Angels Known and Unknown- December 15th update

I press my ear up close to Riley’s frozen mouth and strain to hear him whisper: “Dad… when you come in to say goodnight … I won’t speak to you…takes too much energy…let’s touch fingertips…then you’ll know I’m okay…I love you.”

In the tomblike stillness, I sit in the dark beside his bed and carefully dole out his dinner spoon by spoon. In Zen-like fashion, I retard my arm movements to avoid startling him. At times my caution seems pointless, however, as he manages to startle himself. The bilateral paralysis in his face barely allows him to open his mouth and the lack of sensation means bits of food miss the opening and panic sets in. “Breathe Riley…you can do this” I say, horrified.

At this point in Riley’s illness I can no longer fool folks with “I am fine”. Sadness resides behind my eyes and weariness pulls at my shoulders. I stare blankly out the window looking for signs of life and the festive lights mock me. I turn back to the bed where my son lays deathly still and watch the rise and fall of his chest. I try to picture him well again…gliding over the ice with reckless abandon. 

Although largely unsuccessful in my efforts to cheer myself up, Hope still arrives. Cleverly disguised, she seeps into our home…a meal left on our porch, a card in the mail, the walk cleared of snow, an e-mail of encouragement, a nurse helping with meds, a generous donation, a well-timed hug, a kind doctor’s words, beers and conversation, a bouquet of flowers, birthday streamers, a prayer from afar…light in the darkness.

Thanks to all the angels known and unknown, Terry

December 15^th Update…

The last 2 weeks have been discouraging….day after day of  meds with no improvement in Riley’s symptoms. 

As you can read from Terry’s description above…even the simplest tasks have become difficult for Riley.  The neurological symptoms are debilitating. Riley is locked inside his body unable to communicate much emotion…a   paralyzed face makes it is impossible for him to smile, grimace, frown, or laugh…a beautiful soul full of unexpressed words, thoughts and emotions.

He grows weaker everyday and the other symptoms continue to rage.

So-what is happening we keep asking ourselves, asking the doctors?

It appears that Riley’s system is not responding to the combination of antibiotics that he has been receiving for the past 4 weeks.  We hear over and over again that there is no “cookie cutter” treatment for Lyme/co-infections and that it often takes some trial and error to figure out which antibiotics will best suit the individual and his/her particular set of symptoms etc.

The co-infections that Riley also has, particularly the “Bartonella”…can really impact progress, wreak havoc with the immune system and comes with its own symptoms that must be dealt with along the way.

In conversation with Dr. H today he said treating Lyme is a delicate balancing act…. You have to treat aggressively enough kill off the bacteria, but if you go too hard, too fast then it causes massive inflammation in the body, which in turn can impair progress. He thinks that in Riley’s situation….the oral antibiotics in the fall were creating some die-off of bugs but not sufficiently enough to keep them from progressing into the Central Nervous System.  And now we have an IV antibiotic that for whatever reason is not turning that around.  UGH!

So as of yesterday…our medical team (Dr. H’s team in California and Dr J here), want Riley to switch to a different antibiotic regimen. He will be on a new antibiotic that is powerful and they feel, given its track record with other difficult cases of Lyme…should have a better chance at getting at the bacteria- and we hope begin to reverse the facial paralysis. He is also set to have a second MRI to ensure nothing else is being missed.

He will have to have many pokes in the arm in the next couple of weeks in order to monitor all of this…easier said than done because his veins keep collapsing whenever he goes for blood work.  Theoretically- the Calgary Mobile Lab will arrive one hour before the meds are administered and one hour after…and all will be kept in check.

We are very thankful that:
Riley's vitals (blood  pressure, heart rate etc) have remained stable the past couple of  weeks

    

Riley remains determined and hopeful and continues to push himself to eat, take every medication and supplement we put  in front of him…he knows he can’t lose anymore weight and must do everything possible to stay strong

His medical team is determined and dedicated...answering every worried call, emailing, and even texting us late at night to check in, as well as responding to the many complications and going out of their way to “heal not harm”.

We are not alone in all of this and feel the incredible support from family and friends (near and far), our faith community at Hillhurst Church and many other known and unknown angels along the way.

   

Grandma Lindberg has been able to come a couple of times from Canmore and be with us.

Grandpa Moon and Auntie Pierann are hosting Evan at Grandpa’s house this week (this has not been easy for Evan and needing the house to be so quiet isn’t exactly easy for a busy, thriving 12 year old-please keep Evan in your thoughts and prayers as he copes with his big brother being so sick).

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all.