The hospital, over the past couple of years, has started having get-togethers for parents of newly diagnosed children.
As a group we met over the course of a number of Wednesday nights in March, earlier this year.
This was great for 2 reasons;
1) Date Nights; M & myself met in town after work, it was too tight for time to get out home from work and back to the hospital for 7:30p.m., so we had 5 weeks of going for an early evening meal and talking like grown-ups for a change, expensive but much appreciated (thanks Mam for minding the kids)
2) It was great to meet other parents and discuss how D affected our kids and how we were all coping with same, and comparing experiences across our differing circumstances.
Well tonight we had a follow up meeting among the parents and the social worker and hospital psychiatrist. Only 5 families were represented, i.e. either a couple or one of the partners came along ( and more men than women, which is prob unusual). I think the awful weather didn't help, but i thought it was really a sign of good care and concern for our kids on behalf of the health professionals that they gave up their night to come in and get us around the table to talk to each other; they basically facilitated social networking among us.
Tonight we all had a good catch up on our experiences over that last year & a bit. One of the women there had an experience of a bad hypo - really frightening and made us think of how we'd respond to a similar situation. She was away from home and struggled with the glucagon injection....(a bit of honesty here) - truth be told we had stopped bringing the glucagon with us when travelling to relatives down the country - we're changing that from now on......
Dealing with the Medical Profession
I really appreciate the care we get from the hospital, however there is one issue i've got and i brought it up tonight;
I'm occasionally a bit peeved that i feel that we are not included in the whys of the treatment of our daughter, its almost a case of, 'Just do what we tell you to do, you dont really need to understand the whys and wherefores, leave all that to us, and dont, dont, Dont go on google......'
Well naturally we do go on google, and yes, it can be a waterfall of frightening stories. But among the whirlpools of fear there is good information in there, and the DOC is where i've probably learnt most about D (and had my mind put at ease in a number of our panics).
I suppose i'm just saying to medical professionals that, yes a little knowledge is a bad thing, but a little trust in the primary caregivers can only help the treatment of our kids.........
As a group we met over the course of a number of Wednesday nights in March, earlier this year.
This was great for 2 reasons;
1) Date Nights; M & myself met in town after work, it was too tight for time to get out home from work and back to the hospital for 7:30p.m., so we had 5 weeks of going for an early evening meal and talking like grown-ups for a change, expensive but much appreciated (thanks Mam for minding the kids)
2) It was great to meet other parents and discuss how D affected our kids and how we were all coping with same, and comparing experiences across our differing circumstances.
Well tonight we had a follow up meeting among the parents and the social worker and hospital psychiatrist. Only 5 families were represented, i.e. either a couple or one of the partners came along ( and more men than women, which is prob unusual). I think the awful weather didn't help, but i thought it was really a sign of good care and concern for our kids on behalf of the health professionals that they gave up their night to come in and get us around the table to talk to each other; they basically facilitated social networking among us.
Tonight we all had a good catch up on our experiences over that last year & a bit. One of the women there had an experience of a bad hypo - really frightening and made us think of how we'd respond to a similar situation. She was away from home and struggled with the glucagon injection....(a bit of honesty here) - truth be told we had stopped bringing the glucagon with us when travelling to relatives down the country - we're changing that from now on......
Dealing with the Medical Profession
I really appreciate the care we get from the hospital, however there is one issue i've got and i brought it up tonight;
I'm occasionally a bit peeved that i feel that we are not included in the whys of the treatment of our daughter, its almost a case of, 'Just do what we tell you to do, you dont really need to understand the whys and wherefores, leave all that to us, and dont, dont, Dont go on google......'
Well naturally we do go on google, and yes, it can be a waterfall of frightening stories. But among the whirlpools of fear there is good information in there, and the DOC is where i've probably learnt most about D (and had my mind put at ease in a number of our panics).
I suppose i'm just saying to medical professionals that, yes a little knowledge is a bad thing, but a little trust in the primary caregivers can only help the treatment of our kids.........
Being told what to do, without being told why, would drive me crazy. You are right to question. Right to ask why... she is YOUR daughter, and YOU know her best. When Elise was diagnosed, they told me how to take care of her, but I soon started questioning why I was doing some of the things they told me to do (like giving her 15g of carbs when she was low... she needed only 5g at the wee age of 12 months).
ReplyDeleteKeep on questioning... you know what's best.
Glad you found a support group -- even tho it sounds like it meets very occasionally.
ReplyDeleteBut, too bad they aren't teaching you d-independence. Doesn't sound like they know how to do their job, if they think you should have to depend on them for all. We barely ever talk to our healthcare team, tho they are very accessible if we need to bounce something off them.
Yea for date nights when you can squeeze them in. Ubergeek and I used to do an early dinner before school board meetings as our date nights because that was what fit into the hectic schedule.
ReplyDeleteIt dawned on us the other day that Bean is without glucagon when we go from school to home because she doesn't carry it with her. We have one at school, one at home, and she carries one with her in her 'regular' kit. Not that it's a long way, but any distance could be a problem if you need the glucagon!
I totally hear you on the 'learning way more from the DOC than at the dr's office' and our team is really good about sharing information and talking us through things. I can't imagine being expected to just blindly follow their instructions with D!
Good for you for voicing your concerns!
glad you're involved in a local support group. we don't have anything like that here, beyond some parents we might meet when we drop L off at camp.
ReplyDeleteas for your docs telling you not to google anything, eek! i'm glad you've been able to wade through all the info out there and find the DOC.