Thursday October 8 – Swallow But Not Good Enough

Quinn feels bad today – he was in tears – He couldn’t decide if he should go to school or not. He thought his left ear hurt. I decided that he should go to Juanita’s instead of school, at least for a few hours until he feels a little better. Quinn cries when I tell him Uncle Wayne is picking him up to take to Juanita’s. He wants me to walk him to school. I’m not sure what the problem is, sickness or sadness or both.

He had a restless night – lots of groaning and talking in his sleep. I’ve not known him to talk in his sleep this much before. He wants me to lay down with him at bedtime every night. Each night he asks me to lie down. Each night I have to tell him I have a few things to do before bed. Each night he says he understands and goes to sleep on his own or with Annie. I think he is just saying that he understands. I think, he has some anxiety. The virus just made it worse. I don’t know what to do about it. This weekend, I will make an extra effort to spend time with him.

Quinn and I decided that if he felt better, in a little while, then Juanita will take him to school a little later. He seems a little happier with this plan.

No ride today, I drove in myself. It was good. My mind is alert and it gives me an opportunity to think. I normally like to listen to CBC radio when driving but I haven’t listened to the radio or watch TV since your marathon started. I just don’t want the extra noise to distract me from what I feel I need to do and think about. It helps me get things clear in my mind. It’s almost as good as the journal. Silence is golden … once in a while.

You are in your chair and dressed and mouth cleaned and it’s only 9:15 AM– the students must be back – They are back - Chantelle is your student nurse today. There will likely be a strike so this will be the last few days with students until the strike is over. That’s too bad, students really help the staff at the hospital.

Speech therapist Sue came in to give us a binder that she had prepared to allow for communication in the least tiring way for you. She asks you to move your tongue about. “Ohhh” she exclaims, “You able to move your tongue to the right past your midline!” A significant feat in the speech therapy business. She’s impressed. Then you show off with a good blow. Almost strong enough blow to blow out birthday candles.

Sue thinks that maybe you are ready for a fluoroscope swallow to see how well you complete the swallow. But first they test you with a very small amount of thick liquid food like applesauce. “Do you have anything else – Chris doesn’t like applesauce.” I said. I think of one of our favorite family meals – pork chops. The children and I love pork chops and applesauce but you can’t stand the thought of it. You like your pork chops – naked. To think the first thing your taste buds get to experience in 40 days might have been applesauce. You would have likely gagged at the thought – that’s just wrong.

“How about butterscotch pudding mixed with barium?” asks Sue. I know that you would have preferred a Coke Cola – I asked - but the dietician says no way!

To finish your performance for Sue, you even sing a note on request – I’m not sure which note – I wish I had a musical ear. Tara would know the note. Sue suggests we practice this occasionally. Something to do this weekend.

Sue talks about placing a PEG tube. This is a tube that goes through your abdominal wall into your stomach. After it heals, it can be there for a long time … if needed. There are many advantages to a PEG tube. The biggest is you get to loose the horrid NG tube. You can be fed in boluses, which means when the physio gets more intense, they don’t have to worry about working around your NG tube. It also reduces the risk of heartburn and gastric reflux.

You seem sore in your left shoulder. We call the nurse for more pain medication. I don’t think you have enough strength to call the nurse on your own. This worries me about your care when I’m not here to advocate for you. I want to push for regular tylenol treatment. The ‘prn’ or ‘as needed’ instructions the doctors have given the nursing staff are rather silly. You can’t easily communicate that you have pain. The onus should not be on you to ask for pain medication.

I read the latest letter from Janice (from PEI). It’s about missing you and your talks and about missing her eldest daughter, Jaimee, who is off to university this fall. It’s a difficult time of her.

I ask if you would like to listen to your ipod. You say “It’s not working”. “Yes it is, I charged it last night”. You reach for the ipod – you remember what to do – how to adjust the volume etc! I start to write while you listen to tunes. You start to tap your right foot to the music!

Physio Jill came in to see you. I tell her that you indicated that your left shoulder is sore. She checks it and explains that since the shoulder joint is only held together by muscles, it’s easy for the joint to get sore when the limb is not in use. The muscles stretch and the joint capsule and rotator cuff can get strained, causing pain. Because of this your shoulder is very prone to injury. We have to be careful how to move you.

Sue and Shirley, the dietician, come in and do another swallow assessment with ½ tsp butterscotch pudding. You did swallow … about 12 times then a little cough. Improved from last week but you are still not ready for real food yet. The risk of aspiration pneumonia is too great and too serious. Shirley says a PEG tube will also allow you can to get fluids and adequate calories while still trying to learn to eat again.

Last week you weighed 140 pounds I believe you entered the hospital at about 175 lbs. Shirley says you shouldn’t loose any more weight. Her plan is to maintain this weight until you are building muscle again.

Elaine was working with your arm. You were half-asleep. Lids half open but the globe of your eye was starting to float back and forth with REM activity. As she worked with your arm, you clearly ask me “Do you like people chasing you?” I said “No, not especially” Then you pointed to your mother and asked the same. “Do you like people chasing you?” She says “If I’m being chased by Tara and Quinn, I like it.” I ask you the same question, thinking this is some sort of game or leading up to a joke. You drift off to sleep taking your answer with you.

There are times when I am half-awake and half-asleep. Reality merges with fantasy and it’s hard to distinguish the difference. I wonder if this is where your mind is floating sometimes at this point in your recovery.

I get back to Truro and pick up the children from piano lessons at Chella’s. Quinn greets me at the door. He proudly shows me that he is on page 29 of his music book. He plays me a few songs while Tara is in the other room being a Julia Andrews mimic singing ‘DO a Deer’.

On the car ride home Tara starts to plan how she would form a choir and get them to perform ‘DO a Deer’ just like in the film.

We visit Assieh and her family for a few minutes on the way home. Josianne, Tara and Madeline started a book club at school. They started a trend in the class. Now there is a girls fashion club, boys fashion club, art club and a pokeman club as well.

I ask for Assieh’s advise about Quinn’s anxiety. She asks “what does your gut say?” I think he is anxious about you but doesn’t know how to express it. I will have to try and help him through this rough time. But I don’t know how. I vow to myself to lay down with him at night like we used to. I’m just going to have to will myself to get up when he is asleep and finish getting ready for the next day later.

When we get home, dinner is waiting for us in the food fairy cooler along with a turkey. The turkey is from Kevin. In an envelope addressed to Tara and Quinn is a note from Kevin and $40.50. The proceeds from the 13 chicks that we hatched out and gave back to Kevin. His note said that he found a good home for them in Stewiacke. Tara and Quinn are delighted with their newfound money.

At bedtime, I tuck in Tara and lay down with Quinn. He seems happy with this. I fall asleep … until 10:45 PM … Oh No the Angels game started at 10:30 PM! I rush to tape the game. I start to write in the journal, Quinn is up again – it’s 11:30. He is crying and I go through the list of possible problems. He is half-asleep and doesn’t know the problem.

I take him up stairs, thinking that he has a headache, I reach for some ibuprofen, and then I notice that his extremities are covered in itchy hives. That’s why he is crying and why he is not sure what the problem was. I call Martha (A friend who is a pediatric nurse) in Ottawa, hoping she might be home. She’s not.

I google strep throat and find scarlet fever. It doesn’t really fit his symptoms. I settle on some benadryl. He sleeps soundly the rest of the night. I’m wild awake now, I stay up to 3 AM thinking and writing.