long time no sesame

yes sorry about our absence. things have been busy - with Ford of course, but we also had the pleasant distractions of visits from Micheal-Owen, and Corrine and Larry.

so what's new? well -

Ford came upstairs on tuesday september 29th, with low-flow nasal prongs in place at 1 litre, still on continuous NJ feeds and with all lines, except his PICC, out. his chest tubes came out before we left ICU as well as it turns out that whole chylo-thorax thing was just a scare. what was seen in the tubes was not in fact chyle, but "transient stuff". yup, "stuff" is what they called it with a shrug of their shoulders. albeit vague, this was great news as he was very quickly put back on to his regular feeds (recipe: 100 mls of breast milk with 4 grams of SLF powder, to 100 mls sim27 formula and 4 ml/eq of sodium per 100 ml fluid, plus 1 ml of MCT oil q/6) and has resumed gaining weight steadily.

Ford's first few night upstairs were very unsettled. actually so were his days. he was incredibly touchy and cried and moaned every waking moment. thursday he spiked a fever of 39. blood and urine samples were drawn and he was started on antibiotics. fortunately, the results were benign and he didn't have to continue that treatment. unfortunately, in that time, his PICC line came out. hopefully, there will be no more need for any intravenous treatments as his veins are closed for business at present. he would have to get a new PICC if the need arose. fingers crossed it doesn't.

come sunday, Ford showed signs of some solid recovery - he (practically) slept through the night and even smiled again! since then, the smiles have been increasing on a daily basis which is very encouraging, and he's okay to be picked up and moved around a bit. thank goodness. seeing him smile, a part of me that had been holding it's breath since the glenn, exhaled.

yesterday he had a routine echo. they found a clot in his left ventricle. there is very little chance this clot could get out of the ventricle as there's no mitral valve (if it could, they would be very concerned) but they want it "resolved" nonetheless. this means resuming the enoxaparin.

the enoxaparin is an anti-coagulant. he had been on it during the time from his norwood to his glenn. being on it sucks. it's a shot in his leg twice a day and by the time of his glenn it became a challenge to find spots to inject it - his thighs were so hard and bruised. we were so glad to see it gone (he had been on it to treat clots that had formed in his legs, as well as to ensure proper blood flow through his sano shunt) as the twice-daily event was always a little heartbreaking. or a lot, depending on how Ford reacted - something from a short cry and whimper to a total melt down.

it was disheartening news to think this small torture is back in our lives - it's no fun sticking needles into your baby and we always made the nurses do it. but now he will have to be on it for a couple months, so it's likely he'll go home on it and we'll get to be the one terrorizing him. great.

and when will he go home you ask? we don't know. we're officially working towards it, not just biding time until the next procedure, but how long it will take to get there is uncertain. Jan, one of the cardiology nurses, guessed we'd be home by halloween. Dr. Hosking, a cardiologist, assured us we'd be home by christmas.

what needs to happen? he needs to be off the oxygen. as mentioned above, he's down to a small amount, so this seems a reasonable task. the big issue is his feeds. he needs to be on NG feeds and preferably bolus NG feeds. this is the tricky part.

the details of the challenges around Ford's NG feeds are lengthy, so for now i'll jump to the most recent development and that is that, after stumping cardiology, the pediatricians, the dietitian and the occupational therapist, we finally were referred to "GI", the gastro specialists. the dr from GI, let's call him Joe, and i had a long talk about Ford's history today and we're all waiting for Joe's thoughts and suggestions.

meanwhile, it's Emmett's third birthday today. the very wonderful, caring and kind nurse Baljit started making arrangements a few days ago so that Nick and I could have a break away from the hospital together this morning. Baljit's brother died 12 years ago and her understanding of such an anniversary didn't need elaboration. so while Ford got to hang out with one of the ward's volunteers, Nick and I took some time to honour Emmett.

this whole week has been hard on that account. it's impossible not to remember the events leading up to his birth, and the nightmare that it became. it was thanksgiving sunday when he was born, and that holiday hasn't felt the same since. this is always a difficult time of year.

indeed when Emmett died in this hospital, i hoped to never come back to this building. now we've been living here for 3 months! life, eh?