Blake's Story

This article delves into Blake's journey on Total Parenteral Nutrition and the views expressed are those from the patient's mom.

Reason for Total Parenteral Nutrition (TPN)

In May 2019 Blake contracted campylobacter jejuni and having been naso-gastric (NG) tube fed almost his whole life our world was turned upside down. Blake was 12 years old at the time and was admitted to hospital weighing 21kg. Bearing in mind Blake has 2 chromosome deletions and has been a wheelchair user all his life he was always of small build and so really couldn’t afford to lose much weight. Having tried various milks and methods of enabling Blake to tolerate his NG feed we were struggling despite the efforts at our local hospital and by December 2019 Blake was now only 16kg and failing in front of our eyes. His blood pressure was at one point 66/30, his body temperature at night was 35.8˚C, and he was sweating so much that his bedding had to be changed numerous times a day. Our boy was dying in front of our very eyes and he needed help.

The doctor looking after Blake at the time in our local hospital tried everything for Blake but she also knew it was time Blake was sent to Belfast and she prepared us for the journey ahead on total parenteral nutrition (TPN). In December 2019 Blake was transferred to the Royal Belfast Hospital For Sick Children where they discussed TPN with us, what it was, and the risks and benefits but more importantly for us the fact that it could save our son’s life.

The doctor confirmed that Blake had Intestinal Failure and as well as his bowel not working correctly, he was living in chronic pain due to part of his bowel being trapped between his liver and diaphragm.

Blake commenced TPN immediately and within 2 weeks of being prescribed it as part of his care we were seeing massive changes. Blake no longer needed a Bair Hugger to keep his body warm at night, his heart rate wasn’t as low and his blood pressure was more stable but also we could see a little person starting to shine through again and not just the shell of the person we knew

Experience with using TPN

Blake has been on TPN for four and a half years and whilst a lot of this time has been spent in and out of hospital we as Blake’s parents have been able to administer his TPN ourselves as we feel this is the safest way to access Blake’s line and reduce the risks of infection if less people are accessing it. Blake is currently on his 2nd broviac catheter in his first site and I feel this is testament to the level of training provided to us (plus mummy is a control freak so personally it would probably be easier to persuade me to give you my credit card details than allow you to access Blake’s line lol). Our training took on average 6-8 weeks by none other than our specialist gastro nurse. Words will never be enough for our team in Belfast as they have gone above and beyond for Blake and our family every step of the way. We were first introduced to Fresenius Kabi back in 2020 when all our supplies for home were delivered and we were welcomed into the TPN family with open arms. In over 4 years we have never been left without an ancillary; even if mummy has forgotten to order it, the Fresenius Kabi team have ensured that we get emergency supplies very quickly. In November 2023 we decided to take Blake on a trip of a lifetime to Boston (USA) and yes it took a lot of organising and preparations, but let’s just say I will most definitely do it again as we know we will have the support of Fresenius Kabi and the gastroenterology team in Belfast.

The best thing for me regarding the Fresenius Kabi homecare service is the attention to detail. Every time you ring if the person taking your call can't sort your issue then you can be assured your phone will ring back with the answers. Our wonderful specialist nurse at Royal Belfast Hospital has all the boxes ticked when it comes to Blake’s TPN and is always so on the ball. The reassurance for us is invaluable

People often ask us does TPN afect Blake’s quality of life when it comes to his hobbies and interests and I would be lying if I said it’s easy because no part of feeding your child into his broviac cathether is easy but with forward planning, good organisation and team work I will say nothing is impossible.

Blake follows the Belfast Giants ice hockey team and attends every home game. This takes a little more planning to make sure Blake is connected up before the games and off we go. We travel to the north coast of Northern Ireland and take all we need with us, and travel to mainland UK by boat and have our TPN and all our supplies loaded up.

I’d safely say we have become ‘pros’ at travelling with TPN and troubleshooting what can and will go wrong at times. As Blake is in a wheelchair it is essential that we have his TPN bag bungy strapped to his chair for travelling. This amongst other things we have learnt from experience as on 2 occasions Blake’s TPN has become tangled on the tie downs of the car and has dislodged the giving set from the bag. It's all about learning from our mistakes and moving forward. As long as Blake is safe and happy then we power on and get the very most out of life.

If I knew everything back in 2019 that I know now about TPN I certainly wouldn’t have feared it so much. One thing I would say to other families starting on this journey is to be organised. TPN won’t stand in your way - you just have to adjust life a little. Without TPN we wouldn’t have Blake with us so any amount of adjustments are acceptable and worth every single bit of work that goes into the training. We as a family cannot thank the gastroenterology team at Royal Belfast Hospital enough for the years of hard work put into Blake’s care. In my personal opinion, gastroenterology doctors and nurses, and the families of patients with intestinal failure are very much underestimated. These conditions are severe, and in my opinion, there is much more work that goes into the care of these patients compared to those with other medical conditions. If we can do one thing on this journey it will be to raise awareness of the role parenteral nutrition can play in a patient’s journey.

Job Code: IE-HPN-2400013

Date of preparation: October 2024