Shift Nursing

A common question we are asked is what will happen with James when the baby is born, so I thought I'd take a few minutes address this question with the newest government coverage we have received, which is shift nursing. We have many government coverages, and maybe someday I'll get around to breaking down all these many programs which are so confusing unless you're involved in it (just ask Rob, he's always confused about who's covering what). For now it suffices to say that the government has been very helpful right from when James first start having difficulties in March 2006. It is only recently that we ran into the reality of what it would be like without coverages when it comes to the SATs monitor that we need and oxygen coverage. I cannot imagine the stress and anxiety if we had to pay for all of James expenses ... reality is we wouldn't be able to do it, and so James would have suffered and likely not have gotten the treatment he needed.

But for now we're talking about shift nursing. Previously I was training a friend to take James when the baby was born, but once James was hospitalized and then began to require oxygen and so many other changes in his medical situation we realized that it would not be so easy anymore and we definitely need a more qualified person who was able to evaluate and make decisions when necessary.

Upon leaving Sick Kids I enquired about nursing coverage. I had previously been told that we should qualify for this coverage, but we never really felt that it was necessary. In most aspects James was just a normal kid, we just did our best to work around his feeding schedule. Anyone who knows me knows how particular I am too, so it's not easy for me to give over the care of my child to someone else. But James is no longer so "normal" and if I thought we had to pack enough to go away before ... that sure seems easy in comparison to now. Unfortunately for James this just means that I rather not take him out and the poor child has been very house bound. With time we'll adjust and have to get used to all that comes with leaving the home, but with the business of the last couple weeks that has had to wait. At the same time, I didn't like the idea of different strangers in my home all the time, so I just let the idea be since we were managing fine without it.

Besides realizing the extra burden James now puts on us, one of the reasons I now decided to go ahead with this coverage was because I know someone who works as a shift nurse who was willing to help us out. She would have done it as a volunteer, but it only made sense for her to be paid for what she was doing if there was a way too ... especially because then I wouldn't feel so bad always asking for help. Normally with shift nursing you call in and say when you need a nurse and they send someone out for that time, usually you get a few different nurses assigned to you, so you don't always know who you will get. In this case I will be working more directly with our friend so that I can make sure that I can get her to do it each time ... hopefully we'll be able to coordinate our schedules so I won't need anyone else to come in.

We have been battling with the Case Manager for more reasonable hours, but finally seem to be getting somewhere. Originally they were only going to give a few hours on a specific day ... this would actually be rather useless since I never know what day I would need them ... and I could easily eat up those few hours just for an OB appointment. They have finally loosened the reigns a little and instead are giving us 25 hours per week. I'm told this is still not a reasonable amount given James' medical demands, but this is a start ... and to be honest I don't know what I'll do with the hours. For me it will be adjusting to the idea of allowing someone else to care for James. But reality is that when I need help it's usually for the other kids since it's James that requires all the appointments, etc. But with a new baby on the way ... I'm sure I'll quickly find ways to use up this extra help. This coverage will allow me to get out and do what needs to be done or just spend some time with the girls or my hubby. I still have a hard time with this ... since James is so much a normal child, just a child that's tied down to various tubes and therefore not so mobile. We do not want to exclude him and already feel bad enough whenever we go away and he stands there with longing eyes wanting to go with. There is not a day that goes by that he doesn't ask to go in the van, he's happy to go anywhere, as long as it's away from here.

Another benefit to having a friend do this is that she is more willing to help with the other kids. Normally you receive coverage for the child needing care and that's it, the nurse does not help with anything else. (Therefore I would have to find another sitter for the girls each time). Although I will not always have her watching the other kids, she has offered and is willing to take them, even saying that having them around helps as they can let her know how things are done and it gives James someone to play with, keeping things a bit more normal, etc.

So ... yes, we have help for when the baby is born ... and we are extremely thankful for this help and how it has turned out. So often I wonder how I'm ever going to manage ... and although I still wonder how I'll get through the weeks after the baby is born, I know that the help is out there, I just have to learn how to use it. I continue to pray for one of those ideal babies who just eats and sleeps :) But after two who were the extreme opposite, I'm not counting on it!! We carry on ... one day at a time! And maybe some day, some year I'll be able to actually get some sleep again :)

The Lord indeed continues to bless us and sustain us, carrying us through during the good and the not-so-good times!!