Quick update

14 Jun

Thank you to everyone for your continued well wishes and good thoughts. After a slightly better afternoon and evening yesterday, unfortunately Tilda has had another couple of vomits overnight. All bile so at least she is getting some nutrition albeit a small amount, 400 ml from 4pm yesterday to now.

During the afternoon we saw a few of her doctors and her dietician and had come up with a new feeding regime to see us home. Clearly there is something happening within her stomach so instead of doing the three smaller feeds gastrically and then a longer slowly feed through the J tube, we will only be doing J tube feeds. As J tube feedings (straight into the intestine) have to go slowly, this means that she will have to be feeding for 18 hours a day. We did a plan where most of this would be overnight leaving her days free for her school activities, swimming etc.

It seemed like a good plan but the overnight vomits have now raised some concerns. The whole point of the J tube is to reduce the risk of her aspirating in her sleep. Clearly as she is still throwing up in the night, we either need a new plan or even better we need to figure out why she is vomiting and make it stop.

I haven’t seen any doctors yet today so will wait to see what they say when they make their rounds.

Happily, and inspiringly, Tilda continues to have a smile which makes it all far more bearable.

It is also a very good distraction from the upcoming procedure this afternoon which I have barely thought about. My beautiful sister will be looking after Tilda for us while we are there and then Simon will take his turn to stay here the night so I can go home and hopefully have a good rest.

I will update again with any further news.



7 Responses to “Quick update”

  1. JessB (Kate's friend) June 14, 2012 at 9:08 am #

    Oh gosh Laura, I’m thinking of you and Simon and beautiful Tilda so hard today, and just praying as hard as I can.

    • Nadia Packer June 14, 2012 at 12:44 pm #

      Glad to hear Tilda is still in good cheer and hope they work out what is going on real soon. thinking of you especially today. X x

  2. sonoffalcoon June 14, 2012 at 9:19 am #

    thinking of you today xxx all our love, Pippa, Andrew, lily and Ruby xxx

  3. Pete June 14, 2012 at 1:36 pm #

    good luck!

  4. Garry and Carole laird June 14, 2012 at 2:25 pm #

    Thinking of you all.

    Love Carole and Garry

  5. Stella F June 14, 2012 at 5:41 pm #

    Sending love to you all. Happy to hear about Tilda’s smiles as always xx

  6. Adam and cheryl June 27, 2012 at 11:37 pm #

    Was away and just reading back over your updates… Tough times, glad now to know she is better but really feel for you guys, glad you are strong enough to be the best parents ever for Tilda. Make the Tilda laugh go global I say

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