August 20, 2012

No surgery

Whether it sounds a bit odd or more than that, disturbing, I work with my intuition and this in extension, brings with it premonitions in the form of visions. I've been able to forsee Segev's major illnesses this way, his hospitalizations but also to prevent situations from developing into full blown illness. It is not a full proof system and there is room for interpretation that questions if some cases are not self-fullfilling. Case in point is this operation, the tracheotomy, which i did not have any 'feeling' about but rather chose the timing purely from a calculated point of view. He needs this surgery, but after the month on oxygen, the trying and above all disconcerting nights where his left lung was often closed enough to drop his saturation through the floor no matter how much oxygen supplementation he received, it was cold calculation which said, 'now is the time'.

But then came the x-ray which I had decided to do prior to the surgery. The surgeon actually asked in his letter to provide a chest x-ray but he failed to mark this on the surgery invitation which lists required paper and bloodwork. In any case the physician at the imaging center wrote that there is nothing remarkable about the Segev's x-ray. I had a good look at it and saw the raised diaphragm pushing into the lungs and heart, allowing the intestines to move upward. Many of Segev's clinical signs can be explained by this; from his dyspnoea and low saturation to the need for constant venting of his stomach, the discomfort he experiences sitting in his chair, paroxysmal episodes of pain and resultant screaming, the irregular heart rate, the bradycardia and especially the 'closing' of the left lung which can even be seen to some extent in that his left chest barely moves during breathing difficulties. Further more it speaks towards his vastly expanded kyphosis (hunchback) which nearly doubled in the last six months.

The cause of this can be phrenic nerve damage leading to one sided paralysis of the diaphragm. Herniation is also a possibility though much less likely since the line of the diaphragm looks clear and unbroken in the x-ray.

So if all these problems are at the very least moderately influenced by this condition, it only stands to reason that this be investigated further and corrected if possible before proceeding with the tracheotomy.

Eventually that surgery will take place, but not before we can determine if the diaphragm issue will resolve and thus lighten Segev's present state of health. 

August 19, 2012

First day in hospital -not quite

The day is about half over and Segev is back home. The surgery will apparently go ahead as scheduled, Tuesday morning but since both the admission and two consultations, one with the pulmonary specialist and one with the anesthesiologist, were taken care of we will either return monday evening or tuesday morning, depending on the exact time of the surgery.

The start of the day was not exactly auspicious as there was a great deal to organize that can only be done at the last minute due to Segev's expansive collection of equipment and medications that he uses continually. So we were late getting out. "We" were Segev's brother and sister, mother and me and of course Segev himself who has been having decidedly more seizures over the last week. They are mild, where he cries out, almost in jubilation, throwing his arms in every direction all at once, necessitating quick intervention to avert damage, face scratching and bruises.

Once past the security checkpoint there was a very large private ambulance blocking the driveway to the entrance of the children's hospital.  I drove a bit past him to see what was the hold up but there was nothing blocking his way so I backed up again and beeped him to let him know I needed to pass. Nothing. Perhaps the driver isn't inside, I thought. So I got out, in the mean time other cars backing up behind me and talked to the driver. He pointed to the space between his massive vehicle and the wall, about one meter width and said I had plenty of space to pass. "With my van?" I asked incredulously. "Not my problem" he said. Then I simply told him that he is moving his van because he is preventing my son from being admitted into hospital and indeed he began to back up to clear the space. Unfortunately now I couldn't move back out of his way due to the build up of cars behind me, although the first car had plenty of space to move so I motioned to him to back up a little but he began waving his arms and shouting.
I again got out and walked over to him, explaining the situation. "Why are you blocking the way?" he shouted. Trying a different description I explained that I didn't plant the ambulance there to stop traffic and that in order for him to continue on his way he was going to have to back up. He wasn't convinced. Not. Budging.  "You really want to argue with me about this?" I asked him. "Yes", came the reply. I shouted a bit at him about the wheelchair, my son having an operation and turned my back on him to walk to my car. He backed up....

It was a very long walk to the ENT outpatient clinic to be admitted. A long wait to speak to the doctor which only came about because I insisted Segev couldn't wait for long periods. Conveniently Segev had decided to play along and his oxygen levels started to drop off. In the commotion his oxygen bottle had stayed in the car so over the next few hours we were taking turns giving extended physiotherapy to try and get him back up to normal levels. It would have been easier to retrieve the bottle from the far-removed car but then you aren't doing anything to correct the cause, which could either be a mucus plug or closure of his left lung or a combination of the two. One you can do something about, the other nearly nothing.

A lot of questions were answered and it was here that I felt the first opportunity lay to show the chest x-ray that I had the foresight to have made, trying to cover as many trouble areas as possible. On this x-ray, as you can see in the previous post, I saw something which, if I was correct could alter the course of the surgery. There I saw a large loop of bowel protruding upwards where the stomach should be, pushing the diaphragm muscle into the lung. This could explain the pains Segev has in his stomach, the constant need for venting and the difficulty of his left lung in remaining open.
The surgeon looked at the picture and said, "I think your right". I would much have preferred to hear, "sorry chump, you got it all wrong". At my behest he called the chief pediatric gastoenterologist whom knows me and Segev well and with whom I've had a good, if patience-testing, relationship. He wanted the anesthesiologist to have say in the matter and felt his department wouldn't do any kind of procedure to correct it(?!). So we went off to the pediatric surgery department, everyone and bags and bags of necessities in tow, up and down elevators and through long hot corridors. We needed to draw blood from Segev as there was no opportunity to do it beforehand but I was required to go to the emergency department  where surgical admissions are handled and get me some of those white hospital file labels. Without the white labels, no blood test. Our orange hospital labels will do us no good, I am told. This only takes me about twenty five minutes of waiting while the receptionist with tries to explain in English to a woman what she needs to do now after her baby has been born. The problem is that she has no real control over the English language and is therefore contradicting herself. 
"So, I take this letter and ask for the form before or after I pick up my baby?"
"Yes, you don't go first for the form", she answers.
"When should I do this, is tomorrow OK?"
"No, you can do it any day some week."

Blood is drawn and comes out simply and evenly, even though every single other time it's ever been taken we have had to literally milk his veins drop by drop.
Then it is decided we would first see the anesthesiologist and then the pulmonary doctor. The anesthesiologist didn't seem terribly impressed with Segev's bouts of central apnea, hypothermia or bradycardia. He felt that Segev's altered anatomy due to his monstrous kyphosis, lack of neck stability and difficulty breathing with his head tilted backwards had no impact on the surgery. What about the bowel protruding into the lung? What do you have to say about that? "Let the pulmonary doctor decide on that one." He said, even deferring a look at the lung x ray.

Back to the surgical unit to wait for the pulmonary specialist. Bags and bags in tow, children in tow, up and down in elevators, through long hot corridors. Up and down ramps. Only the pulmonary doctor is not coming after all, we have to go to her. Guess where she is; halfway back to the ENT outpatient department. I stop multiple times on the way to perform chest compressions on Segev to get his oxygen back up but it is barely working. Even coughing with a good clearance of phlegm isn't helping. The opposite his levels are actually dropping, 87%, 84%. I bump into the physician half way there. She'll be with us in a few minutes. Her office is upstairs with no elevator so we have to wait outside at the bottom of the stairs. There is another clinic there on the ground floor but if I wait there she might not know to find me. In any case, being nervous I prefer to wait at the bottom of the stairs in the shade. Segev is going a bit wild, shouting and throwing his arms around, the seizures simply aren't letting up. More physiotherapy. I put my ear to his chest to see if his left lung is closed and a concerned nurse happening by stops and asks if everything is alright. 
"All things considered, yes", I respond.
After about twenty minutes the physician comes and we start the examination but she is unable to come to a conclusion because I didn't bring any previous imaging of Segev's lungs. "Is his diaphragm paralyzed?" she wonders aloud. "I don't think so because he doesn't seem particularly stressed", she answers herself. In any case she says that a tracheotomy is usually done to a person who isn't healthy, otherwise why would he need such an operation. So she writes out her report stating that it is mostly based on my extensive knowledge of Segev and that his baseline, while on a downward curve, is not in the midst of an acute crisis.
What about the loop of bowel, protruding into his lung? "That's best left to the gastroenterologist", she says.

Back in the car I put Segev on oxygen but he needs 3 liters to come back up a bit. He finally quiets down and the level shoots back up. Something neurological then, perhaps connected to his wild hoots and hollers.
The doctors of course all take one look at Segev and begin probing, grabbing, pulling. Even when gentle, there is no foreplay. I try to head this off each time by talking to Segev and explaining that we need to check him, it will be over soon, it won't hurt or not for long and he's doing really great.

I'm a bit frazzled but at least at home and Segev is quiet. I'm concerned about the bowel loop but remember what one of the physicians said, "He's being doing alright by it up till now hasn't he?" and believe things will work out. Some rest is in order and perhaps a glass of wine.

August 15, 2012

Getting closer

This coming Sunday Segev will be admitted into Hospital for surgery. Many children have a tracheotomy, though it is not often planned as a permanent installation as is the case here. The Hospital's protocol calls for seven days in pediatric intensive care: I've chosen a hospital that Segev was in before because the PICU is top notch in my opinion. The wards are a nightmare for such a medically fragile child as my son ( you may recall his previous stay there from Jan-Feb. last year which nearly ended up costing him his life) but hopefully things will be different this time. The hospital is also relatively close to my home which will make things easier as I switch out shifts with his mother. How long those shifts will be is something left to be determined on site though my estimation is 24 hours. While it would be possible to do more theoretically, when I am watching Segev, I do so without sleep or perhaps a few 15 minute cat naps here and there so this precludes me from staying longer.

I am not thinking at all about the challenges that lie ahead because they are beyond my control. I know in my heart that Segev must have this operation in order to grant him some more time on this earth. In the long run it will allow him to breath with less effort and is probably something I should have done sooner. Had I felt he was strong enough to successfully survive the operation, including post operative complications, I would have done so. It is what it is. We make these decisions all the time, not knowing the future, whether the risks outweigh the benefits, whether complication will arise that see us regret making them.

Interestingly enough this blog, even nothing new is posted, still gets dozens of hits every day because of the single entry (and photo) on tracheostomy surgery from a year and a half ago. Many kids have a trach, I even know a few, mostly with success stories, one that I met personally in hospital last year with some horror stories. Just as was the case with the gastrostomy surgery, to place a feeding tube permanently in Segev's stomach, it will significantly change our lives in the way that we care for Segev on a day to day basis. Changing his diapers can be too much for one person when he is thrashing about from agitation or seizures so there is definitely room for worry but I'm not thinking about that, which actually causes me to berate myself.

When the gastrostomy tube was placed in 2004 they tried to do it laparoscopically but the influx of air collapsed his lung so it became an open surgery. Due to this adhesions formed in his intestines and a year later his intestines became blocked and burst open in three places, necessitating life saving surgery where they cut part of the intestines away (the ileum where vit. B12 absorption takes place).  To be accurate the intestines burst while we were in hospital, the surgeons unclear as to diagnosis and ended up waiting too long. I was told they lost Segev twice on the table and that they needed to supplement an amount of blood equal to what an adult has to keep him alive. Still, when we arrived immediately after the surgery to PICU (in the hospital where we will be going now) he was in hypovolemic shock and they worked long and hard to stabilize him.

I will never forget the ride in the ambulance that day from one hospital to the next, watching the attending physician manually pump air into Segev's chest so that he would breath. 'Just a bump in the road could end all this' I thought, rather irrationally. But back then, during the surgery I remember feeling that in the end it would be alright. Some might call this wishful thinking. With so many years experience I have come to know my reactions and trust in intuition, listening to it with a stern discipline, to this inner voice and that is what allowed me to remain calm.

I have a decent feeling about this operation as well. There may be some hiccoughs but all in all I expect things to go smoothly.  Will be keeping people updated here and on facebook, as per usual.

Yesterday i took Segev to do a chest xray. What I see there (but I am not an expert) is a bit disturbing but I will wait to consult with the experts in hospital on Sunday and see if it changes anything. In the mean time Segev has returned to vomiting when he coughs, which is not helpful as it can easily lead to aspiration pneumonia. So we are hoping for the best, as they say.

August 11, 2012

Slow train coming

I’m still trying to figure this out, but the fact that the sentence was started with a form of “I” should give an indication as to what issue is being hashed out in my tattered brain.  It’s been one and a half years since Segev’s last hospitalization. What was to be one of many-and-the-same visits to the emergency room due to his seizures physically taking over his body to the exclusion of all bodily functions except for breathing, became a nightmare in the truest sense. His life was in danger, the causes of which I have written about several times, and apparently those weeks in hospital were timed in such a way as to propel me on a journey I wasn’t willing to embark upon, that  nearly ended up crushing my spirit and from which I am still recuperating. 

Then the death of my mother was a blow which I now know will always leave me with a deficit, a mental limp if you will. This process that I have been going through as a result of those experiences and the continued daily care of my catastrophically disabled son hasn’t had the effect of decimating my Will, my resolve, but it has forced a change which, looking back, I so hoped to avoid.

Change, if you didn’t know, is a kind of compromise, where often two forces meet and neither will be the same afterwards. I don’t look at this change as being either positive or negative and I think there lies exactly the lesson I’ve come to see in it.

My blog posts have dropped to almost nothing in this one and a half year period. I began to feel, for the first time, a reluctance to share about Segev’s life. It’s not that I was becoming concerned with possible affects from outside due to exposure as it had more to do with how I saw my role as Segev’s caregiver.

I’ve been concerned for so many years with being able to convey the positive in my son’s situation. The toll over these fourteen years has been immense, but also here I have written numerous times about that issue and will spare you all my river of tears over that. Being verily embarrassed by the severity of his health issues, because knowing that it is so difficult to relate to I have thus often tried to convey an understanding of his care as something which, while catastrophic, is an enriching part of life and one that needs to be shown in both its beauty and decrepit agony.

Now, in these days, I am left with neither the catastrophic element, feeling I have assimilated its content completely into my being, nor the pathos of a life, his life mind you, that while utterly and completely worthy of living is not living in the sense that 99.9% of the people out there could consider worthy of such attention.

The change has fermented a long time and has even been difficult to recognize due to the complexity of my family’s life and the immense concentration required to deal with issues in a way that could satisfy my mind.

There lies the problem of course, my mind, and its’ needs to understand and above all to influence, to effect change through course of action. Meeting with reality has seen those actions be rather coarse in its realization if not in its intent. So many things pressing themselves upon our conscious minds and yet I have seen glimpses of something, a barely recognizable influence that brought turmoil to my dreams and finally saw the light of day as a pondering,  ‘what about your heart Eric?’

Isn’t there some kind of flowing exchange  in life that must also incorporate that necessary element in order to achieve a better balance, a more graceful existence?
I have spoken with many on the subject and have even written pieces in newsletters, blog posts and above all, poems to impress that very need of expressing what the heart needs. Besides often preaching to the choir the effect my ponderings and conversations and writings have had, it seems, is above all for my subconscious to give me a way to exonerate myself from truly being in touch with what my heart needed. So instead of flowing more, I became more rigid. And the semblance of control that I had been able to maintain, of myself and of Segev’s condition, slipped through my fingers more and more.  

Segev’s health is failing, this I have known from day one. All of the above, what I have said, will not remove or diminish one iota of my determination to put everything that I am able to give at his disposal. What is clear to every carpenter though, that without the right tools you would be a fool to attempt to build a house, requires of me to be absolutely certain my efforts are being made with the right tools in hand.

I’ve built bookcases of discarded wood from a pile of rubbish with a pocket knife. Always looking for a challenge, a way to assert ingenuity and to create. But this ramshackle, hurdy-gurdy approach to life has its limits and I do not fear to tread over the boundaries of what is possible, which has brought me to the present condition. An extreme life, yes, with extreme accomplishments, yes. And somewhere, somehow, along the way, quite devoid of heart. Some would argue that last point with me, but that is, alas, my feeling.

There was a sentence that my mother used to say each and every time we spoke, until long after she could no longer speak it and writing and typing became near to impossible but still she insisted on repeating it, each and every time. The conversations grew shorter and more rare but still she persisted with this sentence and my already exasperated response, always the same. My mother often felt frustrated in life that she could not explain exactly what she meant because she felt it and often said that I could put into words what she was thinking.
She kept saying it. I tried to understand her point of view from different angles, putting aside how I related to her as my mother and just as a good friend might tell me this. I thought I had the perfect response because I absolutely believed in it. And my response was and still remains true and honest. What I didn’t see though was the layer of meaning that was hiding there, at least for me, invisible because it was so obvious.

“But what about you, Eric?” 

Her persistence was uncharacteristic and that fact made certain I wouldn’t leave it alone, wouldn’t categorize it and store it in my mind as one of those things you just will never understand from another person.

“This is what I am and I’m fine with it” always came the response.  And I am fine with it, now and always, for all these years. That won’t change despite the wear and tear both mental and physical, despite those that wish to cast doubt on such an existence (and there are plenty of those, who either leave or don’t understand).

But that thing about heart; about feeling a connection which turns out to be no less important or less real than issues of practical care, willpower or mental acuity, has to find its proper place in order for the whole process to not just survive but to truly surpass its mundane boundaries. I know it’s a process; there is no ‘end-game’.

Still, it should come as a surprise to those that know Segev’s journey that, the other day, with all that circulates in my head and sleeplessness as a modus vivendi I had a moment with Segev, where I gave him a treatment, as I continually do, of pressing and massaging his dislocated joints and massive kyphosis and he relaxed ever so slightly into the treatment, as much as he can, and smiled a little bit in acknowledgement of the relief, and I felt my soul sighing, lightening the load ever so slightly, as though I was content. And I was.

And that’s probably not the only thing I’ll have to say about that.