December 26, 2007

The big moment has come. I went to our health clinic where over time the medical and administrative staff have gotten to know me. Perfunctory is often the best description i can give for the care that we receive there. As will later become apparent, i am very demanding where Segev is concerned and they have been  accommodating because it has become clear to them that i am acting to prolong the life of my son with knowledge and dedication. 
The nurse went through the procedure of sterilization and administration of the antibiotic, as an injection into his thigh. Being an acupuncturist for seventeen years I felt no qualms about putting a needle into my sons body. Just the opposite, i felt that with me in control i could probably accomplish this feat with as little distress as possible for Segev. I was only half right. 
Despite my experience the sterilization technique is more intricate and involved than i was used to. The first shot was given by the nurse and Segev was held by his mother who immobilized his legs. The needle is still too long and too thick, i thought. Its known that this material to be injected burns considerably so we discussed before hand that a slow injection was desirable. Which was wishful thinking. 
Segev weighs only 14 kilograms. But it takes the full strength, and i do mean full, of a sixty kilogram person to hold him. He is so strong, that you cannot imagine. While it may sound like a cliché, all good cliches started out as someone's truth and Segev's truth is that he is fighting for his life and that is what he did. He doesn't know how to direct his energies but he showed us his will to fight and a very quick injection was the result.

Whenever he suffers pain, it is terrible for me. After ten years of seeing him suffer severely i know that i will never get used to it, and that too is a good thing because otherwise in my complacency i might actually think that the fight is hopeless. I don't care if the fight is hopeless, its our job to give a good fight nevertheless. It is of course in the fight that we find meaning because the end result is irrelevant.

Now it hit me; i'm going to have to inject him three times a day and there will be times when i am alone with him. No one else to help hold him. But i found a way as you'll soon see. Another complication was the fact that while i received special authorization for this in home treatment, to inject Segev they wouldn't agree to let me mix the saline solution with the antibiotic, which comes sealed as a powder. This meant going to the clinic twice a day to mix enough each time for two shots. Also for this I 'bullied' my way into getting special authorization. In the end i was just trying to be nice to the nurses and let them follow protocol because the medicine was in my home and what i did with it there is my business.

I bought the antibiotic and also obtaining those vials called for special measures. The antibiotic was supposed to arrive at a central pharmacy on Friday, about a forty minute drive. I spoke to the pharmacy in the morning to confirm that it had indeed arrived. The driver is on his way over, they told me but when i arrived the shipment did not include the drug. After some frantic phone calls the pharmacist found another shipment which had gone out to another pharmacy about a, yes you guessed it, 40 minute drive away. In a showing of caring the pharmacist convinced the other pharmacy to meet me half way as the pharmacist there was leaving work soon and coming in our direction on his way home. Highly irregular behavior but very humanistic.

I arrived at the meeting place but after some phone calls i was told that he hadn't left work, nor would he any time soon and i had about twenty minutes to reach the closed pharmacy. s

So off i raced to Haifa and retrieved the drug that we would need first thing sunday morning. I left the house at ten o'clock and i was home at two.

Three times a day of screaming was still preferable to hospitalization i kept telling myself. And it went well, all considered. There were times when he was asleep; the third injection was at midnight. He would wake with a seizure from the injection, but that covered most of the pain and he would go back to sleep. My oldest son would sometimes help hold Segev the other times and my daughter was exceptionally willing to help which i find fills me with pride. Because for a twelve year old girl, to hold her little brother down and see the injection is no easy task. Which reminds me of the time Segev was in intensive care on a respirator, hanging between life and death having been revived numerous times after the operation wherein his intestines burst open in three places and not knowing if he would make it i took them both into the intensive care to see Segev because he was unrecognizable and it seemed to me of the greatest importance that they witness that but that is another story for another time.

Midway through the week i broke down despite the relative success of the procedure because it was on occasion very traumatic for everyone and not always was it possible to hold Segev's leg still. The needle has at the end such a sharp flattened edge that when he starts kicking violently the needle goes back and forth inside his leg, cutting his muscle just like a tiny knife. So i looked for a way out and found a compromise. According to research and clinical practice two doses has demonstrated to be effective and so i decided cautiously but with a great feeling of relief to reduce the treatment to two daily doses and extend the number of days so that the total amount of antibiotics would remain the same.

December 23, 2007

Hopefully this new thing, this weblog, will help me to focus a bit on writing down the story of Segev, my youngest son. There can be no doubt that every person who knows Segev well is convinced that he is something extraordinary and that as much as it is my responsibility to care for him, it is my responsibility to preserve some of the experiences with him. After nearly ten years of struggling to keep him alive, it is about time that i become fully focused in this endeavour because my memory grows dim and too often i've kicked myself for not having written down what struck me as being so significant at the moment.

I just want to recap the last two weeks in short order, perhaps more note taking than recounting in prose yet another traumatic period. The prose will come later I'm certain.

Since his chronic lung infection with both Klebsiella and Pseudomonas and the fact that Ciprofloxacin has become ineffective (as well as being contraindicated because of his multi-epileptic state) the only option, after putting it off for months, struggling to keep him healthy, to lower fever, to kill bacteria with Oregano oil, physiotherapy as often as five times a day, homeopathy, inhalations three times daily and so much more, the only option remaining is Fortum by way of vein. But there you have it again. That catch-22. All of his tissues are weakened and every hospital stay has always been a merry go round of doctors trying to catch a good vein, that will actually last 24 hours. They either break immediately or shut up before the day's gone by. Never the less i was convinced after so many near death experiences, especially in hospital that i would not allow him to become endangered anymore by careless, lackadaisical physicians or nurses and so antibiotics at home would have to be the remedy.

On Sunday the experienced pediatrician tried three times to start an iv. Each time she succeeded in entering but removing the needle resulted in a torn vein.

The next day I packed Segev, his oxygen, his pulseoximeter, his suction, emergency medicine kit, emergency overnight bag, wheelchair, gastrostomy feeding kit into the car and together with my daughter we went to hospital. There a talented doctor succeeded in putting in the iv in one go. All together the trip took three hours, not bad at all.

Tuesday morning the nurse from homecare came to instruct me in the use of the special patented orbs that secrete the antibiotic over a 24 hour period. I started the treatment.

Wednesday morning a trek to the neurologist to turn off the implanted VNS device. Five hours.

Unknowingly tuesday night the iv tube was making it's way out and by wednesday afternoon (in the mean time he was at his mother's) it became clear that his arm was swollen from the antibiotic seeping into the surrounding tissue instead of the vein.

Thursday morning first thing off to Hospital, not the emergency department, because that would mean admitting him, but the pediatric pulmonary clinic. Not the professor nor the talented doctor were present so another one was nice enough to try and 'reinstall' the iv. I'm skipping a lot of details here of course, you understand. The waiting time, running around, the phone calls, the seizures, feedings in between etc. etc. He tried and almost succeeded. Tried again and succeeded but the nurse didn't hold his arm firmly enough and so it came out. The third time was a disaster. I wanted them to use a local spray to anesthetize the spot but the spray had finished already the previous visit and they hadn't ordered a new one. So i took out my lighter and sprayed the butane on his arm but the doctor indicated to me where he wanted me to spray but then stuck the needle in a different place. Segev was again screaming from pain, his only verbal tool. The fourth try went well. It was in. Dry his tears, pack everything up, make more phone calls to once again get authorization for homecare and go home.

Friday morning it was out. So, to go to emergency room ( the clinic doesn't operate on Fridays) and spend the weekend fighting young interns who don't know and don't care or to stick it out at home and wait for Sunday and go to plan B. Plan B is injections given at home. No a nurse doesn't come to the house three times a day ( that's how many he needs), I have to do it. Three injections a day for at least seven days. I decide to wait it out and take him to the regular clinic sunday morning to get instructions, authorization and equipment to begin that treatment.

more later.