Feeding tubes, electronics and PET scans

After hours waiting for people to make decisions and clear out ORs, David had his feeding tube fixed.  It does not leak.  However, he remains sure that it is going to leak.  The current tube has a 28 mm diameter. Eight years ago he started with one at 12 mm.  As they age it becomes incumbent to use larger and larger diameters to meet a snug fit in the oriface.  The gastric tubes max out at 30 mm.  The sweet nurse told him that
1.  This one would not leak now because they fixed it and tested it and
2.  The sizes max out at 30 mm and that the hospital does not stock that size and would have to special order it.
I asked about turnaround time and she said maybe overnight maybe several days.  At this point David was totally pissed off and said that she should order one to have on hand for him and she said they could not do it and mentioned something about fiscal constraints.  He asked for a Patient Advocate.  Imagine this with his voice being muffled with mucous so that she had to ask him to repeat things or ask me what he said.  I have "David" hearing (something like "mother"hearing) and can understand him.  Then imagine him not hearing well due to the same mucous and so it went.  I started searching Amazon for French GI Tubes and found a 30 mm diameter one.  I figured we could order it as a backup.  The nurse went away ostensibly to get a patient advocate.  David was upset and wanted to leave.  I convinced him to wait since he asked the nurse to do something and she was trying to accommodate him.  After 10 or 15 minutes another person came into the room and said that they DO have a 30 mm diameter tube but he was against putting it in until it was needed.  I guess nurse #1 thought David was demanding that size immediately.  I translated and we finally left after over 4 hours for a 10 minute procedure with the direct phone number to the Interventional Radiology unit and directions to call them directly with any problems and then to get David's internist to write the order.  Relieved we took the long trip back to the lobby with David in the wheelchair.  He insisted on stopping at patient registration and got a number for the patient advocate.

As we exited the building he began to pat his pockets and I noticed his iPhone was missing from its holder.  It was turned off and so I could not locate it with the Find my iPhone app.  After 45 minutes of backtracking the phone was located in the OR and returned to David.  This time the phone rang as we walked out and I told him to wait on the bench while I got the car.  He sat down with his cane, Kindle Fire and phone.  I got the car.  When he saw the car he jumped up and rushed to the car for me to talk on the phone.  It was the Imaging Center trying to schedule his PET scan for tomorrow but they couldn't understand him and he couldn't understand them.  I took over and the PET is scheduled for tomorrow at 10:30.  I put the apt into the calendar and we drove to Basilico where I gave him his breakfast (at 2:30 p.m.) and then we went inside for my lunch (courtesy of Jeff Hill's gift card).  I placed my order, got a number for the table and my drink and sat in a booth with David.  We talked and we're feeling better and less stress but when no food arrived after 30 minutes I went back to the counter and....the order taker marked it for take out and it had been sitting there.  So I got a refund and they redid the gnocchi.  It was finally served.  I ate.  We got ready to leave and I Asked him if he had his Kindle Fire.  He couldn't find it in our booth or the rest room.  Back to the hospital.  He went in and after 20 minutes or so emerged with said Kindle Fire.

By then we were each on our last nerves and came right home rather than shop for groceries.  He had his lunchtime meds and went to bed for a nap.  I dozed off in the recliner.  I just had a cup of herbal tea and six cookies for dinner.  I gave up alcohol for Lent and God is REALLY testing me.

So this is a slice of our lives these days.  At least one medical appointment each day.  Progressively worse prognoses.  It is really hard.  Things could still be OK.  The feeding tube could work well now.  The platelet count could mysteriously climb just as mysteriously as it dropped and the bone marrow biopsy could show normal activity.  The PET scan could determine that shadow on the CT is a surgical artifact from 2001 rather than a new tumor.  His cold or allergies will get better and he will be able to hear and be understood on the phone again.  That is my prayer for him.  I hope that everyone who reads this will also pray for this for him.