the well laid and ignored plan

there is a plan. there's been a plan for a couple weeks but i tucked it away in the corner of my mind, happier to focus on coming upstairs, going outside, and having what feels like the most normal parenting experience so far. i.e. caring for and being with our baby 24/7, abeit in a small hospital room with a lot of medical personnel coming and going as they please.

i'm reluctant to pay much attention to the plan because a) things never go according to... and b) the plan means Ford has to go back to the ICU, have his chest opened up again and his heart futzed with. i know the futzing is needed for him to get better and get out of this place, but it's hard to think of him looking like he did 3 months ago, when he looks so beautiful and life-like now.

the plan is what was hypothesized a few weeks/blog posts ago - to keep Ford in the hospital until his next surgery (the Glen procedure that attaches the superior vena cava to the pulmonary artery) and to do that next surgery as soon as possible. in the meantime, to have as few interventions as possible, focusing on him growing and gaining weight. Ford is having a tough time putting on the pounds, despite calorie boosted "feed". in 3 weeks he gained 10 grams. also known as practically nothing. thankfully, the most competent dietitian came back from holiday and increased his daily intake as well as made a plan to increase the calories/ml higher. as a result, he finally broke the 5 kg mark a few days ago! hopefully the trend will continue and we'll have a fat cat on our hands in no time, plumped and primed for the O.R.

the Glen is generally done around 6 months of age, with Dr. Rebeyka in Edmonton doing them more around 8 months, and the earliest possible age being 4 months. Ford will be 4 months in 2 weeks. 4 months is the soonest because it is around that time that the pressures in a baby's lungs normalize. at birth, after being waterlogged in utero, the pressure in one's lungs is very high. this is why hypoplast kids have the Norwood procedure at birth - a quick fix to buy them time until their lungs are ready for the more helpful procedure.

to find out if his lungs are ready, Ford is scheduled for a cardiac cath on september 1st. tuesday all ready! see, by ignoring the plan all this time, all this time has suddenly come to pass. the results of this test are a number. what kind of number we're looking for, i'm not sure. but if that number is "good", then he will have his surgery very soon. if that number is high, we will wait longer, and possibly try some drugs to bring down the pressures.

all of that said, the cardiac cath may now be postponed as it seems Ford has developed another infection. TBD, but he has had a very rough 30 hours. he is finally resting now, but has slept little the past day, instead spending his time crying/screaming painfully and rising up and down to a temperature of 38.4. they have done the round of blood/urine/stool/snot tests and we're waiting to see if they can pin point the cause of his fever and distress. while waiting for a seat in the diagnosed restaurant, he is enjoying a broad antibiotic at the wait and see bar.

which brings me back to a) that things never go according to plan. but we came close...