the scoop

"We are what we repeatedly do. Excellence, then, is not an act, but a habit." ~Aristotle

Thursday, March 24, 2011

No Pictures: No Need. Thankful Thursday

I always meant to start that here at No Sugar; Thankful Thursday to piggyback Foto Friday.  It just never got off the ground (perfectionist tendencies!).  But here's a start: I am thankful that ...

1. Ian has had 3 days of forward progress at therapy.
2. the staff is friendly and knowledgeable and no-nonsense.
3. the little victories, like keeping the drool in the mouth, using the facilities, making talking-like sounds, winking at me and giving the nurse the "sarcastic eyebrow".

I know I haven't posted much since my crabby post about the first night at rehab.  This post will be random and not comprehensive, but it's 1045 and I need sleep.

Ian is seen by 4 therapists each day, some more than once: Physical Therapy, Occupational Therapy, Speech Therapy and ... something else.  (I told you this wouldn't be brilliant writing.)  They start around 9 am and work the snot outta the boy; he gets a short break between sessions and then it's back at it.  By 5 pm he finishes up and has at least once slept from 5pm till 9am; he's THAT tired.

Everything they do is geared toward "life on the outside" and strengthening.  It's hard to tell which is neuro and which is plain atrophy from lying in bed for 2 weeks, but in any case, he makes progress every day.  Thing One has him squeezing giant clothespins and doing 2-lb curls.  Thing Two has him walking down the hallway, trying to find his mid-point balance.  Thing Three helps with the trach and talking attachment and swallowing attempts and speaking attempts and breathing.  Thing Four is terribly important as well; I just can't remember who that is :)

Tomorrow at 2 he will be having a feeding tube installed into his side.  He is THRILLED (no sarcasm) about this.  Finally, that blasted thing out of his nose.

He's learning how to walk.   He's learning how to talk and swallow and make his limbs obey.  (Give this a shot, would you?  Swallow without closing your lips.  Yeah.  That's what he's been doing (or not doing) for a few weeks.  Today, he swallowed an ice-chip's worth of water.  *HAPPY DANCE*.

Monday, March 21, 2011

Tired of Tired (with tired on top)

So, some things about me:

1.  I'm an introvert. If you're unfamiliar with the term, here you go:


Basically, an introvert is a person who is energized by being alone and whose energy is drained by being around other people.  Introverts are more concerned with the inner world of the mind. They enjoy thinking, exploring their thoughts and feelings. They often avoid social situations because being around people drains their energy. This is true even if they have good social skills. After being with people for any length of time, such as at a party, they need time alone to "recharge."


2.  I crave quiet, order and routine.

3.  I have physiological issues with anxiety.

4.  I prefer not to drive farther than 30 minutes away from home (see #3)

5.  I am fiercely independent and have only recently learned not to recoil from asking for help.

I have spent the past two weeks in more close contact and conversation with friends, family and strangers than I ever have in my LIFE.  I have ruled the waiting room with an iron fist.  I have learned how to navigate the doctors, nurses, cafeteria, elevators and parking garage.  I have driven an hour each way on my OWN.

Every day is different.  I'm so tired I can barely keep the plans straight.  Nurses have shifts (and rightly so), doctors go on vacation, patients transfer hospitals.  My kids, who are completely loved and cared for by some AMAZING folks in town, have yet to have a "normal" evening in over 2 weeks.

So.  no conclusion.  Just rambling.  This sucks, and I can't even complain to my best friend about it all.
-----------------------------------------------------------------------
Oh, but wait!  You want to hear about IAN!

He spent some quality time in this chair three days in a row: (it wore him out something fierce)



Because he was able to ditch the ventilator, he was cleared to head to rehab ... which meant a trek to a different hospital.  This is a GOOD thing.  A positive, proactive step.  Not without frustrations (don't these places communicate? why does the nurse think the reason he takes seizure meds is that he just had brain surgery?  The two are not related, and I had a heck of a time explaining to her ESL self that no, in fact, the brain surgery he JUST had did NOT produce seizures ...).  Why, when they came in and hung him from the luggage-scale apparatus were they off by 10 kg?  (uh, I do NOT outweigh my husband ... not even while carrying an extra person-unit during my ninth month).  Why did it take the respiratory nurse 20 trips in and out of the room to get all the tools she needed for a pretty standard procedure?  Why did it take so long to find an oxygen hookup for a patient arriving with a trach and O2 needs?  Why is the nurse looking at the computer details and the scribbling them onto a half-sheet of paper with no lines?  Gah!!!

The room is nice.  The view is nice.  The helipad is right out the window.  Technically there's a window seat (although it doubles as the air conditioner).  I may even be able to find the place again.  I reserve judgement about the staff until I see some competency.

I'm not discouraged, I'm exhausted.  Maybe gloomy and melancholy, at least in the moment.  I'd ask for help in cheering up, but I have no idea what to suggest!

Ian could use the encouragement; I will be hanging up his cards this week; now would be the time for the gag gifts to come back, I think.  Also, he's supposed to bring in regular clothing ... I was thinking some funny tshirts might cheer him, if you feel so inclined (inoffensive, please?) Nica guys - do you have your shirts made for this year?

Other than that ... it's only Monday of a very long week.  I do my best to update daily but it doesn't always happen, so assume no news is good news and I'll catch everyone up when I can.

*A special, giant thanks to the Hagen and DeJeu families for their selfless giving this evening.  I'm running out of phrases to express utter gratitude.*

Sunday, March 20, 2011

March 20 2011

Dear Ian,

About this time, two weeks ago, I crawled into bed fully clothed, watching you sleep, listening to your breath.  We both knew, even though we didn't say it out loud, that things were going downhill ... and watching you then confirmed it; your breathing wasn't right.  I fell asleep for a bit, until you walked (staggered) to the bathroom for a drink of water ... and I listened to you cough as you tried to swallow.  I let you settle back into bed, walked downstairs, and called the ambulance.

We spent a few miserable days in the step down unit; the doctors still wanted to wait and see.  Your ability to move and speak and breathe deteriorated.  I had a brief fainting spell and you held my hand over the end of your bed as I lay on the floor, surrounded by hospital staff.  I was terrified they would take me away from you, and embarrassed that more people were attending to me than you at that moment.

Your Nicaragua buddies came to visit ... little did they know they arrived just in time for your breathing ability to go seriously downhill.  Shortly after I kicked everyone out and shut the door, we exchanged some words ... you were hell-bent on pulling the oxygen tubes out of your nose and I was shouting that you were NOT allowed to not BREATHE and to stop fighting us, dammit.  What I didn't realize at this point was that you were already oxygen deprived and starting to become "not you."  The guys came in and gave you silly presents; fuzzy slippers, nerf guns to shoot the nurses, a whoopie cushion.  But to no avail; the nurse pushed the button, you were "coded" and the breathing team appeared, hustling you off to the ICU.  Worst. Night. Ever.  Later - Dad says around 2 am, he went back to visit you ... and it was at that moment that you stopped cooperating with the different oxygen mask, and the nurses ... and stopped recognizing Dad or me.  The look of fear and anger in your eyes was so intense, and so NOT you ...

A week ago yesterday, you were zoomed off to your second brain surgery!  We were assured the A-Team was on the case (not THAT A-team!).  In half the time it took to remove that pesky tumor, the doctor removed what he could of this clot and you returned to your ICU room.

The next few days had ups and downs; you squeezed hands and gave thumbs up, but you developed pneumonia and a collapsed lung.  You wrote letters on paper or with your finger on the sheet; we tried as best we could to both communicate and allow you rest.  You begged for water but I could only provide a swab sponge to the mouth, and even that had to be suctioned out, lest you get more water where it wasn't supposed to be.  Your mom sat vigil in your room ... at one point you kicked me out with great fervor, and your mom the same.  We didn't take it personally.

The church.  Oh my.  How they've taken care of me/us, met needs I didn't know we had, covered us in love and prayer.  Your Nica buddies and Bible study pals have made regular visits, as have the pastors.  The cards!  I can't wait for you to read them all - sweet, funny, hand-drawn ... awesome.

I love you so much.  You've dropped so low and risen so high these past two weeks ... they're already joking at how insufferable you'll be once you beat this thing.  I want this ring back on your finger and the light back in your eyes.  I want that Saturday night back, when we all lined up in bed and read stories together.

------------------------update for today ----------------------------

Most all the wires are out.  Just that attractive feeding tube in the nose, and you can see the hose leading up to the trach.  He is completely off the ventilator, breathing on his own (that tube provides a slightly higher oxygen content, but does not force air into him at all - changes his air from 22? to 30% oxygen, I think is what the nurse said).

He is weak and tired.  They have twice had him moved into a chair-contraption to work on strength and clear out his lungs (he's able to cough the yuk out).  Just the effort of that move and coughing tires him out so you'd think he was sedated, but he's just THAT tired.  It's hard to see a strong man so weak, but it's so amazing to see him breathe on his own ...

Audrey and Ezra both got to see him today, and he them.  We didn't get a smile out of him, but he did wave  He was just too tired to keep his eyes open long, but he knew they were there.  Ezra said, "He's sleepy, and he'll talk when he feels better."  And Audrey told him all about her weekend with Gramma.

Next: rehab.  The nurse seemed to think it would begin at the hospital and not another facility, so we'll see ... the key to moving from the ICU was the breathing thing ... next will be swallow tests and a smaller trach and A TALKING ATTACHMENT.  Food? swallowing on his own?  I have no idea what this week looks like, but I know it's going to be an exhausting one for all involved.

The kids are taken care of, I'm able to visit every day, people are standing by to provide us with meals and just about anything we could think of.  If you are one of those people ... I can't even begin to express how thankful I am that you are in my life.  To have our needs met so seamlessly has been such a blessing and a relief.

Saturday, March 19, 2011

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

Friday, March 18, 2011

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?