Monster storm - Shovel the walk - Groundhog Day - Upheaval in the Middle East - New wheel bearings for Eliza's car - Replace Sarah's laptop (a writer needs her tools) - Shovel the walk again...
Mostly, it feels good to have the mundane begin to overtake the urgent and frightening. But, finding the pathway for two too busy, kind of old parents to return to work responsibilities - most of which involve commitments to other people of one kind or another - is not a straightforward process. Seddon needs to return to her one day per week clinic at the VA - complex pain management patients who need attention plus a per diem contract that doesn't pay anything if Seddon doesn't show up. But, it's on Tuesdays and I have two upcoming Tuesdays with travel commitments for which not going means someone else has to pick up the slack. And every week day has something similar to negotiate - we are still in the purgatory of the not-so-urgent and the not-yet-mundane..
Sorry, I know, this blog is about Sarah's healing not about her parents' little logistical problems. And Sarah continues to do generally well. Pain remains an issue like clockwork - medication blood levels fall and pain increases - chest wound (fractured sternum), right leg (femoral nerve injury), headaches at times (that's new, what's that about?), and since the dressing change on Monday, a new pain at her PICC line site (?infection, mechanical vasculitis, uncomfortable positioning of the catheter after the dressing change). This latter new pain necessitated a call to the home health vendor and an unplanned visit (in the snow storm) by nurse Diane. She pleasantly and carefully assessed the situation, removed the dressing, repositioned the catheter, applied the new dressing - with complete removal of Sarah's discomfort. She also drew blood for Sarah's INR test of her blood clotting so it won't have to be done tomorrow. (I wish setting up her laptop was as easy, but nurse Diane was not volunteering to help with that.)
Tomorrow is the first of a series of multiple follow-up office visits for Sarah. First, at 7:45 Stuart will call from DHMC to talk again to Sarah's pacemaker and make sure it is feeling OK. Then Sarah and I will head for DHMC (giving Seddon a work day to herself) for an echocardiogram and a visit with her pediatric cardiologist (who continues to be her "adult with congenital heart disease" cardiologist). The echocardiogram will be the first look into her heart since her surgery and will tell us (we hope) that there are no new "vegetations" that would suggest continued infection in her heart. Her cardiologist will examine Sarah, tell us about the echocardiogram, and continue our Coumadin (blood thinner) treatment plan.
Next week Sarah has Tuesday visits with the vascular surgeons to check on the circulation to her right leg after the surgery to remove the embolus there and with the infectious disease specialists who will have the results of the laboratory work done this past Monday (another chance to be sure her infection is under control). Next Thursday she has a visit with her primary care medical home here in Concord to begin some of the transition of her care from an entirely specialty domain to one coordinated by her primary care physician and her team (and probably us). The week after that there are follow-up visits with her heart surgeon and his team and probably another follow-up with her cardiologist. We are not complaining, mind you, grateful in fact - but it does make the coordination of any other part of life a challenge.
I was supposed to present at Pediatric Grand Rounds at DHMC next Wednesday, but have decided to postpone that talk until June. The subject, ha ha, was Supporting Health Care Transitions for Young Adults with Complex Health Conditions of Childhood Onset - or something like that. I had hoped we might be further out of the woods by now, but at least for another week or so, the combination of preparing a one hour lecture and turning up at 8 AM in Lebanon seemed a little too uncertain for the necessary commitment.
Mostly, it feels good to have the mundane begin to overtake the urgent and frightening. But, finding the pathway for two too busy, kind of old parents to return to work responsibilities - most of which involve commitments to other people of one kind or another - is not a straightforward process. Seddon needs to return to her one day per week clinic at the VA - complex pain management patients who need attention plus a per diem contract that doesn't pay anything if Seddon doesn't show up. But, it's on Tuesdays and I have two upcoming Tuesdays with travel commitments for which not going means someone else has to pick up the slack. And every week day has something similar to negotiate - we are still in the purgatory of the not-so-urgent and the not-yet-mundane..
Sorry, I know, this blog is about Sarah's healing not about her parents' little logistical problems. And Sarah continues to do generally well. Pain remains an issue like clockwork - medication blood levels fall and pain increases - chest wound (fractured sternum), right leg (femoral nerve injury), headaches at times (that's new, what's that about?), and since the dressing change on Monday, a new pain at her PICC line site (?infection, mechanical vasculitis, uncomfortable positioning of the catheter after the dressing change). This latter new pain necessitated a call to the home health vendor and an unplanned visit (in the snow storm) by nurse Diane. She pleasantly and carefully assessed the situation, removed the dressing, repositioned the catheter, applied the new dressing - with complete removal of Sarah's discomfort. She also drew blood for Sarah's INR test of her blood clotting so it won't have to be done tomorrow. (I wish setting up her laptop was as easy, but nurse Diane was not volunteering to help with that.)
Tomorrow is the first of a series of multiple follow-up office visits for Sarah. First, at 7:45 Stuart will call from DHMC to talk again to Sarah's pacemaker and make sure it is feeling OK. Then Sarah and I will head for DHMC (giving Seddon a work day to herself) for an echocardiogram and a visit with her pediatric cardiologist (who continues to be her "adult with congenital heart disease" cardiologist). The echocardiogram will be the first look into her heart since her surgery and will tell us (we hope) that there are no new "vegetations" that would suggest continued infection in her heart. Her cardiologist will examine Sarah, tell us about the echocardiogram, and continue our Coumadin (blood thinner) treatment plan.
Next week Sarah has Tuesday visits with the vascular surgeons to check on the circulation to her right leg after the surgery to remove the embolus there and with the infectious disease specialists who will have the results of the laboratory work done this past Monday (another chance to be sure her infection is under control). Next Thursday she has a visit with her primary care medical home here in Concord to begin some of the transition of her care from an entirely specialty domain to one coordinated by her primary care physician and her team (and probably us). The week after that there are follow-up visits with her heart surgeon and his team and probably another follow-up with her cardiologist. We are not complaining, mind you, grateful in fact - but it does make the coordination of any other part of life a challenge.
I was supposed to present at Pediatric Grand Rounds at DHMC next Wednesday, but have decided to postpone that talk until June. The subject, ha ha, was Supporting Health Care Transitions for Young Adults with Complex Health Conditions of Childhood Onset - or something like that. I had hoped we might be further out of the woods by now, but at least for another week or so, the combination of preparing a one hour lecture and turning up at 8 AM in Lebanon seemed a little too uncertain for the necessary commitment.
Carl, when you do that lecture, is it open to everyone? it sound fascinating and I'd love to sit in if I could!
ReplyDeletePediatric Grand Rounds are open to anyone. They occur every Wednesday morning except in July and August at 8 AM at DHMC Lebanon. My rescheduled talk on health care transition for youth and young adults will be June 2. We have a federal grant to be the national center on health care transition. You can find our website at: www.gottransition.org (this is a temporary site) or find us on Facebook at GotTransition. Check it out.
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