November 03, 2010


For those who come to this page solely for the tracheostomy information please try this site: Aaron's tracheostomy page !

I will be taking Segev on a trek to see a surgeon about doing a tracheotomy so that he can breath "without trouble" through a tube.
I cannot express enough how dire a state of mind this puts me in. For four years specialists have been warning me that Segev's airway could collapse. Despite the fact that I own several utility knives I don't want to find out how skilled I am at performing emergency tracheostomy.  

Segev's breathing is getting much worse and here I am referring to the upper airway and not his lungs though they are acting up more frequently.  It isn't only the noise, his breathing is laboured with a heavy rise and fall of his chest and even when he sleeps he is no longer quiet. Again, Segev has choking issues at night because of mucus plugs, despite inhalation therapy but here I am referring to noises and effort that he has begun to occasionally make also during his fitful nights.

Segev's last operation was in '06 for fitting the VNS device. They had trouble with him then even though it is an operation on par with fitting a pacemaker, in other words, fairly routine. When they allowed me to the recovery room I was ready to strangle people because I felt something was wrong. Segev was literally gasping for air, his head bent backwards terribly, the anesthesiologist and a male nurse standing looking at me with curious expressions. "Is he normally like this?"  "Yes of course, aren't you?"  He came out of the operation without the use of his vocal chords, "an odd coincidence".

The procedure for placing the breathing tube, percutaneous tracheostomy, is of itself not so frightening to me. General anesthesia for Segev is a big risk. Keeping Segev's head position aligned, his temperature up (it's been known to plummet to 35 C, hardly life threatening but makes for longer recovery and disturbs Segev's delicate balance) and the complications of having a snug fitting tube in the throat of a child whose seizures produce such feats of tonic strength that you would need the incredible hulk to bend his arm also trouble me. 
With his throat stiff as concrete from a seizure, dozens of times a day, I'm not certain the procedure will hold as the tube can move, become dislodged. Suction, which Segev needs up to 50 times a day, on demand, not per schedule, is another major concern since he needs to be able to bring up the phlegm with a cough. I'm also not certain the surgeon, though not a young man, will be the one to address my special concerns. 

So if any of you out there know of a child that has over one hundred seizures a day (or even just a few big ones) that has a trach let me benefit from any information you can share. I want to make a good decision here, one that I've been able to put off for four years but apparently can no longer.  All advice is welcome.


  1. I am thinking and thinking. How could we put out an APB with your question?

  2. I've received two detailed and reassuring mails so far, thank you. Only the parents who have to deal with this each day will really know what to look for. I've done my studying on the matter and armed with the right questions and my charming demeanor am ready for the meeting with surgeon.

  3. Wow Eric, I feel your concern. It is a big decision, for sure. I really hope everything works out for Segev. Have you met Andrea? Her daughter has a trach as well.

  4. I'm so sorry, Eric, that you have to make such decision. There were talks about a trach for Izzy when she was hospitalized with aspiration pneumonia (she was 2 months old), and the thought terrified me. I've got no advice or experience to share, but I'm thinking of you and Segev ( I know, not much help). And I'm confident that Segev is in the best possible hands with you.