September 07, 2011

The coffee was cold

This is not the episode I alluded to on the previous post 

With Segev it all happens at once; These are, I suppose, to be considered mini-crises because when you need to face them alone, they test your skills to the maximum since you worry about not being able to contain it so early in the morning and in the back of your mind are stuck certain details, like his blood sugar being a tad high (125) that morning, the relevance of which is not clear to you.

As the nebulizer mask  covers his mouth continuing to push some medication into his lungs, since Segev cannot actively inhale deeper, he begins to cry from pain. His arms begin to flail both hitting himself in the face since again, he has no control, as well as threatening to pull the mask into his eyes. One hand on flailing arms, the other reaching for the feeding tube and syringe since 99% of the time now when Segev cries from pain it is due to air accumulating in his stomach, which he cannot release himself in the form of a burp. Why it hurts him so much may have something to do with the nissen-fundoplication which released a few years ago.

After placing the tube on his Gastrostomy valve nothing happens. It is after all a one-way valve which should only allow food and liquid in. So I have to coax the air out, first by squeezing the tube. That didn't work so step two is to try and put liquid  through the tube. That didn't work either but finding myself in such situations on a daily basis I can resort to the most successful technique (for Segev), which is to siphon off by sucking on the open-ended syringe attached to the tube. 
This worked, as it often does, by spraying,  under high pressure, a fair amount of Segev's stomach contents into mouth and onto my face. I'm used to that, but since I had just given him his three anti-epileptic drugs, some of that was also ejected.  I know that it was medicine because it is quite a bit more bitter than the taste of Segev's stomach juices; I try to pay attention to these kinds of details.

During the explosion Segev's breathing remains troubling and I must also reassemble the padding under his neck collar in order to properly raise his chin so that he can breathe clearly.

The initial burst of air and meds though were just a teaser and since, still a little groggy from the usual lack of sleep at night, I hadn't twisted the feeding tube far enough into the button and the second wave of hydraulic pressurized stomach chyme pushed the tube free and sprayed the entire surrounding guaze pad, of which I had just placed a clean one, with requisite healing ointment for the gastrostomy hole. Fortunately this time none of the food had escaped around the g-tube which would have meant a major clean up since stomach acid and food all around an open wound is not pleasant (so I've been told).

While all this is happening, the inhalation machine still chugging away, the mask around Segev's neck, he starts to cough. So I must continue to hold the syringe and tube in one hand since I could not yet close the tube and there is medication inside of the open-ended syringe, while reaching for the slithering suction tube which, like a real snake, always finds itself in the most unusual of places, wrapped firmly around something, then freeing and activating it before the accumulated pressure of the phlegm in Segev's throat causes him to vomit. 
This is always a major concern when Segev coughs but especially so when yesterday he was once again ill, non-communicative and on oxygen for the better part of the day.

After the clean up everything returns to normal of course. After all, heating up one's coffee is as simple as pushing a button on the microwave. And after having had a few sips of coffee, after Segev had been loudly moaning and head rolling previously in bed, a sign he wants to get out, he sits in his wheelchair and slips into a little morning nap. He probably thinks to himself, "with my father always hovering over me at night, suctioning, treating, repositioning, changing my diaper, inhalation, who can sleep?"


  1. A lot of those complications you have described with Segev - I also experience with Royce. I am desperate for that first cup of coffee in the morning but it can be a long time coming. Then to see them so peaceful (as you say probably worn out) is a relief. It sometimes feels like you've done a whole days work before the day's even started. I've got the twitchy eye thing going on at the moment - usual cause sleep deprivation.

  2. ((()))

    Your guest post at Phil's was excellent.

  3. Wiped out my comment by accident, the universe must have thought I was whining and punished me. We are also in a mini-crisis...mucous accumulation in Adam's throat which doesn't clear with a half-hearted cough, percussing him in a prone position to bring it dripping out and then returns, he's moaning and gurgling hot...albuterol, symbicort is mildly helping, but he's miserable. So you keep working out the plague. I avoid doctors and hospital because they are cesspools of infection...I do not compare Adam's issues with the vastly more complex state of Segev's health. I re-read many of your old blogs last night, they inspire me when I am weary...they really inspire me. With my PTSD, congestion and wheezing and fever are catastrophic occurences...always imagining the worst. More albuterol for Adam and a valium for goes on. I admire you and your commitment to Segev.

  4. This is so much my life! I made coffee this morning and I didn't even get it poured in time. The coffee pot turned off and it was cold before I got to it.