So, have you ever seen that movie with Denzel Washington, "John Q.", in which a guy goes postal on a hospital in order to get his kid medical help?...
Last night, it was confirmed that Evy would be getting her central removed this morning. Read those last two words again. We stopped her feeds at midnight so that she would be ready to go by 8am. When we woke up this morning, our nurse told us that she was scheduled for 12:30. Now, I don't know where y'all are from, but where I'm from, the MORNING ends sometime around 11:59am, and for a procedure, I would assume morning meant from 8 to 10 or 11 the latest. I was upset because that was an extra 4 1/2 hours that Evy would have to be without food. But I tried to distract as best as I could, although we're always trying to encourage Evy to eat food and get her appetite back, and it's really upsetting to have to tell her "no" when she asks for real food to eat. A child has to be NPO (w/o food) for 8 hours prior to a surgery. Obviously, they told us to stop her feeds far too early.
Noon rolls around, and I know that Mama and Stella are almost here, but they'll be staying out of sight until after we head down, so as not to upset Evy (Evy wants to nurse whenever she sees Jill.) Then, around 12:30, our nurse calls down to the OR admissions (they did NOT call us. Guess we were supposed to just guess what the hell was going on) and come to find out there was a procedure that went an hour and a half long, so we'll be pushed back about 2 hours. Now we're starting to get a bit mad. You might recall that last time we had her line out, the OR needed to fit in an emergency procedure, so we would be bumped. Fair enough, and some kid must have needed some help quickly. But instead of moving us back a slot, we got shoved to the back of the line and were the last procedure of the day, making Evy go without food for an extra 5 hours.
So Mama and Stella come up, and mama also gets slightly annoyed at the matter. (Edit by Jill: Brian is so kind to only say "slightly annoyed." Don't mess with my kid, people!) We try and keep Evy happy and not have food or water around her, and make it the last hour or two. But her screams for food were too much, and so at 1:30 we ask a nurse to call down. They tell it will be "a couple of hours." In the medical world, time does not always follow the same rules of physics, and a couple of hours can be any length of time. It's like when your mechanic says, "it's going to cost a bit more...". Just write a blank check.
Now we are very mad, and we start discussing if we just want to reschedule the procedure and feed our poor baby. Our fear was that if they scheduled her for another morning the same crap would happen, and we would have no way of knowing when her procedure would actually take place. The nurses and PA's know we are upset, and some start making calls to see what could be done. We had also asked for a patient representative to come up (apparently that's the official person who we should bitch to), but they never arrived. Whoops!
So Jill looks at me and says "I'm going down there" meaning the OR. I say "OK, but take Evy, so they can see what they're putting this two-year-old-child-with-brain-cancer-who-still-usually- has-the-world's-disposition through" (paraphrasing). So Jill grabs Evy and reminds me that she doesn't know where the OR is so Stella and I are coming. (I'll admit that I would have been fine staying upstairs with Stella, out of the way, not involved in any hospital security reports, etc., but then realized that we're all in this together so let's go!).
Just in case I haven't made it clear, Jill is fired up now, which is how she gets results (kinda like how Bruce Banner got results when he transformed into the Hulk). I first navigate us to one of the pre-op units that we had been taken to in the past, thinking that's where we would be headed today. Jill picks up the phone outside and asks for someone to come out and help us. Meanwhile, some nice medical person who had been walking by stopped to help untangle a few of Evy's cords, not realizing what he was walking into. Also meanwhile, I happen to see one of the Child Life specialists passing by, who came over to see if she could help Evy get ready for surgery. So, the lady from the pre-op unit comes out, and Jill lets her know exactly why we are mad. She's looking at the medical guy and the child life specialist asking "are they coming here? Did we call them down?" The medical guy was like "I was just untangling her lines" and then he got the hell out of there. The child life specialist was just trying to catch up to the storm. Then the pre-op lady realized we're pediatrics, and quickly diverts us toward the correct unit and hustles back into her area.
So we are moving down the hall, headed for the pediatric pre-op area (which I then recognize as the place we went last time at 6 pm when Evy was starving and beside herself with exhaustion). We go in, hit the buzzer, and one of the nurses comes out, and Jill explains to this lady exactly her unit's attitude of casually pushing our baby girl back hours at a time does to her. (Edit by Jill: I took Evy down to SHOW them what they are putting babies through. Evy was distraught and screaming like I had never witnessed before. Their unit was way too quiet which I feel makes it easy for them to ignore what their terrible scheduling practices do to the little ones.) The child life specialist now decides to head back upstairs to get our info for the pre-op people (which I think was her nice way of saying she was going up to let them know what the crazy Carrolls were up to and get the more senior child life specialist to deal with us). The ped's pre-op nurse was very nice and took Jill and Evy back into the unit while Stella and I headed back upstairs. The nurses down there also told Jill they love seeing a mama fight for their kid! I'm sure people around here see too much of the opposite, so are willing to put up with some attitude from parents if it's because they want the very best for their kid.
When we got back up, I wasn't sure how the people would respond. The PA basically said she understood and she was trying to get us in earlier, but maybe just leave a note or something next time we go. The nurses were all very supportive and cheered us on. I wasn't sure if they actually thought we did the right thing or they were just happy to have some juicy drama to make the work day more enjoyable. (it turns out to be the former, and they all said that like to see parents fighting for their kids and that is exactly what they would have done if it were their own child).
From what Jill tells me, the people in pre-op were quite responsive to our complaints, and realize now that they need to change the way they handle pediatric cases, and that a two year old doesn't get it when you tell them, "hey, the last case went a bit long, so just try not to eat for a couple more hours, OK?" They also have a policy of telling everybody midnight for cutting off feeds, even if they aren't scheduled until later than 8am. I heard one explanation that it's so, just in case, if the 8am kid is canceled, you'll be ready to go. The logic doesn't exactly work, since if that 8am kid goes as scheduled (which I have to imagine more of them go ahead then are canceled) then you're screwed. Something else for them to think about and get straightened out.
Evy was able to sleep a bit, and Holly from child life did a great job of keeping her happy while we waited to get in to surgery. The surgeon was a bit cranky about things, but we know she is a great doctor and we kinda wanted some people in charge to be annoyed as well. Jill got along well with the nurses down there, who have always been great with Evy, and Evy was finally taken back into the OR at about 3:30.
Everything went very smoothly, and Evy woke up dazed but was nursing in no time. After about 10 minutes, she pulled off and yelled "hummus!" The look on the nurse's face was priceless. So I ran up and grabbed some hummus and chips and a bag with her NG feeds, so we could start filling her tank back up. And Stella, of course, took everything in stride and had a great time (which she always does at the hospital, or "hopsicle" as she says) doing some artwork, eating some junk food, running around the halls, etc.
Evy went right to bed and is sleeping peacefully. The next event is Friday when she will have her PICC line put in. We are doing that one in a special radiology section, as they want to inject some contrast to make sure that all her veins around her heart are looking OK after everything with her lines. And, they have her scheduled for 1:30. They're looking into other scheduling options, lest we have a repeat of today. Apparently they have two slots each day for putting PICC lines into kids: 9am and 1:30pm. Who came up with that idea? We are now even more thankful for the care up in Boston, as everyday they got the littlest kids in by 9:30 at the latest, knowing they had been without food for hours.
So that was our exciting day. To any fellow cancer parents out there, or anyone else whose kid is going through something like this, just remember: it's OK to be crazy if it's in your kid's best interest and that the medical folks work for you, so tell them what you would like (and if that doesn't work, tell them what you NEED...NOW).
And from what I've heard, the bake sale at work today was a huge success and people once again showed their amazing generosity. A big thanks to all our friends who made this happen and have been so supportive for us and our little Evy throughout. I know that Jill and I will have a whole new outlook on how much we can help those around us when all of this is over, and what can be accomplished when everyone chips in. We were really reminded of this when we were at the services for baby Declan and witnessed the amazing outpouring of love and support for the little guy, even from people who had never even met him. If all that energy is put together, there is no reason why we can't have a day in which no little kids have to go through this again.
So thanks to everyone for all their work on making the bake sale today happen!