Saturday, January 7, 2012

More ups and downs...

Its Saturday night now, here in Graz. I haven't posted anything on the blog for a few days as we've had to stay in at the hospital last night. Thursday Max's PEG fell out of his tummy, I had to hold him down and push it back in as soon as possible, as the hole in his tummy can completely close over with in 3 hours. We tried to distract him but this has happened many times in the past so he knew what I had to do and he put up a fight. The more he cries and fights the harder it is for me to push it back in as his tummy muscles clench. I forced it in then cuddled him and tried not to cry myself. We put him to bed and started his night tube feed. He's now down to just 500ml during the night and nothing at all during the day.
Friday morning he woke at 8am and when we got him up there was the PEG, out again and in his bed. It had come out again at some stage during the night. I looked at his tummy and sure enough the hole had closed over! We were in a panic of what to do, as he is still not eating and is currently relying on the small amount he gets overnight to sustain him. We jumped in a taxi and got him to the hospital asap. It was a public holiday here in Graz on Friday, we had no programs scheduled that day except for the play picninc at 12pm, one of the medical team was kind enough to give up her holiday to come in for. We spoke to the doctors in emergency called the professors in charge of the tube wean program and they said they would come in at 12pm to observe Max in the play picnic and make a decision as to whether Max needs go into surgery to have it put back in or to leave it out and he just will have to start eating now! We were very anxious, as although we know we are here for Max to eat, he isn't yet!
During the play picnic Max was better, he drank some water from a cup and bottle and was happy to play with and touch the food, he put a few things to his mouth: a suck of some chocolate and he tasted some spaghetti bol. He didn't actually eat anything really, but it is progress. The professors met with Steve and I afterwards and said they are confident he will eat but he's not ready to be off all tube feeds just yet. They called a surgeon up to look at his tummy. The surgeon said he may be able to break through the first layer of Max's skin to re-insert a small tube. They gave him a local anesthetic, 3 men held him down and the surgeon broke through his skin and has put a temporary, long, thin NGT tube in where his PEG was, so we can still tube feed him at night. The hole was too closed over to get a PEG in. It was awful and heartbreaking to watch. Max was screaming and almost made himself sick crying. I picked him up and just hugged him as soon as it was over, again trying not to cry myself. They then suggested we stay overnight in case it came out again.
Steve and I were both able to stay with him, so he now has a long tube hanging out of his tummy with a plug on the end of it. We have to tuck it into his pants to stop it dragging or catching on anything. This will stay in his tummy until Max is eating and drinking enough to sustain him and is off all tube feeds. God I hope its soon!
We stayed overnight without any problems, Thank God! Max slept well through the night and had his 500ml through the new tube. Steve and I did not sleep so well. We just wish we could explain to him that eating is not scary, its actually great and if he'd just eat we can all go home! So we woke at the hospital this morning and went to the play picnic as normal. My parents also came along to learn and observe how we need to be with Max and food. Mum came into the play picnic room with Max and I and Dad and Steve watched from behind a glass, tinted window. Again Max drank some water, but he wont try anything else to drink. We also played a game with the kids where we actually put a little yoghurt in their mouths whilst engaged in play. This is not something we can do often as the goal is for the kids to take and want the food themselves. Max resisted but didn't cry or run away and he did swallow a bit. A small success.
After the picnic the 3 families went out for lunch to a local Austrian Pub. We ate and chatted and the kids sat in highchairs with bits of food on their trays. Max sucked on a bit of chicken and a chip. We've been taught that involving the kids in meal times, seeing us eat and these food/social type situations is important, but we have to remember to make no big deal or pay any attention to when and if they do try food. It was so hard to not say "Yey well done, eat more!"
We would have just looked like a normal group of friends out enjoying lunch, but all we were all really thinking was, "pls kids eat, eat and swallow and want more... is this ever going to happen?"
Tomorrow is Sunday so we don't go to the hospital at all. We are planning on going with my parents to see the famous clock tower in Graz and taking along a picnic lunch, and practice what we have learnt so far into a real life, fun, social situation. It will also be my parents last day in Graz as they are going on to Rome on Monday.
Max is definitely showing signs of hunger and is a lot quieter and less energetic than usual but he's not unhappy. He is aware that the machine feeds him at night and looks forward to bed time and smiles when he hears the machine beep. I also feel hes aware of whats going on and that we want him to eat. I guess this is why they say the younger they are the better and easier it is to wean a child. It feels like a waiting game to us, we're just waiting for him to make that break through. I just hope its soon, it has to be...


  1. Oh, Kirstie, my heart goes out to you. I have heard that tubies do learn that hunger satisfaction comes via tube. I've heard of toddlers who lift up their shirts when they're hungry to get their tube feed. It's a powerful lesson, and these kids who are going through tube weans have to totally learn something different--something that babies normally learn in the first couple of months of life--that hunger satisfaction is supposed to be via the mouth. He just doesn't get that yet--but he will.
    It's great that he drinks water. Has he always done that? Will they let you try food chaining--where you add just a tiny bit of juice to the water? Although, having said that, I bet that he'll make a breakthru soon and just go for it orally.
    Hang in there mama! You are doing awesome!

  2. wow, it is so hard.
    You know, the person that was the most helpful for us when we were there weaning was Eva. I strongly suggest that you spend some time with her. She is almost a magician. Our daughter would not have started to eat without her intervention.
    Much love and support to you.

  3. I agree with Shoshana. Eva was just amazing for us. She did so much for Tom and us.
    Amazing updates. Loving reading them.
    Keep it up!!!