Speaking of family…and feeding tubes

Imagine having a complete stranger going into a doctor’s appointment with you. Imagine that you will likely never see this person again, yet they will be there to assist in making decisions when you can’t for yourself, and have little medical history to go by except for the sealed envelope they are charged to bring along to pass on to the doctor. It sucks not to always be able to speak for yourself but having a trusted family member along would give you some comfort, I am sure.

This past Tuesday, my dad had an appt. with a GI doctor in Bourbonnais at 9am. I was notified at 10:45pm on Monday by the night nurse Gayle that we know well, just happened to be checking on records and thought she would make sure I knew. Ok then. I was sick, sick enough to know the VA home would not allow me to be there. So I got my act together in the morning to meet the VA van, my dad and the CNA assigned to my dad, that we had never met. Now, she’s worked there for 25 years and seemed very capable…but still!

So the doctor my dad was scheduled with (Dr. Ashish Shah) was quite new to the practice, and to the field. I did a check on him overnight and seemingly he just joined this group: Digestive Disease Consultants in Bourbonnais. I was impressed by the offices and large support staff and readiness. My dad was already in the exam room with only a blanket covering him in his lightweight clothes (it was cold that morning) and the CNA Mary that we both just met. She asked to stay in the exam room so she could report back as well, since I was not going to follow them back. I said it was fine.

Then Dr. Ashish Shah came in. So young, and by what I could research, very inexperienced. We talked about the nasty feeding tube and the perceived differences between a peg tube and a GI tube, as I am still getting conflicting reports on what my dad actually has. Then he said he could just pull the thing right out, and replace it – right while he’s sitting in his wheelchair. I had presumed that this appointment was strictly a consultation/meet & greet; not the actual procedure of changing a tube.

I challenged him a great deal on this. My understanding from the VA doctor is that my dad would need to be given a mild sedative and this swap would be done in an operating room, hopefully as an outpatient. I could sense this doctor’s lack of experience and even confidence and asked for another to step in – as a 2nd opinion. I even was able to contact the surgeon’s (Dr. Bhatia who did the initial placement on 2/19) to get them to fax a procedure report over because these doctors were working blind. There was no X-ray in advance or during the procedure and in the end (of this appointment) they literally just pulled the thing out while my dad was sitting up in his wheelchair. Mary and I both had to leave the room. Apparently, the 5 minute or so process was easy for the doctors, not so much on my dad – but he handled it well.

Then I was told we have to take my dad over to Riverside for X-rays to assure the new tube was correctly placed before my dad could even be fed through it. At first I thought we were going across the street to the Riverside center where my dad’s foot doctor is – as it seemed full service. So Mary got the authorization from the VA staff to allow the driver to take she and my dad across the way. When we were all ready to go, we learned that he was actually going to have to go to the hospital in Kankakee. So authorization would have to be given all over again. Soon after, I followed the med transport with my Dad and Mary inside, now even further south to Riverside Hospital in Kankakee. When all I really wanted to do was go home and go to bed. I was miserable.

It took 4 people in the radiology department to get my dad onto a table, a shorter one than they are used to. I have to remind anyone who handles him in such a way, that his left foot/heel cannot touch the ground or have any pressure on it; that my dad’s left leg is quite sore and he doesn’t want it maneuvered; that he has little strength but has gotten accustomed to being placed in a lift contraption and hanging on while they maneuver him onto the table or in/out of his wheelchair. This was very challenging for the staff and as many lifts are different, it was hard on my dad as well. The good 374news is the tube was appropriately placed and after this too long morning and early afternoon, my dad was able to return to the VA home. But I was going straight home myself.

So just today (Thursday) at about 815am – my dad calls to inform me he’s on his way to the foot doctor and will I be joining him. WTH? No, I had no idea. And as my Advil PM was still working on me, Bob had to call the VA home to confirm. No foot doctor appointment – but he was now going to the Infectious Disease doctor at 10am, in Kankakee. I was not informed of this – as the last I knew was his appt. was rescheduled to 10/29 since the last one had been a trip wasted (the doctor was not there and we were told she had changed the appt. but no one told me, etc.). Now today, there is no way I can make it and even though my brother is closer and just happens to be starting work late this morning, he cannot accompany my dad. So yet another strange CNA has been assigned to accompany my dad, and this will be his first doctor appt. in all these months without me. I do have to work today. Rico has an emergency surgery follow up this morning. I have my own personal appointment. Yet I feel guilty about not being there. Since this is a follow-up and I’ve been on two other of these appointments, I know that his foot will be examined and re-dressed and she will determine if he needs further intense antibiotics or not. Depending on that decision, he could have the port in his chest (used to deliver the long term meds) removed today. I know the only decision making will be that of the doctor’s – at least I hope so.

But yet the lack of communication or sometimes missing links for these appointments are becoming a concern. The social worker and administrative management are having a meeting about many concerns I’ve had, hopefully later today as well. But this POA responsibility for health and finances, and just being a daughter, is far more than a part time job. I even had to change my own oncology check-up appointment and I shouldn’t have to do that. But my dad’s care and attention is important. He is just so lost and sad and confused and that won’t be going away. There’s just not enough of me to be there every single day, though I’ve tried. And his appointments are important and it just seems I have to schedule my own work/life around that. And in closing, I am grateful for those who accompany him – as they do seem to take it serious and they are responsible for him from the moment he leaves his room until the moment he returns.

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