Riley is extabated and going okay. They've taken him off the dopamine and lipids and are no longer doing the albumin replacement. He is getting some FFP. His BUN and creatinine numbers have come down slightly and his blood gases look good. His blood pressure is much higher today and more stable.
I relieved Suzanne at 5am and she went to the apartment to sleep. When my Dad and Barbara got here at 9am I headed downstairs to get something to eat. When I came back to the room at 10:15 the cardiologist and intensivist were in Riley's room. After chatting for a few minutes I began to get the impression that they considered this the formal family meeting. Unfortunately, nobody bothered to tell the family and Suzanne was not there. Neither was the surgeon. We told the social worker that his presence was critical. Both doctors had positive outlooks and felt Riley's condition had improved, but we didn't have the substantive dialog I'd been hoping for, primarily because we didn't have a quorum and I hadn't fully prepared.
The primary question still is - what went wrong and why did the Fontan fail? The intensivist thinks it was arrhythmia from the trauma of the procedure and that it was a temporary setback. The cardiologist disagrees and says we don't know what went wrong and we may never know. The surgeon didn't express an opinion because, again, he wasn't there. He's the only one with the first hand experience from the OR. An hour after I left I checked my voicemail and there was a message from the social worker - "it's 10 am and the cardiologist and intensivist are in your room so it would be great if you and Suzanne could come up. Oh and the surgeon is too busy today and tomorrow so I figured you could talk to him separately." Not exactly what we'd requested. I was thinking scheduled meeting, people actually showing up, conference room, that type of thing. And nobody from the UC cardiology team who performed the cath was present (the cardiologist who came was Riley's regular Kaiser cardiologist).
Suzanne just arrived and we're going to spend some time with Riley and then we'll go talk to the social worker. Clearly this doesn't count as our family meeting. Oh, and I missed rounds this morning because they closed the door to Riley's room while they chatted outside lest I overhear something I don't understand about another patient I don't know. They didn't bother to reopen the door when they started talking about Riley so I don't know what was discussed.
Thursday, March 30, 2006
Dysfunctional family meeting
Posted by Ken Norton at 3/30/2006 11:54:00 AM
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9 comments:
Sigh... I was hoping the delay in today's first post was because you were actually having the real deal.
Hang in there, guys. We're all rooting for you.
Oy--bureaucracy in all its ugliness. Don't settle (I'm sure you won't). Ken, your glimmer of humor at this time is an testament to strength and an inspiration. Most importantly, glad to hear Riley's numbers are improving--we will continue sending healing thoughts and hoping for more upward progress!
(and if you need any stuff or people fetched, please feel free to call again. 309-9161)
Cyd (& Jason & Audrey)
Hi. Seems like Riley is showing many signs of improvement! That is great! Hopefully, despite the dysfunction of staff, you will get the family meeting as it was intended! Don't hospital staff realize how important it is for patients and their families (especially when dealing with children) to have all the information and solid information at that? It is great to hear all the positive changes and that he is extabated. He can actually communicate with you now. You and he continue to be in my prayers, as well as the prayers of numerous Baltimorians!
Love you, Karen
Inexcusable
A family meeting is just that. All parties agree on a time and a date and all parties show up (barring an acute emergency). Know that this is the standard in an major medical center and know that you deserve this especially given Riley's critical status. Get the nurse and the social worker on yourside. They (in my experience) are your best advocates for getting the "Big Guys" to meet so everyone is on the same page. Strongly express your concern to the nurse and the social worker about what the "PLAN" is and you still want to have a formal meeting. They too are stuck in the middle and will want the same information you do.
The silver lining...and most important thing is Riley is inching in the right direction.
Hope this helps.
-Dave
Hi Suzanne and Ken,
I found your blog one day, which I like, and I saw that Riley was scheduled for surgery again. So we have been keeping track of Riley's progress, and we just wanted to say our hearts are breaking for you to have to see your son suffer. We just had our second child, a baby boy in Dec., Graham, and would be devastated to see anyone have to suffer so much. Our thoughts and prayers go out to you, and we are wishing for the best outcome for all of you.
Love,
Lisa and Jeff
We're sorry to hear about the failed family meeting. Keep plugging away and hopefully it will happen soon.
But aside from that... it's been more than 3 full days and he continues to improve! Keep it up Riley!
Well, considering where things were three days ago, Riley's progress is awesome -- hopefully that continues.
While I can understand how a surgeon might have a busy schedule, it seems preposterous that Dr. Karl wouldn't have time for a meeting with you given Riley's condition. Sheesh.
On a lighter note, for your entertainment, it's interesting to watch how Naomi is treating all this. Whenever we see a mother with a child anywhere, like the store or the park, Naomi seems to remember what her own mom is doing and then she strikes up a conversation with the stranger, saying "my friend Riley is sick and my mom is with Suzanne." And this morning when she came into our room like she always does, but she saw that mommy wasn't in bed, she quickly put 2+2 together and her first words were "my friend Riley is sick." Finally, whenever she speaks to Barbara on the phone she asks how Riley is doing.
Hope the evening is ok.
Love- Jonathan and Naomi
Hey Suzanne and Ken,
Just a little note that i'm thinking of Riley. Been hearing the updates via Zareen, Katie, Lisa&Jeff
-Kat (aka Kathy, your old friend from college)
Lucky those medical idiots are not in New Jersey. I would throw them all in a cell till we got what we needed. Let me know if I need to come out there Praying for you all.
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