Some weeks there appears to be a sense of accomplishment or at the very least that it was well spent in regards to helping Segev. This past week was not one of those. Despite doing the ultrasound and being able to arrange the meeting with the pulmonary chief physician on such short notice, which merely opens the door for far-off adventures of third opinions and another surgical consult, there was little going on besides the notification that the request for Segev's medical cannabis license was not approved.
Then there is the small issue of my back. Normally I wouldn't mention in any detail my own ailments but when the problem becomes a tithe on my son's care, I become quite frustrated. The last two nights were extra difficult with Segev because his breathing was especially bad, each night for a different reason. I had to raise my hands and accede to both the overwhelming discomfort in my back and the fact that I wasn't getting his saturation high enough, after I worked on his chest and back roughly every twenty minutes until 03.30. It took several minutes on 5 liters before his sats stabilized and he spent the remainder of the night on oxygen, then in the morning things settled down.
The second night he had a complete blockage episode. This is when there is no air incoming or outgoing and I am nearly struck down with terror as I grab hold of his heaving body violently contorting itself, fighting to breath but not succeeding. His throat then goes into spasm causing even more difficulty as it prevents me from changing the position of his jaw and leaves me to alternately compress his chest and beat on his back while still wrangling for a handhold on his jaw. Somehow, amongst the maelstrom of appendages and fear, things settle, his color returns and I'm not certain if my body is actually shaking or whether that's just a feeling. In the evening I had given him his regular inhalation therapy earlier than usual, which may have been a factor so in case I again feel he needs the earlier session I will be certain to add another one just prior to putting him in bed.
On Sunday I had lifted Segev's wheelchair as I always do, very carefully, into the van (without authorisation for an electrical lift this is what I have been doing for 8 years now) but something went wrong, though I didn't begin to feel it until the next day when I went to meet with the doctor and hustling through the corridor (after my dentist appointment) there was pain with every step. It wasn't a pinpoint pain but more like a matrix that activated different series of points depending on whether I put my left or right foot forward and was also dependent on the speed with which I was walking. Unfortunately I was not willing to shuffle through the hospital corridors holding my back with one or both of my hands, being too proud, in of all places, a hospital.
Sege'vs throat is less swollen so his acute breathing difficulties are subsiding incrementally while his medium sized seizures have increased two-fold. As most parents of children with severe epilepsy know, medications are akin to those carnival games where you have to throw a ring around the top of a bottle, usually watching the ring dance merrily, cling, cling until dropping in between the bottles. You try again because you believe somehow you will get it right, except that with the medication dance the consequences of a missed throw is your child having more, or more severe seizures. I am tossing rings and am beginning to wonder if I wouldn't have better results if I closed my eyes.