Believe it or not, just one day after some of the previous post’s photos were taken, Noa came down with a fever of 102 and was sent her home from school – just as Ben and I were preparing to drive back to NYC for a very full week of work for us both. By Wednesday evening it seemed like the fever had broken and she even went to the playground with Daddy (who – gem that he is – was covering so I could run to NYC for the day to watch some auditions.) But overnight her fever shot up again… and there was a cough. And there was lethargy. And there was not eating.
The next morning found us back at Perkins… because they have a pediatrician that comes in a few times a week (how handy and fabulous is that?). When Noa tested negative for Strep, the doctor advised us to take her to Boston Children’s Hospital, where an x-ray quickly diagnosed her with Pneumonia in her bottom right lung, with a significant enough fluid built up in a hard to reach area, that they wanted to admit her and make sure antibiotics would successfully treat it.
And that is how it began: our 5-day Pneumonia Vacation!
As horrible and scary as it is to be in the hospital with a sick child, and as unnerving as it is to have people suit up like they are fighting Ebola every time they enter the room, I have to say that watching Noa navigate the entire experience was amazing, and watching everyone else try to navigate Noa… well, that was illuminating as well!
First a shout out to Dan who held Noa still while they put an IV in her arm (which took THREE tries because the first two veins didn’t work). He wrapped Noa like a Papoose, with just one arm sticking out and then just laid across the top of her so she couldn’t move – which might have been terrifying except that his firmness was equally matched by his gentleness. I suggested counting with Noa – because Noa will let you do almost anything for 10 seconds, and now that she can count to 30 you can sometimes convince to give you all of that. Of course, all of this took much longer than 30 seconds, so Dan just kept her counting – starting over again at 1 over and over again for what must have been 10 minutes and stroking her arm so it wouldn’t get tense (we once couldn’t get any blood from her just because she was so tense that her blood wouldn’t flow!)
Once the IV was in, they put a splint with Velcro over it to keep is stable and safe from any urge she might have to pull it out. Noa, to her great credit, quickly figured out that it wasn’t going anywhere and left it alone. In addition to giving her her first IV dose of antibiotics while still in the E.R., they also hydrated her and I think that may have been what really won her over the idea that the hospital was a good place and it was going to make her feel better.
While we were waiting for the IV to finish (and for Daddy to go home and get a chance of cloths for Mommy), I sat with Noa and explained to her that Mommy and Noa were going to stay at the hospital overnight so they could help her feel better and they had a bed for us to sleep in. Noa has always hated sitting on hospital beds or examine tables or anything piece of furniture that makes her think “doctor,” so I was a bit nervous about how she’d take getting in a hospital bed. But again, she surprised me, and climbed willing into bed. She ate the first real meal she’d had in a few days and quickly fell off to sleep.
As some of you may know, they like to take your vitals at the hospital. A lot. Like every 4 hours a lot. Day and night. Blood pressure, temperature and – since she had pneumonia – listening to the chest.
As some of you may also know… Noa doesn’t like being touched like that. Not by people she knows and certainly not by an ever-changing parade of people she doesn’t know and who really don’t know how to talk to her.
But again, in her usual Noa style, she quickly learned the routine and was soon obediently offering her arm when I told her it was “time for arm” and starting to count to 30 as soon as the cuff was wrapped around her arm. She liked to have her temperature next and would say “ear turn turn” (translation: it’s the ear’s turn) as if giving the nurse instructions – though often they didn’t understand what she was saying.
It’s interesting to see how people respond to the way in which Noa tries to communicate with them. I would tell anyone who had to deal with her that it’s best to tell her what you’re going to do, and that she’ll give you 10 to 30 seconds to do it so it’s good to have whatever you’re doing to do prepared (i.e., don’t say, I’m going to take your temperature in your ear and then reach for the thermometer, have the the thing ready to put in her ear). There was only one nursing assistant who totally ignored me and insisted she already knew how to deal with children like Noa because she’d been doing this a long time – she got hit a few times. Serves her right.
What was really interesting to though was how people expressed to Noa what was going to happen, so she’d know what to expect. For example, my language with Noa would go something like this: “Time for your arm. Squeezes for 30 seconds. Yes, now it’s ear’s turn. On your chest. On your back.” From Noa’s point of view, that’s what was happening to her.
But what I heard most often from the doctors and nurses was: “I’m going to take your temperature now.” Which is what the doctor is doing, but doesn’t really tell Noa what is going to happen to her since they might be taking her temperature on her forehead or in her ear (I wouldn’t suggest trying mouth or armpit with her). Or “I’m going to listen to your heart now.” Again, this is what the doctor is doing, which – nothing personal – Noa could care less about. She wants to know what is about to happen to her. Where will I be touched? For how long? What kind of touch?
Noa even managed to sit still when they had to hook her up to the IV – which any of you who have been hooked and hooked from tubes repeatedly know – it’s just not comfortable. What was funny, and only I could understand, was that as soon as someone touched that little splint over her IV she start prattling “stand up stand up potty potty lunch stand up finished,” as if we might stop if she could convince us she was busy.
Although I wasn’t a big fan of the food situation at the hospital (won’t into that), but other than that, as hospitals go, it was a perfectly fine place to be. The room had an armchair that pulled out into a bed that was actually fairly comfortable, we had a big flat screen TV (with a small speaker so you could listen to it very quietly even with both TV’s going in a double room), the staff was very helpful – and actually fairly prompt when you pressed the nurse call button. Ben, thankfully, gave me some time off everyday to just walk out of the building and get a coffee or go on a walk. We decided that I would do all the night shifts – I’m just better as sleeping in odd places and waking up and going back to sleep again. Besides, better to have at least one of us well rested!
Okay, so that’s it for Part 1 – sort of an overview. In Part 2, I’ll get into how we ended up being there for so long, and how we had three totally different x-ray experiences, and whether or not that spray shampoo stuff really works… oh the mystery!