Hard Core Advocating - Surgery Wednesday 8/11

I will preface this post by stating something that's already well known... Gracie is a trooper. She continues to blow through IVs and is currently on number eight. She did "well" today (always a qualified statement), all things considered.

That being said, it was a very difficult day that involved numerous phone calls to doctors, case managers, the surgeon's office and the surgeon himself. There were a lot of tears... tears of anger, sadness, frustration, irritation and more anger... you name a reason to cry and I cried for it today. (It is quite possible that I had a lot of tears that needed crying, as I've not had a good, solid uninhibited sob in a while.) At the end of the day, I cried tears of relief, as, thankfully, we got surgery scheduled for tomorrow instead of next week or later. It's just so unfortunate that it took hard core advocating to get there.

I'll back up a bit. When Gracie was discharged on July 22, we (i.e. John, the GI team, the attending physician and I) had not wanted Gracie discharged. We all felt as though she would end up back in the hospital before we could get surgery accomplished - - we just wanted to move forward with surgery... the sooner, the better. She had been cleared by everyone, but the surgeon did not want to do it that admission. We were told he was going on vacation... he was not... and it doesn't, at this point, matter why or how that piece of info was incorrectly communicated. Bottom line is we took her home, did some more surgery related soul searching, got it scheduled, she got sick again (everyone feels that would have happened in that amount of time regardless of where she was) and she missed her scheduled surgery date last Friday.

Because of the infection, surgery was cancelled. But, once her cultures were negative, we were told that the surgeon's office was working on getting Gracie on the schedule with the assumption that she'd be fully cleared. Since Friday, everyone (and I mean everyone, BUT the surgeon, whom we haven't yet seen this admission) had been saying that it was looking like Wednesday, yet at the same time, she never was officially on the schedule.

Cut to today... I called John at the hospital to find out if he'd heard anything. Not a word. It was agreed that he'd ask every single person who walked into the room until he got an answer. In the meantime, I called the surgeon's office directly. They informed me that Gracie wasn't on the schedule and I asked that they have the scheduler or surgeon call me directly. I needed an answer, not the runaround. Back at the hospital, John was informed that the scheduler was out sick. Minutes later the surgeon's office called me back and said that the schedule was really full this week and he (the surgeon) was trying to get her on for next week. She ended her little speech with, "Okay?" To which I said, "No... have the surgeon call me directly, please. We are not 'okay' with her sitting in the hospital waiting for surgery for at least another week."

In the meantime, in an effort to convince the surgeon that this needed to get accomplished sooner than later, I continued my telephone tirade by leaving messages for the GI doc, the Pulmonologist and the Case Manager on the PICU. I word-vomited on all their voicemails about the situation. I knew that they were on our side, but whether or not they'd have clout with the surgeon at this point was questionable. I asked the case manager to set-up a care conference. The pulmonologist ended up rounding on Gracie to check on her new trach (more on that below) and John told her what was going on. She said she'd go to the OR herself and talk to the surgeon. We don't know that she actually did. No sooner had she left Gracie's bedside did the surgeon call me to say that she was NOT having surgery this week. He went on to say that the schedule was full and that Gracie's case was not emergent enough to bump anyone else. He also said that there was no way that any of his Nurse Practitioners would have said that Wednesday was a possibility. He said that information never came from his office and that he was sorry we had been so terribly misinformed. At that point, my tears were free flowing and there was no way I could keep myself from sounding hysterical. I pleaded with him about the fact that she continues to blow through IVs, that we can't feed her through her G-tube or she'll start having another set of issues prior to surgery... not to mention the increased risk of infection just for sitting in the hospital... what did he expect us to do? She can't leave her room because she is in isolation, she is depressed and begging to go home... what are we supposed to do for her? He said to put in another central line to avoid the IV issue... I reminded him that Interventional Radiology would require another anesthesia - - wouldn't it be better to just put her under once? He literally raised his voice in frustration with the fact that we'd been given any sort of hope that this week was possible. He said that by calling me himself about this he was already going above and beyond what he does for most parents. I told him it doesn't matter what he does for others, I needed him to hear me about my child. He said he would try to add her to Monday's schedule, but that next week was already full as well.

By the time we got off the phone, I was sobbing, Preston (yes... all of this in front of Preston because no matter what I did, he followed me all through the house) was crying, too, and I had to explain to him that mommy was so very mad that she was crying and she was really sorry if he was scared. Later he told me, "I was so mad that you were so mad that I cry, too, Mama." So sweet, but I feel so guilty. I just couldn't hold it together, though, no matter how hard I tried. After I got off the phone with the surgeon, more hysterical calls to the John, my mom, the GI office and the case manager. About an hour later, the surgeon called me back, claimed to have moved mountains and said that he got an OR time for tomorrow (Wednesday) at 2:15pm. He said that he would be doing a lot of extra driving from one hospital to another to get it done... for which I am grateful, but not at all sorry. I have no idea what or who actually triggered him to get Gracie on the schedule ASAP, nor do I care. The point is, it's done and she doesn't have to sit and wait another week or more. I know he is a good man... I know he is an excellent surgeon. I'd like to think that once he had five minutes to really think about the situation, he just did the right thing.

I hate that I had to be a stalker today. I hate that I was hysterical, especially when trying to talk to doctors. I hate that it all came down to this, because up until this whole fiasco, this stay had been truly wonderful as far as care is concerned. In the end, the surgeon is doing the right thing - - the thing that considers the whole patient and the whole situation, not just the surgery itself. It's just so infuriating that it had to get to the point that it did. The wonderful case manager, Jo, reminded me that I was doing my job as Gracie's mama... that it wasn't as though I woke up today with the agenda to get under the surgeon's skin. She's right... my focus is my daughter and I only did what was in her best interest. Like me, she is sorry that it had to come down to some serious "pit-bulling," and yet I shouldn't apologize for it at all. I appreciate that reminder so much.

Please keep our sweet girl in your thoughts and/or prayers Wednesday as this surgery, while "routine," has no guarantee of being the end-all solution for Gracie. Furthermore, it is a 'gut revision' and, as such, does not have an easy recovery at all.

On another note, the resident and attending in the PICU did an excellent job getting all tests and procedures done in order to clear Gracie for that Wednesday target date. On Sunday she had her echocardiogram to check for any issues following the yeast infection in her blood. On Monday she had an abdominal ultrasound, a bronchoscopy, a CT of her lungs and an Opthalamolgic Exam which included dilation of her eyes. It was, needless to say, a very busy day. Her echo, ultrasound and CT came back negative as did the eye exam.

Unfortunately, the bronch showed that her tracheolmalacia has worsened and as a result, the pulmonologist changed her trach to a larger, longer temporary one and has ordered her a custom trach which we should receive next Monday. Essentially, Gracie's airway is so floppy, it was easily collapsing just below her old trach. In theory, this contributed to her inability to manage her secretions, her violent coughing jags, and her gagging. The longer trach will (or should) help keep everything open. So far, though, it hasn't made a difference... she is gagging more, actually, as she tries to adjust to the way it feels. Her secretions haven't yet lessened either. It's a "wait and see" game for now... they may have to adjust the trach again, but until she gets through surgery, there isn't any way of really knowing whether it has helped or if it needs some tweaking.

So many things going on... steps forward almost guarantee a step or two backward. Hopefully, over the next week, we gain more steps than we lose.