Recent Riley Visits...

Two weeks ago Nicolas' Pulmonologist wanted to do a Bronchoscopy...His airways are collapsing due to his floppy muscles and lack of coordination of the throat...so she wanted to know where the collapse is occurring...we traveled to Riley and found that his epiglottis is collapsing as well as his throat just above the epiglottis.  There isn't anything we can do to fix this however at this time he is only having two collapses an hour and they don't last very long...The doctors feel that the oxygen is enough at this time but a trach is in the near future.  I get nervous about the trach because it is a little out of my comfort zone but I've been informed that if he does get a trach, they will train us and won't let us go home until we feel comfortable...I just wish we didn't have to keep adding equipment...that some how Nicolas just maintains or gradually gets stronger and that there is no need for the oxygen machine or suction machine that we haul with us everywhere.  During last weeks visit, we were admitted because Nicolas woke up the day before struggling to breath and had a temp. of 103.7... They took an x-ray and found that he had a little fluid in his lungs but no sign of pneumonia...His lungs are inflamed due to chronic aspiration of his secretions...this is causing asthmatic symptoms...so we now have to give breathing treatments everyday (not just when he is sick)...several doctors had mixed feelings about whether or not Nicolas is regressing due to his current oxygen needs.  And although I've always known that Nicolas may not be with us for very long...It cuts like a knife like the first time every time...It's hard to put into words how difficult it is to think that something so beautiful and precious could be slipping from your fingertips...  The common phrase is none of us know when our last day will be...and live each day as if it was your last...but to look at your child and wonder will tonight be the night...tomorrow...maybe during a car ride somewhere...will I be there when he takes his last breath....will it be at home or at the hospital...will we all be together or will I have to call Jake...pick up Garrett...will he suffer or go peacefully...  These thoughts plague my mind at times...and I wish they wouldn't... Everyday we are faced with a reality that is unfathomable even though always possible with any one of us.  Needless to say, we still need your prayers.

Nicolas also had a 24 hour Video EEG while there.  We do not have the results yet but I'll let you know as soon as we do...While there we did have a special visitor!  Coach Tony Dungy came to visit little Nicolas!  I was so excited and then he asked me to tell him about Nicolas...Well...I couldn't tell him without crying...but he was wonderful...he too has a son with special needs and knows about the worries that surround caring for and protecting your beautiful child.  I appreciated his patience as I was a little scattered in my thoughts...its amazing how much light surrounds a person and that there presence can be uplifting to others during difficult times...I don't mean that from a "NFL Superbowl Champ" perspective (even though thats pretty cool)  but from his faith that has endured and (I'm certain) strengthened throughout struggles and hard times he and his family have had to go through.  I appreciated the visit deeply.  Of all the things Nicolas might not be able to do in life...he did get to sit and visit with someone famous!  

Here is a photo taken during his visit with Tony Dungy.

Nicolas also got his autograph that read...

To Nicolas 

God Bless to a special kid!