Thursday, April 23, 2009

Bear Cottage

Josh and I took a ride in an ambo to Bear Cottage, Manly, and on arrival I was surprised to see that it looked nothing at all like I had imagined. I didn't exactly picture an old wood house encompassed by a verandah, but more of a sprawling, single level home. In actual fact, Bear Cottage is a cross between a hotel and a 2 storey modern home.

Bear Cottage is a relaxed place; even the nurses wear casual clothing. Lunch and dinner is prepared, and set out like a mini buffet everyday, and while the variety is great, it tasted even better.

This is the view from the balcony off the dining area.

We had our own "apartment" downstairs, with 4 kids in one room, and Josh, John and I in the other, as well as the dining / lounge, and a kitchen and bathroom.

The kids all settled quickly. A few days after we arrived, Paris discovered she actually goes to school with one of the kids who was there with her family. Kayla became the Chef's shadow, and Kane became the Play Therapists'.

Bear Cottage is a respite place for families. Most families use it as a "time-out" from constant care of their child, or to utilise nursing care while spending time with their other kids, for example. We used it as a stepping-stone from hospital to home. While our apartment was downstairs, Joshy's ""other room" was upstairs, along with a lounge/bed and another bathroom. We had Josh sleep in our room every night, except for part of the first night, and only had Josh looked after a handful of times.

We also had a visit from Liz, and met Ashleigh for the first time too. Liz showed us some exercises to try for Josh, and boy! didn't Josh protest with the loudest vocal sounds Ive heard since his accident!

I also even got a reflexology (foot) massage! Ahhhh! Bit weird having all the focus on my feet, but simply divine!

I took the kids to the Aquarium, took the three girls shopping with the Pumpkin Patch voucher and also chose clothes for Kane and Joey, and bought some other bits and pieces. Kayla Kane and I also saw Bedtime Stories at the movies.

Tuesday night I had to take Melie and Paris to their Nans because of rehearsals for their school musical which were being held all of Wednesday and Thursday. I drove straight there and back, but what should have been a 2 hour trip took me more than 3 hours! I had to buy a street directory (which obviously didn't help!), and added to that, it was night, raining, I had no E-Tag, and... no drivers license!

Id discovered a few hours earlier that it was missing, and I can picture in my head removing my license from my wallet, and that my organ donor card was stuck to it so I separated them. But I cant remember why I needed it, or where I was. I called security at the hospital, but my license had not been handed in. So Ive no idea of its whereabouts. Ive had to call the Crisis Hotline to report it missing, and now just need to get to the RTA...

Wednesday saw most Bear Cottage occupants enjoy a lovely breakky at Bavarian Bier Cafe (Manly), and then some people, including Josh and Kane, were spectators on a water taxi watching others of us - like John, Kayla and myself - Parasail! I was so proud of Kayla up there with us! The silence and peacefulness, while suspended in the sky, is amazing. One of the nicest things Ive done.

(pics to come)

And I was especially glad that Josh did so well. Afterwards, I took Joey for the 3rd part of his first "real" outing in 11 weeks; we walked around the Corso, and back up the long hill to the Cottage in time for lunch.

We also had a meeting with our Case Manager and Social Workers, to try and get some kind of care plan (a routine, or "who's" doing "what") for Josh, started.

My stay at Bear Cottage was relaxed, and it was fantastic to see the kids have so much fun without the stress. The ladies I met are such gorgeous people, and have been really helpful and supportive.

Since I have never had anyone in my life - let alone my own child - with the same needs as Josh, I am very open to suggestions on how to care for and manage him. I don't know any better, so why not listen to people with experience. yes, ultimately, Josh is my child, and I'll do what I think is right, but I also have to hand over some trust to others too.

One of the biggest issues evolving over the last few weeks, but especially during our stay at BC is "to suction or not to suction". Or rather, how much suctioning is too much? At BC I was shown or told other ways to deal with the secretions, or alternatives to sticking a yankauer or catheter in Joshy's mouth or down his throat. Things such as using mouth swabs, or using paper towel or a hand towel to wipe it away. The difference is knowing when a wipe is sufficient or a suction actually is required. The other thing brought to my attention is the actual portable suction unit we use for Joshy's secretions. I hadn't considered how it looks, or the actual act of suctioning in public. So, now Ive put the unit in a cute Susans enviro bag and hang it on the stroller. And sure, if we gotta suction, we gotta suction, but again, its about knowing the difference between having to, wiping it away, or waiting for Josh to cough it up. We've been told from the beginning, the more you suction, the more you create.

John and I had differences of opinion, and he didn't like BC, so he left.

Unfortunately, though we weren't due to leave until Sunday (10 days at the Cottage), on Thursday, Josh was sent to the Children's Hospital Westmead with a suspected chest infection!

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