better, worse, indifferent? can anyone tell anything from this?
Surgery went well. Reuben is wheeled off to outpatient surgery kicking his legs with excitement, couldn't wait for it to begin. He returns an hour later with blood coming out of his ears, sorrowful pink eyes and such a sad look that it instantly brings me back to the PICU days, with a face so often worn then when he was high on sedatives. It makes me well up to see him like that.
We're both extremely tired after an early start and another BARD feeding tube leak, a soaked bed. Jason has managed to navigate a number of Drs to ensure that the dreaded BARD is taken out during this surgery to spare him the pain. So the Mick-key is back in and with that those previous problems of deflation but at least his bed won't get soaked every night. Breaking and deflating every week, emergency changes on Venice Pier I guess we'll just have to deal with. We'd ordered another button, an Entristar but it fails to arrive in time for surgical insertion.
Dr K gives a debrief on the L&B, a laryngeal and bronchial scope to check the progress of healing from his prolonged intubation and which of course Dr K has always been resistant to undertake before October. Perhaps this is why we are shot down in flames by Dr K. We manage to get a photo of his throat from the notes, but Dr K is pretty brusque, preempting our questions, "how long will it take for the "large cuneiform cartilage bilaterally" to heal?", saying, "and no I won't give you a timeframe for it to heal". Jason probes "so is the news good, bad or indifferent?", the reply "indifferent". Indifference indeed. We're too disempowered with tiredness to challenge him. This cartilage it appears after later investigation when we're home is the same laryngeal malatia. Yet we have no idea of the reflux is being managed with Prevacid sufficiently to have reduced the angry look of his throat in previous scopes. We call Jiffy and she says we'll get a debrief on Wednesday thankfully.
Also noted is left otitis media, an ear infection, which we're now treating. Reuben often fails to let us know he's in discomfort over anything unless it really is pretty painful.
We're both extremely tired after an early start and another BARD feeding tube leak, a soaked bed. Jason has managed to navigate a number of Drs to ensure that the dreaded BARD is taken out during this surgery to spare him the pain. So the Mick-key is back in and with that those previous problems of deflation but at least his bed won't get soaked every night. Breaking and deflating every week, emergency changes on Venice Pier I guess we'll just have to deal with. We'd ordered another button, an Entristar but it fails to arrive in time for surgical insertion.
Dr K gives a debrief on the L&B, a laryngeal and bronchial scope to check the progress of healing from his prolonged intubation and which of course Dr K has always been resistant to undertake before October. Perhaps this is why we are shot down in flames by Dr K. We manage to get a photo of his throat from the notes, but Dr K is pretty brusque, preempting our questions, "how long will it take for the "large cuneiform cartilage bilaterally" to heal?", saying, "and no I won't give you a timeframe for it to heal". Jason probes "so is the news good, bad or indifferent?", the reply "indifferent". Indifference indeed. We're too disempowered with tiredness to challenge him. This cartilage it appears after later investigation when we're home is the same laryngeal malatia. Yet we have no idea of the reflux is being managed with Prevacid sufficiently to have reduced the angry look of his throat in previous scopes. We call Jiffy and she says we'll get a debrief on Wednesday thankfully.
Also noted is left otitis media, an ear infection, which we're now treating. Reuben often fails to let us know he's in discomfort over anything unless it really is pretty painful.
We arrive home and Christine has prepared everything for us, she's even made the beds! The irony is that it's Jason and I who go to sleep whilst Reuben sits watching Dumbo with Christine, refreshed after a nap in the car. I wonder if his hearing has improved now on the moderate (50db) loss side with the tubes or whether things sounds less foggy to him, like his ears have just popped after a flight. The decision was made not to insert a tube on his right profound ear. Dr K's only positive light was to say that when Reuben flies with us for a planned trip to the UK in May/June, he'll be the most comfortable person on the plane with his ear tube.
5 comments:
I will venture to say this - hurrah for no angry red areas! To this day on an LBE Keith has angry red areas - from aspiration, from reflux, from irriation.....red red areas in all the places there ought not be....and pools of fluid where there should not be.... so hurrah hurrah for Reuben!!!! and Hurrah Hurrah for mum and dad! post op anywhere for any reason becomes tender and sacred ground for wounds and healing.....and CONGRATULATIONS to the cheeky fellow for his one hand holding standing! yay~! love, the Persico family!
great it alw went well fro u
Fantastic that the surgery went well.Good to have piece of mind that you have the new tube in place and no more bedwetting.
Hope you're getting some rest.
Lots of love
Geraldine
I am glad the surgery went well and I am glad you are home and were able to relax.
Hugs,
Crystal and Eva
Catherine I know the frustration I am still awaiting a copy of our broncoscopy which was carried out in 2006 despite keep asking I dont seem to get very far!! All I was told was the word 'fine' what does that mean...lol
Her reflux is as bad and we need answers before oipting for surgery again!
good luck with the debrief.
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