Wednesday, August 13, 2014

Acute Abdominal Compartment Syndrome: What Happened to Our Child?

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 parents 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 and 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 at us 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, so 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. 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 would go down and they could go back in and close him up. 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. 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.
  • 8:00pm: 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.  

Monday, May 27, 2013


We are absolutely in love with our little guy. I will have a birth story and some more photos to share in the next coming days. Mommy and baby are doing perfect!!!

Sunday, April 21, 2013

BIG Changes...

It has been about a month since I lasted posted, but I'm still pregnant!!!! I am approaching 35 weeks and I can't believe the baby will be here in a month! It's crazy how quickly things seem to be moving now. It has been a very long journey to get to this point, and I feel so blessed that I will finally have my 3rd and final baby in my arms soon.

Health wise, we are doing great. The baby is doing perfectly and staying very comfy in there. Oh, and we still don't know what the sex is!!!! I swear I think something different every day, but it's not driving me crazy yet. I think this not knowing thing is so much fun! Boy or girl, we are just going to be so surprised!!!

Here is me last week...

Onto non baby related news, we are moving out of the state shortly after baby is born.  Hubby got an amazing job opportunity that he could just not pass up. This was all so unexpected (talk about horrible timing), but in the end, we are all so very excited about this new journey of ours.  I have a very stressful couple months ahead of me, seeing as the husband had to move up there without us last week =(.  That was the hardest goodbye ever!!  We will not see him for 4 full weeks, but so far I am managing just fine.  My boys are being amazingly good and helping me out so much.  And yes, I am doing this all on my own, no other family member to help me out.  Shoot, I carried triplets for 32 weeks... I can do anything!!! Hahahaha!!!

Then, the plan is for daddy to come back 6 days before our scheduled c-section and spend 3 full weeks with us. He then will head back to work, and all of us will follow a week after.  So, I will be doing lots with a 3 week old!!!  I don't know how I will do it, but I will. Cameron is working for an amazing company (a dream in his line of profession) and they are being so helpful through all of this. I was promised that I wouldn't have to touch a single box... in our old or new house. So, all I need to do is hop on a nonstop flight (by myself, still recovering from a c-section) with a 5, 4, and 3 week old. I'll let you know how that goes!!!

Our biggest challenge now is keeping this baby in so daddy does not miss the delivery.  I know anything can happen at anytime, but I just pray this baby waits until the 39th week. I just have to do lots of resting (is that possible in my situation?). I have faith that everything will work out just fine. 

Our nursery is complete.  Yup, baby gets to have just a couple weeks in there before we pack up everything to move. But, it's perfect!! I'll get some pics of it soon to show off to you all.

Wednesday, March 27, 2013

Our 3D Ultrasound and Maternity Pics...

As we get closer to the big day, exciting stuff is happening. We turned 31 weeks yesterday, and we have 8 more weeks until delivery day!! We are in the final stretch and I can officially start panicking =).

We had our elective 3D ultrasound on my birthday this past Friday.  We only got the 10 minute package, so we hoped this little person showed his/her face well in that time.  Although they were squished against the placenta and we didn't get the clearest shots, we still got some very cute images.  We think this is a very happy baby because he/she smiled throughout the whole thing (or it was the lunch I ate!!). We avoided scanning the whole crotch area, so the sex is still a surprise.  I was thinking that I would be able to tell whether the face looked more boyish or girlish, but to me, it just looks like a baby!!! Here are 2 of our favorite photos...

We also had our 30 week appointment earlier in the day and everything is going perfectly still.  My weight is staying very well controlled (go me!!) and I have absolutely no swelling.  I'm actually still wearing my wedding ring!! With all of my past pregnancies, that thing came off at 5 months! We are measuring a week ahead, but expected seeing as we have bigger babies.  Any guess on the weight yet?? Lets see... Jackson was born at 40 weeks, 10.3 pounds.  Max was born at 38 weeks, 8.7 pounds. And this one will be born at 39 weeks, so I think we will have at least a 9 pounder.  I will be shocked if he/she is any less then that.  We go back to the doctor again next week.

Over the weekend, Cameron had the honor of taking over as the professional photographer and took my maternity photos.  I really wanted to have a nice shoot with the boys.  Dang, my kids are the worst when cooperating for photos.  I never take the time to get really nice shots of them because they hate it!!! But, with a little bribery, we managed to get some good ones.  Cameron did a great job!!!

That's all for now, but I will definitely keep the updates coming as things get closer!!

Tuesday, March 12, 2013

29 Week Update!!!!

Welcome to the 3rd trimester!! I can't believe we only have 10 more weeks to go until the baby arrives. It really hit us last week that we are in the final stretch and time is going by so fast.  It's hard to imagine life with a baby again, but he/she will be here before we know it.  I have mixed emotions about this pregnancy nearing it's end; on one hand, I am so eager to find out what is brewing inside and can't wait for this baby making machine to be retired for forever. But, on the other hand, it is very sad to think that these are my last weeks of being pregnant ever again.  Even with all the aches and pains, exhaustion and tiredness, I am trying my best to enjoy every moment because I know there will be times in the future that I will miss being pregnant.  But, yes, hubby and I have come to a very mutual decision that a tubal ligation is best.  Not only do we feel that our family will be complete once this one is born (no matter what the sex is), but my body needs to retire.  Having 6 babies in just 5 1/2 years is enough for anyone!!

I had my 28 week check-up last week and everything went great. Baby is doing as he/she should and mommy is doing fantastic!! A little too fantastic according to Dr. Y!  I guess he thinks I am trying a little too hard to have that perfect 9 months, so he thinks I should slow it down a bit before it all hits me all at once.  It's not like I am running a marathon every weekend or anything, but I will make it a point to put my feet up more often and not worry so much about bleaching every corner of the house on a weekly basis =).  After having triplets, I think being pregnant with one baby is a piece of cake!!

Our delivery date is scheduled for the 3rd week of May (I'll keep the date to myself due to privacy issues), but I am so happy to have a final countdown. I will be having another repeat c-section and I am praying things go a little better then last time.  My boys are so excited to be in the waiting room, waiting for daddy to come out with the big news.  Cameron is planning on whispering what the baby is in their ears and they will yell it out to all of our family! Too exciting!!! 

Other then that, no other news.  My doctor appointments are now every 2 weeks, so it should make this time go by a little faster. Can't forget the belly shot... this was last week and my belly has gotten HUGE!!! It seems very high to me too...

Tuesday, February 12, 2013

25 Weeks!!!

Wow, I guess it HAS been 5 weeks since I last blogged, but at least I do come back eventually!! Things have been going well with me, just staying busy with day to day life.

Today, I am 25 weeks!!! We only have 14 more weeks to go.  I can't believe that!! Getting somewhat anxious, but I'm really hoping this baby stays on schedule and doesn't make an early arrival.  I had an appointment last week and everything is just perfect.  We definitely have an active one because every time the doctor tries to get a heart rate, he/she loves to put on a show and not hold still!! But, that heart rate is holding strong at 158bpm.

I am really starting to feel pregnant and uncomfortable.  My energy levels are down and some days it's hard to just get going.  I can definitely feel that 3rd trimester creep up on me.

The boys are being such great helpers and make sure mommy drinks tons of water and eat lots for their baby.  They both are still convinced this is a girl, so we are trying to prepare them for the possibility of another boy.  They think it's as easy as ordering from the drive-thru and don't quite understand why we would have another boy when I already have had 2!!

The nursery is coming along and just about finished.  I'll have to post pics when all is complete.  We aren't having a shower this time around, so we have gradually been buying lots of baby things. We haven't had a baby for 4 years, so we needed a lot!!! I think by next month, we will be complete and ready.

Anyway, I don't have much else for you.  We don't have another appointment for a few more weeks and then after that I will be going more frequently.

Here is my 24 week belly picture...

Sunday, January 13, 2013

20 Week Update

This past week we turned 20 weeks... officially the halfway mark!!  It feels good to say that I am 5 months pregnant. Only about 4 more to go. 

We had our big appointment on Friday.  Before meeting with the doctor, we had our anatomy ultrasound, where they measuring every bone and feature of the baby, as well as my uterus and placenta, to make sure everything is going well.  Cameron and I knew how hard it was going to be to get through this 30 minute ultrasound, seeing as we don't want to know the sex.  After being pregnant with 2 boys and 3 girls, we definitely know what to look for!!  As soon as we got in the room, we gave the tech our "orders", trying not to seem controlling.  And so, we sat and faced the opposite way of the ultrasound screen, talking about whatever so that the time passed and we didn't have the urge to peek.  The hardest thing was the fact that the tech knew the sex of the baby from the very beginning; she just wanted to get that out of the way.  We kept reminding her to say "the baby", and not "he" or "she".  All went perfectly and there was no slip up. 

So that we have some gender reveal ultrasound pics to put in the baby's book after he/she is born, we had the tech wrap up a couple photos and tightly seal it in this envelope.  Because I am the type to secretly open and rewrap Christmas presents that are for me (just like my mommy =), Cameron COULD NOT leave this anywhere near me for the next 19 weeks.  He took it to work and hopefully he doesn't give into the temptation. I'm sure you all want to take a tour of the Pepsi lab now, don't you??

At the end of the ultrasound, we got to see the baby's face and beating heart. Still holding very strong at 148bpm.  Whoever is in there is sooooo active!! He/she was non-stop kicking and punching for the entire ultrasound.  We got some cute ultrasound photos to take with us. We can't wait for our 3D/4D ultrasound in a couple months... I wonder who he/she will look like!

We then saw the doctor and he gave us our perfect report on baby.  A little too perfect; our chunker is measuring 10 days ahead of schedule... weighing in at 15 ounces!!!!  The doctor said he wouldn't be surprised if I went into labor a couple weeks early and that would be just fine seeing as she/he is growing ahead.  Other then that, everything is great physically.  If we happen not to go into labor before, we scheduled our c-section for Thursday, May 23rd.

Here is my 20 week belly shot... yes, I GREW!!!!!  But, I have to say that it is all going to my belly (maybe my butt grew too!!!) and I am doing more then great with my weight gain... only up 10 pounds.  I don't think I could ever say I've been that good in the past.  Go me!!!!!

 And just for fun, here is my progression so far!!!