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Thursday, August 8, 2013

What If? For anyone "just tuning in" this post may leave you wondering what the heck I am rambling about, I hope you take the time to go back and review my earlier posts so you can catch up with our story. For anyone who has been along for the whole wild ride - Thank you!

What If?

I wanted more than anything for my mother to find relief from the awful pain in her back.  I just wished this surgery hadn't been necessary.  I couldn't help but worry.  I couldn't help but wonder "what if"?

What if the Rheumatologist mom had been seeing for years had NOT given her a Remicade infusion even after she had began complaining of symptoms that were clearly listed as warnings for this type of medication?

What if her primary care doctor had paid more attention to her increasing symptoms?

What if those two doctors hadn't, without consulting my mother, cancelled a surgery that had been scheduled to secure and/or replace her failing 25 year old prosthetic knee the year before she got so sick? They had told the Orthopaedic surgeon that mom wasn't able to tolerate such a surgery, that she wouldn't survive it.  I really believe she was much more able to survive it then than she was now.  I also really believed the metal in that knee had been the source of the staph infection that almost took her life.

What if that terrible infection could have been avoided if that prosthesis had been replaced before mom got so sick?

What if I had gotten involved sooner?  What if I lost my mind thinking about all this?

When my phone starting ringing, "what if" changed to What NOW?!

Mom had been in surgery approximately 5 hours when I received the second update from the OR nurse on her status.  I briefly wondered why they were calling me instead of updating the family in the waiting room.

I didn't have to wonder for long.  The nurse explained that since there were complications, in order to maintain their presence in the operating room, it had been decided the nurse should update by phone to a designated contact person rather than in person to the entire group.  Since I was moms POA and had been the one with her when she checked in for surgery, it followed suit that I was the "designated" contact person.  I forwarded the information regarding moms status via text to the family members in the waiting room at the hospital.

Shortly after I sent the update, I received a call from one of my sisters. The family wanted me to ask the nurse to come out & update them in the waiting room.  I understood their frustration, I was frustrated too. "OK. The OR nurse is the one updating me", I'm sure my irritation was obvious, "do we really want the nurse to leave the operating room"?  I was afraid updating the entire family could take the nurse away from the operating room for a good chunk of time. What if something went wrong and they needed the nurse to assist in moms care?  This was an extensive spine surgery and there were already "complications".  I still wasn't sure what those complications were and my imagination was trying to get the best of me.

We are not a "no questions asked" kind of family.  In my mind I could picture the nurse being cornered in the waiting room trying to deflect the myriad of questions the family was sure to have. It could easily take 1/2 hour or more just to say "she's OK".

The surgery had been scheduled for eight hours.  Approximately seven hours in to the surgery, I received the third update.  They wanted us to know that mom was doing fine, but the surgery was going to take longer than the eight hours it had been scheduled for.  I was assured I would continue to receive regular updates.

It was nearly ten hours after surgery started when the fourth update came in.  Mom was still doing well.  The surgeons were estimating at least another hour and then they would be ready to "close". I hoped they were telling me everything I needed to know.  I guess I had become pretty gun shy during the past year.  The doctors at home evidently either thought I wasn't smart enough or worthy enough to waste their time sharing "updates", or any other information for that matter.

Luckily, that wasn't the case here.  These doctors seemed to communicate on a whole different level from what we had been subjected to for the past year.  They seemed to encourage questions and weren't so arrogant that they felt they knew everything.  I'm a big fan of adequate information - good, bad or indifferent.  Just give it to me straight and let me process it.  Nearly twelve hours after moms surgery had begun, I was talking with the surgeon.  She was certainly giving it to me straight.

In an attempt to lessen the chance of collateral damage to her spine, they had planned to secure above and below moms many damaged discs with hooks.  This was the part mom had been so animated about when explaining to her friends what she understood about the surgery.  "They are going to use some kind of fancy hook and wrap to secure my spine", I heard her tell many people, "They are ordering them from France".  She had been pretty interested in the entire concept, so had I.

"We couldn't use the hooks." the surgeon was talking with her hands, "The osteoporosis is so advanced, we were afraid the hooks might cut through her bone".  She explained what they had done during the twelve hour surgery.  She then told me something that made my head spin, "We'll have to secure it in a couple weeks."  What was she saying?  Maybe I was too stupid to have them give it to me straight!

"A second back surgery?", I thought my knees were going to buckle.  The surgeon, whom I was certain had to be as exhausted as I was, took the time to explain the reason for a second surgery.  It would be painfully obvious to me later that I had not been completely "tuned in" to that conversation.

The anger I was feeling towards the doctors mom had been seeing at home, once again, took over my thoughts. Why hadn't they cared about moms deteriorating health and severe pain?  Why had they been so opposed to mom obtaining a second opinion?  How could her primary care have not tested her bone density more often?  He had diagnosed her some time ago with osteopenia, why hadn't he followed up?

The surgeon must have noticed that I was distracted.  She assured me we would talk more when mom was awake and they could assess her overall condition.

"She will be in the surgical ICU until she's more stable", the surgeon explained it should be "just a few hours" before they would move her to a room on the orthopaedic floor.  We were told when mom was more awake we would be able to see her in recovery.  "They'll come find you when you can go back", the surgeon said as she told us goodnight.

Was it going to be a "good night"?

I could really use a good night.

What if it wasn't a good night?


Anonymous said...

Well, at least with all these "what if's"; it has taught us all that there are resources and have learned a lot more possibilities that are out there. I'm starting to believe that people should be really careful with staying with just one doctor for too long a period of time. We can't change the "what if's" but we can change to "what else is out there and how can it help?" :-) I think that should be the better solution for consumers whom can't get the help they need; especially when it's available outside of their realm.

JM said...

Any time a doctor dismisses your concerns without thoroughly exploring WHY you're concerned and what the possibilities are, it's time to see another doctor. I, too, have seen doctors and nurses who have pigeonholed their patients into neat little categories and do not consider any other causes or reasons for symptoms and problems. I've seen doctors become so focused on one particular thing that is wrong that they overlook or ignore other symptoms and miss a different problem completely. I think this is a lot of what happened here.

I've also seen too many "experts" who are offended when someone wants a second opinion, seeing it as a challenge, rather than an opportunity to get a new perspective. This is pure ego taking charge, and it's absolutely not acceptable.

We are patients - but we are also consumers. We have the right to receive all the information available, in a timely manner, and to question anything we have doubts about. We have the right to answers. All the answers.

healthcare hostages said...

Thank you for your comment. I absolutely believe as patients (and family) should have ALL the options explained, not just the ones insurance will pay for........maybe we aren't as poor as we look!

healthcare hostages said...

Unfortunately, once so many things are let go for so long and ones health issues are so complex, it is difficult to find another doctor willing to take on the patient (at least in our area).

We need to all stand up and take our rights back. What happened to the days that WE interviewed the doctor? When did we lose the "know your body, know yourself" frame of mind?

Jenny Hodges said...

I hope it's a good night! Always get a second opinion! Hugs.

Linda Lulke said...

Your post brought forward memories of my son's 12 hour brain tumor surgery a few years ago. He is doing well, but that day was like a bad dream

As a Life Coach, I support people in letting go of questions like - what if? - and use that energy in ways that are more supportive or effective. I learned this in my personal life too.

I understand your anger. I get it. Just don't hang onto it longer than you need to. It will only hurt YOU and will not help.

I honor your willingness to care for your mom and courage to face the things you face and share your journey..