Sunday, December 12, 2010

Discharged :)

On Friday, we went up to the hospital for an ultrasound on Maddy's hips. Friday morning was the end of our home leave, and so I needed to leave Maddy at the hospital for the whole day until we had a meeting in the afternoon with a few of the specialists.

The meeting with the specialists just turned out to be some kind of disclaimer from the doctors. "Usually we would insist on doing a bronchoscopy when a child has symptoms of airway malacia or narrowing of the airways like Maddy does, but we are not doing that because of these reasons, but you need to be aware that really her airway hasn't been properly assessed". I'm aware of that, but I'm also aware that the CT scan did suggest that she has the laryngomalacia, and this is consistent with diastrophic dysplasia. Even if we were to do the bronchoscopy, in the words of Prof Sillence, there's a 99% chance that we'll just confirm that she has laryngomalacia due to the DD - something that we can assume from what we already know about her symptoms, the CT results and DD in general. There is nothing that we can do to treat it, it is something that she will grow out of in time. 

After waiting around at the hospital until 5:45pm for that meeting, we were free to officially begin to be discharged. That involved a lot of appointment making by the nurses (I think we already have six follow up appointments with various specialties), bill paying, vitamin ordering (although we forgot and left them up at the hospital) and just waiting around for various bits and pieces. We ended up getting home at 8pm after all that! But now that we're home, we're home for good :) No more trips up to the hospital for a while! (unless we decide that we want those vitamins after all ;) )

We received good news from the ultrasound - the Pavlik harness that Maddy's been wearing for the past two months has been doing it's job and Maddy's hips are no longer dislocated. This means that Maddy no longer needs to wear the harness, and she's been LOVING her new-found freedom. In the harness, she could only slightly wiggle her legs, but not really kick them around at all. Now she is kicking them non-stop.

I've been playing around a bit with Maddy's feeds since I didn't really feel as though the hospital routine was working for her. Last week, there were times that we really had to force feed her when she was crying and thrashing her head about, obviously not wanting any more and it was VERY painful for us all. The hospital wanted me to feed her six 100mL feeds a day, and sometimes it was a struggle to even get her to take 50mL. But we knew that if we couldn't get an average of about 600mL, she may need the NG tube put back in, and none of us want that. After a bit of experimenting, we are now feeding her eight feeds a day, averaging about 75mL. If she is hungry and eating well, I'll give her the full 120mL but if she is cranky and not wanting any more after 50mL, I'll stop the feed right there rather than forcing her to drink more. With this new routine, she's actually drinking more than before, and it's a lot easier too! (although there is more bottle washing involved). I know that as she gets better at feeding, she will probably drink greater quantities less frequently, but for now, this is working for us, and we're all happier as a result. 

And would you believe it, since she's been home I've been so busy that I've hardly taken any photos? I need to get around to that ;) Hopefully next time I'll have a bunch of new pictures for you all :)


  1. :) Welcome home, baby Maddy! You're just in time for your very first Christmas! Yay!!! Sorry Nicole; there are too many exclamation marks but I'm super excited for you guys. :D

    I will continue to pray for Maddy's continual improvement and for you, Bernard and Lana - for energy, strength and good health.

    Much love and best wishes for a happy Christmas!

  2. Wow, that is great news all around! I am so glad that her hips are not dislocated and she doesn't need the harness anymore. She must be loving her freedom. I think what you are doing with her feeds is great. The less you have to force feed her, the better she will eat in the long run. It sounds like she's getting her goal amount in daily, so whatever works is best!

    I hope you will have time soon for new photos. She is sure cute!

  3. yay Maddy's home!! so happy for all of you.
    much love,