Mathew’s first discharge Part Three Going Home!!
It was right at 4 weeks from the day Mathew was admitted to the Zephyrhills Hospital with problems unknown, to his transfer to Moffitt Cancer Center in Tampa to a final Diagnosis of a rare soft tissue Sarcoma, to his first round of chemotherapy, 5 days, two chemo each day, to the process of being discharged.
I have covered a lot of things that happened the last few days before he went home, but the paperwork, dealing with the insurance (Thanks, Diane!), and everything else required went amazingly smooth.
This post will cover the insurance and pharmacy dealings through text messages between me and Diane. I have my notes from The Notebook about taking Mathew ‘home’.
Texts Between Mom and Diane
I may be a few minutes late. If he is
awake let him know. I should have
just gone to Walmart and bought a
cheap shirt and stayed there. I
drove home tired and accomplished
nothing and can barely walk
straight this morning. I really have
no business driving right now.
Sent March 19
****This was the beginning of our pattern.
When Arpie or Diane would stay the night with Mathew, they generally didn’t get to the hospital until 10 pm because they wanted to be there to put Russell to bed at night and then they needed to be on the road by 6 in the morning. By the time I left the hospital and arrived home, it would be almost 11 pm. Then I would take care of my cats, things around the house and any sleep I would get was cut short if I was going to be up and back on the road by 5 am. Keep in mind that I was already exhausted by the time I left the hospital.
He’s finally sleeping…
very little during night.
Be careful!
Rec’d March 19
I’m only 15 minutes away.
Sent March 19
Okay. I’m leaving now.
Take care.
Rec’d March 19
Bettye (Arpie’s Mom), is leaving
tomorrow and she really wants to see
Mat before she leaves. We will be
there around 8:15 for a short visit.
Russell’s school isn’t too far from the
hospital so we will run by after dropping
him off.
Rec’d March 19
Ok
Sent March 19
Bettye stopped by as promised to visit with Mathew. She told us that she will be back to visit in a few months and at that time maybe Mathew could go stay at his Father’s home for a few months.
Bettye is a very nice person, an awesome cook and l had no problems with her, but later when this idea came up again I was filled with anxiety. Arpie would be at work during the day, as would Diane. Bettye wouldn’t have a car and if Mathew needed to get to the hospital because of any problem, he needed to be there within an hour. Of course, they said for regular appointments I could just drive down, pick him up from Brandon and then take him to his appointments. I told her we would see at that time. This falls under caregiver roles and family dynamics.
Later that day I texted Diane to let her know about instructions, some having to do with food, avoiding certain OTC meds and ordering supplies. For Ex: supplies for his lung cath.
The last time I took Mathew home from a hospital was after he and his brother were born. I was just as nervous! My sister, Kathleen, had been taking care of his cats, Tippy and Sequel and though they were doing well on the special food she was giving them, she was starting to worry. They seemed depressed.
The RN Case Manager arranged and explain everything, prescriptions, including Neupogen shots. Home Health Care will come every day and flush his pic line. All I had to do was go downstairs to the Publix Pharmacy and pick up all the prescriptions, including the shots. I had gone down the day before when Diane was visiting so we could make sure the discharge information was set up and to find out about the pharmacy co-pay. Over $600!
$200 was for the shots. We received enough for 2 1/2 treatments, One shot a day for 6 days after each IE chemo. And 24 hours after the VAC chemo, one shot only. The single shot was also $200. The case manager suggested we bring Mat back in for that shot and avoid the expense. This seemed like a good idea, but in retrospect, I should have done whatever it took to pay the $200 co-pay for the shot 24 hours after the VAC. I could have spared Mathew that many more car rides, waiting room time and long days back and forth for the total cost of $800. Shame on me.
That last day I packed up everything that had accumulated, loaded it on to a cart provided and transport took Mathew down in a wheelchair. I felt vindicated seeing him leave through the front entrance, the same entrance the ambulance had brought him through early March 1st.
His legs and lower body were still so swollen and once home he would no longer be receiving the blood thinner and I knew all our efforts to raise his legs only maintained the situation.
Mathew was so happy once he got in the car. He wanted the windows rolled down. I worried about germs but why not. Once we got on the main road we rolled them up. He slept most of the way home. When we arrived at my sister's house, Carlos met us there to help me get Mat inside. He needed to use his walker and was exhausted by the time he reached his room but the first stop was the living room to see his cats.
I noticed his calf had an indentation from where his leg had been pressed against the door pocket in the car. It was easily a 1/2 inch deep.
“You need to put your legs up!”
So I propped his upper body with pillows and his legs while he napped on the couch.
Sequel sat on the banquette, chin on her paw and just stared at Mathew.
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