Email: (from aunt to me)

Thank you, Kari, for the update….

I’m glad he had the transfusion, and that they are trying to be proactive about the feeding tube, monitoring with the swallowing video.  I think they’ve done this before.

That being said, I would keep stomping my feet with any change for the worse.  Sometimes it takes the next shift of doctors and nurses, or one more voice to get things progressing.  I’ve had nurses who have gotten procedures stopped that would’ve definitely affected my health, for better or worse – once something is brought to their attention.  You and your mom are your dad’s voice for now, and are sorely needed.  Also, that means that you and your mom have to be getting exhausted, especially with your boys, and the driving back and forth!

 I pray for strength for the caregivers.  This verse keeps popping up in Psalms 80:  “Restore us, Lord God Almighty.  Make your face shine on us, that we may be saved.”  God blessed Israel, and He blesses us today.

Nana’s Notes:

Another doctor was in, female – very compassionate & understanding, encouraging Papa that it would not always be this way – it will get better.

Papa restless last night, some moaning – wants to die.  He said that yesterday & this morning, even to the doctor.

They say it will get better, but it isn’t.  Papa won’t eat the food or drink thickened liquid – he just wants water, just a little sip – he can [only] have ice chips.

I wrote out on paper, “do you want regular water?”

He wrote, “I WATCH CATCY,” mimicking with his hand the motion of drinking water from a cup.

I wrote, “do you want to rinse your mouth out?”

He wrote, in frustration, and with a star for emphasis, “I AMATS TO THE AVATUA TO AHE AVCAWA AT ACHHE” 

(interpretation: “I WANT WATER!”)

Rehab rep came in – they need to start doing a calorie count – important he is eating well.

Had blood in his sputum (mucous from throat) today.

Only ate a few bites of breakfast – won’t drink thickened liquids – needs nourishment.

 

My Reflections:

I love my boys, they’re awesome.  And I’m so blessed to have them.  I snap a photo this morning of a precious moment of the three of them together on the couch, just being their cute little selves:

They’re also blessed with an awesome aunt who is willing to come watch them today with her own adorable little toddler.  4 boys total; all day.  Very special aunt, indeed.

And I head off to the hospital yet again.

When I enter Papa’s room, Nana is more shaken than I’ve seen her since this whole ordeal began.  She’s fighting back tears.

“He just wants to die.  He just wants to give up, ” she tells me.

And Papa doesn’t look good.  He groans and moans and looks so uncomfortable.  He’s so weak and won’t eat or drink his thickened liquids.  He’s miserable.  Any optimism and exiteable talking and animation that was so common right before surgery is completely gone now.  He looks so old, so worn down.

He’s in and out of sleep most of the day, but at one point is alert enough to talk with Nana & me and we’re actually surprised at how alert he becomes.  He’s trying to tell us something and, as usual, we’re having a hard time understanding.  It’s a game of charades as he talks and does hand motions and we try to interpret his meaning.  He writes in the air as with a pen and then closes the “book” he’s writing in.

“Something the nurses are writing in their charts?” Nana guesses.

“Nah!, Nah!,” Papa shakes his head and waves her off in frustration.

I try to gather bits and pieces of his speech and hand motions and go out on a limb and ask something like, “Do you mean you’ve written in the story of your life and now you’re ready to close it?”

Papa’s eyes light up and he points to me and nods and says “Yeaaaah! Yeaaaah!”

Papa keeps talking and motioning, pointing up and air-writing in his “book” and looking at us for understanding.  I try to put the pieces together again and am almost embarrassed to ask it, but I do.

“Are you saying God spoke to you?”

Papa’s eyes get big again and he emphatically says “Yeah!”

And I tentatively go on, “And you’re saying God is telling you that you’ve lived a good life and it’s ok to die and go to heaven now?”

“Yeah!,” Papa exclaims and nods, looking grateful that we finally got what he’s been trying to tell us.

And I can’t believe what I’m hearing.

“But He didn’t ask our permission and we’re not ok with that!,” I quickly respond.

And I sit there, trying to keep this very heavy moment as light as possible.  Trying not to completely freak out.  Did God really speak to Papa and tell him this is it?  Is this really his time to go Home?

And after talking briefly longer, Papa becomes tired once again and drifts in and out of his uncomfortable sleep.  And there are a few points in the afternoon where he becomes so still that Nana & I look at each other wide-eyed at his bedside, wondering if he’s still breathing; wondering if he’s still with us.

I hadn’t planned to stay this long today.  J’s sister was planning to get home so her toddler could nap, but I’m just not ready to leave yet.  I can’t leave yet.  I’m not sure when I’ll be able or ready to leave.  I call her, voice trying not to break.  She’s understanding and awesome and tells me not to worry and to stay as long as I need to.

At some point in the afternoon I’m reminded of Papa’s sister’s email and realize that Papa has hardly been drinking or eating for days.  This can’t be normal.  Or good.  Could Papa’s current condition and state of mind be due to dehydration and lack of calories?  Are the nurses aware of this?  Aren’t they surely aware of this?  It is my usual reaction to let the medical professionals do their jobs and trust that they are doing it well, but perhaps this is the time for a little foot stompin’.

So I start talking and expressing my concerns to any nurses or doctors that come Papa’s way.  And they listen and take notes and start recording Papa’s calorie intake.  And I see that this foot-stompin’ thing is important, that shift-changing nurses don’t see the whole picture and that doctors have divided focus among their many patients.  But I also see that Papa’s case isn’t clear cut, his medical care is a balancing act, and that the solutions I thought were so straight forward are anything but.

But…..

When Papa’s neurosurgeon comes in to check on Papa, we are encouraged.  The first thing I notice is how he speaks directly to Papa, not us, and he actually seems to understand what Papa is trying to say to him (the vast majority of the doctors and nurses direct their conversation & questions regarding Papa to Nana & me, perhaps giving a smile and nod to Papa when he speaks, but looking at us to interpret).  Papa has noticed the way most of the nurses and doctors treat him too, and has tried to voice his frustration over this to Nana & I, going so far as writing it out so we’d better understand what he was saying.  At one point he wrote out:

I ANIT TO SPEAK TO

ANIT THE TEAM YOU’LL IT

ANK ME IT YOU

AT YOU ME ANIT ME

The gist of what he was telling us is that the nurses & doctors don’t speak to him, but to us. And he went on to say that they act like they care, but they really don’t.

And I must admit that Nana & I have become accustomed to acting as interpreter for Papa, jumping in to be Papa’s voice and ears whenever needed.  So naturally, when Papa’s neurosurgeon comes in and speaks directly to Papa, I’m initially taken aback.  But my surprise is quickly replaced by gratitude, for through this doctor’s approach, Papa’s been given back a bit of his dignity and voice.  The doctor listens to Papa’s discouragement and tells Papa he’ll let him know the “real deal.”  He says Papa’s current state should be the worst of it and improvement should be evident in the next day or two.  He is optimistic and our spirits (including Papa’s) are lifted.

Even further, a tentative plan for the next steps of Papa’s treatment is being coordinated with his many doctors and they communicate this with us.

We breathe a little easier, grateful for the rays of hope we’ve been given.  My visit closes on a far better note than on which it had begun.  I say my good-byes and give my kisses and head home to my brood at home once more.

My brood which includes a certain C Bear who likes to show off his crazy dance moves as J Jr. snaps photos with my phone (when I’m not aware):

 

What a crazy roller-coast ride this is.

 

Email: (from me to a friend)

It’s been a rough few days with my dad.

Had to have a blood transfusion for low platelets.

And be put on oxygen.

Has swallowing issues (which is common with brain surgery).  He has a significant risk of aspirating (food/drink going into lungs), has been put on thickend liquids, soft foods, but the risk is there regardless… feeding tube ruled out, IV fluids not an option due to his heart condition, stomach tube will be put in Friday if his calorie intake doesn’t improve (he only will eat/drink a few bites/drinks per day).  Very weak, want to encourage him to eat, but then if he does, there’s the risk for the silent aspirating which could lead to pneumonia – ugh!

Yesterday & today he’s been especially discouraged.  Saying he’s lived a good life and is ready to go to heaven and that he talked to God and God said it’s ok.  Saying he’s done dealing with all this.  It’s very difficult to understand his words, but with long “talks” you can pick up the gist of what he’s saying.  Tough, TOUGH to hear him say he’s ready to go, but then who am I to argue with his conversations with God?, yet also figuring a lack of food & water for days would understandably put anyone in a similar mental state.

He has a lot of weakness on his right side, can move arm/leg somewhat, but not much.  Can’t get around/support his own weight.  Looks like he’s aged 15 years in the past week+.

Still waiting on pathology report (come on already!), but from what I can gather we’re dealing with something serious here.  Tentative plans are for him to be moved to rehab early next week, then start chemo/radiation treatments a couple weeks after that.  There’s a new trial that they’re highly recommending.

Met with neurosurgeon this evening & he was encouraging.  Letting my dad know that for what he’s been through, he’s doing well and that he can go through this optimistically or pessimistically, but “it’s a hell of a lot more fun if you go through it optimistically.”  The doc feels that my dad will improve, that the stage he’s in is rough, but should get better w/in the next day or two.  My dad seemed encouraged after the doctor left and willing to keep on keeping on.

So that’s where we’re at currently.  Taking trips to the hospital every other day.  My mom has been there with him since surgery.  A bit of a roller coaster ride, feeling at peace right now, felt completely crappy this morning.  Bottom line, he’s in God’s hands & we’re trusting (trying our darndest) God’s will in all of this.

-Kari