Struggletown

9 Jan

It has not been an easy few days. Unfortunately our smiling cheery Tilda has become a little bit miserable. Which in turn makes us pretty miserable. It is difficult because she can’t tell us what the problem is. All we know is that there has been a lot of whimpering and general unhappiness. She has also stopped eating orally altogether which wasn’t the plan at all. The tube feeding only makes up half the calories that she needs each day so we are finding ourselves back where we started, with her not actually getting enough food.

We ended up in the emergency room last night. Matilda hasn’t been herself since we got discharged on Thursday and after her lunchtime feed yesterday (at about 3, my timings are completely out of whack), she was in a lot of distress and very upset. Thankfully it was the day the nice nurses from Hospital at Home come to visit. She recommended that we take her into emergency just to get her checked out.

Of course, as soon as we got in the car, Matilda perked up considerably and by the time we got to the hospital, you wouldn’t have known that she was ever miserable. Little bugger.

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We were promptly sent home only to give her dinner which prompted more whimpering. Another call to the wonderful nurses who were a bit baffled by this stage. The advice was to dilute the formula with some water, give her some panadol and talk to the dietician in the morning.

Who was also a bit baffled. We have tried and will continue to try a few different things to see if there is improvement but I tell you, I am very close to pulling the tube out myself. I will be in touch with our paediatrician tomorrow to find out when this PEG surgery will be and try and push for an earlier date.

I would like to say a huge thank you to my very lovely family who have been a wonderful support. Thank god for them and for all the people who have sent through kind messages of support over the last few days.

Onwards and upwards!

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8 Responses to “Struggletown”

  1. Kym January 9, 2012 at 10:45 pm #

    kids always seem to do that, just when the specialist come close in the emergency ward, the colour returns to the facial areas and laughter is on the menu!!!! good luck over the next few feeds

  2. Jennie January 10, 2012 at 6:41 am #

    Hope you get the PEG surgery soon Laura!

    What a great job you are doing with all these complications and technical stuff. Hang in there

    xxooo Jennie

  3. jackie January 10, 2012 at 7:04 am #

    That happened to me once. Emma had croup and she was really struggling at home, it was 2:30 in the morning and as soon as we got to the childrens she was running around on the playground. What is with that? Hang in there Laura, I can only imagine how frustrated you must be and sad to see Matilda so distressed and miserable. Hopefully the PEG surgery is not far away. Thank god for the wonderful nurses who seem to be a great support for you guys! Thinking of you xx

  4. Margaret Black January 10, 2012 at 7:24 am #

    Thinking of you both this week struggling with the feeding. Do hope things settle down quickly and Matilda feels brighter.
    Lots of love Bill and Margaret

  5. Helen F January 10, 2012 at 9:31 am #

    I hope it all gets easier soon, you are doing an amazing job getting your head around all the technical stuff (I can’t even work an Outlook calendar). You have such persistance and determination despite what must be a really frustrating situation. I hope Tilda feels more comfortable ASAP and that you guys are getting lots of love and support too.
    xxx

  6. Daryl Linnane January 10, 2012 at 9:50 am #

    Thinking of you both Laura. Obviously its very tough going for you and Simon at present . Made even more distressing when Tilda herself is not happy. Hopefully with the help of the nurses ( plus the paediatrician ? ) it will get sorted SOON and life and holidays can return to some normality and enjoyment for you. Meantime hang in there !! I’m sure you are doing a great job through all of this in spite of all the hiccups and frustrations ! Love Daryl

  7. Kylie January 10, 2012 at 12:28 pm #

    I hope that tube starts doing what it’s supposed to be doing…..cross fingers xxx

  8. Benita crocker January 12, 2012 at 11:59 am #

    Hello Lovely, Well the rollercoaster continues – I thought the holidays were meant to be relaxing!! I hope that things settle down soon – how amazing are Nurses? Why is it that footballers get so much and Nurses have to go on strike to get reasonable conditions?? Anyway, all our love and best wishes shooting through the Universe to you, Simon and Matilda xoxoxo

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