November 03, 2011

It's a cherry, for those that like that sort of thing

If there was any doubt that Segev is somehow changing, from the drastic and sudden change in his sleeping pattern, to the return of more than two seizure types not seen for years, the days needed for a recovery which is only partial, yesterday was the cherry on top.

I went with Segev to see the ministry of health's committee on allocation of vehicle resources to get their help with an electric car lift for Segev. This also means changing Segev's minivan so that he can travel in his wheelchair, instead of a child's car seat which has been inappropriately small for several years now. Of course, you can't visit government offices whose purpose is to help severely mentally and physically compromised children without finding something to complain about: the waiting area to go in to see the committee is filled with families with their children in wheelchairs. I see a child whose condition approximates Segev although she is much younger and looks content. Everyone else is much less severe but still, severe. Feedings are going on, suctioning, noises, smells as you can well expect from a room full of so many people with 'special needs' kids. But why is the waiting area full you ask? Is there a delay because of the intricate nature of dealing with severely compromised children? Is there more than one committee operating in order to quickly and efficiently process all of the claims/issues? NO, the room is full because when the medically fragile children are required to be present at the ministry of health's special committee, you tell everyone to come at the same time so that it works on a first come first serve basis, meaning that the last person (us) has to wait for several hours for their turn! Goodbye physio treatment at the right time, inhalation therapy, hello complications, awkward feedings, rinsing equipment at the water cooler blah blah blah.

So now to the meat of the episode with Segev. All this time he is hooked up to the pulseoxymeter and I see that he is staring, his body slightly tense and his heart rate begins to drop from his normal of 105 to 72, setting off the alarm. First I think it's the meter as it is sensitive to perspiration and low battery. The battery is fully charged though and I check Segev's finger but find no sweat, reposition the probe on his other hand and voila! his pulse rate starts to climb back up. Climb, mind you not jump.  A few minutes later same thing happens with his pulse dropping to 75 which has simply never happened with Segev. It's now that i notice that he is in this mild staring seizure at the same time as the drop in pulse. I check his respiration which seems normal, take his pulse to check the accuracy of the measurement and rub his chest and hand vigorously to encourage his heart rate to go back up. It doesn't appear to be all that effective but after some thirty seconds his heart rate climbs back. This repeats itself five times. 

Obviously this is something that is cause for concern. It has never happened before that his heart rate takes a dip like that. What did happen on a regular basis in the past and only infrequently now is that his heart rate would jump from 105 to 130-160 for no apparent reason. I twice visited with a pediatric cardiologist who insisted this was a sign that his heart was healthy and that a lack of range in heart rate would be cause for worry. But of course he had no explanation and was not willing to pursue any course of investigation.
Another frightening condition in the past was paroxysmal hypothermia where Segev's body temperature would drop to 35 degrees centigrade. He was listless and unresponsive even to pain stimulus.

What can you do but ride these waves and ascertain that yes, water is wet? Segev is starting to get back into ketosis and so soon I'll be able to see whether that treatment is sufficient for the time being or that I have to start pulling my hair out.

For the moment his lungs have cleared up and though the only reaction he seems to have now to anything is yet another seizure, he isn't in any pain, which is definitely a blessing.

n.b. we got the authorization


  1. He knows how much he's loved - it gives him great strength.

  2. Wow. That hit home hard Marcelle. Beautiful and powerful sentence. Thank you.

  3. So happy that you got what you needed for Segev; sorry that the process is always such a pain in the ass...I echo Marcelle's belief!