Storyline: Thinking in Autumn Colours
Wed, Oct 6
Exactly a month since his admission to the hospital and over 40lb lighter, Alex is finally home. Yesterday, for the first time since I dropped him at emergency, I saw him excited. Very excited. They had told him he was going home on Wednesday. He was babbly, telling me what we’d do in the next few days, the next few weeks, the next few months…
In the meanwhile, Dili and I have been preparing for his return. Lots of things have changed. Dili vacuums, washes and disinfects the entire house. We don’t yet know how mobile he will be after a month of disappearing in a hospital bed. We set up the family room as a “nursing” room. He needs to be sat up at least 45° while the food pump is running. We had decided we’d use the recliner, his dad’s La‑Z‑Boy chair. I bought a protective sheet from Ikea and covered the chair with it in case of food spillage or vomiting.
The coffee table goes in a corner and a folding Ikea table comes up from the basement and is placed next to the recliner. This is my nursing station. There will be a few more around the house, but for this later. All rugs are out, of course. In case he can sleep in our bedroom during the night, Boyko helps elevate our bed mattresses. We have 15 cm foam wedges that go under the mattress. Boyko is responsible for the heavy lifting and gardening, mainly cutting the grass at this point.
Alex has been told that he’d be released around 11 am and I can’t wait. But before we get to the discharge let’s rewind the tape:
One step forward two steps back
Sun, Oct 3
Heavy rain drops are knocking on my window. It’s been pouring all night. I didn’t sleep much at all. First it was my gallbladder pain.
Got up at 3am did some reading and went back to bed around 6am for my 5min nap. And just as I was closing my eyes, I got this text from Alex: “2 steps forward, one step back. Very rough night. No more than 20 minutes uninterrupted sleep. Mostly my digestive system complaining. Bolus will have to be scaled back for now. My stomach isn’t tolerating it. Plus ended up with big headache. Tylenol at 3. HydroM (Hydromorphone) going in now. Sorry love. Will txt later. Have to try to sleep….”
It was just last night when he sent me a photo of him by the elevator windows with “Free… almost”. Earlier that day I walked with him in the ward’s corridors, free of any attachments. Then we sat in the chairs by the elevators watching the vehicles speed by on Hwy 401.
It is somewhat mesmerising to watch this traffic of all kinds of vehicles. Here is the GO bus (commuter service), and there the FedEx truck, cars, thousands of them; and heavy trucks; here is an RV, oh was this a campervan…? We sat holding hands with the anticipation of freedom from hospital beds, IVs, tubes, etc.
I was readying myself to go to the hospital and walk with him again. I guess instead I’ll sit in the chair next to his bed and hold his hand.
Bolus feeding is related to the speed and time of the food delivered through his G-tube in the stomach. It was 3 times daily for 2 hours which is manageable at home settings. Now he is back either on 14 hours non-stop but slower delivery. This does not provide any comfort for him moving around, walking and regaining his strength.
I got up and went in the basement, washing the soap dispensers for the van. My mood is swinging and I can’t stop my tears. Maybe we should sell the van after all. While there is a demand. Then sell the house and move to an apartment. My fear is snow shovelling during the winter. With the van in the driveway there is no way to order a service.
Our “talk”, aside from my hospital visits is texting. He’ll text me when he is awake. I don’t know when. Next text at 9:20 “Just vomited.” Then “Still cleaning up. I managed to get it into the garbage bin. Nurse was giving me drugs thru tube and I just don’t think my tummy wanted anything else in there yet. Nurse will call dr for instructions. Maybe I’ll need IV hydration for a while today while this gets sorted out. “
9:30” Gravol going in. Still burping. May be more nausea. Meanwhile I’ll try to sleep some more. Slept well after I texted this morning”
11:50 “Slept til just now. Still nauseous when I move. Back to sleep I go”
Something is wrong here. He must be really unwell. The first text in the morning, every morning since he was admitted, be it at 4 am, 6 am or 8am, would be “Good morning, Love” Or just ‘Morning. Even when he was really not with it. When he was in horrendous pain and sleeping most of the time. This is the first time he did not say it. Something is not going well. I hop in the car and drive there. Asleep or not I have to see him. Meanwhile I haven’t stopped crying since 6am. It is noon now and I barely hold my tears as I go through the check points, sign in the visitor’s book and get to his room.
He is asleep, but as soon as I touch him, he smiles. He opens his eyes briefly. It’s a minor set back he says. Just a matter of time. I am not quite sure. They’ve stopped all the feeding at his request. Nurses buzz in and out with all kinds of IV-delivered drugs. IV hydration coming soon. It was only the first week in hospital when they were giving him hydration through the IV.
“You are not coming home on Tuesday, are you?”, I ask. “Most probably I will. Don’t see why not” and he drifts again. (His discharge had previously been moved from Friday to Monday and then to Tuesday.)
The nurse puts him on hydromorphone again and he goes to a deep sleep. I drive home and wait.
It is sunny Wednesday morning and I can barely wait. Haven’t slept much. I was up around 4am for the final touches in the house before he is home.
Visitors’ time starts at 10am. I am in his room around 9:30. Everyone knows me by now. I tell the guy at entrance checkpoint (Covid) that this is my last time. We’ve become like old friends. He gives me my last blue wrist ribbon, a mask and wishes me all the best.
Same upstairs. Nurses and floor reception staff know me. “Excited?” asks Cherry. Yeah, I am all in smiles.
In the room, he has packed all his belongings and had dressed into his “let’s go home” clothes, although it is at least an hour before the doctor’s visit and a few more hours before all the formalities are done. In the meantime, Sonia, the dietician comes to check on him, gives me her business card and we say goodbye. The floor pharmacist shows up to say hi and to let us know that as soon as doctor Puhani sends her the prescriptions for home consumption she’ll fax them to the pharmacy downstairs (who still uses faxes these days? Ontario pharmacies – A). Jonathan, the pharmacy student, comes to see if we have any questions around the chemo drug that Alex will be on for life. Dr. Silverman, his hematologist, visits too. He says he’ll arrange for another spinal fluid test. If the CLL is still present, they’ll do a second round of chemotherapy via spinal tap. Other staff one by one come to say goodbye. Dr Puhani’s visit is around 11am on her rounds. After she’s done with the floor, she’ll deal with the patients that will be discharged today. I have a few questions for her and then she’s off to see Alex’s roommate. Now the waiting game begins. Around noon, she comes back with the list of drugs she’ll give to the floor pharmacist and his release papers. I quickly check the drugs on the list, find a few that are missed and run after her. She adds them to the list.
1pm. The floor pharmacist comes to tell us that she’s just faxed the prescriptions to the pharmacy on the first floor. Will be ready in 30 min she says. “I better go check”, I say to Alex after 15 min have passed. Good that I did. Downstairs the small pharmacy is overflowing with patients just discharged and waiting for their drugs to be done. I go to the drop off with the original prescriptions and tell the lady that I was told all will be done in 30 min. “Really? What 30 min? See all this people waiting?” … I give her the original and add “He is on a feeding tube and has to be fed. I have to bring him home soon.” Worked! “I’ll do it” and off she goes to dispense the drugs. After gathering the drugs, I am back to collect Alex. Final goodbyes and shortly after we are home!!! Our new reality is about to begin.
Join the conversation around our e-Table