Weekend thoughts on Daniels recovery

It's Saturday, I think and I'm seriously losing track of the days.  Daniel is hanging tough.  Breathing treatments, physical therapy, medicine, feeds, diapers, x rays, repeat. 

I just took him for a morning stroll around the floor here in the reclined wheel chair but he is very uncomfortable when we move.  So he is in his chair sleeping and has to get up to 80 degrees today.  Very necessary, but painful.

Everyone has been awesome. I did get manic and "mother angry" last night because I found him sitting in an explosion of poop, but we cleaned it up and actually its a YAY for the boy's bodily functions.  One step closer to normality.

So I think today is December 8, 2012.  You really do lose grip on reality and the outside world when you are in the hospital.  

Today Nana and Grandpa should be coming to visit, which will be excellent for me because I know Daniel will like that and I am hoping that they bring me food.  I don't feel comfortable leaving him to get food like I did when Dan was in the ICU.

Based on the current state of things, being on track as predicted, Monday may be discharge day.  But then the hard part really begins because the recovery shifts into my hands.  A hospital bed will  be delivered to our house.  I think its going to have to go into our dining room.  And I will basically live downstairs with Daniel as long as I have to.   His bed in his room, is a great bed but it only elevates head and feet...we need one that lifts him up and down. 

Maybe I'll hang some Christmas lights on it.

Children like Daniel are incredibly special, and innocent, and gentle.  It is mentally rough to have to put them into a situation like this which means great great pain and spasms.  He doesn't understand, and his smile has completely disappeared.  I miss his smile and giggles.

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Sunday Morning, December 9, 2012

I woke up to the Orthopedic residents visiting to check on Daniel.  From what I understand a fever is not a fever if it is 100.6 or 101.00 or less, I guess.  Although Daniel was feeling pretty hot to me.  They don't worry about it.  I just wonder about what his body is feeling.  It's hard to be Mom in the hospital with a concern that simply doesn't concern the doctors.  I do know they have more experience with surgerical patients, but I have more experience with my Daniel.

Its quiet, its grey outside.  I am wondering when they are going to take his x rays that are needed before he can go home.  We also have to rent a hospital bed for home, so that we can easily take care of him. I told John to stay home today, and save on expenses but maybe I'm going to change my mind later when I'm hungry for food and company. 

I am enjoying the solitude as Daniel sleeps, as I know that home will mean busy busy busy.  Christmas is coming, and thankfully/hopefully we will not spend Christmas in the hospital again.  But in a sense we are bringing the hospital home for Christmas!! 

Scoliosis,  who knew.  10 years ago his spine was perfect and straight and his hips were in need of surgery.  Never even thought we would ever have to do this.  But time just went by so fast.

Being in the hospital with him, I've met many people.  All of them kind and caring.  We are not alone in the universe with our problem, there are very sick people around us, kids who have been injured, kids who have had surgery, kids with cancer, kids with RSV in restricted contact rooms.  I sometimes try to envision the rooms of the entire hospital and imagine I am a bird quietly flying over all of them scanning them and praying as I go.   I believe love and prayer can spread like an epidemic if we open our hearts.

Its not an isolated incident, what we experience, everything is connected in some fashion.  We are not alone in the universe, we are connected as brothers and sisters.  Some people sadly shut off to others, and yet sometimes a magic connection happens that warms your heart.  Sometimes in the most unexpected of ways.

Its been a crazy week.  Its been a very interesting and long week.  I am ready to go home.  Home is where love lives and healing will complete itself.  Daniel is a catalyst that holds together the selfishness of want and the unconditional feelings of gratefullness and pure love. 

There are so many people I want to thank, and so many people that have extended response to my asking for help.  I don't feel uncomfortable about going out on the limb of life to ask for help.  Because I know I am a child of God and that I am only as good as my faith in Him.  And I know I can not do this alone.  We are not alone in the universe.

From 12 noon until 2pm the unit we are in, 7-2, shuts down the lights and has quiet restful time.  It is as if peace just settled over the hospital.  Calm and quiet.   Praying time.  Sleeping time.  Thinking time.  And in my case, writing time.

BEFORE

AFTER

Scoliosis (from Ancient Greek: σκολίωσις skoliosis "obliquity, bending")[1] is a medical condition in which a person's spine is curved from side to side. Although it is a complex three-dimensional deformity, on an X-ray, viewed from the rear, the spine of an individual with scoliosis may look more like an "S" or a "C", rather than a straight line. Scoliosis is typically classified as either congenital (caused by vertebral anomalies present at birth), idiopathic (cause unknown, subclassified as infantile, juvenile, adolescent, or adult, according to when onset occurred), or neuromuscular (having developed as a secondary symptom of another condition, such as spina bifida, cerebral palsy, spinal muscular atrophy, or physical trauma).