great is your faithfulness.
24 I say to myself, “The LORD is my portion;
   therefore I will wait for him.”

 25 The LORD is good to those whose hope is in him,
   to the one who seeks him;
26 it is good to wait quietly
   for the salvation of the LORD.
27 It is good for a man to bear the yoke
   while he is young.

 28 Let him sit alone in silence,
   for the LORD has laid it on him.
29 Let him bury his face in the dust—
   there may yet be hope.
30 Let him offer his cheek to one who would strike him,
   and let him be filled with disgrace.

 31 For no one is cast off
   by the Lord forever.
32 Though he brings grief, he will show compassion,
   so great is his unfailing love.
33 For he does not willingly bring affliction
   or grief to anyone.

 34 To crush underfoot
   all prisoners in the land,
35 to deny people their rights
   before the Most High,
36 to deprive them of justice—
   would not the Lord see such things?

 37 Who can speak and have it happen
   if the Lord has not decreed it?
38 Is it not from the mouth of the Most High
   that both calamities and good things come?

Sunday's Spirit

(saturday)
And God gave me the patience to wait for the surgery to commence, to continue, to complete.

And God gave me the extra breath to breathe while waiting to hear back from the O.R.

And God gave me the ability to rest in Him.

And God gave me the grace to relax about who went in to see Ian, and when. ;)

And God gave us the gifts of banter, laughter, and distraction.

And God gave me the voice to ask the tough questions and absorb the answers.

And God gave us the supernatural strength not to take our stress(es) out on one another in the waiting room.

And God gave me the peace to go home, for the first time in a week. To face an empty house and the shadows of past and future.  To attend worship services and bask in the love of the Body and return to the hospital refreshed and encouraged.  And God's angel is here to support and encourage.

Sunday Update:  Surgery yesterday started at 7, ended around 1230.  As was the case with his previous (10-hr) brain surgery, the time went surprisingly quickly in the waiting room.  I was blessed immeasurably by the presence of my best friends from all phases and time zones of my life ALL IN ONE ROOM AT THE SAME TIME.  I'd envisioned a beach-front retreat house with lapping waves and umbrella drinkies, but I'll take the hospital cafeteria and waiting room if I must.  Wholly uplifting and made me cry with joy.

The doctor said he was able to remove the clot and relieve the pressure on the brain stem.  He saw no obvious cavernous malformation (the raspberry-shaped goober thought to be causing all the trouble) but it's possible the offending party could have been swept away with the goo.  He wasn't about to go poking around and risk injuring the surrounding tissue.  Ok then!

Peripheral issues: pneumonia, a collapsed lung, a fever at one point, a slight tear in the trachea.  He has a feeding tube, a breathing tube, a pulse oximeter, leg compression pumps, chest tubes, an IV and a vascular access catheter (like an IV in the front shoulder/chest region).  He's taking antibiotics, food, blood pressure meds, blood sugar meds, anti-seizure meds, sedatives and sustenance.  All through the shoulder.  Whew.

pre-surgery, Friday

BUT.  Today he is the best he's been in days.  He looks better and stronger.  I was able to see him during a good response time for him (out of the anesthesia enough) and he did lots of responding; in addition to the cursory head nods, he shrugged his shoulders and wrinkled his nose and rolled his eyes (walleyed as they are) in response to questions and comments.  He was trying to tell us something we couldn't figure out, which I'm sure is incredibly frustrating, but: I GOT A HUG.  I'll take it.

Now what?  More prayer.  We have a long road ahead of us.  Ian is strong - physically, mentally, spiritually.  What happens over the next few weeks with his brain and body is going to hinge on all three.  I pray for relief of the hiccups, healing of the "minor" issues, and a return to swallowing as the first neurological progression.  He still might need a tracheostomy, which I think from the outside sounds like a setback? but is actually a measure intended to relieve stress on the whole throat system and make it easier to clear his throat of crud even if he can't cough or swallow.

After that, the hope is that we will have the slow return of feeling and use of his right side.  As anyone with any kind of deficit in this area knows, this will take physical therapy and a great deal of time and patience ... or, a miraculous healing - we'll take either one, really.

I'm back at the hospital for another overnight.  Preparing for the logistics of the future time ... too bad my beloved logistician is indisposed.

Fun Fact

Mario, of Super Mario Bros. fame, first appeared in the 1981 arcade game Donkey Kong.  His original name was Jumpman, but that was changed to Mario to honor Nintendo of America, Inc.'s landlord, Mario Segali.

Friday Friday

I feel light this morning.  It must be 1. the hospital food, 2. the fabulous brown shirt (wink @ Danielle and Kelly and Joline), oh, and the 3000 people praying for me.  Yup, that about covers it.

Yesterday was a day of blessings.  Ian's rest was quite calm, in and out of twilight sleep for most of the day.  He was Ian again - he can't smile with all the crap in his face, and I doubt he'd be in the smiling mood, but he is Ian under all the wires and fuzzy drugs.  We keep him mostly "sleep state" because the breathing tube is quite uncomfortable.  His oxygen/breathing stuff is better controlled. Talked to the respiratory specialist this morning and she was happy with the progress.  The scan of his lungs showed no pulmonary embolism, which was a possibility.  Another check in the + column.

On one of those visits, Ian was able to use his left pointer finger to spell out messages to us on the blanket.  One was "It hurts not to talk" - and when I said, you don't mean physically, right? you mean mentally? he nodded yes.  And then he wrote "saline" which meant, give me food, darnit (we had much feeding tube drama before this - he probably has a grumbling tummy and doesn't realize he's receiving nutrition).  It's just like him to write that and not "FOOD" like a normal person.

Later he was able to write on some paper with a marker; he wrote "I want to breathe" ... probably meaning on his own without this stupid tube.  But in any case, a noble goal.  (we assured him we would like that very much as well but he was going to have to wait till after surgery to expect it)  He also wrote, "sedation" and some other words, and indicated he wanted to not be awake so much.  The doctor talked to him about going ahead with the surgery, and he gave the thumbs up.  He made his mother's day when I let him in on her fender bender from that morning and he gave the thumbs up again (her driving history is a bit of family lore). 

In there somewhere (hey, I told you, my time line is fuzzy), Kelly and Danielle, dear friends, "conned" me into going out for food and MADE me walk through the rain (if you know me, you'll know how hard that was) and up a hill (if you know me, you'll know how hard THAT was), but it was, of course, a blessing to see them and a good idea to get some fresh air.  My bestie Nicole came in the evening and we had a quiet dinner in the dining hall like normal adults.  It was a refreshing day.

I have God's peace.  I have the amazing sense of everyone who is praying for me.  I have had mercifully few stomach issues or panic episodes (see above in the "knowing me" dept).  THIS MORNING I WENT TO THE HOSPITAL STARBUCKS AND BROKE MY 6-DAY FAST THEREOF.

I am at ease because I know that Ian is resting.  My bestie from Norfolk is on her way.  My brothers-in-law are headed in.  The body of Christ is alive and well and every few hours I check facebook and email and I'm overwhelmed by the pouring out of thoughts, prayers, wishes, scriptures, encouragement, offers.  I have an arsenal of baked goods and "threats" of more coming.  My kids are on the world's longest playdate.  I am blessed.

Today is the long day.  Knocking this out and getting through the night.  Praying between breaths for the team, appointed by God, to perform this incredibly delicate procedure tomorrow.  It is my understanding that surgery will get underway around 7 am and should take 6-8 hours.  I will certainly post when it has begun.

My life verse: Jeremiah 17: 7-8.  Scripture's job isn't to comfort, but this verse is my comfort.

Yesterday worst ever. I give it an F. In fact, I might refuse to participate in March 9th ever again.


Honestly, the day is a blur, with more tests, no improvement, more weakening, much more phlegm coagulating. A tired Ian was losing interest in using his suction thing. His feeding tube finally got installed but then no food was administered. He had several xrays and whatnot.

He had another MRI; this one is the latest spiffy good picture kind. The surgeon ordered it. He checked in after looking over the results and said at this point (whereas he had been extremely tentative), since he wasn't happy with Ian's condition (worsening) and the picture made it seem like surgery might not necessitate much travel through healthy tissue, he was leaning toward surgery. Shock and nausea - the surgery is not a pretty picture. Very risky. Then again, it's forward motion ... and so far we're rolling backward.
 
Move on a bit later (timeline fuzzy, but evening ish): his breath was shallow and the phlegm interfered.  He was getting more lethargic.  The breathing specialist came up and said he had to get his oxygen levels up or he was headed elsewhere to get that done.  They did some big suction - through the nose and all that.  That helped allow him to breathe but his body was still not doing what they wanted.  His BP was up and his O2 was down.  They did the 100% oxygen to no avail.  They cleared us out of the hall and pushed the button: they "coded" him.  The cart and the mass of people came.  They wheeled him to ICU.  They did a different mask, worked on his BP ... not much of a change.  He started to become delirious.  He wanted to see me, but when I got there he asked where we met, and had much confusion in his eyes.  He became rather belligerent about pulling his mask off, moving around on his bed like a drunk person. 
 
Again, time line fuzzy, but the ICU part is middle of the night stuff.  Then they ended up putting in the breathing tube, sedating him, restraining him (he's very strong; when I was there, his hands were tied down but he was using his good leg to kick us).
 
After the tube and the sedation, he had rest.  He hasn't had it mostly since we got here, so it was welcome to see, even though it means his face is barely visible under all the tubes and tape and wires. 
 
He is now getting an angiogram; more clear pictures.  We are expecting to hear from the doctor within a few hours, and I expect that he will tell us he plans to go ahead with surgery Saturday.
 
What this means, quite bluntly: He could not improve, he could have new symptoms, he could pass away from surgery.  He could RECOVER.  These symptoms could dissipate and disappear. 
 
We're circling the wagons.  Family headed into town from out.  I've done the all-day waiting for brain surgery thing before, but this one carries much more trepidation.  The kids haven't seen Ian since Sunday.  I haven't seen MY IAN since Sunday, either.  Our last sort-of conversation was a fight about how he wasn't allowed to not breathe, so he had to listen to what the specialists had to say.  At that point, though, the oxygen deprivation or more brain trouble was causing him confusion and ...
 
So now we're here, waiting.  That's about all I can say right now.  Except, naturally: pray.  The next two days ... then Saturday ... all powerless, except for prayer.  Dr. Wecht's hands, the surgical team. To God be the Glory; great things He has done and continues to do in our lives.