Saturday, June 16, 2007

Complete medical picture

Friday, the discharge conference with the attending physician Dr Camarini, Reuben's primary nurse Anne, the cardiologist, the resident Dr, the social worker Glenda and the discharge care coordinator Peggy. I think the conference highlighted further the multi-factorial medical conditions which Reuben has, so incredibly complex it's hard to envisage it all at once. Best keep breaking it down and dealing with each in turn, such is the blessing of Charge hey.

In summary, the following:
- Drs very happy with Reuben's recovery post gtube and fondo operations
- potential discharge Thursday/Friday next week! hurrah, the magic word reappears!
- cardio diagnosis: Tetrology of Follot (TET) defined by VSD (ventricular septal defect/hole) and PS (pulminary stenosis/narrowing). Will require bypass surgery within 5/6 months, giving enough time for him to grow so he's better able to deal with the surgery. We learnt about the TET within hours of Reuben's birth but high on c-section anaesthesia and emotion, I was a little less able to take it in back then. Currently the VSD and PS are mutually beneficial, the hole alleviating the pressure caused by the narrowing. But as he grows, the necessity for surgery will increase. Timing will be a fine balancing act.
- Occupational therapy to assess swallowing issues to be regularly followed up at the Regional Centre. There's another fine balance between teaching him to swallow with the resultant aspiration risks and leaving it too late so that he develops oral aversions to food and liquid in his mouth.
- Physical therapy (supplemented by our regular massaging) for abnormal muscle tone to be followed up at RC
- Speech therapy at the RC in time
- Olfactory (smell), auditory (hearing) nerves and facial nerves missing
- Equipment to be taken home: O2, feeding pump for continuous feeds into his Gtube, potentially a heart monitor of which insurance covers a measly $2k pa, the rest of the funding we'll have to apply for under Medi-Cal or SSI state aid registering Reube as disabled
- Later met pulminary Drs to discuss the sleep/nap study on 16th June to assess oral secretions, CO2 emissions etc and required O2 to take home
- Time will tell re type of schooling

Training to date includes CPR videos (we actually did a Red Cross course just before his birth anyway so this was a refresher, this time paying a little more attention!), at home oxygen use, at home feeding pump and Gtube use.

And that's about it, a cinch hey! We must draw great comfort though that the Drs are happy with his progress and that other magic word beginning with H can seem like more of a reality to us rather than a shady apparition that keeps appearing and disappearing out of view. Very pleased with the conference though, the way it was executed and the quality of care.


Yuka said...

Lovely Catherine - you are every bit the seasoned CHARGE parent! Well done! and soooo exciting that handsome Reuben is causing the doctors to flirt with the notion of sending him home! I have learnt to ask God to open my eyes and show me the blessing that has already been given me in every moment. It seems you and your famiy are already graced with this gift. So exciting how pleased the physicians are with Reuben ! <3 y

Ericap said...


And yet through all that complex medical care, the simplicity is that every morning, when Reuben is home, all he will know is that he sees your face and J's fact first, how complicated can that be! The Doctors must have tremendous faith in your and J's ability to nurse him, to think that you had even thought about 'nursing' as a profession some 6 months ago - your vocation.

Yuka said...

what a beautiful picture of Reuben's hand in Jason's.... simply breathtaking - so much love in two of God's hands.....

skeybunny said...


Please feel free to call me RE: discharge issues. (509) 728 4023. We (with the help of Evan's team) get 120 hours of home nursing to help with the transition home. I would be more than happy to pass along what information I have.

Sarah (mom to Evan, 23 months--and sometimes it seems like just yesterday he came home!)