Bonus convo (and now we are…4.5)
Noah [re: snag in his plan for playing]: Bummer!
Me: Hey, we said bummer was just fine as a hospital word. But we’re not in the hospital any more. Maybe there’s a different word? Disappointing?
Noah: This SUCKS!
…
Isolationist tendencies
Some people, when life gets difficult, call up their friends and/or family and bask in the kindness and love of their inner circles.
And then you have me (and Carl). I basically unplug from anything I can — voice mail piles up; email stays bold — and only come out of my cave to comment on completely irrelevant things, like what is it with Let’s All Hate Toronto.
Anyways, we spent this past weekend back at Sick Kids. Noah had been recovering fine overall, if you count nightly nightmares, falling out of his pants (he has lost 11 llbs! over 25% of his body weight!) and a tendency to go white with fatigue by 4 pm recovering (and we do). But then Thursday night he seemed to be getting very restless and warm in the night and then Friday morning he threw up and spiked a good high fever so down we went. I admit I fully expected to be sent home with a laugh about the stomach flu.
Instead everyone agreed he looked awful and that his stomach was distended. After an IV placement, an ultrasound, needle, and several blood draws, we were about to be free. Unfortunately one of the blood cultures also came back positive for staph (staph! in my baby’s BLOOD!) so we also spent Saturday there waiting to see what else would grow, replacing the IV, and getting antibiotics, and Sunday pretty much the same. In the end, the staph was a contaminant. It is fine.
Before I go on to the real wounded party in all this, Noah, I will just peep that I am bone-tired exhausted. I did go to work yesterday and was able to work at about half my usual speed; today I’m working from home and taking a turn with Noah. We are not ready to release him into the wild yet, as the consensus is he needs rest.
I am also really put out and angry. Being at Sick Kids in the present you do, in fact, realize how lucky you are. You pass kids with real problems all the time. Noah is going to be fine. We have walked out each time. The staff there is wonderful.
But being at Sick Kids also harkens to losing Emily. It just re-engages that wound at full force, simultaneous to worrying about staph in the blood!. So it becomes a roulette emotional game. Scared for Noah! Sad that Noah is having to get an IV! Relieved the child life specialist comes in to help explain/distract! Oh wait Emily had a little sticker like that on her central line!
Anyways, tired.
~~
Noah…wow. In the first experience with the appendectomy I learned so much about my child. He is weirdly stoic about any internal pain; right up to when they decided to give him morphine he insisted that he was only having a “little” tummy ache, despite the sky-high blood pressure etc. He was helpful and polite and extremely brave, particularly if anyone would explain anything to him (to the x-ray tech at Centenary who took the time to explain x-rays and show Noah how the “robot” machine moved all around the room, blessings).
However my child hasn’t had any procedures other than vaccines and exams that he remembers (he did get his heel stitched up at about 1 year of age) so the first “real” needle he got was an IV placement into his hand…that failed the first time, digging around in there, and so his second one was into the vein on the side of his wrist where it all hurt very much.
It broke his trust and it was heartbreaking to see the change; he had always regarded nurses and doctors as superheroes and now, I am afraid, he watches them like they are the alien in Alien, dripping with acid and containing extendible body parts that might at any moment stick him with a needle, insert a suppository dose of Tylenol, or put him to sleep whereupon he will wake up with a tube down his throat gagging him and a tube in his penis, the most sacred of private areas. Or hold him down during a seizure and poke a needle into his finger to get a blood sugar count.
Which, you know, all happened.
Lynn would say with a calm accepting pride that Noah has steel and that it came out in the hospital and I guess I would have to agree although I would say it with regret and sadness. When the chips were truly down and he was so miserable that he would not speak (unfun around a NG tube anyway) or make eye contact, hovering between despair and anger, he chose anger.
Mostly at the parent who delivered him into the nightmare - his mum. And was he ever furious. When daddy came into the room he would make eye contact and ask to be read to, but I was persona non grata.
However this did give him something to focus on and maybe even draw a little strength from. I see what Lynn means and why it makes her glad — although I don’t really want trauma in my son’s life I do sometimes think that a little anger can go a long way in having the energy to deal with sad trauma. Lynn, of course, doesn’t waste any time getting all fussed about the “why Noah?” question; for her the amazement has been that the trauma has not arrived sooner.
Noah also had his own TV even in the ICU and he zoned out into that thing like I’ve never seen before. It was quite something.
Anyways, Noah did eventually start to treat with me again. First he would hold my hand and then he’d look at me, and then the real turning point came when my mother (of all people) got herself a Burger King kids’ meal and it came with a toy from the Incredible Hulk movie. So I told Noah about this guy that turns green and stomps around when he’s angry and we invented a little game where Hansel and Gretel have a house (the next toy someone went to get from BK) and beg and plead the Hulk dude to leave it alone, but he smashes it down and then Holmes on Homes comes to fix it.
(Yes Jung would have a field day.)
Sick Kids has a lot of wisdom in its care and gives kids a lot of space for their feelings, which all helped the emotional side. Noah got very into going to the playroom (each unit has one) and it was hugely well stocked with clean toys and games (with all the pieces!) and a huge art cupboard. Volunteers came around and offered to play with Noah, both for his benefit and to give us a break (we said no but appreciated it). And every nurse and doctor took the time to talk to Noah and explain things.
And Noah did respond, eventually, as if perhaps these people might be of his species. Maybe. But at any moment an alien might burst forth from their bellies.
And he came home and had nightmares and was getting comfortable when…we had to go back, and get more pokes and IVs and everything else. He’s now gotten the opposite of stoic - freaky? - about anything to do with his skin. Even putting on numbing cream (which they use at Sick Kids) was a production.
The good thing about having to go back, if there is a good thing, was that he did visibly relax once he wasn’t getting tubes. But it was still rather awful.
This time, we left Sick Kids with a live child
But - it was a little too close for comfort.
Tuesday night: Stomach flu
Wednesday night: First ER visit, sent home with confirmation of stomach flu.
Early Thursday morning: Second ER visit (local hospital); Get This Child Some Tests STAT.
Thursday morning, 9 am: Likely appendicitis, prepare to transfer to Sick Kids. IV insertion.
Thursday, 11 am: Noah has a seizure
Thursday, 3 pm: Noah is transferred to Sick Kids by ambulance with a nurse (and Carl)
Thursday, 3:45 pm: Noah has hives all over his body as a reaction to something
Thursday, 7 pm: Decision is made to just operate
Thursday, 8 pm: Noah enters ER
Thursday, 10 pm: Wow that was a really burst appendix and a belly full of infection, but Noah is ok - has a tube in his nose to his belly, a catheter, and morphine, but is ok
Friday, 2 am: Big fever, pack in ice
Saturday - ICU; Noah throws up a lot until they figure out his NG tube is kinked way up high where the x-ray they’d done to look couldn’t see
Saturday night - Noah discovers Treehouse
Sunday - transferred to room, eventually catheter is out, NG tube comes out; Noah discovers COOL PLAYROOM on ward
Tuesday- home we are, 6 pm.
Exhausted. Weird to be back on the sleep-at-Sick-Kids schedule. Carl and I were pretty shut down until it was clear Noah was leaving, and even so, I don’t think we’ve processed the fear. The seizure was AWFUL AWFUL AWFUL and from there until they got the NG tube sorted out I don’t think we could think about much, either one of us but definitely me. Constant obs (icu) is soooooooo like a NICU.
Have managed to stay employed thus far although still have a ways to go.
It was traumatic and scary for Noah. I was very sad to see his faith in the world get soundly shaken up. There is a whole post in that. But one of us was there the whole time, no exceptions. Hopefully we can help him through the feelings and hopefully we started.
Noah is really doing well physically and even better emotionally; I have some pictures of the recovery. Sick Kids is amazing amazing. More later. We’re ok.