Segev has begun to suffer from a new seizure since about ten days ago. I would classify this as a medium strength seizure because of its length. It is a whole body tonic seizure with intermittent forced exhalations. With so many factors of influence and the dosage of three anti epileptic drugs to consider, as well the ketogenic diet, it is doubtful i will be able to make much sense of this new seizure and thus influence it.
Over the last two months I have been trying to lower his body weight because quite simply, Segev was getting quite rotund. Not good at all for him and of course more difficult for me as well. For most kids the ketogenic diet actually functions as a natural growth attenuator; both weight and size are subnormal. Segev of course, requires being different. I decrease his caloric intake but he has actually gained two kilograms which points to the fact that he has grown. Still his clothes are less of a snug fit and as you can see in the photo's he looks good so I will keep this course steady.
Segev continues to mend from the exacerbation of the bronchiectasis which dove-tailed into the virus du jour which leads me to the following:
Something unique happened last night that occurred on one other occasion in the last eight years.
|©2010 Noa Fischer|
Last night, after I had successfully given Segev his evening meal through the PEG while he slept (never ideal, never a choice) and just before I was to put him to bed he began seizing. This was one of those trainwreck events; not only did he turn blue and threaten to bite off the end of his tongue but finally, finally when his body sank back into exhaustion, sputum spraying from his mouth, his legs decided to do an additional Vitus dance, gaining in strength until I literally felt fear well up inside me.
This may make the remarkable thing which happened last night appear rather logical to many. Now we must factor in that since I have been suffering from the dreaded cold/flu virus which seems to have claimed every single host on the planet already, leaving me for last. With an average body temperature of 35.5 C (I am part-reptilian) these are long drawn out affairs with me. And so after two nights in a row of not sleeping, maintaining my work schedule from lack of choice and while beginning my first 48 hour tenure of the week with Segev, last night between 01.00 and 07.00 I did not rise even one time to tend to him.
As I said there was only one other time this occurred. It's not even that I slept through the night, I have a chronic orthopedic problem which is a shoulder-neck-upper back trinity that causes enough pain to wake me. The roentgen image speaks volumes. But Segev, unusually dormant, rocked by his seizure, took the time to recover.
I see silver linings in the clouds and so it may seem that the rest did all of us good. It did. The problem resides with the fact that Segev, with not only no conscious control of his body per se, also possesses no structural body tone, the epitomy of the rag doll, so that his chest wall is also completely relaxed, severely diminishing his ability to breath and maintain the percussive effect of tonus allowing mucus to be brought up.
In short the accumulation of phlegm in Segev's lungs when he lies for so many hours is bad, quite bad and the morning is spent with extra long inhalation of medicinal substances and physiotherapy that requires simultaneously holding, supporting and treating Segev's heavy rag-doll of a body, all under a certain time constraint for his regular medications and ketogenic meal, which is prepared each time anew by me.
It is this intense accumulation of problems and logistic details that make his treatment so complicated. At the same time there remains all other elements to address: his stertorous breathing, the reddened skin, to the point of bleeding on occasion, surrounding his PEG, the cold legs and misaligned ribs, the perpetually dry lips and the abdominal pains from heavily scarred and neurologically impaired intestines and so on and so forth.
These last days, as much as I've been able to perceive through the haze of my own acute illness, has been on par: Segev fading in and out of consciousness. Complaining alternated by happiness, sleep alternated by sleep seizures, coughing alternated by more coughing and suctioning until finishing machine after machine.
Christmas is fast approaching for those that celebrate it. I actually considered the option of downplaying the event to the point of canceling since this period is so fraught with problems both of health with Segev and my mother as well as financial difficulties.
She is still not released from hospital due to severe pain and a certain, shall we say lack of fluent communication makes it impossible for me to help her. It being just myself and my three children, I felt even more that they may not be able to enjoy a moment of lightness having grumpy me as their Dad. But I realize that they are the three most important elements in my life and I want, no need, to share some good things with them and show that despite adversity we can still have a good time.
I rely heavily on my eldest for this as laughter is always guaranteed. His sense of humor ranges from the sublime to the infantile: Big Daddy Autism, as a connoisseur of potty humor gets the laughs but when your almost eighteen year old regularly and urgently announces his impending bowel movement with such descriptions as "I'm about to engage in 'shock and awe'", "I need some quality time", "the steamer calls me" or "don't go in there, ground zero" the mood is never heavy (no pun intended) for too long.
I've put my sincere wishes for this time of year for all to see on the page to the left. Originally my reaction to Bennie Waddel's post, is certainly what I feel towards many who have shown support as recent blog friends.