Well, he did it. He made it through a 12 hour surgery. They opened up his neck, removing lymph nodes. Went through the floor of his mouth, removed tumor, right side of jaw, and precancerous growths. Also removed the last of his teeth. Took a bone out of his lower left leg to rebuild his jaw and flesh and veins from his upper left leg to rebuild his soft tissue in his mouth (they call it a flap) A cast on his left leg. Tracheostomy tube.
As per his personality, he was a difficult patient. He does not do well with anesthesia or pain medication. He was violent to others, self destructive (pulled out iv's, drains and 3 NG tubes, last being surgically placed) He was in restraints and had security called on him 7 times. The poor man had delusions that we sold the house and put him in a home. That I was driving him somewhere and crashed the car. That he was kidnapped and in a house in Bridgeport. A zoo was outside his window. He could see people on a boat fishing in front of him. He also offered the entire 15th floor at Smilow Chinese food, and people should give me their orders. He was treating!
He actually didn't look bad. Swollen, mouth mishapen a bit. But he was still Pops. He came home on the 10th day. Where we had new challenges. He now has a covered stoma (opening) where the trach was. He has a boot instead of a cast. He cannot eat solid foods. He needs to be reminded to cover his stoma when talking, to drink his water, to not take off the boot. To use his walker. He cannot be left alone. All very hard things for him to follow.
Within the first hour of being home he needed to use the bathroom, wouldn't use his walker, tripped and fell. Took DH 20 minutes to get him up. No physical injury that we can tell, just to his pride. He ripped the boot off and threw it at my sister.
His short term memory was iffy before the surgery. Now it's completely shot. Multiple reminders every day. Same questions answered over and over. Many in home visits (nursing, PT, OT, Speech Therapy) and many outpatient visits too, this week is PCP, labwork, Chemo and Radiation visits. We don't think he will be getting chemo, this is a post op visit. Radiation may be mapped out, but I don't believe it will start yet. When it does, 5 days a week.
We are finding our new normal. I'm still dealing with extreme arthritis in spine and hips and some days it's hard to move. Monthly infusions. Sister has an immunodeficiency due to chemo years ago, and needs a weekly subdermal infusion. Husband is just trying to keep as all sane. But we are managing. This is my first almost full week back in studio. Dispensing meds, reminding him to eat, pleading begging him to eat. I constantly say it's temporary, please just go by taste. It's the same food. Just texture is different.
I take him to as many appointments as I can, but have missed a lot of work. I don't get FMLA. I have subs, but people are paying to have their children with me. One family quit. I hope someday when they are in a similar position they will understand.
For the most part, we are doing well, and I feel lucky. Every day he gets a bit better.
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