it is noteworthy that ford has been totally weaned off sedation/pain management. they started by weaning his ativan and once rid of that, slowly decreased his morphine infusion down to nothing as well. depending on the nurse, he sometimes get a dose of ativan to help with his "re-tapes", and depending on his liver function, occasional tylenol to ease his fevers. otherwise - nothing!
nothing! (for pain. his lasix and milrinone infuse on).
perhaps remarkable says it better than noteworthy. everyone marvels at his sedation-free good humour, considering he is intubated through one nostril, and has an NG stuffed down the other. not to mention all the other drawbacks of life in the CCU.
but he smiles more these days than he ever has! if he's happy here, imagine how pleased he'll be when he gets to the other side of this...
so we find moments of happiness too. unfortunately for us, unlike ford, we know what we're missing. so we also have many moments of heartbreak, alone here at night, miles away from him.
here is some recent cuddle time with momma: with pops (and fluid retention): in his millieu: and in other cute baby news, we had a recent visit, and closet inspection, from Rudi:
Nom, Nom, Nom. I would bite your finger if only these damn sedatives would wear off... Alternatively captioned: The Killer Baby of Caerbannog.
Still shot from our pitch to Warner Bros to have Ford replace Christian Bale in the next Batman film.
Ford's great-aunt Shawn, testing the myth that he might be a fictional, animatronic sculpture plucked from Ron Mueck's studio for the purpose of helping us pull off the worst fundraising scam ever. Ah, but yes. He's real.
sorry about the long-time-no-talk, but we've had little to report. the hours and weeks are hard to distinguish from the ones before or after as we repeat our daily routine from our apartment to Ford's bedside.
since we last spoke, he has worked his way up from being allowed an hour a day on his back, to now being able to spend the whole day on his back or side, and then overnight on his tummy. they perform the occasional bronchoscopy to recruit his left lung, though only for the purpose of staving off pneumonias. "we'll keep trying to wean the vent" is a thing of the past as all are resigned to the fact that Ford won't be able to be extubated until he has a new heart.
he continues to be febrile and living under the bair-hugger and bags of ice, and is now, though still in a pod of four beds, under isolation for an "ARO" - anti0biotic resistant organism - his long time resident pseudomonas virus. the virus lives in the vent, so gloves, gowns and masks will be required for all staff as long as he is intubated.
discovered yesterday, he additionally contracted "h flu", or haemophilus influenza, so today and yesterday have been pretty uncomfortable for the little sickie.
his fluid balance and diuretics continue to fluctuate up and down, and the swelling in his face follows... same old same old.
he has, otherwise, been doing as well as he could under the circumstances. mostly stable and relatively happy, he only occasionally gives us a worrying reminder of his fragility. in those moments we all hold our breath and cross our fingers until he finds his steady ground again and the doctors part with "hopefully a heart comes soon".
he smiles a lot these days at almost anyone who tries to elicit a grin, and, now that he can be on his back and see around him, is remembering how to reach and grab for his toys and books. we've both been able to "hold" him a couple times over the past few weeks - where he is placed on our laps in the rocking chair - and though it's not like really getting to pick him up and hold him to our chests in our arms as we desperately crave to, it's better than nothing.
we've been graced with many out of town visitors - the trolls returned from Ottawa for a weekend visit, nana Rhonda and grandpa Leo were just here from Ramsay NJ, aunt Shawn and cousin Amanda from Sarnia, and this week, also from fair Sarnia, Ford's grandma Ruth is coming to town.
Rhonda got the first pictures of Ford's teeth, so we'll try to get those and post them here. they are very cute additions to his little face.
ah it is all perspective - he may look big in the photos but he is only in the 5th percentile for his age group. in november he'd managed to claw his way up to the 20th, with his sights on the 90th where he was born, but in the last couple of months has found his way back among the wee ones. HOWEVER, our wee boy, despite it all, in defiance of this stasis, and overnight, has sprouted two front teeth! teeth! wow! hopefully photographic evidence will follow soon...
For the past week, they've been keeping Ford on his tummy 24 hours a day, to ease the compression of his left lung. Luckily, he likes being on his tummy. For the most part. Because of his persistent fevers, he is usually enveloped in the "Bair Hugger", a big duvet type thing that is filled with and blows cool air on him. It works best at keeping him afebrile, without needing ice or tylenol. He does get turned over each time his "tapes" - the tape keeping endotracheal tube in place - need to be fixed. Today they let him stay on his back for an hour where it's a lot easier for him to play with his toys! Then back on his tummy, and back to sleep.
okay okay okay. i LOVE you readers, i LOVE that this blog is our best connection to the outside world, and i LOVE that you check the blog frequently. AND where would we be without all the love and support you send us? but when we don't write for a week, and you start emailing, texting and calling me asking that we do - i feel pressured. i know you have the kindest intentions, and i love to know that you're thinking of us in between posts, but i'm not gonna lie, nudging me for an update, well, it gets to me. we'll always write again soon, as soon as we can, time-wise, heart and mind-wise...
thus.
almost two weeks into our time at SickKids and we are getting used to how they do things here/we've been beaten into submission (depending on your perspective - ours shifts daily). we're slowly finding a few people we like and trust, though none of them doctors yet.
and for all the trouble of our first week, there was some good news. one is that Ford has been occasionally smiling. before last week, we'd never seen him smile while intubated. here they intubate through the nose instead of the mouth like in Vancouver, and that has freed his lips to more varied expression. he smacks his lips too and is able to (sort of) chew on his soother. he lost his ability to suck when he had the stroke, but he sure loves to try and remember, which is great.
we captured some video of him smiling and though it looks fine on the camera, it is indistinguishably dark on the computer. who has software to brigthen? maybe i could send you the file. RSVP.
other good news is that he doesn't have DiGeorge syndrome, which they were chasing down due to his recurrent infections.
also, results from the transplant assessment bloodwork show that he is still compatible for an ABO mismatch heart. they will test for this monthly. babies can remain compatible for up to 18 months and it means that the donor heart does not have to be of the same blood type as Ford.
the bloodwork was also to test for certain anti-bodies. since Ford has foreign tissue in him (the bit of heart tissue from an 18 year old who died in a car crash that was grafted onto his aorta during the Norwood) and has had multiple blood transfusions, he was at higher risk for having developed said anti-bodies. positive or high results wouldn't exclude from getting a heart, it would just mean more aggressive immuno-suppressants post-transplant. but with the exception of one positive result, which was low enough to be almost negligible, Ford's results were negative. which is good news too.
we're glad for the good news, and we're relieved and encouraged by the smiling, but we're also struggling. it is so hard when he is intubated. we can't pick him up or hold him and because of the pain management sedation, he spends most of his day asleep. we sit by his bed and read and wait for the few minutes he will be awake so we can smile and wave and coo before he slips back into sleep. the team here is not optimistic that he could be extubated and the thought of waiting at his bedside like this for months leaves us daunted and dodging depression. that said, they are trying to slowly wean the vent, as no breathing tube is much healthier for Ford than having it, if he can manage to breathe on his own of course.
in other news, we've been in the Ronald McDonald House for a week now gratefully not in any kind of theme room. and today, we are moving into an apartment run by the RMH. they have four in the city for their more long term families (ug) and one just became available. it will now be a subway ride instead of a short walk to the hospital, but we are looking forward to our own space.
lastly, i'd been saving this for Valentines day but then missed the occasion - Ford bled a heartshape onto his GJ dressing in january just to send you all some love in return for all the love sent: and so and so, &c, &c.
with pops (and fluid retention):
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