Ashley Danielle Photography {blog}: August 2014

8 weeks after we came so close to suddenly losing our 6 year old son, Jackson, my family and I are just as confused as the day we sat in the hospital pediatric surgical waiting room, praying to God to protect our dying son. The reality that no doctor or specialist has a definite diagnosis for us scares and frustrates us more and more every day. What can be done that hasn't been done? Will this happen again? Can we guarantee this was a one time ordeal? WHAT HAPPENED TO OUR CHILD??

It is our dream to get answers, so I am seeking any advice and/or knowledge from the public. Perhaps this reaches that one specific person who has seen this rare case and can answer our prayers, giving us more insight as to how and why this happened. However, the likelihood of that happening is so slim. As a very paranoid mother, I can only keep the faith that this case will not close undiagnosed.

This past Father's Day was a day I will never forget. June 15, 2014 will forever haunt me and my husband. The days and hours leading up to our emergency may or may not be relevant, but here is the sequence of events:

Thursday, June 12th: First Grade Field Trip to the Tide Pools at Lincoln Park in West Seattle

Kids were chaperoned into small groups with parent chaperones

No one directing the children; freedom to roam and touch

Based on some parent feedback and Jackson's knowledge, the children saw and touched the following: clams, algae, star fish (dead and alive), sea urchins, sea anemones, crabs (dead and alive)

Friday, June 13th: Sporadic Stomach Pains Begin

Jackson is picked up from school at 2:00pm and occasional complaints of stomach pains begin and continue throughout the day

Appetite beginning to slow down

Saturday, June 14th: Stomach Pain, Nausea, Vomiting, Loss of Appetite

Jackson woke up feeling a little off; he did not want breakfast

Jackson threw up in the morning after having a cup of orange juice

He felt better by swimming lesson time at 10 am

During his swim lesson, husband and I noticed bloating in his belly and even made mention of it to each other

Throughout his 30 minute lesson, Jackson was not performing up to his ability

As soon as it was over, Jackson ran to the bathroom with the sudden urge to vomit: nothing was able to come out but he soon felt a bit better

For the remainder of the day, sporadic stomach pains continued, slightly worsening, but overall feeling and acting normally

Sunday, June 15th: Father's Day, Emergency Surgery Day

Jackson woke up, acting well: he ate a good breakfast

11am: We headed to Acme Bowl as a family (30 mins away)

- Jackson complained that his "belly REALLY hurt" and he chose not to eat with us

- He wanted to continue bowling, and did so with a big smile on his face

1pm: Headed back home where Jackson started screaming out, crying, that his belly really hurt

2pm: Jackson lays down with his dad for a couple hours to rest

4pm: Jackson goes from bad to worse. I have never seen him in so much pain before. He was screaming out, body completely straight saying he could not sit up or move. He was yelling that he needed to throw up and poop, but every time we went to go to help him up, the pain worsened. We took a look at his abdomen: we've never seen it so large and bloated before. We immediately react. This was serious.

Dad takes Jackson to the nearest Urgent Care/Emergency Room while I arrange child care for my younger 2.

Jackson is seen right away. They immediately call in for an ambulance to transfer him to the nearest children's hospital (30 minutes away). While they waited for transportation, an X-ray was performed.

5:30pm: Ambulance transports Jackson with dad by his side. He is in so much pain, he goes into shock, morphine was given.

I arrive at Mary Bridge Children's Hospital shortly after Jackson. His pain was unbearable. One minute he would be passed out, the next he would be screaming out in pain, not knowing what to do with himself.

7:15pm: The ER doctor calls in the pediatric surgeon, Dr. Escobar. At this point, we have no idea what was going on. Jackson was getting a second IV line, tube down his nose to release air, anal exam… all at the same time.

7:30pm: We are told Jackson has Acute Abdominal Compartment Syndrome and the X-rays showed his colon was distended... Toxic Megacolon. His skin was mottling, which was a sign his circulatory system was beginning to shut down. The surgeon gave us 2 guarantees: one, Jackson will have an incision from the top of his abdomen all the way below his belly button, and two, that he will need to stay open for at least a few days until the swelling goes down enough to close him. By the appearance of his X-ray, the surgeon was not entirely hopeful that he could save his colon; we had to be prepared for him to remove it. Would our son ever be normal again? Someday, yes, but no guarantee how long that would take or what that would entail. Jackson needed surgery right away. There was no time to waste, not even time to perform a CT scan… we were about to lose our son.

7:45pm: Jackson is back in surgery.

I cannot describe to you the pain me and my husband, Cameron, felt during all of this. Seeing our first born son, who has been incredibly healthy throughout his entire life, in a hospital bed, dying, was a complete nightmare. NEVER have we experienced so much shock and heartache in our entire lives. Sitting there, waiting for news, ANY kind of news from any nurse or doctor, was the longest and most horrific hours you can ever imagine. Things could go either way and imagining the worst, imagining what was expected, was unbearable. Jackson is such an amazing child: such a warm hearted soul. I would have traded places with him in a heartbeat. All we could do was wait and pray…

10:30pm: Surgery is complete. Dr. Escobar comes in with a smile, "I closed him."

Details of the surgery:

As soon as Jackson went under, his body released a horrible smelling, toxic gas.

When the catheter was inserted, no fluids drained.

Because his body voluntary released some gases, the surgeon was able to make the incision smaller than planned.

As soon as they opened him up, his colon literally popped out.

Acute Colonic Pseudoobstruction is what they determined with his colon. It was filled with this toxic gas and the only way it was releasing this gas was if the doctors manually compressed it out.

Retention of Urine: his bladder appeared like an "80 year old man's"; stretched out, weak, retaining a large amount of fluid. The only way the bladder would drain was when the doctor, once again, compressed it out.

There were no signs of trauma; nothing else appeared wrong.

After his bladder and colon were compressed, it was like a miracle… his abdomen began to flatten and THEY WERE ABLE TO CLOSE HIM!!!

Jackson remained sedated and intubated for the next 2 days. At first, it appeared that his involuntary muscles weren't wanting to perform as expected. We had many doctors on his case and they first wanted to rule out anything neurological. An EMG was performed during the 2nd day of sedation and he passed that, along with all other neurological testing.

Routine bloodwork and labs continued coming back normal.

48 hours after surgery, Jackson was extubated. No concerns there.

Day 3 and 4, Jackson shocked the doctors with his progress. He was up walking, talking, eating. Overall, he was doing amazingly well!! Never in a million years did any of us, especially doctors, think he was supposed to recover like this. But, test after test, evaluation after evaluation, we continued to hear, "I've never seen something quite like this. I'm stumped." As they continued to rule out possible diagnoses, the likelihood of knowing what and why this happened seemed to be slipping away.

Friday, June 20th: Jackson is Discharged- Possible New Lead

On the 5th day, Jackson was doing so well, he was getting discharged!! From day one we believed we were going to stay anywhere from 2 weeks to maybe even months, so this was an absolute miracle. Just 20 minutes from walking out of that hospital room, a new face came in with some interesting news…

Another pediatric surgeon, Dr. Pohlson, had been graciously working on Jackson's case. Like many of the doctors and specialists, the field trip taken to the tide pools just 24 hours prior to Jackson's first symptoms was constantly in the back of their minds. And, as more time went on, what happened to Jackson appeared to be more of an exposure than a disease or syndrome.

After reporting the details of the events, Dr. Pohlson took the case nationwide and soon there was an urge to isolate Lincoln Park and perform necessary testing. We were now questioning whether or not Jackson could have had some sort of PSP (Paralytic Shellfish Poisoning) or something of the sort. Could this have been a anticholinergic reaction from a toxin in the waters?

Immediately, Dr. Pohlson contacted the emergency line of the Department of Health of Seattle. She spoke directly to the epidemiologist in charge and expressed her concerns. We held onto hope that the department would take our son's case serious and perform testing, not only for us to get some answers, but to possibly save the life of another innocent child. Toxins don't live forever; 2 weeks at max. So, yes, time was of the essence.

As Jackson improved day by day at home, there was no isolation of the beach; no testing was performed. Soon, the 2 weeks were up and the Department of Health continued to neglect the concerns of a professional. We will forever be frustrated with the way things were handled. We thank Dr. Pohlson for putting so much time and effort into urging the DOH to act, but she could only do so much.

We continued taking care of our son and continued with routine testing.

2 weeks after Jackson was discharged, he had an Upper GI and a Lower Contrast Study performed. We got the results almost immediately; Jackson looked PERFECT!! No one could believe it. His colon was performing amazingly well and there was not a single sign that something was off. For his body to go through so much trauma just 2 weeks prior, it is just a miracle how good he looked after the GI tests. And, because of that, the planned colonoscopy and colon biopsy were cancelled! What a relief.

As of today, we are being followed clinically by his surgeon, Dr. Escobar, and his gastroenterologist, Dr. Pickens. 8 weeks later, Dr. Pickens believes this is one of two things: Ogilvie's Syndrome (which is appearing less and less likely as the weeks pass and Jackson shows no problems) or a toxin ingested from the tide pools. Dr. Escobar can't diagnose him 100% without the actual proof, but he believes they have exhausted all other explanations, so it is very safe to assume it is a toxin.

Frustrated. Scared.

That is exactly how Cameron and I feel. Every day that passes we hold on to the hope that one day someone will tell us exactly why this happened. I cannot accept the fact that we may end up "assuming" the cause. How are we supposed to live our lives normally, believing that this could very well happen again? We are so scarred from this traumatic experience and having a clear cut solution would ease so much pain.

If at all you have any insight please do not hesitate to comment or email. And, please, consider passing this along to anyone that may be able to help. Thank you in advance… this kid of ours deserves the world and more!!

And, finally, we have to thank this man. Dr. Escobar, without you, we very well could have lost our son. You found a way into our hearts from the moment we met you and we will always be thankful for God putting you into Jackson's care. There is not a day that goes by where I don't wish I could give you a big hug and just thank you over and over again for saving Jackson. I know you were just doing your job, but to our family, you are our hero.

UPDATE: August 18, 2014:

Thank you for reading and sharing Jackson's story. This has gotten so many views and I am receiving a lot of feedback, along with many questions. And, yes, I am getting communication with both the State Department of Health and King County Public Health. Nothing much to report on just yet though.

I do want to stress something. I may have come off as if I was pointing my fingers entirely on the possibility of a water toxin. That is not the case. I understand that the only documented cases of PSP is through digestion, and we want to believe my 6 year old wouldn't eat anything he wasn't supposed to, but what if we are wrong and someone could very well get PSP through ingestion. We don't know that for sure. And besides PSP and DSP, there are many other water toxins that could have played a role. What about the newly discovered Starfish Wasting Syndrome that no one can explain? All in all, there could be many possibilities, so please stop dismissing the likelihood that my son picked something up exactly 24 hours prior to his first symptoms. Here is what I most recently wrote to the DOH:

We have found ourselves extremely busy with our recovering son and tending to his doctor appointments/testing that we were unable to do our own investigating until recently. Dr. Pohlson became our advocate and we hoped that was enough to get specific answers. But as the weeks went by and we continued to check in with her (who wasn't our direct surgeon and who is very busy with her own patients), we realized we were left in the dark with everything that was going on.

Dr. Pohlson is a professional diver and presented this to the Diver's Association along with other doctors. Whether there is any validity in this or not, there was a lot of concern and questions if Jackson could be the first documented case to contract PSP/DSP/ASP through ingestion, not digestion. The excitement she felt in possibly pinpointing what happened to my child the day we got discharged was the first real breakthrough, so I gave her permission to act on our behalf and possibly find the answer.

I am not educated whatsoever on marine life. So, it is difficult for me to sit here and point fingers. But, I am just overly confused. I have one side, the medical professionals working with our child, exhausting every possible syndrome and disease out there, feeling very confident that this all began that day at the tide pool field trip. But, on the other hand, I have those experts in marine life and water protection trying to convince me that there is no way possible my son got sick from the waters in Seattle. As a mother, I feel torn. I hope everyone understands that.

If at all you can answer something for me… my son does suffer from mild anxiety. His most recent tic when anxious/nervous is to repeatedly touch his mouth and nose, many times smelling and licking fingers. Just say there was some sort of shellfish poisoning in the waters that day, would it be possible at all for him to contract it through his anxious behavior??

5 day new, Deason, came to my home studio here in Maple Valley last week for his newborn session. Mommy is a photographer herself, so I was really flattered that she chose me to photograph her little one. It is really hard to understand how intense newborn photography can be until you are actually present for one. I have so many parents leave a newborn shoot with the thought of, "Wow… I didn't know it took that much." Yes, it sometimes does. We can't force our newborns to sleep when they don't want to sleep, pose when they don't want to pose, and not pee or poo when they need to pee or poo. Getting a newborn that doesn't open their eyes for the entire 2-3 hour shoot (yes, it is completely normal to take 3 hours for a newborn session) is like winning the lottery for the photographer… it just rarely happens. Those cute, peaceful poses don't always come easy. And patience is a virtue!!!

With that said, during the first half of the shoot, mommy started to get very nervous that Deason just wasn't going to have anything to do with it. But, as I always promise, photographer always wins!!! Mom and dad were great sports and were so patient with me. I am glad they kept the faith that I was gonna get it done. After a big fight from this strong little guy, we got it. And boy did we get it good… I have so many favorite shots!