March 14, 2013

The river bed

The recent post from Harold, who ended up in hospital and asked if perhaps after all he isn't invincible naturally brought up many thoughts about my own health and my experience with hospitals regarding Segev.
My experience has been nearly wholly negative all these years, both on the personal front and with Segev. I have said before both here and in private conversation that the circumstances that would see me once again taking Segev to hospital are nearly non-existent.

Last weekend Segev began seizing every four minutes and fortunately three doses of diazepam were enough to bring the seizures to a halt after a total of five hours. When giving diazepam, especially to a child who has such poor lung function as my son, inadequate spacing can depress breathing to the point that it stops. I also could have given him an injection of midazolam but there the danger is X-fold. If the seizures had not stopped I would have had to call an ambulance.
I can't place enough emphasis on how stressful such a decision is for me due to my past experience with emergency rooms here in Israel. In no way do I think my experience indicates a blanket assessment for other children but in Segev's case the lack of listening by the physicians have nearly cost his life several times.

When I hear about family members physically attacking doctor's in hospital I can understand what has driven them to do so. I don't condone it but certainly I have been on the edge several times, shaking visibly from adrenaline, but always staying cordial and patient, knowing full well that the consequences of more aggressive behavior would be even more detrimental to  treatment in Segev's many instances of acute and life threatening issues.
Status epilepticus is certainly one of those life threatening issues. On numerous occasions I've been forced to take him by mobile intensive care unit because his seizures would not stop and continued to progress from one every four minutes to every two minutes. His body and mind can only take so much of that before it decides to shut down. In general 24 hours is the danger point.
With years of experience I've seen which medications work and at which dosage so that coming into the emergency room, giving a quick background history of Segev's condition and a summary of previous experience with certain medications it is reasonable for me to assume that a physician can recognize that years and years of care and many previous episodes gives me recognizable and valuable information that they need to properly assess Segev's needs. Not so. Again and again I have failed to impress the need for a particular dosage or medication. More than once the attending physician has asked me, "how do you know he is seizing?". This is absolutely flabbergasting. I've also heard on more than one occasion, "I don't think it's a seizure." 
I've had to argue vigorously just to get an EEG done to prove my point. Finally relenting, the EEG done and conclusively showing that he is in 'status', I ask, "well, when will the neurologist see this so that we can proceed with treatment?"
"Oh, probably tomorrow." was the technician's response. I demanded an immediate consult which was denied. Segev was admitted and the attending physician again responded to my question as to when the med would be administered to stop the seizures with a, "how do you know he is seizing."
After more discussion he relented and ordered the iv drug which instantly stopped his seizures. This was of course after an entire night without sleep and nearly twenty four hours of continuous seizures due to the twelve hours that elapsed between arriving in emergency and the administration of a phenobarbital derivative into Segev's vein.
Exhausted, I left his mother to hold watch and drove home to get a few hours of sleep. On the way out of the hospital complex I suddenly realized that no blood sugar measurement had been taken. I called his mother and told her to immediately have a nurse check: his blood sugar was 24. Another hour, perhaps half an hour and he could have died from this.
This example is typical of my experience with the one exception being PICU in one particular hospital, where the level of care was Godlike. 

In February of 2011 Segev was hospitalized in status epilepticus after a bout of swine flu (despite being inoculated) had gotten him into an episode of cyclical vomiting which emptied his meds every ten minutes. 16 hours passed before they gave him an anti-emetic and we were place in a room filled with babies whom all suffered from viral pneumonia. Guess what Segev caught while there? First it was gastritis, then viral pneumonnia and he became dehydrated while in hospital because they had not put together a hydration plan.
The specialist in infectious disease came to take a history of events for the last several weeks beginning with the bout of flu. I told her that he was given tamiflu for only a few days because it made his breathing much much more difficult due to its severe drying effect on his lungs (at the time we were not aware of his diaphragmatic paralysis and resulting atalectasis) and that towards the end of the flu I gave him prophylactic antibiotics because a bout of flu had in the past allowed the colonized bacteria in Segev's lungs gain a greater foothold and the result was pneumonnia.
Her response?
speaking slowly "you know, that antibiotics are not a treatment for flu, don't you?"
"Have you been listening to what I said" I responded.
"Well, you're not a doctor, are you?" was the only thing she could think to say.
The next day two interns came by to tell me that they were going to start Segev on antibiotics, "just to be sure". The same antibiotics that I gave him at home.

Sixteen hours after they had begun administration of the standard protocol for halting seizures, which I emphatically suggested  to several doctor's  was not sufficient in Segev's case, he was still having seizures every four minutes. I grabbed one of the senior interns and showed as much concern in my expression as I could, turning off the anger I felt, and pleaded with him to finally increase the dosage which I knew was at least the first step to stopping the seizures. He looked at me like a concerned uncle speaking to a five year old, even putting his hand on my shoulder, "these things take time, you know"
No they don't you asshole! Was what I wanted to blurt out. Many will think, especially if you know Israeli culture, that is exactly what I should have done. Instead I quietly found another physician who agreed to increase the dose. After some time and nothing happening I found a nurse who informed me that the dosage increase had been authorized verbally but no written order existed so they couldn't go ahead with it. 
Someone needs to go flying out the window from the second floor, I thought.

Each time Segev goes into deep water, all these instances play on my mind. Granted this is perhaps not the best way to assess the need for hospitalization and later approach a doctor and try and give him the picture in a way which will fast track Segev's treatment but it's there, regardless.

In a recent conversation a person remarked, "you're afraid of losing him, aren't you?"
'No', I said. I'm afraid that the worst still lies ahead and that those experiences will be compounded. It's not about the end, but how you get there. And the last thing that I want is that my decision not to bring him to hospital or conversely the opposite decision, will in some way make Segev's meandering into the long hard night, even more difficult.


  1. It's agonizing just to read this. To live it ---
    well, I'm reminded of an old friend in NYC, an urbane and experienced man, who when his wife was dying of brain cancer actually carried a gun to the hospital one day, ready to brandish it if she wasn't given her pain meds on time. May things ease up for Segev, and for you.

  2. I can relate completely to everything in this post. Except for the fact that I don't worry as much about pissing a doctor off, mostly because I have doctors I can bring in from the outside to support me and I also have more options for securing care for Jack. It's extremely tough when you have cared for your medically complex child for so many years and some doctor acts like he or she knows more than you do about your child. You have the patience of a saint Eric!