Wow, I feel absolutely spent after this day. It's no secret...I'm not a good patient...nor a good patient's mother. In reflecting upon today, I'm reminded that there are two reasons I'm so grateful for my health and my healthy family. The first is obvious...healthy bodies allow us the physical freedom to do practically anything. But there's another reason I feel is just as big...and that's not having to be at the mercy of the medical establishment. Oh my goodness, what an ordeal. Again, I admit, I'm a control freak...so I don't do getting yanked around very well. At all.
We received another phone call this morning, this one telling us that now our two-hour, pre-op/anesthesiology appt. has been postponed until tomorrow at 7 AM (day of surgery) instead of 11:30 AM today, since they rescheduled the appt. with the surgeon until this afternoon. Evidently, that one has to happen before anesthesia. So we'll have zero chance to ask questions, receive instructions, anything, before we're headed into surgery. This was SO frustrating, but I figured we'd at least have a chance to finally talk to the Dr. this afternoon and get all the details of the procedure.
I tried to look at the bright side...at least we had a little more time to get down to the beach for the last thing Jake wanted to do before he's no longer able to get in the water.
We had a very nice time riding the waves in this thing. It was an absolutely beautiful day. It was so nice to take an hour and just relax. I had been really nervous about it...couldn't believe I had let Jake talk me into doing it...but I really wanted him to have some good memories of our trip here. We even had a sea turtle swim right up to us and pop his head out of the water for a breath, before swimming off. Of course, since I forgot the waterproof case to the dive camera, I had no camera (which is also why I only have this pic of Jake on the shore before I had to run and put the camera in the locker).
We finished with enough time to grab something quick for lunch and drive back to the lodge and rush down to the hospital. When we arrived at the counter, the receptionist said, "You'll be seeing Dr. Y"...to which I said, "No, Dr. X"...he said, "I'm confused, it says Dr. Y" To which I reply, "I don't even know him...do you mean to tell me we're not even going to see the Dr. performing the surgery? Why did they tell us to come at this time, then?" (Mind you...we are now on our third appt. time...yesterday AM, today AM and now today PM.) He told us to have a seat and he'd find out what was going on.
I was seething, tears already starting to well up. This whole thing has been such a comedy of errors....from the get go, {two years ago}...and the past couple of days have been the worst...with this whole chain reaction of screwed up appointments. I felt like just a number. {NEXT!} We had so many questions, and had been waiting so long to ask them. Other than the twenty minutes we met with the surgeon initially for him to look at Jake and decide he could help him, we've had nothing. No information. We wanted to know things like, how long is the surgery? Which method would actually be used? How long would he actually stay in the hospital? How long would he have to stay in bed? As the time got shorter, I felt more and more powerless...and disrespected. Surgery is tomorrow and I KNOW NONE OF THIS!!! The receptionist came back out and said that Dr. X was in surgery. I stood up and said, "This is ridiculous. I want to be speaking with the Dr. who is going to be cutting open my son, not a stand-in. I'm done. I'd like to speak with the Patient Contact Representative and the Marine Liaison. This is totally unacceptable."
On the way down the hall to the PCR office, I was shaking. I couldn't believe we'd gone through all of this hassle, and that these people thought it would be acceptable to just start cutting on my kid without letting us have as much specific information as we wanted. This couldn't possibly be the way it was supposed to happen. After sitting down with her and seeing the horror on her face over the way things had been handled, I knew it wasn't just me. A few minutes later, the receptionist appeared at the door and said Dr. X was there and would be seeing us. Apparently, he planned on seeing us all along and was just on his way down from surgery, just running late. Why no one else knew this, or the computer didn't reflect it, I don't know. It's too bad that this was just the cherry on top of everything else and not just isolated, or it wouldn't have gone this far.
So, this is the tense note on which we started out our appointment. Lovely! Dr. X wanted to know why I was talking to the PCR...and I said I felt like a number. I told him I thought he was a wonderful Dr., obviously very compassionate...but that while this may just be routine to him...this was a VERY big deal to us and we had almost NO information (voice cracking). I told him that while the game of appointment musical chairs was certainly frustrating, learning we wouldn't even be speaking with the actual surgeon was the last straw. He said that they {meaning the front desk guy} didn't know what they were talking about, that that was never the case...and I asked how I was supposed to know that? Anyway, as the appointment went on, the tension melted away, I got all the information I wanted and he admitted he would have done the same thing if he was in my situation with one of his kids. He apologized for all the bouncing around, but said he wasn't even aware of our existence until we showed up here last week, and had had to go to great lengths to fit us into the schedule. {I totally believe him and it shouldn't surprise me at all, but it slays me...who's in charge of this stuff, then?!}
OK...so here's a few things that blow my mind. {And I have to preface the first two by saying, I don't think this is how things normally go here. I'm very impressed with the Dr. overall and definitely want him doing Jake's surgery...I think it's just a continuation in the comedy of errors that has been our experience, for whatever reason.}
*As he's describing the procedure and mentions inserting the bone again...I ask, "Where is the bone coming from?" {Meaning...where on Jake's body.} Dr. X says, "Oh it's cadaver bone. We have it up in the lab." When he sees my puzzled face as I try to process this, he says, "Well, the chances of infection are practically nil, the chances of rejection are zero. If you don't want me to use that, then we can take some from his (I don't even remember where he was proposing because I was trying to wrap my brain around this) but that would be an additional surgery." For the record, I don't have a problem with cadaver bone. But am I the only one who thinks this is "lead-out" kind of info...not "after-thought, day before surgery" info? That's what I was trying to process...and it almost made me laugh. I tell him the cadaver bone is fine.
*As we are finishing up the appt, I mention something about the anesthesia appt the next day, and he apologizes again for us having to do it "day of," that it's obviously not ideal...but then casually says, "The only thing you really need to know tonight, is nothing by mouth after midnight...otherwise we can't do the surgery." I'm thinking, "Good to know. When were you going to mention that show-stopper?" I just let it go, though...there had been enough negative mojo in this appt already.
*They normally do this surgery on an outpatient basis. Once the patient is awake and pain is managed, they street you. I can't even fathom this. He said that since Jake was an aerovac patient, he would be admitted at least overnight, because they wouldn't send us back to the hotel with him in that condition. At least there's that!
We were totally spent at this point. Glad to have answers, but still feeling upset things had to get to the place that they did. I told Jake to pick someplace good for dinner. He decided to take up the Dr. on his recommendation:
Hawaii has sushi-go-rounds, too!
I had driven by one of these, but wasn't sure exactly how to get back. I kind of got lost and found it from the other direction, but we made it! We got there about twenty minutes before closing. That was enough time to put away a respectable amount of sushi.
Jake chose this darling, fishy, ice cream sandwich for dessert.
And the surprise inside? Chocolate? Of course not. Bean paste. Mmmm...just like home.
{Enjoy it, buddy...it'll be your last taste of anything for awhile.}
We received another phone call this morning, this one telling us that now our two-hour, pre-op/anesthesiology appt. has been postponed until tomorrow at 7 AM (day of surgery) instead of 11:30 AM today, since they rescheduled the appt. with the surgeon until this afternoon. Evidently, that one has to happen before anesthesia. So we'll have zero chance to ask questions, receive instructions, anything, before we're headed into surgery. This was SO frustrating, but I figured we'd at least have a chance to finally talk to the Dr. this afternoon and get all the details of the procedure.
I tried to look at the bright side...at least we had a little more time to get down to the beach for the last thing Jake wanted to do before he's no longer able to get in the water.
We had a very nice time riding the waves in this thing. It was an absolutely beautiful day. It was so nice to take an hour and just relax. I had been really nervous about it...couldn't believe I had let Jake talk me into doing it...but I really wanted him to have some good memories of our trip here. We even had a sea turtle swim right up to us and pop his head out of the water for a breath, before swimming off. Of course, since I forgot the waterproof case to the dive camera, I had no camera (which is also why I only have this pic of Jake on the shore before I had to run and put the camera in the locker).
We finished with enough time to grab something quick for lunch and drive back to the lodge and rush down to the hospital. When we arrived at the counter, the receptionist said, "You'll be seeing Dr. Y"...to which I said, "No, Dr. X"...he said, "I'm confused, it says Dr. Y" To which I reply, "I don't even know him...do you mean to tell me we're not even going to see the Dr. performing the surgery? Why did they tell us to come at this time, then?" (Mind you...we are now on our third appt. time...yesterday AM, today AM and now today PM.) He told us to have a seat and he'd find out what was going on.
I was seething, tears already starting to well up. This whole thing has been such a comedy of errors....from the get go, {two years ago}...and the past couple of days have been the worst...with this whole chain reaction of screwed up appointments. I felt like just a number. {NEXT!} We had so many questions, and had been waiting so long to ask them. Other than the twenty minutes we met with the surgeon initially for him to look at Jake and decide he could help him, we've had nothing. No information. We wanted to know things like, how long is the surgery? Which method would actually be used? How long would he actually stay in the hospital? How long would he have to stay in bed? As the time got shorter, I felt more and more powerless...and disrespected. Surgery is tomorrow and I KNOW NONE OF THIS!!! The receptionist came back out and said that Dr. X was in surgery. I stood up and said, "This is ridiculous. I want to be speaking with the Dr. who is going to be cutting open my son, not a stand-in. I'm done. I'd like to speak with the Patient Contact Representative and the Marine Liaison. This is totally unacceptable."
On the way down the hall to the PCR office, I was shaking. I couldn't believe we'd gone through all of this hassle, and that these people thought it would be acceptable to just start cutting on my kid without letting us have as much specific information as we wanted. This couldn't possibly be the way it was supposed to happen. After sitting down with her and seeing the horror on her face over the way things had been handled, I knew it wasn't just me. A few minutes later, the receptionist appeared at the door and said Dr. X was there and would be seeing us. Apparently, he planned on seeing us all along and was just on his way down from surgery, just running late. Why no one else knew this, or the computer didn't reflect it, I don't know. It's too bad that this was just the cherry on top of everything else and not just isolated, or it wouldn't have gone this far.
So, this is the tense note on which we started out our appointment. Lovely! Dr. X wanted to know why I was talking to the PCR...and I said I felt like a number. I told him I thought he was a wonderful Dr., obviously very compassionate...but that while this may just be routine to him...this was a VERY big deal to us and we had almost NO information (voice cracking). I told him that while the game of appointment musical chairs was certainly frustrating, learning we wouldn't even be speaking with the actual surgeon was the last straw. He said that they {meaning the front desk guy} didn't know what they were talking about, that that was never the case...and I asked how I was supposed to know that? Anyway, as the appointment went on, the tension melted away, I got all the information I wanted and he admitted he would have done the same thing if he was in my situation with one of his kids. He apologized for all the bouncing around, but said he wasn't even aware of our existence until we showed up here last week, and had had to go to great lengths to fit us into the schedule. {I totally believe him and it shouldn't surprise me at all, but it slays me...who's in charge of this stuff, then?!}
OK...so here's a few things that blow my mind. {And I have to preface the first two by saying, I don't think this is how things normally go here. I'm very impressed with the Dr. overall and definitely want him doing Jake's surgery...I think it's just a continuation in the comedy of errors that has been our experience, for whatever reason.}
*As he's describing the procedure and mentions inserting the bone again...I ask, "Where is the bone coming from?" {Meaning...where on Jake's body.} Dr. X says, "Oh it's cadaver bone. We have it up in the lab." When he sees my puzzled face as I try to process this, he says, "Well, the chances of infection are practically nil, the chances of rejection are zero. If you don't want me to use that, then we can take some from his (I don't even remember where he was proposing because I was trying to wrap my brain around this) but that would be an additional surgery." For the record, I don't have a problem with cadaver bone. But am I the only one who thinks this is "lead-out" kind of info...not "after-thought, day before surgery" info? That's what I was trying to process...and it almost made me laugh. I tell him the cadaver bone is fine.
*As we are finishing up the appt, I mention something about the anesthesia appt the next day, and he apologizes again for us having to do it "day of," that it's obviously not ideal...but then casually says, "The only thing you really need to know tonight, is nothing by mouth after midnight...otherwise we can't do the surgery." I'm thinking, "Good to know. When were you going to mention that show-stopper?" I just let it go, though...there had been enough negative mojo in this appt already.
*They normally do this surgery on an outpatient basis. Once the patient is awake and pain is managed, they street you. I can't even fathom this. He said that since Jake was an aerovac patient, he would be admitted at least overnight, because they wouldn't send us back to the hotel with him in that condition. At least there's that!
We were totally spent at this point. Glad to have answers, but still feeling upset things had to get to the place that they did. I told Jake to pick someplace good for dinner. He decided to take up the Dr. on his recommendation:
Hawaii has sushi-go-rounds, too!
I had driven by one of these, but wasn't sure exactly how to get back. I kind of got lost and found it from the other direction, but we made it! We got there about twenty minutes before closing. That was enough time to put away a respectable amount of sushi.
Jake chose this darling, fishy, ice cream sandwich for dessert.
And the surprise inside? Chocolate? Of course not. Bean paste. Mmmm...just like home.
{Enjoy it, buddy...it'll be your last taste of anything for awhile.}
3 comments:
You poor things. This story just keeps on getting worse...
Carrie, you are a good mom! Isn't it interesting that people really want federalized healthcare without fixing many of the processes and systems that need streamlining? What an emotionally exhausting process. I hope that everything goes well for you after this.
Man...I'm so sorry I've been out of the loop for a few weeks. This sounds like quite the terrible ordeal. I'm glad that you were able to get out with Jake for a bit of fun before the surgery though (even though you perhaps didn't want to be out in the water). That boat/bike/tricycle/bigwheel looks amazing!
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