June 12, 2013

When you can't come to the rescue

Taking care of my son in 48 hour shifts (it used to be more) is not only draining because he can never leave my sight and there are such a multitude of tasks to perform but especially so because the pauses in between, when I can sit with him idly, are short and irregular and thus do not allow for continuity of normal deed or thought.
No activity is started and finished at one go. If the dishes are to be done, a cough by Segev requires immediate action since allowing the unbelievable quantities of material expelled each and every cough to enter his stomach risks not only nausea but actually forms a hindrance for the absorption of his medications (and foodstuff) but also since each cough brings with it a significant chance that he will vomit if he has any air in his stomach. Considering that his stomach needs to be vented approximately every ¾ of an hour, the chances of vomiting are considerable, bringing with it the imminent danger of aspiration, and borne out by the frequency of actual episodes.
When writing there is that insidious sinking into deeper thought which then throws the schedule of medications, nebulizer treatments and scheduled meals into disarray, at best lengthening the day and at worst impacting Segev’s health in a significant manner. Cooking is always a special challenge and one learns to implement safety measures, such as wearing rubber gloves when cutting meat, so that when the inevitable call to do suction comes, they can be discarded in an instant and there is no danger of getting smeared hands on a suction tube going down his throat.
We develop so many little tricks as caregivers (even to the extent of tricking ourselves) in order to marginalize the infinite number of distractions and obstacles that otherwise would add greatly to the need for expending energy.

On Monday I traveled to Jerusalem, to Hadassah hospital to meet with an ENT surgeon. Some might recall that this meeting was booked three times previously and each time something intervened; one time the car broke down, another time Segev was ill with double pneumonia and the third time I missed the off-ramp due to a near accident and couldn’t make the appointment in time. After that third time I said, ‘well that is a kind of providence, isn’t it?’ apparently we are not supposed to meet with this man, I thought.
So naturally I did the only thing I do in such situations and booked another, fourth appointment. I decided I would go alone this time, as there was no real need to examine Segev, at least not yet. The trip down is about 1 ½ hours and I had left a bit late while the hospital is rather large, more akin to a small town so finding your way around takes some time. As well I could not find parking nearby (they have shuttle services but then I would be even more tardy) and the walk did not do my poor knee any good. As a matter of fact, after the drive I was positively limping.
Navigating the maze of hallways, stairs and elevators and registering, I waited for my turn having arrived nearly 30 minutes late. After another 30 minutes passed I asked if the surgeon was in, seeing as there was no traffic in or out of his office. He had been called away, I was told. Another hour passed before he returned. The conversation was pleasant for the both of us and lasted nearly half an hour, (poor souls still waiting, as the chairs were inhospitable to say the least) his thoughts being twofold, one that there might be a way to partially discover the condition of Segev’s phrenic nerve and connected with the second, in his opinion the nerve was either cut (during the surgery implanting the VNS) or severely damaged which would preclude, after so many years, the implanting a diaphragmatic pacer. 
Strangely the surgeon echoed the opinion of the chief pediatric neuro-surgeon I queried earlier this year about diagnostic imaging, in saying that they could not see the nerve. Since then I have revisited my investigations into this and found that MRN (magnetic resonance neurography) as well as specialized ultrasound, should be able to see if the nerve is damaged. I will discuss the matter further with him via email.

Then, Monday I posted this on facebook:

Barely had I read the warm comments when Segev began breathing poorly, in the end also vomiting severely. Part of the problem is the air in his stomach which, just as early this morning when I had resorted to giving him diazepam due to a repeat of last night’s massive seizure (despite increase to one of his AED’s), can be extremely difficult to remove. It is not simply a question of attaching a feeding tube and letting air out. Often, due to the consistency of the thick pureed food, the uni-directional valve of his mic-key requires a combination of sucking the contents out while applying a squeezing pressure to his abdomen, holding his mouth firmly closed to not allow a drop of pressure in his stomach and massaging the proximal end of the plastic tube, simultaneously. Often air will only release once most of the stomach contents have been emptied adn then a rush of air blows out through the thin tube, carrying with it a delicious blend of bitter stomach chyme, straight into my mouth. It doesn't bother me.
Later as he started to come around from the combined knock out blow of the violent and lengthy seizure and diazepam he began gulping air, a paradoxical sign that there is too much pressure in his stomach. I worked for nearly twenty minutes to be able to retrieve his meal, thankfully he did not cough during this time which would have brought on another oral expulsion. One too many of those and then it is simply counting the days till another case of pneumonia hits.

Yesterday afternoon there was some dried blood around his mic-key, perhaps only the second time ever, and so the worry remains relentless, a few hours of quiet at best, for now it is a question whether he is recovering from the complications of the last two days, a blip on the radar as one friend phrases it, or there is a process underway. Either way my mind finds little rest, which I feel is as it should be. Still in the fight, (some do not approve of using 'aggressive' terms when describing caring for the ill, illness or severe disability) still relentlessly searching. Only recently it ceased to be relevant if I can understand all elements of the process or even readily feel that a particular approach will be beneficial or not. As long as someone is showing interest and nothing is done that will end in doing more harm than good. Of course anyone can say this, but unfortunately my quest to help Segev resulted in tremendous harm, albeit that I could have no control over how that came about.

Years ago, when Segev came out of the surgery for the VNS, waiting frantically in the lounge because I intuitively felt something was wrong, I was finally allowed into recovery. When I came in Segev was clearly in trouble. Picture in your mind a large fish removed from the water, flopping frantically and with all its strength, trying to breath. Now imagine that you saw your son or daughter doing the same, immediately after exiting surgery. The anesthesiologist stood by the cot and smiled at me. In a soft voice she looked from Segev to me, as I nearly reeled backwards in shock and asked, "is this normal for him?"
While my mind raced to think of what to do for him I also had the fleeting image of strangling this little woman. The indescribable horror I felt, not knowing how serious this violent struggle was for Segev, finally came back to me in a flash, the second the Jerusalem surgeon said the word, "cut", in reference to the phrenic nerve. Perhaps not the last piece of the puzzle, but certainly that piece which allows one to stand back, looking, and say, "aha, now I see it!"


  1. Always captivating to read. Always unexpected and highly understandable as well.

  2. As often happens, I read an installment of your journey with Segev and am moved to be silent. Still and silent.

  3. Hugs. It feels as if there are no words to adequately convey the emotions your posts invoke.