Wednesday, November 24, 2010

101st post - The News I was Wanting for my 100th Post ;)

Yesterday Maddy had her CT scan. It went really well, apart from her being a bit cranky that the nurses were making her fast a meal. She was sedated for the procedure and so she was really sleepy the entire day after that. When I went to see her in the afternoon, she was conked out like this:

I wasn't expecting to get the results back from the CT scan for another few days to a week - I remember waiting forever last time! But someone must have been working hard because they already had the results back today!!

Overall, the results were quite good. In this CT scan, they focused on the "problem area" around the larynx, and so they got a lot more information this time. It appears to confirm that she does have a bit of laryngomalacia where the cartilage around the larynx area is still quite soft and floppy, collapsing slightly when she breaths in. When she is inhaling, the diameter at this point is around 2.1mm (up from 1.9mm when she was three weeks old) - but when she breaths out, it is 5mm across. This is a very common problem with diastrophic dysplasia and it generally doesn't need any treatment, it will improve with time.

The pediatrician is happy for Maddy to go home as she is - he said she could be home within ONE TO TWO WEEKS!! But the rest of the multidisciplinary team need to agree with that in order for her to go home. This would include the ENT, the pulminologist, the anesthetist and the orthopedic doctors (and maybe others, I can't remember who else is in that team). They will meet on Monday to discuss and we should have a definite answer by Monday afternoon!!!!

Part of me is a bit frustrated by this, because it confirms what my opinion was all along, and also she will most likely not need anything done to "fix" this problem, she will just grow out of it. If I look back retrospectively, Maddy probably could have and should have been home when she was a few weeks old. But I know that there's no changing the past - so I'm just happy that our little girl is strong and healthy and that the end is in sight!! She will be home soon :) :) :)

Maddy is still not taking all of her milk orally yet so she may need to go home with the NG tube still in. I will need to learn how to insert it correctly, how to check that it is in properly, and how to feed her with it. I asked the doctors if they can start teaching me that immediately - because I don't want for that to be the only thing keeping her in hospital. Tomorrow, hopefully they can start to teach me all that... Her oral feedings are getting better and better all the time though - and they are going to try and train her much more aggressively over the next week or two - so hopefully we won't even need to bother with the NG tube at home, but it doesn't hurt to learn just in case :) 

I tell you, when Maddy finally does come home, there will have never been a mother more happy to bring her child home for the first time than me :) :)


  1. Happy to hear that she will be going home soon!!!

  2. What great news! I think that most of the time, us moms just "know" what is going on with our kids. I am glad you are correct, and I hope her airway continues to strengthen and grow as she does. I am relatively new to your blog, and I just have to tell you that your little girl is absolutely adorable!

  3. So happy for you all, Nicole!!!!

  4. Awesome news!!!!

  5. Oh, Nic... What lovely, lovely news!! I'm so excited and happy for you!

  6. Awesome! That's really some good Thanksgiving news! It will be nice to finally meet Maddy! We'll be praying.