It’s as if every time I post something I jinx things! It has been a not so Happy New Year to the Brennan family so far as I am writing on day 10 of Finn’s latest hospital admission to the Royal Free and we’re not going home any time soon. My husband and I are like passing ships, we each taking turns to go home and have a full night’s sleep in our own bed, take home the dirty washing and bring in clean clothes- a fridge full of reheatable food delivered to our doorstep by doting family members. Finn came down again with a virus from Boxing Day and spent the subsequent almost two weeks not able to keep anything down. On the surface, it’s disconcerting, Finn looks completely fine. He’s confident, energetic, the sweetest little boy who loves his new play kitchen, his push along Peter Rabbit and who likes to have clean shoes, ‘thoos’ as he calls them… and then all of a sudden he gets poorly, to the extent that to everyone else would be mild, as insignificant as your standard winter cough or cold but his symptoms just spiral completely out of control! We ended up in a situation again where Finn was surviving for a fortnight on around 200 calories a day; barely eating anything but then projectile vomiting everything which he did eat all throughout the day and then in his cot at night, we’re having to use disposable bed-wetting mats on his sheet to prevent the catastrophic 3am mess and strip him of all of his bed clothes, sometimes put him straight in the shower, heavy with sleep, screaming in discomfort and disorientation, head to toe in vomit- he’s borderline dehydrated, and is only able to consume a fifth of what he needs for growth and development and on informing the team, of course, we were instructed to take Finn straight to hospital.
So here we are again, ward 6 North of the Royal Free Hospital, luckily recently refurbished so we occupy prime NW3 real estate in a private hospital bedroom with an ensuite- it’s the little things! Finn as usual has had multiple checks in this admission, further bloods, an immunology referral and transfer to GOSH, more bloods, back again, a chest X-Ray, another Barium study, stool sample, NPA swab, and again, devastatingly he is completely nil-by-mouth. Every nappy is weighed so that his exact input and output can be calculated. He is now on 100% tube feeds as a drastic measure to rapidly treat his EOE and bring his symptoms under control by eliminating foods entirely from his diet. Finn’s PPI medication, Omeprazole, has also been tripled which treats both reflux and EOE, he’s now on 3mg per kilo over two doses a day in the hope that it will bring his esophagus (and his eosinophil count) into remission- some EOE is what’s called PPI responsive, we doubt that this will be the case for Finn but PPIs also have anti-inflammatory effects and with his diet now for a time being elemental, we have two potential methods that have the capacity and are likely to rapidly bring his EOE and reflux symptoms under control. He will now remain on this regime for a further 8 to 12 weeks before he will undergo yet another endoscopy under general anaesthesia to assess the state of his esophagus and take further biopsies to see if his eosinophil count has decreased- we can only watch and wait and hope in the interim that he gains weight, before the histology report from the endoscopy outlines our next steps.
It is so complex, a path so untrodden (or so varied from patient to patient) that the doctors do not know entirely with Finn (although we had the recent EOE diagnosis) what they are treating. He has left them stumped, not responding to classic first line interventions, his case is very complex, constantly prompting further investigations which make us as parents feel that nobody really knows what they are doing, and question whether they are missing something catastrophic or whether they are in fact doing exactly right by him! This is now our fourth admission at the Royal Free Hospital for Failure to Thrive and upper respiratory infections. He is malnourished, that’s correct. He may have severe reflux, he does have EOE, EOE may have caused reflux, severe reflux may have contributed to the development of EOE or he may have both, and food intolerances and they exist on one, very aggressive continuum. This is all further complicated by the fact that Finn’s consultant has never diagnosed EOE in a child as young as Finn, he has now referred Finn to the Gastroenterology team at GOSH so that Finn’s care will now be under one roof. It is highly valuable for transparency of test results, ease of communication between departments, and also continuity for us as Finn’s parents to not be bouncing back and forth between hospitals, departments and doctors. We want the best, the very best for Finn and we will continue to strive to get it!
EOE is a new disease, the doctors are making decisions based on trial and error, just as much as we are- they don’t know if he’ll have it for life, if he’ll be symptomatic for years or if at some point with Finn- he’ll just grow out of the majority of all this, and we’ll visit the ward when he’s ten years old and look back and say, ‘what a nightmare that all was!’
Danny has had to take some more time out from work; currently Finn is attached to a feeding pump 14 out of 24 hours a day, we are allowed out for walks but our day to day revolves around an opportunity to see doctors, probe and discuss his progress over the last 24 hours, assess Finn’s latest condition. Blessed as I am to be Finn’s mother, it is my duty to remain informed, entirely, with his medical care so much so that in my spare time I read medical journals constantly so that I am equipped with the knowledge to ask the doctors the right questions, so that I understand their rationale when it comes to treatment decisions, methods tried, review dosing of key medications, consider symptoms that perhaps they themselves may have overlooked. It is both empowering, and a curse. I feel empowered that I can engage in intellectual discussion regarding the ongoing decision making around Finn’s next steps, but it’s a curse in the form of a mental prison- inescapable, bordering on the obsessive where I read to the point that I cannot let go, and just be myself, be Finn’s Mum, and be Harriet- the person I thought I was before all of this happened. It’s enough to destroy you, this inability to let go and so I have come to realise that in my spare moments it is also of paramount importance to look after myself, and focus on my health in body and mind for this situation to be remotely sustainable- because we don’t know what’s going to happen, or when it’s ever going to end and it is an important skill to be able to switch off and relinquish control. Although living in hospital, we have had such a lovely weekend and seen so many family members and friends. When we have our darker days, it’s as if the world is closing in- like a suffocating heavy fabric draped over us- we’re fighting and fighting and it’s thick and impermeable and we can’t get out to the top to breathe. I had a day like that just this past Tuesday, but then when things become a little more stable, you see your friends, see your family, exercise, cuddle your dog, nourish your body and soul- read magazines, read books, watch Netflix, message friends on WhatsApp because you so, so need to be human and luxuriate in the ordinary!
For now, in our breaks we’ll go to the playground at the bottom of Willow Road, have an escapist glass of red at The Freemasons’ Arms- walk on the Heath, our finger tips freezing in the bitter January chill as passersby remark on Finn’s sweet backpack. Covered in little rockets, monogrammed and twee, unbeknown to them it holds his amino acid formula in a bottle, inside a feed pump runs, a tube connects to his tummy under his coat to nourish his tiny, fighting little body. Mud on his little shoes, his blonde hair blowing in the wind- he’s a little space man, a jet pack on his back traversing galaxies unexplored. You might expect me to say that I wouldn’t change it for a second, but I absolutely would- I’d give anything to take away just a single hour of the pain he has had to go through, because however hard this journey has been for us, I never expected life to be so hard for him, and so for now we carry on because every day Finn wakes up with a smile, radiating warmth and gives us all the courage to try to do the same.