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.

November Updates

 HI EVERYONE...

Before we give you an update on Riley’s situation we wanted to send a big thank you from Riley.

Riley turned 17 on October 28^th. Many of you sent notes, messages of encouragement, stories and memories, photos and also some wonderful gifts to lift his spirit.

This was an incredible gift to Riley.

Lyme disease is very isolating. He only sees the four walls of his bedroom, his tired family, a lot of IV bags and pills to swallow, and a few nurses and doctors here and there…not much fun!

WE SEND HUGE THANKS TO ALL OF YOU FOR BEING PART OF HIS CHEERING TEAM AND REMEMBERING HIM ON HIS BIRTHDAY.  He was very ill and weak on his birthday so we spread it out and only read, shared two or three wishes per day.

Thanks also to the Birthday elves who arrived late one night to adorn our house with birthday wishes for Riley.  Got a few looks of astonishment from those passing by.

 
UPDATE

At the end of October- Riley had been on oral antibiotics for almost 2 months with no visible improvement in his condition.  With Lyme disease, treatment is expected to create an increase of symptoms for a time- before visible improvement is seen.  This phenomenon is called a Herxheimer reaction….a what??????

The Herxheimer reaction (also known as Jarisch-Herxheimer or Herx) occurs when large quantities of toxins are released into the body as bacteria (typically spirochetes) die during antibiotic treatment. Typically the death of these bacteria and the associated release of endotoxins occur faster than the body can remove the toxins. The intensity of the reaction reflects the intensity of inflammation present. The reaction is seen in diseases caused by spirochetes, such as Syphilis and Lyme disease.

Riley’s response to treatment has been severe and very hard to watch.  All of the symptoms he had been experiencing prior to diagnosis have increased and he is also experiencing some troubling and debilitating neurological symptoms, including facial paralysis, tremors in his hands/fingers, extreme sensitivity to sounds- we have to keep the house almost silent otherwise he experiences panic, anxiety, shaking and severe sweating.

We believe this increase in symptoms is both a HERX (the buggers dying off) as well as the oral antibiotics perhaps not adequately addressing the bacteria load.

In consult with our doctor in California…it was decided that Riley needed to switch from oral to IV antibiotics as quickly as possible.

The neurological symptoms indicate that the bacteria has crossed the blood brain barrier and that the oral meds are not getting a foothold on the bacteria raging in his body…more aggressive treatment is warranted.

At the beginning of November we began to make plans to take Riley to California to have a PICC or Port Catheter line inserted so he could receive IV antibiotics.  The procedure is something readily done here (for many other diseases), but because of the Lyme diagnosis…getting a doctor to agree to do this for treatment seemed impossible.

 

The progress we are waiting for:

• Riley’s facial paralysis to reverse (as happens for the majority of Lyme patients)
• Other neurological symptoms to subside
• IV meds to begin to lessen the symptoms

We were told by Dr. H. (California Lyme specialist) that it would be a long road...
a marathon, not a sprint….
a very hard bumpy path back to health. 

He was right!!! 

We have never experienced anything so dark in our lives…..however, through it all we have been held up by our faith, the enduring presence of friends and family (all of you reading this blog), and the continued words of hope from our medical team that he will get better.

“Sometimes our light goes out, but is blown again into instant flame by an encounter with another human being. Each of us owes the deepest thanks to those who have rekindled this inner light." - Dr. Albert Schweitzer