Wednesday, November 10, 2010

Medical Update

We have a date for the CT scan - it's not until November 23rd, so we didn't get lucky with a next day appointment this time around and we have to wait the usual 2-3 weeks. Ah well. I guess that gives us all more time to pray for the scan and for FABULOUS results!! So write it on your prayer lists now ;) 

I'm still hoping that Maddy can be home for Christmas but I'm not sure whether or not we have enough time. Everything takes so much time - time to schedule the tests, then more time to wait for the results, then even more time for the multidisciplinary meeting where all the doctors will discuss the results and where to go from there. Then maybe more tests etc... I still have my fingers (and toes!) crossed but I'm being "cautiously optimistic" about it since I know that there's still a fair chance that she may be in there still at Christmas time. Our hope was to get back to Australia at the end of December or beginning of January, but we're not going to book anything until Maddy is home.

Yesterday, Maddy had another ultrasound on her hips to see how they were developing now that she's wearing the Pavlik harness 24 hours a day. It appears as though the harness is helping to keep her hips in the right position for now, but Maddy will still need to wear the harness 24 hours a day for at least a few more months. 

Maddy's oral training has been continuing slowly, slowly. Previously the occupational therapist was the only one allowed to give Maddy milk orally - but last week I complained to the nurses that it isn't consistent enough for Maddy. The OT can only come at 4:30pm since they work from 9-5,so they can't come for Maddy's 8:30am feed, or for her 12:30pm feed (lunch time) - but often Maddy is too sleepy at 4:30 so the OT wouldn't do the oral feeding at all. Then they don't work on weekends, and Wednesdays they have clinic so it ended up being that Maddy might only have her oral training two to three days a week. After talking with the nurses about the situation, they have now agreed that the nurses can also do the oral feedings at any of her feeds and in the past week she's already improved tremendously! I think that this time last week, her maximum was only about 1.5mL but today she managed to drink 15mL!! If she keeps improving this quickly, she should be on full oral feedings by the time she comes home. (If she isn't able to take full oral feedings when she comes home, she will probably need to have a G-tube, which is a tube directly through the skin into her stomach, and while it's not that bad - it's actually probably safer and easier than the NG tube that goes into her stomach through her nose - I'd rather not have to worry about that if possible!!) Maddy is down to six feedings a day, every four hours around the clock. She takes 120mL each feed so she still has quite a lot of improvement to do before she has full oral feedings, but it's so nice to see that she's now on the way at least :)

I don't think that there is much more medical news for Maddy at the moment. She's still growing, getting fatter all the time. She's always alert and interested in what's going on around her. And I think I already mentioned that she can now suck her thumb - I'm so proud of that achievement! She also has a new bed, a full size cot. She looks so tiny in there - I think they had to get a bigger bed to accommodate all her toys rather than because Maddy was outgrowing the small bed!

So now, we're mostly just waiting for good news from the CT scan on the 23rd. And after that hopefully we'll be able to work towards bringing her home :)

1 comment:

  1. I want a photo of Maddy swamped with toys in her new big cot! :D