I haven't been able to blog for a few days so need to catch up. Max has been giving us and his teddy us lots of drinks of water, as we do this in his speech sessions, so he decided to gave my laptop a drink of water! So my laptop has been playing up since.
Thursday 12th Jan day 11 of wean.
Max slept well all night, I was expecting him to wake a lot due to hunger but he must have been so tired he actually slept til 9am. We had a music therapy session scheduled at 9am at the hospital but we decided to let him sleep, he needed it. We got to the hospital at 10am, in time for OT with Ingrid.
Ingrid noticed Max was down and lacked energy. We told her the wean was really starting to affect him and hoped he'd eat more soon, enough to at least sustain him. He was busy playing, but you cold see everything was an extra effort for him. Ingrid gave him games and activities to play were he needed to kneel or bare his weight with his arms. As Max has had a PEG in his tummy since 6 months of age he has avoided any tummy time and relies on his leg strength too much. This had made his arms and tummy muscles weak, so we need to encourage a lot of floor play, crawling and kneeling.
Play picnic time and Max ate some custard with me spooning it in his mouth. He wasn't too keen so we used our new reward system of a sticker for each spoon. The medical staff were all impressed and Professor Dunitz said for us to stop the tube fees all together! He was only on 200ml over night, so not even a cup. She asked if we were OK with that and we said yes. I was really feeling a bit worried as he's only really taking a few teaspoons and drinking his calorie powdered water, but I thought we need to continue to trust in them and do as they say.
So last night, Thursday night Max took another few spoons of the custard and plenty of water and i put him to bed. He is so used to me hooking him up to his feeding machine at this time, but I didn't. After Steve read him a story we just walked out. After a few minutes he was calling out to us "Mummy Dadda!" We went in and he became very upset. He started to cry and wanted more water, so he had some and we walked out again. Soon he became absolutely hysterical! We both went in his room and asked him what was wrong but he just cried and cried and started throwing himself around the cot. We hadn't seen him like this before, we weren't sure if it was because the machine wasn't on or if he was just so hungry and feeling awful, or a combination of both. We offered him more custard and water but he screamed no threw the water bottle at us. I picked him up to cuddle him but he was absolutely inconsolable. I said to Steve 'maybe we should hook him up to his machine and just slowly feed him just 50ml, over an hour. His tube feeds have been dropped faster than the other boys considering he started on twice as much'. Steve said it was up to me. Not the answer I was looking for... I decided to do it just to see if it settled him a bit. I was thinking Id rather see him eating and drinking more before we stop the tube feed completely. I ended up giving him 100ml, justifying it to myself that its still less than the night before. As soon as the feed started he settled down and went to sleep. Was it just the fact that he knew the machine was on or did he feel the milk going into his tummy and it stopped the hunger pains? He slept well through the night.
|Me feeding Max at the play picnic|
|John and Max playing with food at the play picnic|
Its Friday the 13th Day 12 of wean. We started the day with Speech Therapy with Andrea. She is amazing, we had a great session today. She had a hand puppet dragon and was making it ask Max to feed it some crunchy teddy bear chips. Max happily put some chips in the dragons mouth and Andrea was getting the dragon to show Max how to bite and chew and swallow them. Max loved it and was fascinated watching the dragon crunch the chips in its mouth into lots of tiny pieces, swallow them then open his mouth again and the chips were gone. Andrea had cut a whole at the back of the puppets mouth and after crunching up the chips she's maneuver them to fall down the whole then down her sleeve, so they appeared to be swallowed and gone. Whilst Max was feeding the puppet he decided to put a chip in his own mouth! We were all a bit surprised, as he'd had no prompting and putting a chip in his mouth is a bit different to custard. He was biting and chewing on it and showing the dragon how he can bite too! I was holding my breath quietly waiting for him to start gagging and choking, but he didn't! He only took tiny bits and was very careful, but best of all he seemed to be enjoying it. Steve and I were giving each other a secret look of surprise, happy surprise! We remembered to not make a big deal of this in front of him. When he initiates eating and feeding himself we haven't learnt to act casual and make no fuss. We only give him comfort, reward and praise when he is eating because we want him to, not when he wants to. When he wants to eat,the food is the prize/reward.
|Max trying a chip with the dinosaur in speech. OMG!|
Next was a parent meeting. Only one parent attends and the other takes the child out for a walk or play. Steve attended last week so this week was my turn. We discussed our thoughts of the program and goals for next week. I confessed to tube feeding Max the night before, after they'd said to stop all Max's tube feeding. They said it was fine and the right thing to do if its how i felt. Phew! We agreed to keep Max on a small amount of tube feeds for now until he eats more in volume. I said I was worried about Max being so pale and he has red rims under his eyes. They ordered a blood test to be done straight away. We got the results within an hour. They said his blood sugar level was a bit too low so we need to give him 3x 100ml water with sugar flush through his PEG tube. The nurse gave me a syringe full of glucose water and I gave it to him straight away, it seemed to make him feel a bit better.
Play picnic time and all 3 boys ate something together at the picnic for the first time. One of the boys, Gregor has been eating since last week, he is eating up to 9 tubs of yoghurt a day! He's an absolute star! The other little boy John is drinking great volumes of juice but not really eating too much yet. The drinking is great though and as it is juice, not just water like Max, it is giving him the sugars he needs. Max ate a little more custard and drank his water and sucked on some chocolate. At home he tried chips again (I raced down to the shops to get some of the chips he'd tried in speech) and ate some more custard!
The 2 other families we are with are great. We are all going out to lunch again tomorrow after hospital. Then Sunday, our day off hospital, we are all going to take a trip to the Austrian Alps with the kids, and take a picnic.... of course!
|Max drinking from a bottle, this is huge as he's only ever before taken a sip from a cup.|
|Feeding Max at the play picnic|
|Max choosing a sticker for each spoonful he takes|