15 days and counting

We beat the record and I don't think it's a good record to beat. Noah has now been in hospital for 15 days - a day longer than his longest ever stay. We could have gone home today except we are waiting to see a specialist before we leave and had to wait to get a feeding pump sorted out to take home. If we leave without seeing the specialist it will probably be months before we can see him, so we are (not so) patiently waiting for him to come up and see us, so we can be discharged.

When I got back up to the hospital on Sunday, Noah looked really well. Mum had done a great job of looking after him on the weekend, and it was so good to see him with no oxygen on!

He gave me a little smile when I first came in and rubbed his arm, then about ten minutes after I arrived it was like he all of a sudden clicked and realised that I was back and gave me the biggest smile. I hadn't seen him smile like that for a couple of years. It was amazing to see his response and to know that he knew what was going on.


The day after we got back from Sydney the nurse who was caring for Noah thought she'd have some fun with Aaron. She is a Sydney supporter, so she cut out the newspaper clippings about the game, and laminated them and put them up on the wall with some red and white balloons. All the nurses thought it was hilarious - especially when Aaron came up after school and saw it, and went out to the desk saying he wanted to make a complaint to the head of the hospital! :)

The days and now weeks have just rolled into one and today I actually had to ask what day it was. All of us are very tired and over it now and just want to all get home, especially since we hope to move into our new house in a few weeks, and have SO much to do before then! Yesterday we got Noah into his chair and out for some time in the playground since he was no longer hooked up to three machines.

Kobe is probably the only one who hasn't had enough and will probably be sad when Noah does go home. He loves hanging out with Eden in the mornings and the mornings that Lisa and Eden doesn't come to get him, he cries and tells me he wants to go in their car.

He has been so good, especially considering he hasn't had a proper sleep during the day for weeks. He wanders around the ward and charms all the doctors and nurses. He loves spending time with the play therapist who kept him entertained for the last two days.

We had a nice surprise visit from Steph, Chloe and Lachie this afternoon. It was nice to spend some time with them out of the room and in the playground.

Kobe has spent all night playing with the balloons that they bought for Noah.

We have decided that if the specialist doesn't come up tomorrow we are just going to take Noah home anyway. We will be taking a feeding pump home so that Noah can have a continuous feed, rather than the bolus feeds he has been having. We hope that it will make it less likely that he will vomit and hopefully decrease the chances of him aspirating again. Hopefully it won't take long to get used to and life can be back to normal again.