what a difference a week makes

a lot can happen in a week. or maybe when little happens, it can mean a lot. or maybe somewhere in between.

they ended up going ahead with the cardiac cath on september 1st. Ford's fever had been down for 24 hours and Dr. Human preferred, and we appreciated, to not dilly-dally.

while Ford was getting the procedure, we went to Second Cup. we enjoyed the time of a coffee together, with a view different than the hospital room and comfier chairs. my cell rang and i assumed it was the call that Ford was in the recovery room, but it was Dr. Human on speaker phone from "the lab". while checking the pressures of the pulmonary artery, they noticed the aortic arch had narrowed again (Ford had the aorta stretched 6ish weeks ago). in the noise of the coffee drinking crowd i gave verbal consent for them to dilate the aorta a second time.

Ford spent that night in the ICU, and returned upstairs on wednesday.

what followed was a lot of discussion and debate about the state of Ford's aorta, and an echo to aid the decision making. i'm going to skip all the possible scenarios discussed, from new/more drugs to additional surgery on the aorta before the Glen could be performed, as it was left that we would wait to see how the weekend went. if Ford did well, that would rule out most of the options.

here we are sunday evening, and Ford has had a great weekend! in fact, the past few days have been a few of the best in Ford's life, save for his time in utero i would suspect. whether it was getting over whatever had been causing the fevers or stretching his aorta, who knows, but he's been in wonderful spirits. it turns out, if he's not being tormented with tests and pokes etc, he's a very mellow, patient and sweet baby! yippee! he's been spending the past few days smiling and playing and being all around ADORABLE.

here's a video of him and Nick making faces to prove it:



as a result of him being such a happy camper, we've increased the amount of "feed" he's getting orally. he had been, for the past few weeks, getting 15ml by bottle every 4 hours. he otherwise gets 696ml through his nj tube, so the oral feeds have been more for stimulation than nutrition; keeping him interested in and capable of feeding orally. he LOVES his bottle feeds and is always upset when the tablespoon amount is gone. today we went up to 25ml per feed and he handled it beautifully - no gagging, no spitting up. all last week he'd been gagging and vomiting quite frequently - HLHS babies have dreadful reflux. but they started a new drug on friday to relieve such distress and it's done wonders. no spontaneous dry heaving! what a delight!

beyond finding the narrowing of his arch, and in result of the intent of the cath, his pressures proved to be perfectly normal for his age - ie ready for his Glen procedure.

the cardiac team here will meet this week to discuss this. Dr. Human will then also call "Edmonton" for their opinion on the matter, as they work with more HLHS babies than Vancouver. then, Dr. Human et all will come up with a date for the Glen - "mid-september" was mentioned. which is actually quite soon isn't it? relatively.

in reply Dean(o), we are staying in Vancouver for the Glen. we had the choice of returning to Edmonton, but at this point, we'd rather not up and leave again, especially as Nick returns to UBC this week both taking and teaching classes. part of me is disappointed to not return to Edmonton and see all the people there who did so much for Ford in his first 7 weeks, but the surgeons here perform the Glen procedure often (it's a repair for many different heart defects) and we're pretty used to Human, Sanatani and the rest of them by now. (p.s. Ford is also disappointed to not see Ady again so soon :)

there. so now we wait for the docs to discuss and we enjoy Ford's new bright side.