Thursday June 27th, update

Paul is slowly gaining strength with each passing day.  He continues to push himself one small step at a time.  The surgeon had said he wanted Paul to push himself hard but not to exhaustion.  Today Paul turned himself in bed and stood up from the bed, both all on his own.  This is a major accomplishment and I am so proud of him! He is taking sips of tea and learning how to drink without choking himself too much.  At the moment, most sips end up in coughing fits that leave him tired. Paul is now on a clear liquid diet.  Broth, jello and tea.  Not that food has any value except for the oral satisfaction of tasting it. 

With the removal of Paul's esophagus and now having a stoma out the side of his neck we are struggling with the ostomy bag.  The neck is not a flat surface which is complex as ostomy bags are made for a surface that does not bend all the time. It also seems to fill faster then we like and the weight of liquids pulls on it which breaks the seal.  We are managing.  Needless to say there are a lot of dirty towel and washcloths going to the laundry from this room.  I am planning on sewing something up to help with this problem.  As they say... Necessity is the mother of invention!

Paul's heart rate started to go up again in the early afternoon.  They are treating it with medicines.  I asked the doctor about this recurring problem and he thinks it will turn itself around.  The ICU doctors feel that the trauma that Paul's body has been through is what is creating the rapid heartbeat.  They believe that having two major surgeries back to back put a big strain on Paul  It is not only the physical strain but the emotional aspects have his body in a flux that will take some time to heal.  The doctor said it was like going through open heart surgery twice and throwing in abdominal surgery for good measure.  So the best thing to do is let the body try to heal on it's own.  No more avoidable stress for him.  Now that his blood sugar is within normal range they are checking it every six hours instead of every hour, this is helping him to rest as he is not being disturbed hourly.  His breathing continues to be rapid and shallow but he is working very hard on taking deeper and deeper breaths. 

On a good note, Paul got to go outside today.  He was put in a wheelchair and had everything transferred to a mobile monitor.  He carried his drainage bags on his lap.  It was actually a bit comical as all the nurses cheered when he left his room.  They were just as excited for him to get out in the fresh air and sunshine as he was.  Upon arriving outside, he took in a deep breath and basked in the sunshine.  His eyes brightened and his smile lit up his entire face.  I can only imagine what he must have been feeling after spending 16 days in the same ICU room.  He asked the nurses to take him near the trees as he wanted to feel like he was part of nature.  He beamed and I beamed right along with him.  Afterwards he drink half of a green tea smoothie. We made a royal mess of things because the ostomy bag seal did not hold with the weight of the smoothie.   Oh well, towels and gowns are washable!

Paul is receiving Physical Therapy to help him become more mobile.  I am hoping that by Monday he will be able to walk on his own.  He requested that someone help him with his swallowing and choking, so Speech Therapy will work with him tomorrow.  Occupational Therapy will also be working with him to regain control of his everyday functions...brushing his teeth, combing his hair and shaving.  He is still receiving Respiratory Therapy every four hours to clear his lung as they are still suffering the effects of surgery.  With all of this plus the surgical team, the ICU team and the constant coming and going of the nurses, it no wonder he is tired and can not feel rested.

I was hoping that all his tubes would be out today but was told by the surgeon that he wants to make sure Paul's chest has no residual fluids that can cause an infection.  So those will have to wait.  For now I am happy that he can talk and smile, laugh and kid around with the nurses and tell me he loves me.  It is so good to see his smile.  I had missed that more then I could have imagined.

Time for sleep.  Tomorrow will be another busy day of learning new things and taking the baby steps that will lead home.... after all, All roads lead somewhere and this road is going to lead us back home.


Thank for being part of our journey,
Jo and Paul