Liz’s Journal – Entry 9

Home  27/3/2013

Connor’s name means: strong-willed and wise.  I know, perfect! When I was pregnant with Connor, now 19 years ago, we knew if “it “ were a boy we’d name him Robert after Scott and Scott’s dad.  Scott is Robert Scott.  So with probably a fair amount of confusion we were going to do the same for Connor…name him Robert but call him by his middle name.  Scott was angling for a Ben, Max or Sam but I had my heart set on Connor.  When I had life guarded in Madison during my uni/college days the cutest little boy at the pool was named Connor.  It seemed unique and special.  I found out my great-grandmother (my dad’s mom’s mom) was named Mary Cecelia Connors and that gave me the extra weight I needed to persuade Scott.  Robert Connor, it just seemed like the right name for our baby boy.

Last Tuesday 19 March Connor was discharged from the Alfred hospital and came home.  A week earlier I wouldn’t have thought this was possible.  Peter McNeil, Connor’s brain surgeon, was visiting Connor a few days before and told Scott if Connor had one move to make it should be to home, if at all possible.  A palliative care hospital was an option but he felt if Connor moved there it would be difficult to move him home.  He gave us both the resolve to make this happen and I am so grateful he did.

A “patient transport” vehicle brought him home.  It’s an ambulance really but without all the extra gadgets.  He was strapped in a stretcher and the attendant told me if I wanted to ride with Connor it would be best if I lied down in the stretcher next to him, also strapped in.  So that’s how we came home, side-by-side, holding hands.

The Occupational Therapist (OT) at the Alfred had organised all the hospital type equipment to be delivered to our home.  We had a hospital bed waiting in our living room along with a tall-backed chair, wheelchair and commode (a chair that can be used over the toilet and in the shower).  All of this medical “stuff” used to make me feel queasy and uncomfortable but I must be resigned to the fact that as much as I don’t like it, Connor needs it.

Some friends were together over dinner the Saturday prior and discussed Connor coming home.  Everyone agreed we were going to need in-home help to do this and one friend knew of an agency that has registered nurses for hire.  They must have known this was going to be very expensive.  Scott and I had no idea.  Up to this point the healthcare and medical coverage has been excellent.  We had been referred to palliative care, which I mentioned earlier. They will check in with us daily and have someone visit, as we need them.  They are a resource in terms of medical support but don’t actually provide assistance helping with Connor’s daily needs.  Any in-home nursing/carers support is not covered by insurance. Almost before we knew what was happening an email was sent to Connor, Nick and Hannah’s classmate’s parents, asking to help us support Connor at home.  The support has been overwhelming and the outpouring of love and generosity is humbling.

We now have nurses here every weekday from 8-11am and 3-6pm.  I cannot express how helpful they are.  We have three nurses on rotation and we like all three very much.  I may be many things, but a medically attuned, nurse type person I am not.  I am learning as I go. Connor now has a catheter.  A few months ago this alone would have filled me with such sadness but now it is practical.  Connor can’t sense when he has to urinate and even if he did we couldn’t get him to the toilet fast enough. I had only a vague idea if urine is dark it’s a sign one isn’t well hydrated.  Most people seem to know this but I didn’t pay much attention.  Now that I can see his urine I’m obsessing…drink Connor! Fluids, more fluids!! I really don’t give germs a second thought, but apparently they can cause trouble. For these and many, many other reasons having their support is paramount.  I know we couldn’t have Connor home without them.

It feels so right having Connor back home with us.  Nick zooms Connor around in his wheelchair doing “mock” crashes and Hannah leisurely pushes herself around in it.  They both lie down next to Connor before they go to bed and when they wake up in the morning (Scott and I do too).  Nick is so at ease helping Connor, nothing seems to faze him. I won’t get into details but Connor needs help with pretty much everything and Nick is there to help with it all…with a fun sense about him…never letting Connor feel anything but love & support.

The last few days Connor has seemed every so little bit better.  I feel we’ve been given a reprieve.   On Friday afternoon he started smiling again and even giving us a few words.  On Friday night we sang and danced (!)  Hannah and I held Connor’s hands and moved as if we were dancing while he lied on the couch. Scott and I did our dance “moves” to Earth, Wind & Fire for Connor and he was happy…so we were all happy!  We sang Elton John’s “Your Song”…and you can tell everybody that I put down in words, how wonderful life is while your in the world…  We sang one of Connor’s favorites, Snow Patrol’s “Chasing Cars”.  A beautiful song with words that have even more meaning now, “you can lie with me and just forget the world”.

The weather continues to be warm and sunny.  We’ve been able to take Connor across the street to the park with Maddie and get some fresh air.  We push him in his wheelchair and he is happy to get out for the first time in over 10 days. He is weight bearing on his left side much better and even takes some steps with us holding him.  He is still eating and drinking well and has started to feed himself again.

There will be no further brain tumor treatment for Connor.  He is on a few anti-seizure drugs and also steroids to help with any swelling, overall tiredness and appetite.  He left the hospital on a high dose and we are slowly reducing. He is home so we can look after him and give him good love and attention.

If anyone starts to lose faith in the goodness of mankind they should spend a day at our house.  There is such an outpouring of love, in so many beautiful, thoughtful ways.  All people want to do is help and short of asking them to come up with a miracle cure for Connor its sometimes difficult to let people know what we need.

I must mention Connor’s yoga instructor, Patricia.  She rang early last year and offered to help Connor and suggested yoga would be very beneficial for him. For the past 13 months, every week without fail, she has spent 1.5hrs with Connor. When he was rehabbing well I could drop him at her house and he’d walk upstairs to her studio and do yoga for nearly 2 hours and she’d drop him home.  Now she comes to our house and does what she can with and for Connor.  Connor was in the hospital 8 days and she came to work with him 3 times! She refuses any payment and says it is a gift to be able to spend time with him, that he has given her so much in return. She is a beautiful person inside and out and I know just being with her makes Connor feel good.  She is everything that is good and right in this world.

So that’s where we are this week, home and stable. On Sunday Hannah said to me, “I don’t think Connor is going to die tomorrow so I am happy today”. I was feeling exactly the same way!  It’s just the way our life is at the moment; we can’t get too far ahead of ourselves.  One day at a time, one day at a time.