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.

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