Monday, October 5, 2009

Still flu ridden and surgery prep

Still bogged down with flu with 102.4F fever yesterday. On the sofa today and the heat from my wireless laptop on my lap is keeping me warm. Reuben off school this week (1) so he doesn't get sick (2) no day nurse this week til Thursday (3) Dr's recommendation pre-surgery and thus we're giving him the best chance of surgery going ahead this time. Thankfully his cardiologist has forwarded her July report to CHLA which she says will suffice for a cardio pre-op so one less appointment. I've been unable to look after the boys much these last 5 days. Nursie Jenn did another marathon 10 hr nursing shift to help out though they'll only ever pay her for 8 hrs. Monday's are Reuben's craziest days: UCLA school for 3 hrs, OT and Feeding with Juliana, combined Speech and Feeding at Children's Hospital, Speech at home with Johanne, so it's a full on afternoon even after a busy school morning. The Monday focus is on his 2 main areas of developmental needs: feeding and speech, so it works well to tackle this from the differing perspectives of 3 separate pathologists.

I've known the regime and all the freeway driving takes its toll, it's gruelling at times, and it wore me down so that I was susceptible to getting sick. It was waiting to happen, but I don't know what the answer is. Having a string of nurses who were inept adds undue pressure; they are more liabilities than help, and if it weren't for the school policy of Callum not being allowed in class after opening circle time, I would gladly do it myself. Frustrations with nurses, having to monitor them in matters of health and safety, becomes utterly exhausting. And it's not easy having strangers in your home day in day out, until of course, like Nursie Jenn, they become part of the family. In general, they won't want to do things the way you'd like if there's a shortcut that can be found and this too you find frustrating. The thing is: this isn't unique. It's what so many of you mothers do out there who have to juggle the typical needs of a child with special developmental and medical needs and the resultant therapies and careworkers. Hands off to you, supermums!

And yet, what do I do when all are asleep in the house and I'm awaiting the night nursie Jenn to arrive? I write about my boys of course here on the blog, because they're all that matters.

Meanwhile, the boys are "Climbing the wall", thus today's track on Playlist by my favourite Brit indie rockers, Stereophonics.

2 comments:

ypersico said...

Dearest Catherine - when our nursing was being weaned down and I faced a similar dilemma. Usctioning and driving is quite a challenge :o) We wre incredily lucky to fall into a full time very special person. She continues to be a very important and cherished part of our family - having been with all three boys all their lives. She came with us to early infant program and helped Sapnish speaking families translate sign to Spanish. She learned to suction, tube feed, care for, and read Keith's needs better than any nurse we ever had the grace and fortune to have.

A few years ago, another precious family was in a similar situation and after much back and forth I shared this detail. They were able to find their special person - and it has helped them so much as well.

I know your person is out there - and they will be so lucky to be in your lives <3

~y

ellen charge said...

grrrrrrrrrrrrrrr sitll those nrusing issues sometiems i think u should jsut be comeone