|Segev plays a faux recovery on Saturday|
I was up last night, more than usual, tense and at the ready as usual since Segev is once again sick, but surprisingly not upset . His lungs again (for a full description see Segev’s facebook page).
I would not be surprised if you were to find it a reasonable thing if I tell you that I have thought of Segev’s end a thousand times. But the truth is, I have never thought about it. Never think about what will be after Segev either. We are in the fight, quite simple.
I’m not certain when the big double pneumonia will come along that will be too much as is the case for many, many children, who like Segev are multi-complex disabled, medically fragile and, significantly, suffer from Ohtahara syndrome.
Back in 2005 when Segev’s bowel ruptured while the hospital waited too long to address a complete blockage in three places, due to adhesions which had formed as a result of the previous year’s surgery to place a g-tube for feeding, after the massive blood loss and transfer to another hospital’s PICU where Segev remained in critical condition, twice being revived on the operating table, and we were given ‘less than 50% chance’ that he would survive, he pulled through and was transferred back to the original Hospital. There we stayed for another two weeks, Segev waking up after ten days in coma, but despite three antibiotics, one intravenous and two through the g-tube, his temperature would not drop below 37.7 C, while his normal level had always been 36.6 C. That rise in base temperature, by the way, stayed with him for the next six years.
I began to worry that he might develop sepsis despite the heavy regimen of antibiotics since after his small intestine burst in three places the entire content of his bowels washed out into his abdominal cavity. Cultures taken remained positive for pseudomonas aerigunosa after ten days, which only strengthened my fears.
I researched whether there were clinical signs or laboratory markers which could be tested for to determine if he was developing sepsis and at the time found a particular large scale research which was done in the emergency department of a children’s hospital where they looked for biomarkers to associate with children who were either suspected to have or known to be in sepsis.
So this was a real world scenario, actual children who were actually sick, many of them in life threatening condition. They did find significant specificity in the immature-to-total neutrophil ratio (ITR). Those with suspected sepsis (sepsis was regularly a diagnosis of elimination rather than cut-and-dry) that went on to develop sepsis had a particular range within the ratio and especially those with confirmed sepsis were in this range.
I requested the latest results for Segev and saw that he was in the lower end of the “danger zone” of the ratio so I went to the chief pediatrician, who specializes in infectious disease and who I had known for years as my children's doctor, and cautiously presented him with my concerns, citing the research, that perhaps the chosen antibiotics were not doing the job, or that another mechanism was at work that needed to be investigated. He looked at me, put his hand on my shoulder, smiled like I was a confused five year old and said, “That’s in theory, in books, not in the real world”. Boy, was I reassured!
Segev’s treatment continues, to the best of my ability, and I immediately sent his mother to the clinic with a sample of phlegm to rule out either pseudomonas or klebsiella, both of which colonized his lungs years ago, in case they are present in sufficiently obvious amounts to warrant antibiotics. The antibiotics are just sufficient in Segev's case as to allow his body to regain the semblance of balance and continue to fight another day.
Unfortunately I did not have a pre-sterilized cup at the ready for the sample; these things require proper organization and with the complex medical needs of my son there is always one small yet crucial detail that slips through the cracks. So I sterilized as best as possible a new out of the box medical measuring cup and deposited the suctioned phlegm in there. Unfortunately upon arriving at the clinic and asking for the official sterile cup to transfer the sample to, the technician asked ‘where is the sample then?’, and his mother showed her. This resulted in her stating protocol does not allow her to accept it. Without questioning Segev’s mother disposed of the (sealed) sample.
On the phone she told me what had transpired. Seething, I asked to speak to the technician, who I have known for 15 years and began to explain that while protocol has its reasons, waiting until tomorrow to give another sample (the lab accepts only until 10.00am) would mean going the entire weekend without knowing if he needs antibiotics and that could result in hospitalization. She tried to explain to me how contamination of specimens works (really?) but I countered that the second a person places their hands on the container and unscrews the lid, fingers touching the edges of the cup, could equally result in contamination. As well, that since the colonization was a known entity with Segev only those two culprits would be relevant and likely to multiply to numbers significant enough to show up on the test. She accepted my reasoning and hopefully will have results before the physician closes shop for the weekend, Friday morning.
And so it goes.