Waiting…

Well, I’m sitting here in the parent’s retreat at the RCH, with my trusty Virgin 3G modem, doing a bit of work while I wait for Donna to finish expressing and for the boys and my folks to arrive. Their flight is due to land here at Melbourne in the next 5 minutes or so, but the flight tracker isn’t yet showing that it’s left Launceston, so I’m not sure if they’re going to be on time or not.

Alyssa seems to be doing well again today. She tried to have a little feed this morning, but they are transitioning her off the hourly feeds so she is not really very hungry right now. We hope by mid afternoon that she will be onto 3-hourly feeds, so will be hungry enough to try a feed before she has 60mls pushed down the nasogastric tube.

We spoke to Maureen, the dietitian, and she has arranged the continuous feed pump for us to take home, so we will learn how to use that in the next few days so we can feed her overnight. At this stage, it’s sounding like we will get to go home by the end of the week, which we are terrified about, yet at the same time keen to do.

We need to learn to cope with this as soon as we can outside of the safety of the hospital. The sooner we get home, the sooner we will be able to find our new “normal” – it’s not going to seem normal to many of our friends who have children, and we don’t expect that they will all necessarily understand what we are about to go through for the next 15 years of our lives, but it’s what we have to do to keep our little girl with us.

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5 responses to “Waiting…

  1. I think it will just be something you get used to. It could have been diabetes, epilepsy, autism, downs syndrome or one of a thousand fairly common conditions I guess. I keep thinking poor Alyssa but then I also think at least she can grow up to run, drive, bear children, go to university and pretty much everything normal people do. She’ll probably hate her condition and it will be a lot of hard work but thank the powers that be that she has a condition that could be diagnosed and managed so quickly despite how life threatening it is.

    I wish you guys all the luck in the world and I’m so happy you finally have the little girl you always wanted 🙂

  2. It’s funny, but we do feel lucky in a way if she indeed has “only” GSD 1a. There are a lot worse conditions both GSD and liver-related that it could have been.

    What she has is manageable, but the fact is that there is *no* margin for error, which some people find strange when all she has to do is eat.

    The average human can go about 3 days without water and almost 3 weeks without food – Alyssa can’t go 3 hours.

    It is going to require some lifestyle modifications for all of us, e.g. we’ve pretty much cancelled our plans to go away over summer with her because we’ll be too far from the medical help which we’re more likely to need in the early days.

    Next summer we will most likely be ready, but we’re not going to be in only a few weeks of managing this ourselves.

  3. I can only echo the platitudes of others when I say that I wish you ALL happiness in the future.

    While things will seem dark and frightening for some time to come we, as a species, are adaptable.

    You will learn what needs to be done and when. Once you reach that stage a some what normal life should be possible.

    All I can suggest is that you take everything one small step at a time, dont try to deal with everything as a whole as it will overwhelm you and cause you to struggle more than you need to.

    My best wishes to you and all of your family.

    Andrew.

  4. Natalie Polis

    Hi Donna and Warren,

    I have only just found Alyssa’s blog but have been following Donna’s comments on facebook.

    Can you tell me more about the condition? Why can she not go without food for more than three hours?

    Hoping you will be able to come home soon.

    Natalie

  5. Hi Natalie.

    We’ll explain the condition a bit more when we have a chance, but the basic story is that she needs to get all her glucose from each feed as she needs it, she can store energy as glycogen, but her liver can’t convert it back into glucose.

    Basically, 3 hours is the time it takes to use up all the glucose she gets from a feed, so if she doesn’t get another feed, she will suffer profound hypoglycaemia, which can result in seizures a coma, brain damage, or as we nearly found out the other week, death. 😦

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