Memoir of a Raw-Milk-Illness-Turned-Medical-Nightmare, Part 1

bigstockphoto_The_Dropper_For_Intravenous_In_1228281.jpgI thought we were probably drawing to a close on the enlightening discussion about the episode of young Chris Martin’s near-fatal encounter with raw milk and the medical system. Now, Mary McGonigle-Martin, Chris’ mother, has revealed that there is a good deal more to explore, in the form of a detailed chronology of the events surrounding Chris’ illness, written by her and her husband, Tony Martin.

It’s fairly long by Internet standards—some 14 pages—but it reads nearly like a novel, a very scary novel. (And while bite-size is generally preferable to lenthy on the Internet, one of the Internet’s beauties is that it does allow for lengthy in appropriate circumstances.)

I have debated with myself as to how to handle this chronology—whether to try to summarize it, abridge it, or just publish it as is. I have decided to publish it as is, since its detail about events, decisions, and feelings is so remarkable. A warning: some of it isn't very pretty.

I am publishing it in two parts, since it breaks neatly at about the half-way mark. Part 1 follows this introduction. Part II will be published tomorrow evening.

(The main editing I have done is to remove doctor names, at Mary’s request, since the Martin family is still de-briefing with some of the medical people mentioned, and the family wants to respect their confidentiality and retain their confidence. I have also edited out statements of accusation against specific Kaiser officials, and speculation about their motives.)

I don’t want to pre-judge too much here, since I suspect many of you will have your own reactions. Suffice it to say, the Chris Martin situation is much less about raw milk and much more about the workings of our healthcare system than I appreciated at the start of this discussion.

HERE IS PART 1, "Timeline for Christopher Chase Martin":

9/1/06 Purchased (raw milk from health food store).

Also purchased organic spinach and green leaf lettuce. The spinach is from an open bin, not packaged. (The e-coli spinach was packaged.)

9/2 Chris consumes raw milk.

9/3 Chris consumes raw milk.

9/4 Chris consumes raw milk, lettuce and spinach.

9/5 Tuesday: Chris develops a headache and a fever of 101 degrees at approximately 5:00 p.m..

9/6 Wednesday: Chris wakes in the morning with a fever, eats sparingly, does not attend school. He is lethargic all morning, sleeps from 12:00 noon until 3:00 p.m.. After his nap, he appears better, eats a normal amount of dinner. At bedtime he has a loose bowel movement and also wakes up during the night and again has a loose bowel movement.

9/7 Thursday: Chris eats a light breakfast and shortly thereafter begins a regimen of loose and watery bowel movements until noon. The pace of the bowel movements increase thereafter, presenting approximately every 15 – 20 minutes. He also vomited at 10:00 a.m., 12:30 and 3:00 p.m..

The diarrhea became so common that Chris began counting every trip to the bathroom. The 16th bowel movement was primarily slimy mucus—no feces.

The diarrhea and vomiting continued throughout the afternoon and into the evening. At 8:00 p.m., we noticed what appeared to be blood in his stool. We lined the toilet with a plastic bag to capture the next stool—however, this next trip to the toilet netted only blood (approximately 1/8 cup).

At 9:30 p.m. we arrived at the Emergency Room, Kaiser Hospital, Riverside. The vomiting continued; stool, blood, and urine samples were taken; an I.V. was inserted. Chris was given an anti-vomit medication to help him sleep in the E.R..

9/8 Friday: Chris is admitted into Kaiser Hospital, Riverside, at approximately 5:00 a.m.. Later that morning is the first time we meet Dr. A. He arrives with two resident doctors and we hear a very specific explanation regarding his thoughts about presenting symptoms.

He explains to the residents (and to us) that the presenting symptoms do not allow a determination of bacteria or virus. He states that the blood and urine samples continue to come back negative. He also informs us that the stool “cultures” will not be available until Monday or Tuesday.

He examined one of Chris’s bowel movements and overruled the possibility of salmonella, due to lack of darkness and lack of mucus.

He also stated explicitly to the resident doctors that at no time should Chris be given antibiotics until the cause of the presenting symptoms is identified. He stated that giving antibiotics could make things much worse if this is e-coli.

(Note: I spoke with P.U., Health Plan Representative, on November 20, and she stated that Dr. A’s concerns about antibiotic administration are written into the record.)

Dr. A also stated that morphine could not be administered for my son’s cramping because if it was a virus it could cause him to become constipated.

Chris continued to have diarrhea every 15-30 minutes for the entire day and evening. He began to experience cramps with each trip to the toilet. During this day, the vomiting, cramping and diarrhea was manageable.

9/9 Saturday: All presenting symptoms continued throughout the day. Chris vomited before each bowel movement. He was in severe pain.

In the morning, the attending physician wanted us to attempt a food and water challenge. Chris threw up the applesauce and water shortly after consuming it. Shortly thereafter, Chris began experiencing a severe pain on his right side. Doctors suspected appendix. They ruled out appendicitis after two CT scans, but did note an inflammation in his bowel. (After consultation among several doctors) the first antibiotic (was ordered): Flagyl. TPN was also ordered for nutritional purposes.

During this night, Chris basically sat on the bedside toilet, pillows propped all around him, my wife and I holding him, suffering from the constant urge to defecate. He also developed a rectal prolapse.

9/10 Sunday: In the early morning hours, nurses urged us to request transport to Fontana’s pediatric unit, suggesting that a higher level of medical care was necessary for Chris. We heeded their advice. We requested to see the attending physician at approximately 4:00 a.m., and made our request to be transported to Kaiser, Fontana.

We arrived at Kaiser, Fontana, at approximately 1:00 p.m.. Within a couple of hours of our arrival, a sigmoidoscopy was completed by Dr. F. He diagnosed ulcerative colitis and did a biopsy. He informed us of his conclusions.

Mary, mother of Chris, specifically addressed the diagnosis by asking Dr. F if colitis was the primary cause of our son’s symptoms or if it was a secondary cause. Dr. F stated that it was the primary cause and that he must have had a virus that triggered something genetic.

Mary informed Dr. F that Chris had never experienced any bowel issues in his past. Dr. F stated that the colitis had probably been there dormant, but that it “was odd that the symptoms did come on so quickly.”

A second antibiotic was ordered: Claforan.

Within hours of arriving at Kaiser, Fontana, Chris now had the following items flowing through his intravenous feeding tube: TPN, saline solution, and two antibiotics: flagyl and claforan.

(Note: Up until our fateful trip to Kaiser, Fontana, all blood tests were negative. In fact, his blood work was normal. (There seemed to be a) lack of continuity between doctors in the Kaiser system...Within hours of hanging the antibiotics, everything changed.)

9/11 Monday: At 6:00 a.m., blood has been detected in my son’s urine. A final bowel movement is released at 10:30 a.m., which amounts to a mammoth flow of gold liquid gushing out of his rectum, overflowing his diaper and filling a 3x3 absorption pad on the bed.

The attending physician, Dr. U, came into the room shortly after this final bowel movement. The pad lay on the floor. My wife looked at the doctor and said: “Something has changed. A major change has happened. We haven’t seen this before. This is something new…” and she pointed to the pad on the floor.

Dr. U told us that we had a very sick child. She told us that he may have to be moved to the pediatric intensive care unit at Kaiser Sunset and that his illness may involve kidney dialysis. She told us that she was waiting for the next round of blood tests to confirm her suspicion. She ordered a catheter be inserted into his penis for the collection of urine.

Dr. U returned within the hour. She officially diagnosed Chris with HUS. She informed us that we would immediately be flown to Los Angeles, CA, Kaiser Sunset, where Chris would be admitted to Pediatric Intensive Care...

His timeline from normal blood labs to HUS diagnosis was within hours of the second antibiotic being administered. See: The New England Journal of Medicine: Volume 342; Number 26; June 29, 2000. The risk of the hemolytic-uremic syndrome after antibiotic treatment of Escherichia coli 0157:H7.)

Mary and Chris arrived at Kaiser Sunset at approximately 1:30 p.m.

Tony arrived by car shortly thereafter. The attending physicians informed us about the possibility of kidney dialysis. They suggested that some children do not require dialysis, that if Chris continued peeing and his urine turned yellow, it would be a positive sign.

A central line was placed in our son’s right shoulder. This would be used for blood draws and the administration of meds and nutrition. We were told that this central line would have to be x-rayed to determine if the placement was correct before it would be used. An x-ray was ordered, but it took over four hours for the x-ray technician to arrive. In the meantime, nurses were already using the central line. (We questioned the use of this line prior to determining its correct positioning in our son’s heart, but received an explanation that the doctor had approved its use without the x-ray—opposite to the information regarding its use prior to placement.) Our anxiety was now beginning to climb.

9/12 Tuesday: On this day we met with Dr. P... She talked about HUS and also discussed the medical requirements for Chris to receive dialysis. They included a BUN of over 100, creatinine over 5.0, and renal failure. We were also told that Kaiser Sunset does not do kidney dialysis; that if our son’s condition does reach these benchmarks, he would then have to be moved and admitted to Children’s Hospital, Los Angeles.

We spent the remainder of this day watching our son’s urine output slowly dissipate, while his energy level followed close behind...

9/13 Wednesday: Dr. P greeted us with a diagnosis of Shigella. She stated that the lab had not isolated the bacteria, however they had found shiga toxin. She explained that shiga toxin is the by-product of Shigella dying off. Of course, the antibiotics killed the shigella, if it was shigella, in our son’s body, resulting in the toxins being released in his body, which is why antibiotics should not be administered. (Both E-coli and Shigella emit shiga toxin as they die. Nephrologists at Loma Linda Children’s Hospital questioned the diagnosis of Shigella without isolating the bacteria since both e-coli and shigella emit the same shiga toxin. In fact, nephrologists at Loma Linda speculated that Chris had e-coli because the other HUS patient, Lauren, having consumed the same milk, on the same weekend, did test positive for e-coli...

Dr. P also explained, compassionately, that our son’s condition would get much worse before it got better. She stated that these shiga-toxins would now march through our son’s body for the next 10 days. Only then would we be able to assess the long term damage.

We spent the day monitoring urine output. It was clear that our son’s kidneys were shutting down. Every benchmark was being rapidly approached. Tony questioned Dr. P on this day, asking her why we had to wait until our son was drowning in toxins before we could help him with dialysis. Her response was dry and bureaucratic: “Kidney dialysis is a serious intervention with new risks attached to it.”

We had spent the last two days watching our son being loaded with fluid and (drugs). Chest X-Rays were ordered and Dr. K informed us that fluid was now gathering on his lungs. Again we wondered about dialysis. Why were we waiting to meet these absurd benchmarks? Dialysis could draw off these excess fluids, as well as lower his BUN and creatinine.

We spent the night watching our worst nightmare unfold. Each hour we measured his urine in the container next to his bed. Each hour it lessened. By morning, nothing. No urine output. Kidney failure.

9/14 At 8:00 a.m., Chris had officially met the benchmarks: BUN—102, creatinine—4.9, kidney failure, and his hemoglobin was 7.1—he would need a blood transfusion. We were told that arrangements were being made for his transfer to Children’s Hospital.

We waited for hour after hour. We kept questioning the doctors. What’s the hold-up? It’s been five hours. Our son needs dialysis. He needed it two days ago. No one had an answer. No one seemed to care.

Finally, at 1:30 p.m., word came. But it was not what we expected. We were informed that Children’s Hospital did not have a bed for our son. Mary collapsed into a bedside chair. There would be a delay. Dr. K told us that they were going to contact UCLA Medical Center to see if there was a bed available.

Tony realized that he could no longer watch this slow-motion, bureaucratic nightmare called “Kaiser Critical Care” attempt to function. He insisted that our son be sent to Loma Linda University Children’s Hospital...

To be continued...