This week has been filled with food. And lots of it, going in to Kris' room tray after tray. At least looking at the dishes, my hands, and the many containers filling my fridge. I've been to the grocery store twice in a week, along with Costco. Not a huge trip to Costco, I managed to walk out of there spending $46.00. I know, I'm pretty bad ass huh.
Anyway....Happy Saint Patrick's Day!
Our normal lab and doc day. Day 64--- One that Kris is too weak to walk in and out of, and so we choose a wheel chair straight from the parking lot. He waits as I run to park the car. Always offering that side dimple smile as I make my way back. Holding my huge basket purse like we're going on a hike in the mountains. Only this time I'm armed with extra pants--(hellobathroomincidentonmonday) along with Gatorade, a little hand towel, and puke bag.
We'd make our way to labs. And down to the basement to see our doctor. Remember we are switched back to our original doc. She's a sweet lady, but I'm still grappling with the change. Change and I don't do well. I'm a huge creature of habit. If it's not broken, don't try to fix it type of gal.
Sitting in the waiting room waiting......and waiting.....and waiting......and waiting...and he's nodded off. And I begin to check around. Asking, what the heck, we've been sitting here almost an hour. I have a dude to get home and back into bed, or at least fed.
"I'm so sorry, she's running late....she always seems to run a tad late getting into the office"-
Um, w.h.a.t.
Another thing you all know about me is I can be VERY impatient. I also have a VERY hard time sitting in a closed-door room, waiting. It's almost torture for me. Being grateful we weren't quite stuck in the closed door room, I still managed to roll my eyes a couple of times. Trying to keep my dude somewhat coherent, so I keep pointing out how cute people wearing green look. He'd just smile. I wanted him to walk to the room, versus wheel him in.
They finally call my boy, and we'd stop at weigh, vitals, etc.
She does it all, and he flies by. Perfect BP. Perfect Temp. Perfect HR. And begins to walk away to get our room. I'm like...um....don't you need to weigh him? :)
Oh, shoot! So sorry, yea I sure do!
He's lost 2 more pounds.
I feel like sometimes I get punched in the gut by these little tiny fists. Like sometimes I am praying so hard, hoping to SEE answers. To see little milestones. The most important I guess are his counts.
We get into the room. She's sweet as ever. I'm kind of taken back by the hour late because she runs behind...But I still smile, because she's reading science and things to keep my boy alive. She reading aloud, as I am absorbing it all. Kris just watching me.
Mondays WBC 2.0
Today 2.4- Thank you Jesus.
Platelets 69
Today 89
All the rest go hand in hand pretty much and I see the graph on whether it shows an up or down arrow.
And it all seems relative. And decent.
But....he's 120.
He used to weigh 164ish.
I ask her what the plan should be. Just to give you an idea. I cooked huge homemade meals all weekend and all week. He eats a good solid three to four meals a day, with fat filled shakes and snacks in between. The only difference being, we don't eat out. We really can't. So we don't run to pizza places, or fast food.
I did get him Wing Stop today. Simply out of sheer desperation. They fry that shiz anyway...and if he'd eat 4 or 5 of those stinkers with an orange soda and even a few fries...well then good.
The decision from the doctor would be to put him on TPN. At home. She began to explain to me that a home health care nurse would be calling me. That they'd arrange for a nurse visit at our home. Teaching me to hook him up for nighttime nutrition. Filled with all good things. That they'd be calling me today for all the arrangements.
Upon arrival at home, and after feeding him those wings, he wandered into my room. Laying on our bed, with our cozy dark room and he fell gently to sleep. These lab and doc days take everything out of him.
My phone rang and an incredibly nice gentleman was on the line "Terrance" making the arrangements and explaining the process for me. He is the type of guy that has a silly-ness and light hearted love in his job. Popping little jokes the whole time. Telling me that though it seems huge and scary, it's not. That they have the best of the best nurses. To train me. My biggest fear is always the language barrier. (started off a little rocky when the first scheduler called me on the freeway in my car driving home to confirm our address and referred to him as a "She" not "He" and you'd think I was gonna lose my shit shouting into my bluetooth cruising down that 605. You mean, HE- BIGGEST PET PEAVE my friends!
Anyway....
That's where we are. Down two pounds. 120 lbs. Doesn't care to talk to anyone. Sleeps the day away. Walks around the house gently and quietly. Taking a shower is a huge endeavor. His phone is blown up with messages. Voicemails and missed calls from the love of friends out there. His buddies that growing more and more concerned.
He'll get through this. Transplant and the days after are exhausting! His body has been through major reconstruction. Major chemicals. And poison. And new life. And changes of major meds.
Taking one more steroid away today, which always frightens me, but I know is needed.
The thought of changing his iv at home, and as she said "Port Flushing" and this new regime to our process is scary. For those that know me, I run at the sight of needles. Needles, and tubes coming out of my kids arm....awful.
But I will step up, and do whatever it takes to get through this. I've said it a million times.
Until my last breath.
Love to you all. Be safe out there tonight if you sip green beer.
Enjoy life. Every second you can.
This Mama Lisa
The Soon To Be Port Flusher IV TPN Changer!
And Kali is coming home Sunday with hopes to have some fun on her Spring Break, where in fact she will help love and provide for her bro.
Pray for him tomorrow he has an endoscopy for his tummy. Told not to eat or drink anything after midnight....and to sip the minimal amount to take the 20 pills he does earlier than normal.
boom.
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