Monday, January 14, 2013

Thinking Positively

We have made it to Baltimore. We had to drive through sleet, rain and snow and when that finally let up we had intense fog.  Hoping that is not a sign of things to come...keeping positive and thinking that this is the answer to Sam's pain, lack of mobility and frustration.

Today was the pre-op appointment and anesthesia consult.  Whenever I meet with a new anesthesiologist I provide them with a copy of Sam's last bronchial scope and then I begin my explanation.  Sam has a anatomy anomaly, he has 3 bronchial tubes instead of 2.  He has a floppy, reactive airway, an extra esophageal fold, his lower airways are pristine but his upper airways are scaly.  Sam does not have textbook asthma but instead has issues with his upper airway and how it reacts to illness.  The medication of choice for Sam during respiratory issues is vaponephrine.  Sam struggles with oxidation after anesthesia and can often wake up angry and aggressive, it is best to bring him out slowly.  Sam will breath shallow until he recovers enough from anesthesia, he will require respiratory treatments and 1/2 hour to hourly work with his acapela to begin breathing deeper.  Until Sam system recovers he will require oxygen as his stats will drop very low when he sleeps.  Keeping Sam healthy during this surgical procedure and recovery is crucial to recover his respiratory function and move him along. 

And then I take a deep breath and say....but he's a really great guy and we love him will all our heart.

They usually ask me how I keep all that information in my head and I explain...because I have to.  Sam's favorite mantra through all of this is "Mom, go home".  When we started out on the trip he wanted to convince us we were headed for Florida and I liked that option too but each time I explained we were headed to Baltimore and Dr. Standard was going to fix his hip.

So far, Sam has been handling things as well as Sam does.  The blood draw today was a little intense for all of us involved with Jeff stepping outside to take a few breaths.  It is never easy to watch or hear your child scream through something as simple as a blood draw but Sam's sensory issues seem to keep us from ever making that a simple procedure.  Luckily his short term memory after it is over is short and he thanks everyone involved and moves on.  Sam doesn't hold grudges.

Sam appears to be stocking up today on food and liquid nourishment and duct tape on the refrigerator after 8 tonight may be required.  All the prayers people are sending are keeping me calm and focused on a positive outcome.  I will update as I can.  Please keep those prayers coming and especially include Sam in your prayers tomorrow morning as he goes through surgery.  We have been told he will have an epidural to handle the pain and muscle spasms that are part of this surgery.  He will then be weaned from that and put on oral pain medication beginning Friday.  Pray that Sam's respiratory handles the procedure and he recovers quickly. Pray that Dr. Standard figures out exactly what to do to help Sam regain his mobility and have pain free movement.  Pray that Sam's very difficult case of Perthes which includes more than 100% collapse miraculously reacts to this procedure and he ends up with a functional hip...not looking for pretty just one that works and is pain free for enough years until further medical intervention is required or better yet no other medical intervention is required. Hoping and believing is all we have left right now.  Good night everyone and keep those prayers coming!!


  1. Sending lots of prayers and positive energy your way.

  2. Praying for you and Sam and your family, Sue.

    Jeanne S