Nana’s Notes:

One of the doctors started an IV drip for hydration.

Doctor talked about the importance of him eating & drinking or he’d have to have a tube inserted.  

Papa ate a good breakfast & drank some thickened water – he needs to keep drinking that throughout the day with my encouragement.  I pray I will be consistent with that.  He got really tired eating breakfast – had a hard time finishing the applesauce.  He rested with his eyes closed between bites.  No coughing during eating but cough and phlegm couple times after.

Another doctor explained all about the PEG tube [stomach feeding tube] and said the neurologist wants it put in for extra strength and nutrition.

[Yet] another doctor, an assistant of the neurologist, said the protein level in Papa’s blood is high.  Dilanton (the anti-seizure med) needs to be lowered because too much would be floating around in Papa’s system doing him no good – that could be contributing to his tiredness.

PT & OT here – Papa sleeping, but let them get him up & work with him.  Very tired!  Slept in chair.

Ate good lunch – tired, slow.  Choked a little with Magic Cup (pudding/ice cream type of dessert).

Anesthetist came by to introduce himself & talk to us – said he’d pray for Papa; obviously a Christian.

Friends came to visit.  Papa had been sleeping, but woke up & was alert & “talkative” while they were here.

Later seemed to be sound asleep when neurologist came in to talk about initial pathology report and likely treatment, as well as treatment risks (hair loss, nausea, tiredness, swelling, alteration of white blood count & bone marrow).  Papa would need to be monitored closely [during treatment], blood checked regularly, and CT scans done about every two months to check results.  With treatment, tumor likely to return in 3-5 years.  Still waiting on further testing of biopsy to make final call on what treatment will be best.

PEG tube to be inserted tomorrow.  Transfer to rehab in a few days.

 

My Reflections:

I spend the day at home with my boys.  I try to make up for lost time and determine to check off something from our “Summer Fun List.”  So we do a nature hunt in the yard.  And while the boys aren’t initially thrilled with the idea, they’re much more willing to oblige when I entice them with using my phone to take photos of our discoveries (because taking photos with a phone is super-cool).  The plan is to get our photos printed and posted in their nature journals, but this will never happen in reality.  Regardless,  we enjoy the “thrill” of the hunt today.

We find green leaves,

 

And a gray rock,

And flowers, a spider, and little green shoots.

And other “naturey” stuff.

We check off each item from our list.  And I just enjoy the time together; doing this not-much-of-anything except spending some time together.  In the midst of taking photos of our nature finds, I pause to notice our shadows, together, and I snap a photo of that too.  My favorite one of all our nature picts:

At some point I get a text from a friend with a welcome surprise:

Hi, Kari, I have a meal I’d like to stop over this evening.  I can bring it hot for tonight or cold if you’d rather have it another night.  Just let me know which and what time is good.  Praying for you all.

So my friend and her kids stop by with the gift of food.  And they stay for a bit to just talk and hold Little M and entertain my big boys.

And I appreciate this slow, un-rushed, no-agenda type of day.  Funny how such a huge upheaval in our lives can help me slow down and savor the little moments.  Moments like these with my boys, and with a thoughtful friend who’s willing to show up even when there are no easy words to say.

I later receive an email from another good friend, a friend who’s been so sweet to check in even while she’s enjoying time away with her family on vacation.  Her email fills me in on some funny stories of her family’s recent adventures.  Reading her anecdotes brings with it another gift of today, the much needed gift of laughter.  I write back to let her know:

Email: (response from me to this friend)

LOL – and I mean it.  That acronym is used way too often and most likely by way too many people who are actually not laughing out loud.  But I can use it here with validity because you truly got me to laugh out loud at my computer screen, with only me, myself, & I to hear it.  Made me realize that I haven’t laughed (for real) in a while.  Felt & sounded a little foreign at first, but I could feel a bit of that pit-of-my-stomach, don’t-quite-realize-it’s-there stress lift for a moment.  Felt good, and then somehow eroded my hold-yourself-together facade, and now I’m crying as I write this.  Crazy how allowing oneself to authentically feel joy, can then allow oneself (okay, myself) to feel sorrow.  Just this evening I found myself repeating a couple of [your daughter’s] sayings to myself – saying “it’s okay,” “you’re okay” to myself as I loaded the dishwasher and my brain whirled with stuff regarding my dad.  Really does feel like I’m straddling two realities of home & our family unit, and hospital & my parents, yet somehow neither feel “real” at the moment.  Find myself jumping anytime the phone rings, catch myself biting my inner lip, and wondering why my jaw aches (clenching my teeth at night?)… just a “wee” bit tightly wound these days I guess.

All that to say, your email was the highlight of my evening & the best entertainment of the day.  Truly did lift my spirits (even if I did end up crying, but that was probably a good thing too).  Picturing [your daughter] hurling deer bones over the balcony as well as the boys collecting them in the first place (and you taking this all “in stride”), also brought a smile to my face; as well as the vision of curious neighbors rubber-necking in their kayaks to witness the latest of your family’s escapades.

Keep me posted, I’ll keep you posted….

-Kari