Maleek update-finally!!

[maleeksmom]

Hi there

Just want to give you a bit of an update on what has been happening for us and to once again send a huge thank you and a pile of hugs to everyone on this board for being such an amazing support!!! I received several packages of trach supplies---and you have all been in my heart each and every day---just really sorry I haven't sent out proper thank you notes yet!!

We finally moved into a place of our own August 1st and are continuing to get services into place here in Toronto. I am amazed at how much work there is---paperwork, phone calls etc---involved with navigating special needs and medical care in Ontario! Yikes--the pace is really hectic but hopefully will slow down soon. Here are some of the highlights:

1) Well I guess in addition to the earthquake in Japan, 2011 is just going to continue to be a stressful year!! Without going into all the drama and details here--am now also a single parent---so the challenges are intensifying! Any tips on how to manage everything--money, child care etc? EEEEK! I have a three year old (trach/gtube) and a one year old so it is really hectic!

2) Now have some home nursing hours---but definitely struggling to adjust!! It is great to have the help for the first time (no nursing suppport where we lived previously in Japan) but I find the invasion of privacy really tough. How did you decide on the right number of nursing hours? Maleek is fairly stable and active and really resistant to medical interventions---and just becoming more unruly and uncooperative as we introduce more nursing!! So in a way the nursing is making things harder!! Anyone else have any comments?

3) Nursery school for trach kids in Toronto!!!?? So far have been told that no nursing is available for trach kids under age 4 (or outside of the regular school system)! Maleek also has a severe hearing loss so really needs to be in a sign language nursery program. Anyone else struggling to get a trach LO into a nursery program before kindergarten? Will prob post on this again separately as it is such a big and frustrating issue!!

Anyways-hope you have all had a great summer and look forward to being on here more often now that I have a home and internet access!!!

Mairead
Maleek's Mom

[drct1245]

Wow... lots of change for you. Sorry to hear you have become a single parent. Can't help on the navigation of Ontario's healthcare system, but for nursing hours, I would recommend use the hours that you need to feel less stressed and to do the job/task you need to do for your family. Yes, it's an invasion of privacy, however, they are there to do a job, end of story. If you get the right nurses, it feels more like a team than a challenge.
For us, we wanted family time, so we made sure there were no nurses from about 5/6 (depending upon work hrs) to about 10 (we are night owls) and day nurses arrived @8. We didn't have consistent night nursing though.
Good luck!!

[suzanne2545]

We had our trachy in Whitby. We used our nursing hours at night and that suited our family. But, I was a stay at home mom as I didn't have a work permit in Canada.

I'm guessing you will eventually go to work so nursing hours during the day will be a must. How about using them at night only now so you can get good rest? Or splitting it up . . . a few nights for good rest and a few days so you can go out and do the things you need to do.

Most of the services in TO should be able to go to your home. If not for the actual services, then at least for the set up, saving the hassle of going out with two kids to set things up.

Good luck.