But not a boring one, that’s for sure. Last post, I was at the end of my tether with all the professionals involved in Felix’s care. He was back to vomiting multiple times a day, eating next to nothing, his gastrostomy site was leaking and causing skin irritation and stress, and he had become completely tube dependent again. And nobody was really listening to me. Everyone seemed to be passing the buck. So I got a bit cross and complained to the community nurse (who really kicks ass) that I felt Felix was being side lined by his pediatrician, Dr Kn who never seemed to have any good ideas, always agreed with us but never actually did anything. The nurse did some asking around people with more experience of leaking gastrostomy sites and was advised that the best thing to do would be to take it out for couple of hours to allow the tunnel to narrow then to put the button back in. As it would be stressful for Felix and nerve racking for us to do (what if it closed up a lot and we could not get it back in?) it would be best to do it in the hospital environment and to combine it with a dietician appraisal of Felix’s diet history both oral and tube to see if we could get to the bottom of his vomiting. Great for the nurse for trying to sort it, but I did not fancy that much, as it had not yet been established what the cause of the leaking might be and the hospital dietician whose advice we would be getting had admitted herself at Felix’s last stay at Musgrove that she had no experience of blended diets. She had also got Shap to sign a paper absolving the hospital of any responsibility should Felix get food poisoning – this was despite the fact that he was also eating hospital food – and gave him some literature on how to feed a toddler. So I didn’t think that she would have much to bring to the party. I then spoke to the stoma nurse at GOSH to see what she thought and she said that taking it out for a bit could work, if that was the reason it was leaking in the first place, but there can be other reasons and she would like to see it before she would advise taking that step. She also suggested that we see the surgeon Mr K who did the gastrostomy along with the Ladds procedure back in 2009.
The next advice we sought was with Dr Sp, consultant pediatric gastroenterologist at Bristol Childrens hospital. We had only seen her once when we first moved here from London. A lot had happened since then. She flagged up a new possible reason why Felix was saying that most food tasted ‘yucky’. Aparently the group of medications called Ace Inhibitors used to lower blood pressure can cause a metallic taste in the mouth. Felix is on a very small dose of Lisinopril once a day, but she said that could be enough to cause food to taste unpleasant. This seemed to make sense to me as his appetite for food seemed to drop off the cliff in a few weeks of starting this drug after his valve repair surgery in November last year. She also wondered if he actually needed the gastric meds since we (the parents) are convinced that a lot of the aversion is psychological and all wrapped up in the trauma of last year. She also commented that from what we were saying, Felix seems to rule the roost in our house and that the power dynamic had to change before we could wean successfully. We had to be in control, show him who is boss, make him eat etc.
I am not sure how the ‘show him who is boss’ approach would work with Felix, as the more you push the more he pushes back and we would just be in battle after battle. But we did trial the reduction and then removal of Domperidone and Ranitidine. Ranitidine was unnoticable, and easy. We had tried to get rid of Domperidone several times in the past when he was fully orally eating and it seemed that he did need it. This time however, apart from going from 3 poos to 1 poo a day there seems to be no difference. He was vomiting either way.
Next appointment was with Mr K, the general surgeon at GOSH. He reiterating what the community nurse had suggested, ie. taking out the button and letting it close up for a few hours, in the hope that it would close up a bit so the tunnel would be narrower and less fluid could come out. If that did not work, then the only option would be a new tunnel (and another general anaesthetic…) We said that we intended to wean him as he had been eating before the heart surgery and we are convinced that we could do it again. He said that we should wait until the school summer holidays when he was completely in our control and that as long as he was drinking, it should work out fine. The big problems were with children who did not drink, then weans were difficult and prone to failure. He said he was sure that it would work out fine. He is retiring this month and so it would be the last time we would see him. We both wished each other luck.
Then we saw the psychologist from the Compass team at Musgrove hospital. She specialises in treating children and families who are dealing with life limiting or life threatening illnesses. She has been supporting us since last November. She is the doctor who said that Felix was stuck in his trauma and had PTSD. She had proposed using a technique called Eye Movement Desensitisation and Reprocessing (EMDR) which though designed for adults was being used successfully now on children. I didn’t quite get what it would involve, but it seems to be a combination of remembering the trauma while receiving out ward stimuli of bilateral tapping and eye movements which then somehow diffuse the trauma of the memory. She felt that Felix had to get over his trauma before we could consider weaning him from tube feeds because she felt that without processing that properly, he would not have the space to cope.
Our regular check up with Dr S, Felix’s cardiologist was next. We had a lot to talk about as the last time we saw him, Felix was very distressed, and not doing very well. Dr S had said that there were no options left for Felix apart from a transplant since the heart function recovery had seemed to plateau and Felix’s body was not coping with the ejection fraction he was left with. At the time we did not know it, but I think he was in the early stages of pneumonia. It took another four weeks from then, for this to come to light, not least because as Felix’s condition got worse and worse, we thought that if we took him to hospital, we would then be starting the slide down to transplant, meaning a long hospital stay (possibly up to a year) while we waited for a heart. And so we thought that we would stick it out at home until we absolutely could not cope. As you know from previous posts, that moment came in early March when he was struggling to breathe. It turned out to be just pneumonia and within a few days of IV antibiotics at Musgrove hospital he was fine. A couple of days in GOSH and some tweaking of his heart meds and he just got better and better. Dr S could hardly believe the different child who trotted into his clinic in June, chatty and full of the joys. The echo showed what we could already see in his behaviour and his increase in energy levels and stamina: his heart function had improved since December.
I told Dr S about all the various professional opinions that we had received about how to solve his gastric issues and his tube dependency. He laughed and said they were probably all a bit right. But of course, his expertise is all cardiac and as far as he was concerned Felix is doing great in that department. I told him that I had been reading into the involvement of the Vagus nerve (one of the 12 main bunches of nerves that emerge from the brain into the body) in both gut and heart function and if he knew of any studies or research into the connection. He said that he didn’t and that Felix’s combination of defects is in fact very unusual – he is in his late 50’s and has never come across a child like Felix before. He said that they just don’t have all the answers, they are feeling their way too. He emphasies how difficult it is to predict anything with Felix.
And finally Markus. Shap was convinced that we could wean Felix on our own. I was convinced that we couldn’t do it without Markus. Dr Markus Wilken as any followers of this blog will know is a gifted clinical psychologist who travels the world weaning tube dependent children from their feeding tubes. He worked with us in November 2012 and got Felix eating within 4 days, having never swallowed food before. Speaking to him was like applying cool balm on sunburn. Everything he said made total sense. He said that of course Felix is the boss! We cannot change that! But we have to be his clever employers. We have to gently persuade him so that he eventually comes around to the decision to eat himself, we can’t tell him to eat. We need to make eating far more attractive than being tube fed. As for the vomiting, he said that the Vagus nerve is irritated by tube feeding, sending confused messages to the brain. I have spoken about this before. Food arrives in the stomach without all the preliminary indications of eating (smell, taste, chewing, release of enzymes) so it is not expecting the food and the brain becomes confused as to what to do. So it rejects the food. He said it does not happen for all tube fed children but for those that it does, it can be as little as 200ml a week or 2ltr a day and the child will still vomit. With Markus’s advice, Felix is now in school all day, including lunch (I had been picking him up to tube feed him at home then bringing him back in the afternoon). Though he is not eating it, he is getting in the groove of the social scene and is coping amazingly with the noise and the smells and the chaos. He has a 1:1 helper in school, but he is also starting to become more independent. He is enjoying himself, and making friends. He seems to be a hit particularly with the girls in his class who all want to mother him. He is by far the smallest in the school and wearing trousers for age 2 at the age of 5. Markus’s take on Felix and his trauma is that the most important thing is time and being well. The longer he feels well, the further the memory of the trauma will be from his every day thinking. The preparation work the phsychologist from the compass team had done had resulted in Felix running from the room screaming. Markus said when you have a wound you don’t want to keep picking it, and that the desire to eat will not be affected, as hunger can over ride anything. Not too sure about that as my own appetite is very affected by stress and emotions. I think with younger children hunger can be over ridden, but with Felix, we will have to wait and see. Anyway, we are going to leave EMDR on the side line for a few months, and see how Felix gets on without it first.
Tomorrow, school finishes for the summer and Markus arrives on the 7th of August to be with us again for a week to work intensively weaning Felix back to eating. Felix knows he is coming. When we talk about it, he says ‘Yes, I remember him, he took away my spitoon!’ I say ‘He did, and this time, he is coming to remind you how to eat’.
So, almost 2 years later, Felix is 5 and 5 months (he was 3 and 8 months last time Markus came), he is older and wiser and been through so much, I can hardly even contemplate it. He is almost back to 15kg which he last was in September 2012. We don’t know if his compromised heart function or new meds will have an affect on his appetite. We won’t know until we give him the chance to be an eater again.