Tuesday, September 11, 2012

More than ready

The last few weeks have been hard emotionally for me. Owen has been difficult, he is cranky and bored easily, so he does things he shouldn't like playing with the CD player or he runs around and around the kitchen table - looking out from the corner of his eye - his new visual stim....arrrghhh. He screams and yells a lot and this upsets Cy who cries and whines really loudly which makes Owen yell even louder. To put it simply Owen can be hard work, he needs alot of attention, he is curious and naughty and he can be a down right bully, (Cy cops it most)and everyone is frustrated with him at some point during the day. So I feel it is really time for him to move on to preschool a couple of days a week. I have mixed feelings about the fact that Cy and Owey will be in the same class, of course Cy will be able to help with signs and communication but I am a little worried that Cy will have lost his respite days from Owey, Cy really needs a break from him. I guess it's one of those 'suck it and see' moments (do you know that expression?). And anyway it will only be for 10 weeks before school closes for the year, then Cy will move to the Kindy room in 2013. (our school year runs from Feb till December). Everything changes. My hope is that with Owey in preschool 2 days he will appreciate and enjoy being at home again instead of running a terror campaign on the house and everyone in it.

Friday, September 7, 2012

June post that I didnt post

So June was a complete write off for Owen, he was sick with high temps for 6 days at the beginning of the month, then something changed and I knew he was in trouble, I took him to the doctors that day but she couldnt hear or see anything terribly wrong - "just an upper respiratory infection",  I felt reassured.....but I was also troubled......I was having flashbacks to his first year when after his heart surgery when he contracted RSV and his airways were shot.

2 days later (8th day of high temps) we went back  to the doctors and this time she could hear crackles in his lungs, she gave me a ticket to get an xray of his chest done  - she didn't make it seem very urgent - she even said "get it done tomorrow" - I left the surgery and went straight to the Xray clinic - 10 minutes after having the xray, the doctor rang - Owen has pnemonia !

By this stage Col, Owen and I were exhausted, we were hardly sleeping at night, Owen would flap around, grunting, coughing, he was in our bed to save ourselves having to constantly get up to reassure him. Anyway we started him on antibiotics and braced ourselves for another night of very broken sleep - the doctor wanted to see him in the morning. By this time Cy had also come down with a bad chest ..

By morning she could hear even more crackles in his chest and she sent us off to the hospital, we were admitted and actaully for that first day he was kind of okay - they put an IV in and started giving him antibiotics - but come night time he CRASHED his O2 sats went down to 82 and he went onto oxygen.

 He kept going down hill for the next 3 days, it was so scarey, at one stage I took him off the oxygen to take him to the toilet (he ended up totally regressing with toileting during our stay in hospital) and on the way back he was like a limp dishrag in my arms, his sats were 76 when we got him back into bed, he had stopped eating and drinking, I started to panic a little why wasnt he getting better??

On the 4 th day he woke up after another shitty nights "sleep" and wanted some orange to eat and then he ate all morning and started drinking again - which was lucky because the IV packed up that afternoon. Finally he had turned the corner, now we were just waiting for his sats to come back up - they kept on trying to wean him of the O2 but he just couldn't cope crashing back to 85 within a few minutes. This went on for days ,,,,,,.......,,,, and days. by this stage I had, had 2 nurses a doctor and the ward cleaner ask me "did I know that Owen had Ds when you were pregnant?" NOW I don't know what the F. that has to do with his care but I am SO sick of people asking me that question 3 years down the track, still answering THAT question. Does it matter?? Does my answer matter??? Does it give them permission to feel sorry for me  OR think I have brought this situation on ourselves ??? I was so angry with thinking...what are they REALLY asking ???

They tried some steroids to reduce the swelling in his lungs - horrible stuff  - Owen was hyper/agitated on it and I hated seeing him like that - the course of steroids was 3 days long and I wished each of those days away as quickly as possible.

At this stage (day 7 in hospital) I thought if we dont get him moving the junk that was in his chest was never going to get out, so I started taking him off the O2 and making him walk, and play on the floor until he would get lethargic and pale and then I would put him back on the 02.

On the morning of day 11 in hospital, and with Col and I completely shattered) we were finally allowed to take him home - his sats were sitting around 94 - but that was good enough - we were busting him out.

So - after 21 days of illness he was finally getting back to normal, well except for the toileting....so frustrating!

But then I started to feel sick .....really sick, I am pretty sure I got what Owen and Cy had had, it was a nasty flu and no wonder Owey got pnemonia, my chest was so tight and congested I really struggled to shift the junk on my chest, and I think it was only that Cy is a bit bigger and stronger that he managed to stay out of hospital himself. So after laying around for over a week and coughing until it hurt I started to feel better and Owen was starting to have less toileting accidents, Cy had stopped coughing too. And  June was over !

July arrived - Owen is toileting again with no accidents, everyone is well.
And I've decided to be generous and think that people ask me if I knew Owey had Ds before he was born out of idle curiosity, nothing more.....