Well... we're in the market for a big boy bed...

I think that says it all really.

After a big weekend in Sydney AJ and I struggled through a late night dinner/bath/teeth/bed routine, finally got both babies off to bed and settled in for some TV (AJ) and reading (me). No more than 2 minutes later a massive crashing sound sent AJ and I bolting from opposite ends of the house towards James' room. There he was howling and lying on his side in the (tiny) space on the floor amongst his toy box, book box, wardrobe and change table. We comforted our crying boy and promptly set up the portable cot in our bedroom. He's been sleeping there (or in our bed) for the past two nights.

We can't believe he managed to climb out of the cot! We're still not quite sure what to do. Still thinking over the options. We're not keen to put him back in the cot. Our thinking is that if he can do it once...

He's too little for a big boy bed! Besides, he has absolutely no "road sense". He has no concept of where the edges of the bed are or what happens when you go over the edge (well, he does know now). We still have to be very careful when he's on our bed that he doesn't get too close to the edge and bounce right off.

At the moment a low "real" bed with a rail and cushions all around, a portable cot or a homemade plywood futon (essentially, his whole room becomes the cot in this scenario) seem to be our options...

He's too small for us to need to be thinking about this!!!!!! AJ sees this as a true RTS moment: the need for equipment that he is just about age ready for but nowhere near developmentally ready to use.

I see a gap in the market for a low cot...

So here's where we are...

I thought I'd better have a go at typing this thing out, seeing as it's been a week. We're home and have spent the past few days resting, reading, watching movies, cooking roasts and drinking wine (AJ and I have been the ones drinking the wine). I feel supremely relaxed, but AJ has caught a cold. It's lunchtime here and AJ is tucked up in bed reading, I'm typing and the babies are sprawled alongside Fergus the dog in front of the TV. The heater's on. It's nice.

OK. So I've had a quick re-read through my previous posts to work out what I've said so far and help decide what I want to say. Here goes!

We went to the anesthetic clinic, as planned, last Wednesday. We met with an anesthetist for over an hour and discussed the possibility of surgery for James. Once again I have the highest praise for The Children's Hospital at Westmead. Everything was explained clearly, every option was explored, we were treated kindly and gently steered in the right direction. The doctor spoke with our sleep specialist (who we saw on Monday about James' apnea), the doctors performing the procedures and the anesthetist who would actually be caring for James during and after the surgery before "recommending" that the surgery be postponed.

The new plan is to trial James on a C-Pap machine and do another sleep study before any further surgery. Secondly, we are meeting with (another) specialist in early August to schedule the removal of James' tonsils and adenoids. After that we will reschedule the original surgery. I felt much better about everything once all these additional plans were made. I feel as if at least we are still moving forward and getting things done. We've just taken a detour down a new path. :-)

Thank you for all the support and good wishes over those few days. It was lovely to know people were thinking of us and have at one time or another been in the same boat.

After meeting with the anesthetist James and I left the hospital and headed back to "Grandma's" house. Driving back I realised it had been a long time since I'd left the Children's Hospital seething with rage, that incredible irritation that comes with feeling powerless. Not since the days of Clio's hip surgeries - a topic of it's own, for another day. The good old days! :-)

Our trip to Sydney turned out not to be an entire waste! We returned to the hospital the following morning and met with our sleep doctor. James was fitted for a C-Pap mask, which we've brought home so we can commence "C-Pap training". This involves James wearing the mask for short periods of time each day, building up to longer periods so he will become used to it. In mid August we return to the hospital for a three night stay (and I thought I'd lost the ability to be surprised when it comes to my children's health) so the specialists can work out the appropriate levels for James' C-Pap machine. On the third night James will undergo a second sleep study.

I also booked an appointment with James' (and Clio's) orthopedic surgeon to talk boots, gait, tethered cords and hips. That appointment is in the last week of July. So we have a busy few weeks coming up!

Two last things!

Our sleep doctor told us on Thursday that the sleep study results he told us on the previous Monday were wrong. It turns out James's apneas aren't 30-40 per hour, "they're closer to ninety". How does that work? When is he ever asleep?

Last thing. Did I mention James is WALKING???!!!!!!!!!!!!!

Just short distances and short periods of time at the moment, and he falls as often as stands. But there's no mistaking it. We're going to try catching it on video. :-)

And I have a photo for this post! It's one of James wearing his new C-Pap mask, doing his "training". Doesn't that mask look like the most comfortable thing you could wear while sleeping?

Cancelled.

James' surgery was cancelled. I'm so exhausted after a hectic 36 hours or so. I'll come back and write some more about what happened yesterday and today, and where we go to next, later on tonight. At least we're home now, and it was the right decision.

Must go and tend to two cranky and tired toddlers who both need a bit of love right now. :-)

More on Sleep Apnea and Surgery This Week

Have to be very quick, but here goes:

James has severe obstructive sleep apnea. During his sleep study last week, for those who want to know the figures, his oxygen levels were dropping to 50% and he had between 30-40 apneas per hour.

So what does this mean? It means that tomorrow we will go to the Children's Hospital pre-admission anesthetic clinic and discuss what this means for James' surgery on Thursday. We do know it means he must spend the night after surgery in the Intensive Care ward. We also know it means that the surgery may be postponed for now. Everything is up in the air. All I can do is laugh, it's the black humour coming out again... isn't all this drama exciting? How boring it would be if everything proceeded normally. Ha ha. Ha.

It also means we have a referral for another specialist now, to discuss tonsil and adenoid removal. And our sleep doctor is going to hook up with us sometime on Thursday or Friday while we're at the hospital ('cause he likes to hang out there too) to fit James for his very own tiny C-PAP mask, so we can start "C-PAP training". It all just sounds so breezy and casual, doesn't it?

OK. Gotta go, tiny boy crying for dinner. Maybe I'll get a minute to write a little more tomorrow night from my mother's place (our surgery "Base Camp").

Quick update: Sleep Apnea

So, he has it. "Quite a lot" of apneas, but "not dangerous levels", according to his doctor. I've only spoken briefly with James' doctor, straight after he had his first look at the results last Monday. We have an appointment this Monday to discuss the results in detail and to talk about what this means for James' surgery on Thursday. As the doctor pointed out, it's good to have this information now, before the surgery.

The actual sleep study went quite well. We were really well-prepared for what the evening would involve and James had had very little sleep during the day so he accepted all the bits and pieces attached to his head without too much complaint! He slept well, only needing to be cuddled back to sleep twice through the night. He even slept in his own bed, which is more than what happens at home. ;-)

I thought it was the most bizarre experience - the next day I was tired, and knew a procedure had been carried out, yet it felt like nothing had really happened, time had passed really quickly and I had very little recollection of everything that had taken place (if that makes any sense)!

Sleep study, website, (no more) plaster boots.

So what do I have for today's photo-less post?

Something exciting! (For AJ and I, anyway.)

James has grown out of his plaster boots! So we can legitimately take a break from wrestling them onto his feet each morning for a few weeks. Because his surgery is so close (the 9th of July) there isn't any point re-casting for a second pair. Instead he is being fit for his "real" pair of boots next week so that they will be ready soon after he comes home from hospital. They have some fancy name, which I can't recall. The something or other-supinator or something like that. I like an orthotic device with a fancy name! The something or other-supinator almost rivals The Dennis Brown Mark II Harness. :-)

What else?

Something interesting!

AJ has been working hard for many weeks to create an Australian RTS website. One of the main ideas behind establishing an Australian site is to provide a place where Australian families with a new diagnosis of RTS can make contact directly and quickly with other Aussies. We're waiting to hear back from the administrators of the RTS "main page" (as we like to call it around here). We're hoping they will agree to link to RTS Australia.

And last of all? Something.... that has to be done.

A sleep study. We met with Dr Chris Seton at The Children's Hospital, Westmead (our home away from home) last Thursday evening as part of our ongoing festival of assessments and tests related to RTS. Dr Seton deals with sleep disorders and we met with him to discuss sleep apnea and RTS. He felt strongly that James should undergo his sleep study before having surgery so now we have an appointment for a sleep study this Saturday night. I feel somewhat apprehensive about this one. Lots of reasons. At least it's soon so there's not much time to think!

A hairbrush (and a casserole).

Ok. It's too hard to post every day with photos (well, for me it is, anyway). I'm going to post for a while without photos - far quicker and easier (well, for me it is, anyway), which means it's more likely something will get posted, rather than nothing. I think I will post pictures regularly, but less frequently (at least for a while), in the blogs sidebar.

Anyhow, today's big news concerns hairbrushes. A tiny, plastic, pretend hairbrush specifically. Dad and I caught James this afternoon carefully brushing his hair with said hairbrush (it belongs to Clio's dolls). Once again I am amazed by his ability to learn and to surprise!

Wait! A second piece of exciting information! We had our first real, true "family meal" together on Saturday night. James sat in his highchair at the table with us and we ALL ATE THE SAME THING. It only took 4 1/2 hours in the slow cooker for the meat to become tender enough for James to swallow it. I don't care if all our meals are cooked in the slow cooker from now on. Still on a high. :-)