August 29, 2011

The Club

This time it is "just" about the status epilepticus club. Segev has not been in SE for quite some time (early March) so it was high time I guess. He is with me at home and it isn't clear yet whether he will pull clear or that the holy trine of bronchiectal phlegm causing uncontrollable seizures which results in phlegm moving upward blocking his airways will deepen but I remain optimistic.

For now an intense regimen of inhalation and physical therapy, postural drainage, frequent suctioning, muco-dilaters and diastat are order of the day and minute by minute, hour by hour, the situation will unfold.

I had an hours worth of help this hectic morning as the preparations for transferring Segev from his mother was bogged down by his need for oxygen and diastat. After I treated him there with physio and the diastat his oxygen level was good enough to bring him here, then in the car he had another choking episode, bad enough that the portable suction couldn't handle the blockage which caused a tense moment. Once here the routine intensified and will continue to rotate between therapies and medication.

The one hitch is that the oldest is in the army and my daughter is in a one week bootcamp as preparation for the army so being in this situation alone is one where I have to remain calm and keep my wits about me.

August 19, 2011

Counting leaves

In answer to Claire, about feeling sorrow, not just for our children's altered outcome but more so sorrow for the lives we have had to leave behind as permanent full time caretakers of those children, I feel threatened.
If I show my sorrow, it seems the perception is ingrained in me to believe that then I am feeling sorry for myself.  I certainly wouldn't want that and yet if left unchecked this process could spiral towards having a breakdown. The reaction then would certainly be, "well of course, who wouldn't crack under so much pressure?"
Yet If I stay the course or at least don't allow the cracks to show in the foundation of my willing involvement in this hurdy gurdy healing construct, then people assume the load is not all that heavy.

This was made clear to me the other day as I was getting the mail, which I do infrequently, where I bumped into an acquaintance from the village; a woman who had taught my son in elementary school and whose youngest son I had treated, even saving him from surgery which the experts had deemed unavoidable. She asked me about my eldest and how crazy it must seem to me to have sent him off to the army.
As I formed my answer I was filled with an intense self righteousness, thinking about the village I live in, with its tightly woven community and instant communication of trouble and intrigue. It struck me hard that she wouldn't ask about Segev and before I could answer her I pulled up a memory from back a few years, apparently in order to gird my indignant response, nostrils quivering.

When it was at all possible I used to undertake the serious endeavor of going out for strolls with Segev through the village streets, for him to feel the environment, breath some air and catch a little bit of sun. Those walks were arduous and fraught with dangers as, halfway from home, Segev would choke or seize or begin yelling from pain but I tried not to give up on them until it simply became impossible. The second true reason why I went on those walks though was out of pride. I was showing them Segev. I was showing them determination. He existed, in his troubled and tortured way but also with smiles and a clear calm as he reacted to the direct sunlight.  

There was an elderly gentleman, in his 90's, who I had given a ride once into the city, who had been a boxer and demolitions expert in the army. Living alone, waiting to die, as he put it. We would have long talks, sometimes he would join us for a hundred meters or so, but then I would turn around and help him back to his home. He invited me in and showed me how every day he would count the leaves on his favorite plant in order to see if his memory was fading. I wondered how he could be sure that the next day he would remember the same number since he didn't write it down but he spoke with such certainty that I believed him. The last time I saw him he said two things to me. "This house is no good for you son because of the stairs" he said, referring to his own house, and he told me I must buy a plant for Segev and show him how to water it, let him get a feeling of what it is that he, Segev, was taking care of something. I tried to protest that Segev couldn't understand but he would have none of it. "Never you mind" he said. "He'll understand what he'll understand. The important thing is just to do it."

He forever mourned the loss of his son and ached to finally join his wife, getting his wish a few years ago. Segev's plant is still with us. It's barely alive now for the umpteenth time and I'm hoping I can get it to make at least this one final comeback. I place a glass in Segev's hand and together we raise it as I explain about making the plant grow. Since Segev's level of consciousness is such that usually when it came time to water the plant he wasn't aware of anything in his surroundings I ended up watering it rather over zealously .

So the woman from the village had asked me about my eldest going into the army and I responded, as I said, self righteously saying, "my real worry is for my son Segev." 
"Well," she said "if that's all you have to worry about you are one lucky man."

The obvious struck me, that she somehow had lost the memory of conversations about Segev, forgotten my eternal absence from all gatherings, communal holiday celebrations, sporting events, the swimming pool, Scouts and school meetings and so on and so forth. But this did not spare her from a mild tongue lashing as in one long breath I summarized the delicate existence that Segev boldly fights for.  
"....uh..well, that you should just know good health" was her response but I had already turned away, before I would say something inappropriate and headed home.

One can argue, without the need to go into detail, how perhaps working harder even to educate about Segev's frailty might have resulted in a different social situation. While I approached various people, both officially in their function as social advocates and unofficially asking for help with housing, the feeling that I would be perceived as "feeling sorry for myself", or worse, "not able to make do" has simply been overwhelming in its presence.  Even stranger is that I simply don't feel sorry for myself, truly giving thanks for what I have because I know it could be much worse. 

Tying in to Claire's post on sorrow, it would seem to me that if I had been able to express more of my sorrow, to close friends or family, instead, in horrifying fashion, having to share some of it with my children, I might feel a bit more certain, a bit more confident in dealing with the infinite little issues that crowd everyone's daily lives, especially those who do not function as caretakers of physically and mentally compromised (PMC anyone?) kids. 

Having family at a great distance and having seen "friendships" whither away adds to this sense of isolation. Isolation is really the core driving force behind sorrow, isn't it? Having had a partner who makes many promises of help, of easing some of the burden financially turn her back on you,...well, I won't admit to being bitter but certainly heavy disappointment can also be a source of sorrow.

I think I expressed my stance on sorrow when I responded to a prior post by Claire with "And I pray that I am not losing my mind too much, so that it will affect his treatment, even as I watch myself getting older."    
Yet I am not quite certain but it appears to me that out of self preservation, in order to combat this intense feeling of sorrow, I am trying to reevaluate the intensity of my role in caring for Segev. But I am running into such resistance on my own part that only a state of limbo is the result where nothing becomes clearer, no decisions loom on the horizon. 

But now I remember again the old man, and see how that memory did not come up randomly at all. 
I'll be counting the leaves each day, seeing how the next day things will be the same and I'll understand what I understand, most importantly, just doing it. 

August 15, 2011


I have a different Segev now.  Due to the eternally changing landscape of his condition, the pain and uncertainty, I have made changes to one of his four Anti Epileptic Drugs (AED's) and the fourth, the ketogenic diet, has been temporarily suspended.

Therefore there are more small seizures; staring, or gelastic seizures or where he locks his mouth open in a grimace, or can't stop yawning. There are more medium seizures, his "going to sleep" seizures where there is some flailing, stiffening, holding of breath.

There are also more large seizures, sometimes being provoked by the "going to sleep" seizures, sometimes coming in the middle of the night or from moving him from the couch to his bed, turning blue, rapid eye movement, tongue protruding, purple, then jerking.

But this Segev is also awake, reacting, showing expressions on his face that he has never shown previously. Emotions seem to take form for just a few seconds.  His smile seems tinged with understanding by the activation of a few more facial muscles.  When spoken to his reaction is quicker, actually varied, even involving slight hand movement. He seems to lower his eyelids (he never blinks) as a response with increased frequency.

These changes are a trade off at best and he has been on this exact combination of AED's, at this exact dosage before with no such outbursts of consciousness, but I'll take it for now.
I kid you not when I say I bathe in it, exactly like the beautiful sunshine with its warm, no, stinging glow.

August 12, 2011

It's all about me

How I, as parent and the main provider of 24 hour care for my extremely physically and mentally compromised son, react to the stress of this life is an issue of the utmost importance to me. I need to be able to perform to the utmost of my abilities at all times.

When Segev begins choking at 03.00 in the morning and I am required to wake and literally jump from my bed, grab the suction, place it properly and operate the tiny, nearly hidden, button on the device all within seconds, while repositioning his head as well as his jaw to help clear the airway, even when it is the eight time that night and will not be the last, after a very difficult day with him, with no rest whatsoever it is hard to say how long you can keep that up for. The days do roll one into another and therefor I never have any idea what day it is.

I had my hearing checked because for the last few years I've noticed a very significant decline. It seems that human voices are the most difficult thing for me to discern. At the end of the test I was told that I have exceptionally good hearing and that if it has declined then I must have started from an extraordinary level to begin with.
I now need more light to properly see. "How can you see that without any light, Eric?" is a sentence I've often heard.

The other day I lifted Segev out of the van and headed towards the stairs. I held him on the opposite side that I am used to because my back was acting up. Suddenly I felt a twitch in my back and down I went, my legs unable to support the added weight of Segev. Instinctively I held him tightly to my chest, high up, so that he would be the last thing to hit the ground.
He was still in my arms and not touching the ground when I was able to call out to my son, fortunately still in the house since his induction into the army was a few days away.  He took Segev from my arms and carried his little brother up the two flights of stairs while I tried to get to a standing position.  With home treatment I was able to stand up straight within three hours and lifting Segev again within another three.

I thought super powers meant that you had them forever. So now I am afraid. I've already had to resort to a leg brace when carrying Segev up and down the stairs for over a year since the torn knee ligament makes me unstable. An operation would put me out of the running and make it an impossible burden for his mother to care for him. I mentioned my son is in the army. Summer vacation has nearly ended and then my daughter, who does her best to help, will be back in school.

So I am a bit afraid. Now for the first time I feel as though I'm "winging" it. I'll just have to see how it goes. There is no control in that, no certainty and seeing certainty pulled from my clutching fingers is what has gotten me into this maelstrom I've been feeling ever since we left the hospital the last time. Segev hasn't returned to a "comfortable" norm since.

Recently he has gone through some horrific pains, apparently, but not for certain, a kidney stone. We had to rule out a number of things including pancreatitis, medication side effects, partial bowel obstruction (still not ruled out). One doctor suggested it might be a general neurological deterioration. Segev received a lot of pain medication. Treatments by me, with varying results, continued night and day. Sometimes a sudden smile would appear on his face only to be replaced by an excruciating scream a few minutes later.

This lasted for two weeks and made even the stertorous life we usually have even more heavy handed and unforgiving.

I'm becoming a blunt instrument, I thought to myself. For those of you who can understand this, my heart goes out to you. Because you've been there, like a zombie pressing on in some mode of instinct.

Getting a grip on things when you know you are losing your grip is a dangerous place to have to be. There is some new dynamic recently introduced into the picture, some help for the house and possibly for Segev. Change can be a good thing and I will certainly try to flow with it, looking carefully for positive effects that are so much needed.

Most of it is in the mind, I believe. How we react to a situation, especially when worn down by physical ailments and fatigue, is the one element we can have a modicum of control over. What happens outside is often not in our sphere of influence, but changing how we perceive things is actually within our abilities. All we need is willpower and the right tools.