August 25, 2010

Flash flood

Have you ever experienced the terror of a flash flood in the desert? Segev has, in his lungs. Within the course of one hour he went from what is considered "fine" for him to deathly ill. 

It's true there was a prodrome, just like the rains in the desert should alert you. Last night several massive seizures. This morning again at 5 O'clock. I started his regular inhalation with 27% salt but usually am smarter than this. I know it matters, adding the two bronchodilaters an hour and a half late. 

Prevention, prevention. Prevention is what i preach and yet I managed to screw it up today. Prevention is the mother of all solutions.

He stopped responding, began seizing with small clonic spasms in his fingers, then hands. The classic sign with Segev. No sedative in the world can stop those. Even when he was in induced coma he had them. Now the arms and the blubbering sputtering phlegm and saliva in an endless stream. He won't stop until he's cleared most of the copious phlegm from his lungs. 

We can run down our regular checklist now:
Inhalations at maximum dosage every six hours, regular inhalations in between. Physiotherapy, tapotement, postural drainage, vibration every two hours. Massage with eucalyptus oil, every six hours. Suctioning of every cough with reaction time of under five seconds and regular suctioning roughly  twenty times per hour. All check.

For the fever, paracetamol; for his lungs, oreganol oil. Phlegm dilution, carbocisteine. Still trying to maintain the ketogenic diet with its strict hours and amounts, each meal prepared separately by me.  Don't forget: three regular AED's three times a day. All Check. Do everything alone because there is no one else in the house to help: check.

His 0₂ is under 90%, heart is over 150.

You might be asking yourself why no antibiotics? 
Segev has colonization of Klebsiella and Pseudomonas (and candida) which means it's always there just usually the strict lung hygiene program i run on him allows his immune system to keep it in check for up to a month at a time. I could give him antibiotics 365 days a year and it wouldn't help. Seven day courses are a joke, more harm than good. Ten days means Segev will scream from four in the afternoon until eleven thirty at night for eight days. Doesn't matter which antibiotics. Doesn't matter if i give him acidophilus as though he were Al Pacino in Scarface. 

Living inside Hospital is also not an option. That means 24 hour shifts. Being awake, treating him, keeping his very complex treatment schedule in a foreign environment, not being able to leave him for a second. The last time he was in PICU i stood by his bed and treated him for seventeen hours straight.

You can't suction him according to a hospital schedule, he needs it NOW. From the moment he coughs you have about five seconds before he swallows it or continues choking. He swallows the mucous and it sits in his stomach, not going anywhere. After a few days of being sick he can vomit five minutes after a meal (received through the g-tube) and the only thing that will come out is phlegm, no food whatsoever. So he swallows phlegm and it interferes with the absorption of his meds. Vicious circle. By the way he usually has an exacerbation  a few days after he has vomited food since it goes straight into his lungs. Reflux can also cause this due to the fact that the operation to prevent reflux, nissen fundoplication (full) released several years ago and he cannot survive another such operation.

So when he coughs or vomits you have five seconds to get off of your chair, jump over to him, grab the suction tube, find the switch and turn it on, open his mouth and move anything else out of the way and insert the tube, not too shallow, not too deep, into his mouth. I can tell from the sound in his mouth whether the phlegm is on the left or the right side, saves fishing around. I also hold records in the following event: going another room for some supplies or equipment and hearing Segev choke or cough and run back dash, 6 seconds.

His pulse is now down to 125 and O₂ is up to 95%. His hands are twitching less. Laboured breathing. Time to continue with Segev.


  1. Holy Shit. I pray I don't have to watch my daughter suffer as you watch your son. I feel incredible compassion for both of you. The only thing we can do is love our children and help them as best we can. My thoughts are with you.

  2. Camara, I certainly hope you don't but you take things one moment at a time, you try to enjoy and appreciate intensely certain things, as i know you do with Anaya. I knew that somehow we would make it this far and I know Segev still has a little ways to go. For me intuition is a guiding light and gives me strength. Knowing there are others out there who might benefit with practical advice motivates me to try and communicate and share like on the Facebook group. Working together people will be able to hold on gracefully for much longer.