the post-op tube countdown has begun. Ford came back from surgery with 2 peripheral ivs (one hand, one foot) an ART line, a central femoral line, a chest drainage tube, intubated and with his PICC line, NG and NJ tubes.
one of the ivs has been taken out and today the chest tube will be removed. it's always a good thing when a tube comes out!
the chest tube was draining chyle, but whether this is old chyle that's been freed, or a new chylothorax, is unknown. he is, in the meantime, being fed the fat-free monogen. i'm not sure for how long he'll be kept on that diet.
drugs are being tweaked and changed. his sedation levels have been the most challenging - on sunday morning they gave him a dose of chloryl hydrate (a drug he's had many times that works very well for him) and his blood pressure tanked. they had to push epinephrine (adrenelin) for him to recover, and he is still on a small, and weaning dose of epi. otherwise, as of yesterday, they seem to have found the right balance of morphine and midaz to keep him comfortable but not completely snowed.
the plan is to still keep him intubated "for awhile" and Dr. Campbell said yes when i asked today "for like a week?". they want to make sure that left lung stays expanded and they're keeping the pressure on the vent high -a PEEP of 10 - to do so. as long as he's intubated, he'll be somewhat sedated to keep him comfy.
he looks like he's wearing football gear under his skin as he is almost one litre fluid positive. when he "lost" his blood pressure, they had to give him a lot of fluid, and he's now on a lasix infusion to help get the fluid off. regardless of keeping the positive pressure in his lungs, we can't think about weaning the vent settings until he gets that fluid out - it's too much for his heart to manage. and in the meantime, we can't tell clearly how his heart is handling the increased volume from the shunt until his fluid balance comes down either.
details details. basically not a lot has changed. fluid's got to come off, then we wean the vent. they're "watching" his heart and discussing their mixed opinions on it's function. we wait. i have no idea how long we'll be here.
i'm typing but i feel mostly asleep. this past week/most recent event has really exhausted us. we'd not had a chance to regain our strength from the last major event, so this feels like it's knocked us down even harder.
at least i feel knocked down even harder, somehow lower.
wait wait waiting.
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Last night on the local TV here- they had a 4 yr. boy who has been picked to turn on the Christmas lights for D.T. Tyler. He went through the same thing as Ford. The parents talked about how hard it was for all of them going through the various stages of the Glen.
ReplyDeleteThey too had chosen that over a transplant.
Like Ford this 4 yr. old boy was so handsome and a winning smile. Funny - his Dad kept trying to ease his "fav. blanket" away and he kept pulling it back. I was thinking - for all he has been through - let him have the blanket!!!!
Don't loose the positives. :)
It must be SO hard - is there a group there w/whom you can talk to? Parents who have been through what you are going through?
....just a suggestion. :)
P.