June 02, 2011

slow train coming

Despite the feeling that things are good, without the sad twinge of feeling 'this is as good as it gets', the continued onslaught of disturbed, stertorous breathing is hard to bear. Segev can breath well, without deficit to his oxygen level, only if his jaw is held up and forward, although occasionally even that isn't enough and his head needs to be held forward as well. But of course his head forward worsens his kyphosis which renders the long term use of this technique prohibitive.

His breathing continues to force air into his stomach at an alarming rate. Venting through his g-tube opening requires the use of several different techniques I have made work through trial and error, at least having several methods to fall back on when one isn't working. This venting has also become a chronic treatment, repeated close to twenty times a day. Often Segev's screaming from pain will not stop until I have successfully emptied out the contents of his stomach in a mug and finally the air explodes out through the feeding tube. On a daily basis one of the more successful techniques, to siphon off the food, as you might gasoline from a car, results in me receiving a mouthful of stomach contents due to that explosive pressure building up.

His complaints and crying have become more frequent from air but the reduced stomach acid due to medication has allowed the hole in his abdominal wall to heal enough that there is only leakage of food via the edges of the g-tube when he is screaming and writhing from the internal pressure.

Once again he has developed a new twist to his seizures. Now, when sufficiently far gone into a major seizure, that is, when it passes a certain threshold, the main seizure will stop and after that a seizure takes hold where he suddenly kicks out his legs and stiffens his whole body like a board. He then paritally relaxes for a few seconds and again it hits him, repeating until I give him diazepam. One major seizure, which when discharged and Segev turning blue from its severity and length, always finishes the electric maelstrom and puts him into a stupor. But now this completely different type of seizure, with its very unusual long pauses, has dovetailed onto the well known though thankfully rare major one.

His smaller seizures, which I have spoken of on several occassions, that normally number in excess of one hundred per day, have become significantly less. So there is this trade off. Or so it seems. His yawning seizures have increased, all the while his drug picture has remained stable. The weather? Hormones? Your guess is as good as mine.

Segev slightly filtered

But as I said in the opening sentence, things feel pretty good. This is because in general Segev is more conscious of his surroundings lately, more communicative (his only volume being, 'shout!') and as always, always is the case, the moment a pain has ceased, or he is picked up, or talked to, or hugged, or massaged he smiles happily. If only it were always that simple.


  1. Sending Segev a Mel special Hug ooooooooxxxxxxooooooxxxxxx and one for you too xxxoooxxx love Mel x

  2. Ah, that damned roller coaster again. So often the experience of some things get better, some things get worse. We, also, had a roller coaster with Adam and a host of respiratory issues lately which I blame on a reliance on mouth breathing, but who knows? Our experience, however, pales in comparison to your description. Always in our thoughts...it would be nice if the universe gifted us with a short month of simple stability.

  3. Thank you both. Phil, I hope to post a response to your last blog entry soon.

  4. I am happy to hear this update, however up and down it is. That photo of Segev is beautiful -- the light, the pale colors of the fabrics, his spirit glowing there.

  5. Thanks for the update and the lovely photo of Segev. ((())))

  6. I agree Elizabeth, it is a beautiful photo, sending you a special weekend hug ooooo xxx