We opened presents and listened to music, We ate moderately. Segev was in and out of 'participating' but thankfully with no major seizures, for once he wasn't ill on a holyday, no crying from pain, just some mild discomfort and even his breathing was pretty good.
This morning though I was about to give him his last bolus of food when I eyed the mug suspiciously: no yellow floating blobs of oil. I normally count off the things I put in but had forgotten the oil.
Each of Segev's meals is prepared individually and then hand pumped slowly into his stomach through the PEG. Based on the principles of the ketogenic diet this diet has allowed Segev to paradoxically increase his body weight by 58% in one year, a much needed gain from the skin and bones that he was and helps to control his seizures just as well as any medication. Since Segev was already on three different medications simultaneously and had tried the VNS device, the ketogenic diet was the preferred possibility especially considering that two new drugs which look promising (though more dangerous than the diet) still need to be approved here locally.
In feeding Segev I cannot use an electrical feed pump because this would mean leaving the tube connected to his abdomen for extended periods of time. With Segev the strategy is 'stick and move', like some boxers use, since at any moment his arms begin flailing uncontrollably with the imminent danger of doing severe damage by getting caught on the feeding tube and pulling. Segev has immense strength for such a small quadraplegic, his build being similar to his older brother who's legs redefine the term 'tree trunks'.
So what does Segev eat? The ketogenic diet is based on changing the body's metabolism to use fat as exclusive energy source. In order to do this you have to all but eliminate carbohydrate, which the brain needs so much and limit protein to the bare minimum. There are variations in the diet as to the ratios of those three main components, it can be tricky finding the right one and by no means is it something you would call 'healthy' for the normal person to consume. Mostly vitamins and minerals are missing which may be added. I believe that food has a kind of life-force in it and that we function best when we consume fresh real food. I do supplement Segev with vitamin and mineral pills but won't compromise when it comes to using manufactured cans of liquid meal versus preparing his food myself. Maybe it's only psychological, to each his own.
So his meal consists of extra virgin olive oil, whole ground tahina, coconut milk, goat's milk and soy milk with a few grams of multigrain porridge. That's it, three times a day. Recently I've had to reduce his caloric intake to 1000 Kcal a day because his weight gain was getting preposterous. It doesn't seem like much, 1000 Kcal, but seeing as his physical movement is confined to seizures it turns out to be enough for now.
Tomorrow I will be taking Segev to see the surgeon who originally placed his g-tube and also performed the emergency bowel obstruction surgery that saw Segev die on the table more than once and ended with him in a different hospital on a respirator, clinging to life by a tattered thread.
This isn't about his breathing and the tracheotomy, although I may bring it up with him. Segev's PEG seems to be bothering him more and more; it would seem to me that his ribcage has descended more in relation to the position of the g-tube and is pressing on it. Segev's rib is very tender above the tube and really this surgeon is one of the more experienced so tomorrow will be 'adventure day' with Segev if he is in good enough shape to go out of the house. Tomorrow also happens to be my one free day of the week, where I have to try and fit in all errands, paperwork etc. giving me an excuse to procrastinate more than usual.