Monday, May 16, 2016

Two nice nurses and a heart-wrenching story

C. after a seizure caused her
to bit her lip

Now back to Tuesday's nurses. One was the VNS company's rep. She observed and photographed C.'s VNS. Then she listened to our history of C.'s epilepsy and gave us an hour's spiel about the VNS.

She "repped" so well that she swung me from lukewarm to ga-ga about the idea. She told us that the VNS' benefits aren't limited to seizure reduction, which is pretty impressive in itself - 62% of implantees improve either in number of seizures, length/intensity of them or in recovery time after each one.

But we learned that the VNS can also provide benefits unrelated to seizures, in cognition and memory. The nurse/rep emphasized that C. is not likely to ever enjoy any dramatic improvement in those areas, just tiny changes.

Well, as I've mentioned before,  tiny smidgeons of progress are very alluring to us. Of course, dramatic would be a lot more welcome but we're realistic. So the chance of tiny smidgeons won us over.

We already have an appointment to have C. assessed by the surgeon (early June).

Nurse #2, our health fund savior, arrived while the VNS nurse/rep was still around. He assessed and re-bandaged C.'s pressure sore and gave it what sounded like a D+ for healing progress. Ah, well, can't win them all.

Most intriguing about his visit, though, was what he told me about his wife who, after months of bureaucratic hurdles, finally scored a medicinal cannabis license a few weeks ago. Last visit, he told me it was controlling the pain nicely. But this time he said she has stopped using the stuff because it was triggering her nightmares.

Champion nurse/rep chimed in with an anecdote about an epileptic child who became irreversibly psychotic on cannabis and whose neurologist is beside herself with concern now. Hmmm. Of course this reached us 3rd or 4th hand so we took it with a bucketful of salt.

Over here, we are still enduring "bad days", with C.'s old "central fevers" in the picture too. THC continues to help but this period has been very debilitating for her and me. Yesterday, after one seizure we found her like this (see photo at the top).

The source turned out to be a small cut on her lower lip which stopped bleeding immediately after I wiped her clean. Her lip is a bit swollen today but doesn't qualify as a major concern.

In light of the current seizure situation, the VNS is looking increasingly attractive. I just hope the surgeon doesn't reject her as "too complicated a case" because of her current VNS which was implanted in December 1999. It's a possibility the nurse warned us of.

Now for the heart-wrencher alluded to in the title - an Israeli opinion article I found on line, unrelated to our nurses. (though it does feature a nurse).  It will undoubtedly resonate with many of you. Caution: keep the tissue box close by.

A child isn’t a lollipop
Alon Idan | Haaretz (Israel - Hebrew), May 5, 2016

He looks at me for a moment as if he wants to say something but immediately lowers his eyes. I notice that on his left knee lies the head of an adolescent girl. I walk back to the bench I had been sitting on.

“Listen...” he is nearly stuttering now, a few seconds later, “Can you perhaps help me?” I tell him yes but don’t understand what help he needs. “I need you to help me hold her,” he answers looking in the direction of the head that is resting on his left knee.

Patients in waiting room (in Birmingham AL as it happens)
We are outside the ultrasound rooms in a hospital with people lying on beds scattered along  the length of corridor, most of them old, wrinkled,  eyes stricken, but the head  lying on his knee is the head of a young pretty girl. I ask: “Help holding her?”

He nearly apologizes: “She is mentally retarded, she doesn’t speak at all and the last time they wouldn’t x-ray her because she got wild, and everything she eats she immediately vomits up, for a long time now, and I must have her x-rayed, must.”

He’s her father and is over the age of 50, and he’s an Ethiopian immigrant from many years ago and now sits alone on a hospital bench, and his daughter is lying on his left knee, and when he speaks about her in a mix of apology and pleading she suddenly raises her head, opens her beautiful eyes and looks at him, and afterwards at me, and says nothing.

He has an orange hat, and under it is a man who works every day in a hotel, the night shift, always the night shift, “so that I’ll be able to be with her in the mornings and afternoons until my wife returns from work.” And he returns from his shift at 2 at night and falls asleep on the sofa beside her. “I fall asleep like this”, he demonstrates. “Sitting, I fall asleep sitting. There’s not much room in the living room, and I must be beside her at night, in case she wakes up suddenly and does something.”

An orange hat and a hand that is now resting on it, while I sit beside him and don’t know what to tell him. “It’s hard”, he suddenly says, his voice cracking, “This life is hard, very hard.” I nod, helpless. “It’s not a life.... nobody comes to us, and I don’t go to anybody, and everything revolves around the child.”

I ask him whether the state helps, and he answers that “there’s no state that helps like this one, but I’m not prepared to give her away, not prepared.” And then he says a sentence that he will repeat over and over again: “A child isn’t a lollipop, you don’t give away a child like that. She’s my child. Who will care for her the way I do? I will care for her as long as I am able to, until I die. A child isn’t a lollipop.”

The door opens and shuts but nobody looks at him. He begins to fear that I might need to leave. “I’m holding you up”, he says to me “I’m holding you up.” I say that it’s OK, he shouldn’t get stressed and he relaxes a bit. “You understand,” he continues, his hand rests again on his orange hat trying to crush it into his skull, “I don’t leave the house, only to work, it’s hard like this, it isn’t a life.” And a moment before I say to him that I understand – can you really understand? – he breaks: “There are no friends, nobody, alone all the time.”

A grown man, a child lying on his knee, now sits on a hospital bench and cries.

Presently they call him. It’s time for the examination. We walk towards the door: the father, his daughter and a total stranger. “Who are you?" the nurse asks me. And the father immediately cries: “He’s with us.” “Why does he have to be with you,” she asks and the father says: “Because she moves a bit and he’ll help us hold her.” “Hold her?” She’s suspicious and immediately determines: If it’s “a case like that” then the ultrasound can’t be done.

The father is stressed. He says everything will be alright, that his daughter must be checked,  just as a large-bodied janitor approaches us: “Come, come a minute,”  the father asks and the janitor doesn’t understand. “I need you to help us too,” he says, and the nurse looks on in disbelief. Suddenly, without asking, the father raises his daughter – long, thin and frightened like a baby – and simply lays her down on the examination bed. Before the nurse has a chance to object, he says: “You’ll hold her legs, and you’ll hold this hand and I’ll hold her like this.” The nurse is about to say something, apparently to object, but she never finishes the sentence she begins to formulate.

Lying on the bed in a darkened room, three men gripping her body, a strange device, perhaps painful, threatens to touch her – the child trembles from fear and begins to go wild. “Don’t be afraid, my darling” the father cries and caresses her face, “don’t be afraid, everything will be OK.” Now the janitor, his face large, a yarmulke on his head, his eyes moist, says to her: “Don’t be afraid, don’t be afraid.” I too join the plea, as her right hand struggles forcefully to escape my grip.

But the girl is still going wild and the nurse is still hesitant, and now the father strokes his daughter’s face again, repeating the words: “Don’t be afraid, darling, don’t be afraid.”

He stands directly above her, his head above hers, so frightened that the nurse won’t perform the examination. “Don’t be afraid, darling,” he continues; now it is truly a prayer. “Don’t be afraid darling”. But she continues to move, to go wild, to resist, when suddenly I notice tears trickling onto her face. The father is sobbing on his little girl. Sobbing onto her and begging: “Don’t move, please, don’t move, let her check you, you must be checked, please.”

And the nurse, who can no longer avoid the sadness and the power and the beauty of life that coalesce in the tear drops flowing from the pure heart of the father to the frightened face of his daughter, immediately smears the gel on the girl’s stomach and places the scanner on her.

(Translation: Frimet Roth)


Elizabeth said...

I haven't read the story, but I do have a couple of comments about the rest of the post. First of all, I am so sorry about C's seizures and, particularly, how she bit her lip and bled like that. There's something about the injuries that happen during seizures that hurts me, too, even more than watching the seizure. It's just so f'd up, right? I have absolutely and never heard anything about marijuana causing "psychosis" and find that story nearly ridiculous. Perhaps the person was also on some other anti-seizure med? There's a new drug on the pharmaceutical scene called Fycompa that can cause extreme and even homicidal rage. My last comment is about the VNS. While I hope that it might help C, I also have never heard of a 60% efficacy rate. In any case, I send you continued courage and strength as you move forward.

And way to go on the THC drops stopping seizures!

The Sound of the Silent said...

For me, the worst part of the seizures is the knowledge that every one of them fries her brain and sets her back functionally. Each one cancels out our daily struggle to push her forward a tiny bit.

You haven't mentioned whether Sophie is continuing to gain new skills now that she's having fewer seizures. I hope she is.

It is definitely a shame that this nurse is maligning the use of cannabis among her patients with a story that really does sound, as you put it, "nearly ridiculous". I'd love to send her links to sound medical articles that counter that claim. Can you send me any?

The woman's story is extremely subjective; her nightmares could obviously have innumerable other causes. She's been in a bad way for some two years, according to her husband, our wonderful health fund nurse, and hasn't been able to work all that time.

And as for the VNS - well, our expectations are pretty low so the quoted success rate doesn't really impress us anyway.

P.S. I think you'll really like the story I posted too!

Elizabeth said...

There are some great resources on the Realm of Caring website. They've listed many, many diseases and the current and past research articles done on each one. If you can't find the link by googling, let me know and I'll go and find it for you.

The Sound of the Silent said...

Thanks for the site. I've been there before to read your articles but never explored it. I now found a couple of great medical articles about cannabis' effectiveness against epilepsy which I intend to forward to any doubters who cross my path.

Btw, we have raised C.'s dose and are seeing a slight reduction in seizures! (Ssh, keep it under wraps, you know why...)