First a disclaimer. Up until this point almost every experience we’ve had with the hospital and its personnel has been wonderful. There were one or two small dismissive issues that occur from time to time but our treatment thus far has been great.

Screech to a halt. Even yesterday at the hospital started well.

Let me digress a bit ~ starting on Saturday night Mathew started vomiting and medication didn’t help get it under control. Finally on Sunday afternoon we decided to take him in to ER for some hydration and iv anti-nausea medication to stop the vomiting. We won’t be doing that again any time soon!!!

The ER was overflowing with people and knowing the flu is now striking here, I pulled the special yellow card explaining Mathew’s situation and gave it to the commissionaire who tells you to take a seat and wait. He handed it to the nurse who immediately took Mathew in and fast-tracked him through the waiting area and into an isolation room inside the ER itself. A couple of resident doctors came through assessed the situation and the IV team came to access Mathew’s port, take blood and start hydration.

A little while after that Mathew was on his way for a chest x-ray (standard protocol for post-chemo patients to make sure there is no pneumonia lurking in the lungs) and at that time we were informed Mathew had to change rooms because he was in the gynecology room and a female patient needed it. When Mathew returned from x-ray they also exchanged stretchers as his had the only one with stirrups on it. Mathew was moved from a room with a bathroom to a general exam room with the sliding glass doors….without a bathroom.

Mathew’s bloodwork came back and his white cell counts were at 0.2 ~ at 0 for all intent purposes. His immune system shot he was declared to be in isolation and precautions were put up on the glass door so staff had to gown and glove up to protect him. Mathew’s hemoglobin was 79 and usually below 80 he gets a blood transfusion. Which is what we were told would happen next.

Now, as Mathew was in “isolation” he wasn’t permitted to leave his room to use the washroom facilities. He used the hand-held urinal as necessary for those who want to know…. he was started on iv antibiotics as he was considered neutropenic ~ he had a fever Saturday night into Sunday that climbed to 38.1 degrees Celsius, indicating an infection somewhere (possibly).

By 9 pm we alerted the nurse that hydration wasn’t happening. The 500 ml bag that was hung shortly after his arrival was still there and only about 1/4 was gone. The blood transfusion was to start shortly and they can’t hydrate then… John left for the night around then; either just before the first unit of blood was hung or right after. The two units of blood dripped through until 8 am this morning. From 9:30 or 10 pm last night until 8:00 this morning. Why so slow I don’t know. He never received his 15 mg slow release morphine nor his neupogen shot that stimulates the white blood cells to grow.

We were informed that the Oncology ward ~ indeed the entire hospital ~ was full, with not one bed available, so Mathew was spending the night in the lovely little ER cell,room.

THEN Mathew suddenly developed diarrhea around 11 pm. The only thing available was the commode. Once the icky business was over I asked the nurse if she could collect a sample for C-Diff. She said no. I replied that Oncology always wanted a C-Difficile test run anytime a cancer patient has diarrhea and here was a nice sample to use. She said no. I insisted she do it and she got snarky and took a sample and disappeared with the carton-type poop thingy Mathew had to use. Then she tried to take the commode saying other patients needed it. I asked what should I do if he had another bout of diarrhea and she shrugged her shoulders. In the end she left the commode but warned she be taking it from us when another patient needed it. Listen, I had no problem with that; I just wanted it back after their use (really… did I really???). The nurse never came for it.

Life got less rosy as the night went on. I understood her stress as she and a second nurse had 9 patients between them. I was fine tending to Mathew, his vomiting and diarrhea through the night, sitting in a chair and not sleeping at all. Except for the time I dozed off and my head dropped, banging the rail of his bed. Ouch! I only asked for things when I needed them desperately, or when I he pooped and I wanted the disposable carton thingy removed (she was always sitting and chatting when I asked for this). I couldn’t dispose of it since there is a special machine that is behind a controlled access door.

At midnight I used the communal washroom and let the nurses know the soap dispenser ran out. I let them know again at 4 am and got a haughty “we already KNOW, thank you”. At 8 am when MATHEW’s soap dispenser ran out, I went to the nurses’ station and asked for a soap refill. That’s when things went to hell. I was informed that housekeeping would be around sometime that morning to refill it and that everyone’s soap was out. I mentioned that I was still waiting for a towel and another pull-up because we were out and got a frosty “wait until housekeeping comes by sometime this morning”. So I asked what I was supposed to do when shit ran down Mathew’s legs?

Yeah, that got a reaction. I didn’t mean it unkindly, I was just asking what was I going to do. The one nurse jumped right up and in a very loud voice reprimanded me for using a profanity in an open hallway around patients, so I repeated my request substituting “crap” for shit. Now this is the new, fresh nurses coming on not any of the ones who were there for the previous 12 hours. I burst into tears (having no sleep) and said I was just trying to take care of my son. I asked how I could find housekeeping and get my own towels and soap and that same nasty nurse told me in NO uncertain terms that I wasn’t to tell her how to do HER job. John, by this point, came out of the room and told them quietly that Mathew has cancer and he has to stay as clean and germ-free as possible.

I gather their exchange didn’t go as planned because John came back to the room a little irked. Before he came back however, the other cranky nurse marched in and informed Mathew she was taking his vitals. Mathew looked at me and said, “uh-oh” and indicated he was about to have another bout of diarrhea. I asked the nurse if she could wait while Mathew got on the commode and she refused, saying the blood pressure was not an “Invasive Procedure” and she would continue. I then asked her just to wait and I’d call her when he was done because it was hard for him to get off the bed – by now, Mathew was asking her to wait. She refused and Mathew was getting agitated because he couldn’t move or get to the commode. So I wearily said, “Okay Mathew, just shit on the bed then”. I meant if you have to let go into the pull up then do it and I’d clean the mess up.

Well! Nurse Frosty turned on Mathew and said in a very loud, unpleasant voice, “YOU WILL NOT! HOW OLD ARE YOU?” To which Mathew replied timidly, “20” and to which SHE sternly said, “THEN YOU KNOW BETTER”. At that point I said excuse me, he is intellectually challenged and needs some help. She said that was no excuse and continued!

I came around to that side of the bed since the Commode was there and the wasn’t any room on my side and helped Mathew out of bed. His tubing for the blood transfusion and his fluids started pulling at his port and when I looked for the cause…they were wrapped in the blood pressure cuff sitting on the bed. I said, “Just a MINUTE – the cuff is PULLING ON HIS TUBING!” untangled it and helped him get the pull-up down. At the same time she grabbed something and actually pushed me aside to get by. There was the computer on the wall, me, Mathew in front of the commode and his bed. She bloody pushed past me and I angrily told her not to push me again.

So both those nurses got the manager down faster than any thing I’ve seen move lately and she asked to speak to both John and I. I refused because that would leave Mathew, unattended, by himself. So there was another confrontation when the first nurse came in to do something and told me there would be blood tests. By that time I was very upset and I told her I would decide as I felt we’d be better off leaving the hospital.

These nurses didn’t have gowns, gloves or masks on. In spite of the precautions outside. They were rude and unpleasant. One kind word from them would have set a whole different tone to the day and it all started for a bloody simple request for stupid soap so I could wash my hands and wash the diarrhea off of Mathew.

By the time the on-call Doctor came down followed by Mathew’s oncologist, I flat out told them that if there wasn’t a room somewhere else for Mathew he would be leaving the hospital with me when I returned after going home for a nap. I didn’t mean it as a threat or bullying. His care was being compromised and all people in the ER could make him seriously ill. I said we would go home and wait there for a bed to become available. That didn’t go over well with the doctors but I was adamant. I was alternating between tears and anger, Mathew was upset and John wasn’t happy either. Neither doctor wanted to hear about the problems with nurses and waved our concerns off. So I waived THEIR freaking concerns off and stated Mathew would get sanitary care at home in a germ-free environment.

Two different nurses were assigned to Mathew and let me tell you, the day brightened right up when they started caring for him. Mathew didn’t want me to leave but I was so exhausted and emotionally wrung out and I have to stay tonight because John has to go to work tomorrow. He didn’t go today because I was obviously too stressed to stay.

All over soap? All that meanness over something as basic as soap? The irony was the friendly little lady who came right in after and supplied us with soap and a stack of towels. We asked her if housekeeping worked during the night and if it was really that difficult to get a refill of something… and no, according to her, it wasn’t hard at all. Someone just had to expend a tiny amount of energy and do something.

I have absolutely NO problem taking care of Mathew. That is what John and I do. We know the nurses are understaffed and overworked. I do not bother them unless absolutely necessary. When we run out of adult pull-ups and he has diarrhea and we are out of the commode potty thingies… I can’t get it myself. Help me out and lift a finger you wretched creature.

The crowning glory to that? The nurse who pushed past me in the tiny room? She angrily recounted what I DARE to say to other people…right in front of the door to Mathew’s room. She knew damn well we could hear her.

My tongue is bleeding from me biting down on it so hard.

I’m tired. I was up 3 nights in a row with Mathew once he started getting sick again. I was worried about his state of health, the vomiting, not eating or drinking. They hit me when I was exhausted and in low spirits.

The final kicker? Shortly after I got home John texted me.

Mathew was now up in Oncology, in his own room, and the initial poop test came back positive for C-Difficile.

I am signing off now for my health and sanity.