Pacemaker Change

Yesterday I drove our happy-go-lucky, feeling-well Gracie girl into Oakland to have her pacemaker changed.  No matter how many surgeries (this was #41) or how many times under general anesthesia (this was #29... not counting "procedural sedations"), we never, ever hand our daughter over without a pit in our stomachs.  It just doesn't get easier.  It also doesn't get easier trying to help her understand that she is going to sleep feeling well and will wake up in pain... or managed pain.  That stinks beyond explanation.  It always feels like such a betrayal to her.  All I can do to remedy that is be by her side and do everything within my power to care for her, advocate for her and love on her. 

I drove her in and John met us there.  Before he arrived, the cardiac team - - Gracie's cardiologist, the CVICU nurse, the surgeon, the Medtronic rep and the anesthesiologist - - all gathered at her bedside and informed me that today she would likely be having open heart surgery to replace her ventricular lead.  (The surgery, as scheduled, was to replace her pacemaker generator only.  Since it is implanted in her left abdomen, it is a fairly "easy" surgery that doesn't actually involve the heart - - other than monitoring, of course.  The leads, on the other hand, are implanted directly into the heart and run to the generator.)  I nearly fainted.  Really... I felt the beads of sweat instantly appear on my forehead, the blood rush from my face and my heart instantly raced.  "We DID NOT sign up for open heart surgery today," was all I could think.  I am SO NOT prepared... neither is John and, most certainly, not Gracie.  They went on to explain that they noticed some "noise" in the testing on that lead and that they would run further tests prior to surgery, but that I needed to be prepared for them to also replace the lead.  The leads are the originals placed in August of 2004.  They are nearly ten years old and it makes perfect sense that there might be an issue... it's actually a question I ask all the time.  "How much time do you think we have left on these leads?"  They've never mentioned an issue... and certainly didn't mention one in our pre-op appointment.  The answer has always been a version of, "In some ways she is so lucky that she doesn't grow much and that her activity level is not typical of a child her age, otherwise she would have outgrown her leads and her twice-repaired/re-built valve."  I always take that comment as a good cardiac outcome, but really, would much rather her be more active, bigger and have needed one extra surgery to replace something she'd "outgrown."  Anyway, it took another 30 minutes or so, but they finally determined that the need to replace the lead was "unlikely."   Good grief almighty.  I was exhausted at that point and they hadn't even finished prepping Gracie for the OR. 

Then, the nurse laid another doozie on me... "Did you bring urine?"  Me... still reeling from the massive surge in my blood pressure, "Um... urine?  No...?"  The nurse (super, duper sweet... lucky for her, because I was already done and we hadn't even started!) said, "We are supposed to get urine for any patient Gracie's age and older to check for pregnancy prior to anesthesia.  If you didn't bring any, we will have to catheterize her."  Oh. HECK. NO.  This "policy" was news to me.  It was also preposterous.  And, while I am perfectly willing to bring in urine if I am told to, I am not willing to put Gracie through a catheterization while awake due to the negligence of the pre-op team who failed to provide me with this information.  So, I told the sweet (again, lucky for her) nurse that they are welcome to catheterize her once she is out (which, of course, defeats their entire purpose) or they can forgo the urine and trust the fact that Gracie is not pregnant.  She then earned double-sweet-stripes by fully supporting my decision - - not that I needed her approval, I was standing firm.  But knowing she was in Gracie's corner made me feel so much better.  Thankfully, after some bantering back and forth amongst the team and the hospital "powers," we (docs and I) signed additional disclosures and agreed to move forward without poking and prodding at Gracie for some potty (which I had also argued they'd be hard pressed to get considering she had been off fluids for hours!). 

And then, after all of that chaos was settled, in saunters my husband.  Seriously... the man missed it all!  I had been through a virtual emotional roller coaster and he walks in as the dust all settled!! How does that even work?! Ha!  All that matters, though, is that all of the hoopla prior to surgery was the only hoopla for the rest of the day.  Surgery went well, they reconfirmed in the OR that they didn't need to replace her ventricular lead, and she spent one (long) night in the ICU.  Children's Oakland has an open-floor ICU... something we are definitely not accustomed to.  There are only curtains separating the beds, the lights cannot be dimmed enough for Gracie's liking and it is SO LOUD.  The sound, of course, did not bother Gracie, but not being able to control the lighting around us was horrible.  She just kept signing "light" over and over.  I didn't really want to leave her side for a second, but I wasn't even allowed to have a water bottle at her bedside, so I was forced to hydrate outside the unit.  I am just so thankful everything went well and she only had to be there one full day/night... because any longer and I might have gone nuts!

We are home now and Gracie is asleep.  I am hopeful that her pain will be well managed with the meds we have in our makeshift hospital.  She was very feisty on the drive home as well as when we arrived... all of her energy spent fixated on trying to remove her surgical dressing.  The fear of infection is huge for us given her history, so keeping her little germy hands away is crucial.  She understands that she is not supposed to touch the dressing, but she doesn't understand why - - not that it would make a big difference!  She is determined to do what she wants to do whenever she wants to do it.  This girl... the spunk and sass are what I love most and what are, many times, most challenging!  For now, though, she sleeps and ignores that site.