January 19, 2013

still life

Maneuvering Segev into the bathroom for his shower (the bathtub is defunct) is fraught with danger. The door entrance is narrow and getting in requires coordination and a little bit of luck, since at any given moment Segev can have a seizure and begin flailing his arms about. His massive kyphosis requires holding him in a certain position for stability as well as not to put pressure on the neck as your hand tends to slip up his rounded back.
It is best when there is an extra pair of hands to assist but the built-in shower walls will only allow one person access to Segev at a time. Strangely this always makes me think of Samson in the narrow passage warding of the hordes with the jawbone of an ass. The side supports of his shower chair are more like two little bumps to irritate him rather than actually give support and with his random and uneconomical movements a large velcro strap is used to 'secure' him.
The water of the shower, coming from a hand held nozzle would completely flood the bathroom if I didn't put a laundry tub partly under the chair for his feet to dangle in. I drilled two holes in the bottom for drainage.
Preheating the bathroom is necessary as it is 10 C in there without. I cannot undress him in the livingroom and then bring him because if he is properly covered I won't be able to put him in the chair and extricate him from the towel. Besides, his suction has to come as well and carrying the suction pump on my shoulder would not allow us to enter through the door. So I wheel him into the hallway, which is just wide enough to take his wheelchair through, but has ninety degree turns which necessitate lifting his chair at the back because the small wheels won't give enough pivot. There I will undress him as quickly as possible, as he sits in the chair. I have the option of turning on the water first, in order to warm up the chair for him, although there is no place to put the shower head except to wedge it in one of the official retaining straps, which is made of a material similar to that used in the space shuttle, able to withstand the effect of aging that otherwise would have a chance of lowering its degree of abrasiveness to a level allowing actual use.
But the water temperature constantly fluctuates as the cold water is stuck in a continual cycle of ebb and flow, fighting a vicarious battle against 60 year old plumbing. This means that by the time I actually lift Segev out of his chair the temperature can either be scalding hot or unreasonably cold. Therefore I usually forgo this and put him on the cold chair, tie him in, all the while guaranteeing him that he will be warm in just a moment, and then start playing the water ballet, hoping in the interim Segev doesn't cough, requiring suction, or have a seizure. The latter results in him hitting his arms against the marble walls of the small shower stall.

Now comes the part of why I created this entry; the shower itself does something for Segev in a very positive way, surpisingly so because nothing else even comes close to this.
You see, Segev's neck is in dire straits on a permanent basis. On the right side it is wholly rigid because his massive scoliosis pulls to that side. His shoulder, the area actually between his shoulder and his ear, is hard and set up high from the internal pressures of his derelict physique, where his intestines are in his chest and his heart has been pushed over to the right side of his body, amongst other things. 
On the left side of his neck resides damage accrued from surgery he had to implant a VNS device. Perpetually swollen and sensitive, with rigid lines of hardened tissue and darkened veins protruding increasingly.
I use the lubricating aspect of the water and soap on his skin to provide a caressing massage to mostly his legs, arms and shoulders with good effect. Not so long ago I began to experiment with using different streams of water to apply a long, gentle massage to his neck and was simply stunned by the effect.
After several minutes of the localized barrage of water Segev becomes visibly relaxed. His jaw recedes less, his breathing is clearly less labored. Lines of tension on his forehead from recurrent physical discomfort melt away, and the expression in his eyes, that of a newly discovered wonder, with a look of complete relaxed and smiling contentment washes over his face. 
Watching him I can feel my chest begin to relax and it is only because it strikes me as a bit absurd, that I am able to hold back tears of joy.
After twenty minutes of this, Segev's schedule calls me to finish, as well the awkward sitting position I take up beside him, pressing on my back. Then, replete with wet sleeves and soaked shoes I begin the not-so-slight undertaking of extricating him from the chair without hitting his head against the protruding second wall, into a towel on my lap, while sitting on the commode next to the shower. From there it is a slippery few seconds to wrangle him back out through the door and into his chair.
Difficult and tiring, yes. Worth every bit of effort for the reward of his temporal serenity? Yes and again yes.

January 17, 2013

Ho hum morning

There is quite a bit written on these pages about what a person like my son Segev means in context of our humanity. Most discussions about disability, especially catastrophic disability revolves around the compromised person's humanity. As though there can be such a question. Obviously, in my mind there can be none. The question for me is only the humanity we see when other people talk about, or try to relate to severely disabled individuals. I'm putting it nicely, since what is mostly happening is that people try to relegate disabled, not understand them. People, even lauded professor's, even ones employed by Princeton university, try to argue that they have no humanity. It is more than tedious to me that I actually feel the need to give rebuttal's, here on the blog, to such nincompoops. We shouldn't even have to talk about these issues and learn a thing or two about respect, but we do have to and the journey portrayed here, of Segev, represents a story that, while unspoken by most parents, finds its echo in multitudes of homes across the globe. These children have no voice of their own and we try to give them a voice. In telling their story, naturally a good part is taken up by speaking about how it affects us, the extreme caregiver. 
Perhaps if there were more understanding about the requirements for providing such care, our lives would be a little easier.

This morning I took Segev (together with his mother since it is not possible to travel alone with Segev) to the clinic for bloodwork. His albumin was low in a previous test and he was bruising much too easily; a sign that the valproic acid he takes was adversely affecting him. The conundrum is that together with his other anit-epileptic medication (Lamotrigine, a successful but dangerous combination) his massive seizures were well controlled and he suffers only small to medium ones. As a result of the drop in Albumin (important in maintaining tissue integrity, such as blood vessels) I had to reduce the valproic acid. The expected happened and Segev recently began having many major seizures. Frothing at the mouth, turning blue, all that. I'm not certain yet how I will resolve this.

Blood tests can be done only until 10.00, after which they are sent off. Segev's morning routine is intense with much to do and must necessarily be interrupted in order to transport him to the clinic. In home service to draw blood is not an option since it is sub-contracted to a private company which sends any-old blood technician, whereas few specialists are actually successful in drawing blood from Segev's incredibly fragile veins. 

Loading his wheelchair, getting him safely and comfortably settled into the car with his oxygen, suction and O2 meter, with the ever present danger of him vomiting during any stage of the transfer, makes for constant tension. Getting to the clinic in time, adds to this. He is with his mother this particular morning and when I arrived the first complication manifested itself: he wasn't breathing well at all. His oxygen dipped to 85% while on three liters. It took me some time to open his left lung and have him clear enough phlegm so that it bounced back high enough to consider taking him. Food has to be taken with us because his meal is a two hour affair. Despite having gotten his inhalation/nebulizer therapy his breathing was very raspy and his hands were twitching continually, indicating an exacerbation of his bronchiectasis (or a return of the pneumonnia he had for three weeks) was underway. I had to decide whether to continue with the planned trip to clinic or scuttle and start more intensive physio and extra nebulizer therapy. 

Since there were several issues to discuss with the physician and the next opportunity would be three days later I opted to go ahead. There was no time for the cannabis inhalation  and so with his level at 93%, we left.

Because the only timeslot available was later toward the end of the doctor's shift I had to wait for an opportunity in between patients to go in and tell her we were there for the blood test (which she has to perform, the blood technicians won't touch Segev). As always she would then prepare the referral and continue to see some of the children in the overflowing waiting room while the lab prepared needles, swabs and labeled test tubes. Segev's oxygen continued to dip and I continued to work on his chest with compressions, letting him sip water to try and get him to cough and reposition his jaw and neck to clear his airway. He needed to get his next bolus of food but it was impossible to know when the physician would come out to take blood and if his stomach is full, the screaming and body contortions can be a recipe for inciting vomiting, so I postponed his food. He was listless and agitated at the same time and now the oxygen started running low. The wait was long, but probably more so due to my irritation with being in an environment where I could not simply put him on his side on the couch and continue his treatment as needed. Once his schedule gets behind, the whole day and evening is spent trying to catch up since medications, food, therapy, bowel hygiene and so much more all has a time when it needs to be done. Thus the days often end at 01.00 or 02.00 in the morning, continues with treatment, turning and suctioning through the night and then, at the latest, starts again at 08.00 with medications and so on.
The blood draw went better than usual although it was apparent that one of the veins in his wrist, always a favorite for this procedure, had had its day and was now officially retired.
The oxygen finished and still I had to speak to the physician about an interim report to the health ministry on his use of the cannabis, fill prescriptions in the pharmacy and discuss authorization of the upcoming elective hospital stay with the office. Supplies had not yet been delivered but the urgency of getting Segev back home takes precedent and so after waiting a bit longer, we left.
Before putting Segev back into the van I had to again work on his chest in order to open the lung as well as cause him to cough and thankfully, as it is right on the street, there was little traffic to add to the cacophony of noise coming from his cough, my cursing the oxygen alarm, people talking and the chirping of the van warning me of an impending alarm going off if I didn't press the code soon.

Finally back at his mother's I fired off the list of things he needed to have done immediately: oxygen reinstated, inhalation therapy with 23% saline, vaseline on his dried lips, water in his mouth to cough, prepare cannabis inhalation, finish his food, eucalyptus on his chest and back, administer 10 drops homeopathy for the phlegm, heating the water bottle to warm his legs and feet.
Except for the food and eucalyptus I did all the rest and needed also to double check the oxygen condenser because his level was not rising and equipment failure has happened before. While checking the machine I could see that there were black spots of fungus in the tube. More physio therapy, together with the inhalation and finally he reached 95% on 3 liters.
Now I was ready to go home and eat some breakfast and receive a call from the social worker to the affect that she was going to try get some help for us (a conversation that has been ongoing for two years). The fact that I have tried to get help for fifteen years, without success, does not allow me to feel any particular jubilation in light of this latest attempt. Government officials have been personally contacted, high up and even highest up, without concrete results.
So the recognition of needs my son has, which I am having increasing difficulty meeting, appear just as far off as always.

But that, my friends, is a story for another time.

January 11, 2013

Where is D'artagnan?

Wariness in posting on this blog has taken several different forms over the years as my understanding of internet etiquette (yes there is such a thing, despite that the internet seems to remove all boundaries, for some) and my son's place on this earth has progressed.
There are often personal issues which I would love to delve into as they form a connecting piece of this complicated life. Few ever make publication. Since my writing is entirely spontaneous, often a reaction to something I've seen or read and, of course, experienced but never the less, 'off the cuff', I have to be careful not to get carried away and I admit that on many occasions I am unsure as to what should be included and what shouldn't. Quite a few of the readers here are also writers and so you know what I am speaking about.
Still, to me openness is strength and by strength I mean, open communication, transparency, strengthens our understanding of the connections we make with others, helps us to question our way of thinking and increases our awareness and thus ability to humanize that 'other'.
But now there is a sort of problem, one that I've spoken of extensively over the years, that being the inevitable wear and tear of this kind of intense life, battling for understanding about my son's condition, battling for his life. 
While I actually am not fond of the poem, Do not go gentle into that good night, the oft quoted, rage, rage against the dying of the light, has certainly been my battle cry all these years. Soon to be fifteen. Segev will be fifteen in March and his resilience, above and beyond what I have seen in my life, should be a continued, enormous encouragement. To maintain the girding of loins, gnashing of teeth, rending of cloth that, invited or not, has seen us bleed.

There is as many of you know, that slight balance where we endeavor to create a positive experience from the hardship; fighting the battles but also relenting to quiet and tender exaltation of the beautiful human beings in our care. Finding myself, instead, teetering between these two. As extreme the depth of volition, so too the feeling of a bond destined to be severed. 

Now, while knowing a thing or two about care, the time has come to understand why it is that anger has resurfaced, leaving me perplexed. Some feel there is no need to question this anger in the face of relentless fatigue, pathological lack of sleep and an endeavor which takes, in equal measure to what it gives.
I understand now why it is that I am angry just as I have come to understand the inevitability of that anger. I will write about this differently later. 

Now, when I make a bank transfer to pay my rent as I have often done and discover a week later that there is no record of such transaction, I need to be aware of how my functioning is no longer reliable. Perhaps it is just a glitch in the internet, right? Actually on too many occasions these glitches occur. Too often I find that I cannot concentrate on what is being said to me. My face sometimes twitches when I speak because emotions are bubbling under the surface and continuing to speak is the only thing that will stop them from breaking barriers that are there for good reason. 
This is not a case of , 'have a good cry' and you'll feel better, get it out and it's done with. It goes deeper. Reading is a chore for me. One paragraph at a time is the best I can manage. This from a person who used to read a page once and be able to reconstruct literally most of it by heart.
That's all fine, I accept this bit of wear and tear; there is no gnashing of teeth over this at all. But it makes me unreliable. It means that I can no longer provide what is most important to me; the ability to do what I say that I will do.
You're only human, some will say. Yes, true. Unreliable just like so many. No longer can I feel superior to others that what I say, I can always back up. Now, I just keep quiet. Raw emotion doesn't cut it anymore. Now maturity must be called upon and that is an enormous adjustment to make. Because that maturity is realizing that, despite the unfathomable resilience of my son, reality is a bleak and weary affair that has me teetering on the brink of cynicism. And that is just plain awful.
Then there is a reprieve, as now with the improvement in Segev's health, confounding anyone's expectations. With it does not come jubilation, as has always been the case. This is a time for reflection. To understand the anger. To allow the body, unwell for longer and longer periods, to rally.

I'll leave you with a piece that will not be included in the upcoming second edition of Little Job's book of broken poems:

There is a song about the taste of a favorite sweet wine having fled my lips.
Where friendship is a bond for all time and circumstance.
It is true what they say that one can lose in a day
that which took a lifetime to build.
My favorite cigar no longer embers on my palate 
and no special night shines
with the din of table laughter.
When pastimes are all the frivolities, forlorn and forsaken.
But friends quell the shallowness of my heart.
Bring the music of your voices and 
the mercy of your opinions.
Bread is on the table.
Butter is on the table.
Let me hold your place at the gathering and hewn silk, spun
from experience and laced with wisdom
will decorate our feast.
Where is the taste of no sorrow
with a moment of now, like the dash of your fermented spice?

©2013 Eric Fischer All rights reserved. No unauthorized use or transmission.

January 07, 2013

As I live and breathe

So much is going on, plans, needs, machines breaking down, bills to pay, fatigue and aches but, "As I live and breathe", takes on a whole new dimension since Segev is improving beyond my craziest expectations. And that's all that really matters at the moment...

Early morning winter 
Pere is surprised by the sudden sunshine
Segev is enjoying morning medicinal inhalation(begone pneumonia!)
So that's where the sun was hiding

January 04, 2013

without any doubt

I'm very angry. "At what?" you might ask. Nothing. Everything. "Oh, that kind of angry." *frowns*

But I did write this:

Fare strong and thee well

Less quiet than not I sip the sand
as I tumble, pressed by an unseen hand.

The stars’ gaze, unseen ways,
forgotten paths, barely surpass
the flow of ebb
what the Creator has.

My sorrow is seen and trotted about,
amid laughter aglean without any doubt.

A vessel of birth sliding creaking its birch.
That man made abode absconds life’s golden perch.

My dear friend how can I find what’s never been found?
When you will speak the words without sound.

All the end that we must see,
without catching a glimpse of who we must be.

Fare strong and thee well,
truth found, on bright ocean quell.

©2013 Eric Fischer All rights reserved. No unauthorized use or transmission.