If it's done slowly
there is more of a likelihood that events will fall into place. But Sunday morning, as our planned visit to Alyn hospital in Jerusalem was underway, I stood helplessly at the garage waiting for Segev's van to become available. The engine overhaul complete I was still required to test drive the car before the trip to Jerusalem. The delay meant we finally arrived at hospital several hours late for the slew of scheduled appointments.
The OT staff was accommodating, for which I am grateful, but still the respiratory assessments were pushed back to Tuesday, not allowing enough time to make an official definitive, recommendation for the IPV (interpulmonary percussive ventilation) machine, which we had previously tested on my son in November.
I waited for five months to get this elective admission and the end result in regards to respiratory assessment was that we need another, week long assessment.
There was an upside though as previously I had worked to allow the use of an external respirator (Hayek rtx cuirass), one that is actually used in place of an intubated respirator, and though during the prior visit the test was vetoed, this time around we got it done. Again, the test was a one-off and actually a month of use is required to establish its efficacy but the vast expense of the machine, irregardless of the degree of necessity for its use, has yet to see any health insurance company cough up any money in Israel. Still it is a start.
Together with the single IPV session Segev's regular oxygen saturation of 90-94% @3 liters went up to 98-100% @2 liters from Tuesday afternoon after the sessions, up until late Wednesday morning. This is very significant and as a preliminary result, better than could be imagined. The idea of these two devices is actually to (partially) inflate Segev's collapsed lung, well enough to allow secretions trapped deep down to escape as well as simply make the effort of breathing less strenuous.
The cost of the Hayek machine is roughly $20,000 here, but my focus will be on trying to get a rental contract paid for by health insurance.
During the stay I needed to sleep on a fold out chair next to Segev's bed, which was, as always, a bad experience. Besides the regular nightly routine of turning him, physiotherapy, inhalation and suctioning that are extra tiring with a crick in your neck, Segev was very unsettled, being vocal for hours on end (exceedingly rare), dropping his heart rate from a regular 105 bpm to a startling 69, he had some severe seizures which required diastat.
Together with the constant ringing of alarms throughout the night from any one of the other three children in the room, either from their ventilator or pulseoximeter, plus the constant flow of people and noises left me frazzled the second day and barely functioning by the third. And yet it was on the third day that I seized a moment with the physician in charge to spontaneously organize the demonstration of the Hayek system on Segev with the generous help of the head of ICU in Hadassah hospital, the one who came to visit Segev at home.
Due to the extra seizures in hospital I have had to increase one of SEgev's three AED's (anti epileptic drug) which in turn makes him more groggy and has the added side effect of causing a seizure where he suddenly jumps and begins crying. I don't know why but the resolution of that seizure, always causing Segev to smile, is heartbreaking.
There was also a consultation with the resident orthopedist who felt that Segev's massive kyphosis has not worsened and if it does that he is a candidate for surgery, but which surgery was unclear as many of the conversations were a bit muddled, perhaps by my lack of clarity due to fatigue. It sounds as though I tire easily and I readily admit now that this is the case. This makes the planned next visit, of at least a week's duration, seem entirely untenable.
A basic plan was drawn up, after measurements and discussions, for a new wheelchair, but here again the budget of the health department seems to have shrunk over the years while the need of companies that supply severely disabled children to make profit has increased. Quite simply, when a company wants $175 for a cushion, something is not right. But most readers will recognize this trend from personal experience with a heavy sigh, I'm sure.
In the mean time I've recovered from the ordeal and Segev is no worse the wear, no sign of the double pneumonia from just ten days ago. A slight sting can still be felt though.
Almost suspended, we are laid asleep
In body, and become a living soul:
While with an eye made quiet by the power
Of harmony, and the deep power of joy,
We see into the life of things.