July 10, 2013

Today started out with hope and expectations. Paul was sure that today he would be able to get off the ventilator and breath on his own. He was hopeful that this would be the day to stop the daily bronchoscopes and was encouraged by the surgeon that he was well enough to get off the ventilator.

This morning the doctors did a bronchoscope to clean out any fluid build up from the previous night. There didn't seem to be much mucus which seemed to be a good sign. I know it was very hard for him as he was not sedated for this one as they wanted him to be alert and awake to try and get him off the ventilator.

At 9:00 AM they took him off the ventilator. The doctors felt that he would be fine instead of trying to wean him over a few more days. He did well with the coughing up phlegm and taking deep breaths all morning. He even was smiling and bright eyed as Elizabeth and Gage came to tell him Goodbye as they were heading back up North for a much needed trip back home.

The doctors came in and did their assessment and ordered his chest tubes off the bubblers.  I'm not sure what the bubblers do, but I think they help drain the fluid that builds up inside of Paul's chest from the previous surgeries as he's had them since the first surgery.  Not long after that Paul seemed to have trouble getting in enough air to cough. I let the nurse know that he was having trouble and she turned up the amount of oxygen going to his oxygen mask. This didn't seem to help, so the doctors were called. Paul had been adamant about not being put back on the ventilator but with the fear of drowning from the fluid in his lungs he agreed not only to going back on the ventilator but also into surgery for a fourth time. When the doctor ordered the ventilator back on, within minutes Paul's blood pressure, temperature and heart rate all increased so much that I feared he might not make it to the operating room. I'm beginning to believe that Paul's body is protesting all the tubes and needles. It seems that whenever they insert something new he has a reaction. Paul was taken into surgery to have a tracheotomy placed to support his breathing. He is once again resting and tomorrow will be a new day.

The tracheotomy is going to present a challenge as it sits right next to the hole that is in the neck from the failed esophagectomy surgery. The ostomy bag, which was put in place because Paul does not have an esophagus anymore, overlaps the tracheotomy tubing.  It seems we continue to come to more and more bridges to cross. As Paul said to the doctor before agreeing to yet another surgery, it is always "one more thing" . The doctor assured Paul and I that the tracheotomy will not interfere with the healing of the repair on the trachea.  All we can do is trust the doctors to know what is best for Paul.

Paul is sleeping and I pray that the rest will be peace filled and give him some healing.  I rest when I can and sleep whenever I feel tired, but the concerns of all this is becoming overwhelming.  I do owe one doctor an apology as I think I lost my cool with her after seeing him from this latest surgery.  It is so hard to watch the one you love go through so much.  Especially when you think the right decisions are already in place and they turn out to be questioned or the feeling of being over ruled. 

Paul continues to be concerned that the daily brochoscopes will cause damage and that the repair that was made in the third surgery is still not completely healed.  We both want Paul to get well enough to go home before we have to go through the now needed Reconstruction surgery in the future. 

I continue to remind myself... One baby step at a time.

Thank you for all the cards that give Paul encouragement.

Hugs to all our family and friends.
Jo