Back at home again, and countdown to TACE #2 begins | yosoyrosa's Blog

My research on the internet from www.nih.gov had showed that pancreatitis normally resolves within 5-7 days if there is no food intake and plenty of fluids.  Right on schedule, Friday night he was eating solid foods, and were were working with the medical staff to ensure his release.  Alas it was too late for sign-out by the hospital doctor so he'd have to stay for morning rounds before we could bring him home.

The day after we received the CT scan results, the hospital had performed another procedure to visualize the belly organs using radioisotope.  The findings again confirmed the cholecystitis which is a thickening of the gallbladder wall and reduction in the ability to concentrate and store bile, which is required to break down fats as part of digestion.   The screening also confirmed the pancratitis, however there was no obstruction of the cystic or common bile duct requiring immediate treatment since if a gallstone was the root cause of the problem, it had passed. 

There's a lot to be said about making sure to work with the caregivers in the hospital, and take an active role in monitoring the activity.  For those going through the experience alone, my advice is to ensure there is someone from the community, a church or agency that will be a patient advocate.  Examples in our case included:

• Bring current medication with you when you go to the hospital, we were asked several times about what was being taken, dosage and frequency.  It was easier to hand over the bottles.
• I had forgotten the case file with recent results and visits, this would have been helpful in providing dates, progress and contact information.
• I was asked if we had a current copy of an advance directive for the file, this should be completed and in hand prior to arrival to make sure wishes are followed should worst case scenario emerge.
• The hospital doctor overseeing the case discussed his current case treatments with both of us.  Since this was the community hospital with limited cancer care staff, we agreed there was little tolerance for any complications.  If anything invasive was prescribed or alarming change in physiology occured, he would be transferred immediatly to the university hospital as long as he was stable enough for the move.
• The IV drug initially provided was morphine which made him naseous, and he was transitioned to Norco since he'd had no problems with that, however with the tylenol base it was not good for his liver.  You can negotiate treatment, eventually we agreed to try demorol making sure there was at least one or two drugs for nausea on the chart so they would be available if necessary. 
• All scans and test results were requested and personally sent to the university transplant team, to make sure they had a current copy on file.
• Intravenous drugs administerred in the veins of the hand need to be checked, as we found after 4 days his hand looked irritated and swoolen, the attending nurse at the time admitted it should have been changed much earlier.  We also had to request staff change the bedclothes and blankets, as there was no regular change routine as he had not soiled them.
• Although the night shifts were wonderful, we monitored how long it took nurses to respond to the call button or a phone call for help during the day shifts after noticing it had been in excess of 30 minutes.  IV bag monitors would continue to beep every few minutes; the alarm stopped having a sense of urgency as his progress improved.  We were assured that the nurse/patient ratio was well within guidelines and I saw that on several occasions I could find them at the desk chatting away.  My husband complained to the hospital doctor, again to the head nurse on each shift, and after watching another patient from the monitored care area leaving without absence being noticed, we are writing a formal complaint to the hospital administration.

At the end of the week, I felt strong and accepted it all as another hiccup in the course of treatment.  Reality sunk in last night we had held onto each other in bed, luxurious closeness and comfort, words weren't needed or wanted.    

When the two of us arrived in church this morning, we both sat through prayer with tears running down our cheeks.  After service, I joined an old friend who I used to sing with was playing piano, and all she had to say was "You've had quite a walk this year" for me to break down again.  A woman strong in faith and conviction, with so many challenges of her own, she continued to offer her support to us, and I was truly humbled.  She encouraged me to find my voice again, as she reminded me this is where I'd found my faith and connection with God before.

This is the scariest time of our lives, and are counting down to the next TACE treatment scheduled in only 12 days.  I picked up a songbook, and put it down again.  I'm writing now, and hoping I'll be singing again soon.