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.

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*.

Dedicated to My Love

Our Wedding Song

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.*

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.

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.

It's a rainy day today. I love rainy days.  (They usually cheer me up) I'm sad today, but the weather is at least matching.  no blaring brightness and "how can it be sunny out there when things are so terrible in here - the audacity of that sun!"

The hospital window is dirty; it's probably been years since they've been cleaned.  Then again, how would I know how dirty windows get downtown? Anyway, I have this giant urge to clean it, but of course it does not open.

I decided to spend some time on the computer today, to keep my hands busy and my brain ... elsewhere kinda, but also to do the "normal" thing; I like to see people's updates on facebook, talking about normal goings-on, even when sometimes I resent them at the same time. 

Ian was confused and got himself out of bed last night; I woke up to him sitting on the floor, unattached from all his wires and iv.  Bummer.  He accidentally pulled his feeding tube out this morning (it's still not installed all the way), so that had to be re-inserted. No fun.  He gurgles and half-chokes on phlem, which is so hard to listen to ... I've gotten to the point where I can tell by hearing if he's having trouble reaching his suction tube or it's just something he has to resolve on his own.  It makes me feel very callous to do nothing, but as everyone who has someone ill knows, when you can't do anything, you feel helpless.

That's all for now.  

Ian Maize update, March 8 11 pm

1. God bless all of you who are praying, have graciously offered to help in so many ways.  My home and cat and kids are taken care of and all I need focus on is my husband. I am SO SO thankful.

2. a summary of things: Ian has a cavernous malformation on the brain stem. Basically this is an angry blood vessel that looks like a raspberry and can ooze blood. This has nothing to do with his tumor; it is not cancerous. They found it during a routine scan at the NIH for his post-op from the tumor. One person there commented that she was surprised that the person whose scan she was seeing could be walking, let alone be asymptomatic, as Ian was.

This was in Feb.  We were referred to neuro people in the Pittsburgh area. We saw both a radiation specialist, who would do a gamma knife procedure if called for, and a surgeon, who would remove the malformation. Neither doctor recommended treatment because he had no symptoms other than a tingling thumb on his right side, at that point.

Unfortunately it took roughly a week for things to go downhill; his hand became tingly, then his foot and leg, then his face. On Sunday morning his right side felt worse and his left thumb tingled. We went to church and his gait became much more labored. At bed time, he was unable to swallow water. We went to the ER at UPMC. We've been here ever since.

At this point, his physical symptoms are complete numbness on his right side; he's able to move his foot and leg and his smile is even, but his right arm refuses to behave. His left hand tingles but it hasn't gotten any worse. However, he can't walk and he still can't swallow. He now has a feeding tube (although we are still waiting for that procedure to be finished; frustating!) because he can't swallow. He has to use a suction thing for his saliva, which is a constant thing and that means he doesn't sleep much. He gets the hiccups often. He can talk, but it's quite squeaky and raspy and you have to interpret closely.

3. the prognosis: in short, no one has any idea. The data available doesn't present a clear decision on this thing; there are 4 options, one being a giant needle through the head to suck out the pooling blood, which would not rid us of the malformation, which could bleed again. Second is to the wait and see method; apparently the blood is apt to reabsorb and the symptoms would then subside. There is no time line available on how long that could take (meaning weeks or months or never). Third is to do the gamma knife (radiation) procedure, which is not curative, and is a controversial treatment for this situation, and fourth, surgery, which has a large chance of causing collateral damage as bad or worse than his current situation. We are stuck between two rocks and two hard places.

Right now we are on the wait and see track. From what everyone has said, it's safe to say we're going to be at the hospital for 2 weeks minimum. They monitor him, give him meds to control his blood pressure and blood sugar, keep him on a steady dose of steroids to combat swelling. The surgeon really doesn't want to operate, even though Ian would probably lean that direction, just to take SOME action.

This is a kick in the pants, seeing as we just celebrated our 5 years cancer free. Ian is understandably crabby and discouraged,and it's quite hard to see his spirits down, just as his body is failing him.

Me: it's minute to minute, day by day. I've only had one meltdown (inducing a crash cart and way too many personell) but God has given me the strength to carry on little sleep, an angry stomach, and fears I can't even put into words. I'm not putting a happy face on for anyone, but I have a ton of support both here (family) and at home. Did I mention how grateful I am?

What you can do: pray, pray, pray. We have to decide, at some point, on something. The waiting is terrible, but the decision at the end of the (indefinite) road is just as difficult. There is fear, anger, intense sadness, shock/numbness, depression and loneliness, and that's just me. The kids are mostly oblivious, but at some point they probably need to see their Daddy, in all his sickness. Pray for their hearts, and that they be protected from fear as well. Ian is crabby and discouraged; two traits that are quite unlike him. Pray for his ability to ... endure, I suppose, mentally as well as physically.

If you would like to send something, here is his address:
James (Ian) Maize Room F787
UPMC Presbyterian
200 Lothrop Street
Pittsburgh PA 15213

Please don't call the room phone; we have both our cell phones here set to vibrate so everyone can get the maximum amout of rest. I will answer phone calls when I can and reply to texts. My phone is easiest as I have a devil of a time figuring his out sometimes.

If you have any questions, I would be happy to answer them. I'm sure I'm leaving something out here, and since it's all very confusing, I wouldn't even notice an omission. (also functioning on not too much sleep).

I think the first note I wrote (that facebook ate) was better, but ... anyway. Now you're up to speed. God bless you all and thank you so much for your love and support.

Fun Fact

The Ouija board is named after the French and German words for "yes" -- oui and ja.