He refused to even taste the porridge I put on front of him at breakfast despite a whole night of less than half his feed. I added water to make a more runny consistency which encouraged him to touch and play and splash but no tastes. Was yesterday a fluke? He doesn’t seem interested in having any water. I’ve always known he only drinks when he’s clinically dehydrated and in need of IV fluids but I was hoping for a miracle. It’s only day two. His dad dropped him off and said he ate some wotsits. I’m full of questions. Did he actually swallow? Did you see him swallow? Did you film it? How many did he have? Was this before or after his reduced lunch? He says he sucked them down til they were barely there. Melt in the mouth so I guess he must have consumed some. He doesn’t know how many, just a few. I was eager to see it for myself.
He’s had his reduced lunch but I point to his chair that he eats in and he seems interested. I pop him in and add some pasta, crisps and also a blob of bbq sauce and a drop of all purpose seasoning. XXX has a blog on her experience tube weaning and though I hadn’t had time to read it she dropped me a message to advise on powders to taste like garlic etc so I used what I had in the cupboard making a note to do a shop tomorrow. He’s eager to lick the cheese crisps again. The school recommended having a small cup with him so I put the XXX one I brought on recommendations on the table. He had a sip with my assistance but then threw the contents all over himself and the floor. Maybe we’ll go back to his bottles that we’ve had the most success with and stick to that for now. Somehow we’ve lost them so I order some more *LINK*. He pointed at the cupboard, he always points at the cupboards as he likes opening and closing the doors. After a few times I go to the cupboard and open it. Is he pointing at the pringles? “These?” I ask, “YEAH” he says. Well okay then! He’s loving sour cream pringles and whilst he holds that in one hand and licks it to death he also explores the rest of the table licking those items too. He’s quite keen on the maple bacon pretzels left over from christmas too.
One thing I hadn’t expected doing this programme was more time. I was actually hesitant to start thinking ‘how am I going to fit in a feeding programme alongside our day to day life’. But actually, with reduced feeds and Jaxon needing me to leave him to try things on his own our feeding times have cut in half, it’s now taking 3 hours a day to feed him. We now have 3 extra hours a day. It’s ALOT. What is this witchcraft?
Total fluids consumed orally: 50mls
Total food consumed orally: Unknown. Tried cheesy puffs and pasta. Possibly consumed a wotsit or two.
Oh it’s mixed emotions over here today.
Here’s a glimpse at Instagram vs Reality. This evening I shared a video from this morning of me overjoyed as Jaxon drank water orally. We’re both revelling in happiness. What you don’t see there, or read in the caption, is the overwhelm of emotion that hit today. I didn’t share it because I wanted to hold on to the mornings excitement, I didn’t want to brush it off, I wanted to relive it.
I went on a food shop and whilst I was excited to go and buy finger foods and items to explore different tastes with Jaxon, it isn’t something I haven’t done before that was followed by disappointment and it all went to waste. So though I’m excited and hopeful, I’m also anxious and scared of feelings that will come if it doesn’t work out.
Last night with the feed reduction I was able to provide Jaxons entire intake by pump before midnight which meant for the first time ever we had from midnight until 7 am tube free which also equated to vomit free and nappy change free. On a typical day I have to wake Jaxon up at 6/7am in order to start his feeding regime, it can put him in a really bad mood. Today I was able to let him sleep until he was ready. He woke up at 8am and without so much to squeeze in it was super relaxed and stress free. But then we sat there with food and again, he licked it all with no swallows and I thought, if this doesn’t work soon he’s going to lose more weight and if he loses more weight we’re going to have to go back to the old plan and that though of going backwards just hurt my heart. To have a taste of what life could and should be. To experience for just a moment the benefits of being tube free is as if stepping out into fresh air. To go backwards would be like chaining us both back up to a wall. I can’t explain it. Of course I’ve known his care plan is absurd and exhausting and that’s why I’ve fought hard for carers for both of our wellbeing. But I’m starting to think I didn’t even realise how hard it was myself. Stepping out of the picture and seeing how the other half live is awakening. Logically I knew it would be easier but I didn’t know the extent. To give it me and take it away would be brutal. So I’m scared. I’m scared of it not working.
We have Jaxons bloods tomorrow. His potassium was low at 2.6 on Friday before we started the programme. They let us go home as he was asymptotic on the basis we return this week to check again. What if they’re worse from tube weaning? The school asked me how often he has bloods and requested that I speak to his nephrologist to ask if it would be appropriate to do them twice as often whilst on the programme. I appreciate them acknowledging the importance, it’s reassuring.
I took his weight this evening. The programme requires a daily weight so I’m so glad I worked with FitTrack earlier this year sharing their scaled I’ve been using to keep tabs on Jaxon. I genuinely love the product, it links to an app via Bluetooth so that we can have our own profiles where there’s a record of our weigh ins. It has an infant feature which allows me to stand on the scales and then stand on them with Jaxon and it calculates the difference and stores his weight. It’s been a godsend. When we started the programme on Saturday he was 9.1kg. He was still 9.1kg yesterday. Today however, 8,6kg. Thats half a kilo gone. Usually when it’s that quickly it’s dehydration so I’m anxious and eager for blood results tomorrow. I’m also wondering what NoTube will say about it. Will they increase his intake again? Will we go backwards within the first week? Will they continue as we are? Will he lose more weight? Will he gain it back? Is it going to go up and down?
Total fluids consumed orally: 350mls
Total food consumed orally: Unknown. Tasted crackerbread.
9kg again today. Thank God. he had no interest in breakfast again which was surprising as its the longest time he has ever gone without food, I would have thought this would be the meal he’s interested in. He spent the afternoon with a carer who reported back that part of a fish finger went missing. Surely he’s thrown it? Under his chair? Down the sides of his chair? Hidden somewhere surely? He can’t have eaten it?! Seriously doubtful but secretly hopeful. The difficult part about this is that if you sit with or watch Jaxon during the mealtime he will just throw items and want to play, so in order for him to explore the foods you have to leave him alone which makes it difficult to know exactly what he’s doing. I tend to tidy around the kitchen and eye him up in the corner of my eye when he’s distracted by the food. I was growing a little concerned he hadn’t opened his bowels in over a day but after the questionable disappearing fish finger there was an explosive dirty nappy, is that a sign?! Dinner time I had to try with fingers naturally. He was definitely interested in them. I struggled again to keep track and once he’s broken it all down its really hard to know if he’s had any but I’m happy to have more than a pringle to work with! Also, his potassium was 2.6 on Friday (it should be 3.5-5.5 but it’s always low due to a condition called Bartters syndrome) we started this programme on Saturday and were eager to keep an eye on this but repeat bloods today show it’s gone up to 2.8 so we’re okay!
Total fluids consumed orally: 75mls
Total food consumed orally: Unknown. Possibly fish?!
Mcdonaldssssssssss. With fish finger success and me running late I suddenly realised I was able to have SUCH an ordinary experience of getting Jaxon a happy meal. The normality of it. The ease. The convenience. The beauty. My child chewed, licked, bit every inch of that happy meal and I was the happiest mum in the world.
Today I found a new battle – Jaxon wants to squeeze the water bottle himself which both chokes him as it fires to the back of his throat and results in and open mouth spurting it all back out and me having no idea how much he’s consumed. Yay.
As it turned midnight and I disconnected his feed I realised another benefit – not being connected to the tube overnight. What does that mean? It means no bruises on his body from laying on plastic connected to the tube. It means no tube connected and pulling on a sore hold in his stomach that holds his button (that the tube connects too). It means reduced risk of vomiting and aspiration. It means less that 6 wet nappies a night. It’s better for his skin, his sleep and general wellbeing. So grateful to be experiencing this.
8.7kg today. I went to bed and rewatched the videos of him eating with tears in my eyes, a full heart and a very busy brain.
Total fluids consumed orally: 225mls
Total food consumed orally: Unknown. Tastes of fries and fish fingers!
Jaxon didn’t wake until 8am, I am loving the sleep he’s getting out of this! He did still have an overfilled leaked nappy requiring a bedding change but I’m not surprised as he still has quite a large volume input just before midnight so hopefully if I can get him to drink more in the day this will reduce over time.
Breakfast does tend to be quite disappointing, I always expect the most at this time as it’s when he’s had the least so I would expect hunger but he seems the least interested. It did pick up and he actually sat in his chair for 2 hours playing with food whilst watching Ben and Holly, licking lots of items. He seems to like Bertolli on crackerbread and he is experimenting by biting bits off but he does spit them out or pull them out with his other hand. That being said he drank 200mls between 8am and 10am! Absolutely incredible. I think he drinks the most whilst he’s eating to refresh or clean his taste buds maybe? I like this because I hope it encourages swallowing.
His amazing intake of water made me curious and I poured my cooled tea into another clear bottle. He drank some without looking and then signed ‘finished’. It was clear he noticed the difference but I don’t think he was keen as he refused any more. I had been cautious to try new flavours in his water because I have noticed before that if he’s comfortable with something and then I change it, he will then refuse what he was originally comfortable with as if he has lost trust. This made me reluctant to try anything else until he was confident and consistent with water so his large intake gave me a little confidence. I think the clear bottles help too as when he didn’t appear to like it I showed him the brown liquid through the bottle and said ‘tea’ before picking up the other transparent container with water and said ‘water’ to try and be clear there was a difference. He continued to sip water and later I added a third bottle with some blackcurrent cordial, I deliberately didn’t chose orange cordial as the slight acidity may be too connected to his vomiting history.
Speaking of vomiting. This is a record. 6 days and no vomit for the first time in his life. I don’t think he’s ever gone more than 2 days without being sick. How amazing is this.
I spoke too soon. Jaxon spent lunch with a carer and she shouted up to me that he likes chocolate! She had given him some of her chocolate muffin and he couldn’t get enough! His face was covered, his hands were covered and he kept pointing at it saying ‘gogla’ (it’s very difficult to try and type/spell a baby babble!). It instantly made me think of milk. Chocolate cake and milk! So I cleaned out the tea bottle and popped in some cows milk from the fridge. I haven’t been paying attention to allergies because I’ve never been certain about them, he’s never broken out in a rash or showed any signs of a reaction other than vomiting which could be for a number of other reasons and with him only having small tastes I thought we would start a fresh slate. Jaxons feeds had been halved but due to how long he wanted to enjoy playing with breakfast and an hour rule for time between oral and tube I thought it better to give his breakfast and lunch feed as one a little later than normal. As they were both halved it worked out to be what he normally had anyway. About half an hour later, vomit. Was it the milk? Was it the volume? Was it the fact he was trying to go for a number 2 (he has hypotonia, low muscle tone, so when he squeezes it can often push on his stomach and with reflux it ends up making him sick)? Would this put him of eating and drinking again?
I worried. Obviously. He’s spent most of the day naked and you can see his rib cage and spine and his size 3 nappy falling off him. But to try and find the silver lining I looked at the vomit and saw little bits, HE HAS BEEN SWALLOWING. Take the positive. Take the positive. Take the positive.
I had messaged the feeding programme portal earlier in the day asking if there was flexibility to let him drink in the day and tube his fluids at night due to him taking quite a long time to drink orally but then going off it after a tube water and they said that’ll be fine so I imagine we’ll do a rejuggle. I had also asked about further reductions as they mentioned it fairly early on and they sent me a new plan but I think we’ll maybe stay on this plan for a few more days and keep and eye on his weight.
A fabulous doctor we’ve recently met on a renal ward who had taken Jaxons bloods twice in the past 7 days and got a vein straight away both times with minimal stress to Jaxon (and therefore a saint!) called to let me know his potassium is really good at 3.2 but his urea is slightly raised. This indicates dehydration which really isn’t surprising with Jaxons condition and the fluid reductions. I really need to get him drinking more.
Total fluids consumed orally: 400mls
Total food consumed orally: Unknown. A good go at chocolate sponge cake!
Friday. Last night he screamed and cried and was awake until 11pm reminding me that he’s been staying up later at night all week. I wanted to believe it was NYE that did it but I’m pretty sure its hunger. The programme don’t want him hungry so if he’s irritable they encourage a feed as he won’t engage whilst too hungry. At night he’s just not settling but in the morning he really doesn’t want to wake up or touch his breakfast. Oh what a rollercoaser. Positive feedback from lunch with his carer that he ate a small amount of bread and licked off butter and chocolate spread. Refused to touch dinner though and I had to go out and buy smaller nappies which sunk my heart a little as the current ones fall off. It’s 6pm which is normally the end of mealtimes but he’s happy in his chair and still exploring foods. This is why we don’t end up going to bed until later than usual which i’m sure isn’t helping but I just can’t take him away from food when he shows interest even if its not consumed. Okay he just threw the bowl, never mind, bath time it is.
Total fluids consumed orally: 350mls
Total food consumed orally: unknown. Licks of butter and chocolate spread. Chocolate sponge cake.
So overall we’ve reduced feeds and fluids, he has responded AMAZINGLY in the first week by showing more interest than ever, co operation, great communication and actually had lots of little swallows of foods and unpredictable high and low intake of water orally. However, he has as expected lost weight and become dehydrated. This means that we’re in no mans land. Jaxon now has to go further than ever before and start consuming food and drinking more. The progress he’s made has been incredible but it won’t keep him alive so without him taking it to the next level he’s going to lose weight and become more dehydrated and the programme will have to stop. There’s a chance he’ll lose too much weight, become too dehydrated and Austria will revert back to his old plan short term until he regains and we can try again but I’m not sure. Who knows. We’re all just spectators willing him on and hoping for the best.