September 11, 2020

September 11, 2020

Our morning started early.  I heard the nurse exclaim 'Marlon, you pulled your tube out!'.  The bed is wet, Marlon is wet, the nurse wakes him and he says he is cold and has been cold for a long time.  He has always been a restless sleeper so he likely rolled and pulled the tube out of the port in his chest.  The saline solution continued to drip, some of his blood backed up, and everything was wet and bloody.  We changed the bed, changed Marlon, and then the port needed to be changed and new tubes put in.  A freezing cream which does nothing for Marlon so he cried while she poked in the new port.

After that we couldn't sleep but Mar was feeling pretty sick and not wanting food.  Eventually he ate some cereal and I got the yogurt to help him take his pills.  Mere mention of pills and he is anxious, panicked almost. The container needs to be out of his sight. I peel the top off the yogurt and he gags.  The power of smell.  He tries one bite of yogurt and throws up everything he has eaten so far.

In a bit he has a piece if toast.  Time to try the pills again but how?!  Thomas's applesauce? No that won't work.  He tries a thick juice and just gets one pill down.  No that won't work.  Chocolate milk used to work.  No not that either.  Well, just try plain milk.  He barely gets the pill down and is spewing milk across the room.  Then everything he has eaten so far comes up.

Now what?! The physiotherapist comes in and speaks of smells.  She brings cotton balls and mint essential oil.  Marlon had just been speaking of mint oil with Maria the day before. He sniffs the cotton ball, I put each pill in a small amount of softened ice cream and he follows that with a sip of ginger ale. We get the pills down. 

A little while later Marlon needs to go to the washroom.  We are just about there and he says he is dizzy.  I grab him with a bear hug and he starts to go down.  Momentary faint.  I get him into the washroom and after we are trying to walk back to the room.  He is too woozy and we are staggering down the hall, me trying to hold Marlon up and push his pole.  Nurse hears Marlon's cries.  'Are you OK?' 'No!' She brings wheelchair, Marlon collapses into it.  He says he is going to be sick.  Get him back to his room, get container and he throws up again.  Everything empties out.  He is wet from sweat and very shaky.  Get him in bed and he rests.

He has been wanting pizza all morning.  He eats some chicken noodle soup and rests while I go across the street to get a pizza with his desired toppings: pepperoni, olives, and pineapple. He is so happy with the pizza.  It stays down, though they are now keeping him topped up with gravol.

After a while I leave him on the computer to walk to the bank for paperwork.  When I come back, Mindy the physiotherapist and her assistant Tori, have brought Marlon to play Wii. He is sitting in the wheelchair but I can see he is not really ok.  Being upright gives him a headache.  Once back in his bed he gets horizontal and rests. We get the evening pills down with ice cream and pizza.  We will see how tomorrow goes.  

He will start the new pill on Monday and that will bring him up to 9 pills to take in morning and 7 in evening plus the occasional syringe of liquid.  Yikes!

Marlon prefers me to do the talking for him.  But I asked him if he told the physiotherapists he was done playing and he said he couldn't.  I am hoping I can help him to advocate for himself as well!