(Who, like Pooh, is also "rumbly in his tumbly")
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Before Tyler was born, we knew that there was a problem. On ultrasound, we could see what looked like a huge cyst bulging from his abdominal wall. Physicians were baffled by this and could not give me a precise diagnosis. I was seen at Cedars Sinai High Risk OB department, where I was told that Tyler had an omphalocele (intestines outside of his body). I traveled to San Francisco to see the physicians at the "Fetal Treatment Center" (the physicians here pioneered fetal surgery) in hopes that they might be able to operate before Tyler was born to repair the defect. Their impression of the ultrasound that they performed was that Tyler had bladder exstrophy (bladder outside of the body). In the end, both Cedars and the Fetal Treatment center were correct in diagnosing Tyler. He had an omphalocele AND bladder exstrophy. Of course, I did as much research as I could on the internet to learn about these conditions as I had no experience with either during my nursing career. While searching frantically on the internet, I came across a website that gave me a lot of hope. A little boy named Zach was born with an omphalocele and his parents had made him a website, telling his story and his great outcome. Zach was treated differently than Tyler was. Zach did not have surgery on the day his born. Instead, he had what's called "Paint and Wait." I presented Zach's story to the pediatric surgeon who would be caring for Tyler, but she dismissed the idea and wouldn't consider it as an option. I am sharing Zach's website here because there may be a day when scared parents are also frantically searching for information and will see Tyler's website. I want to be sure that they see Zach's story so that they can make an informed decision about their child's medical management.http://www.nmsutter.homestead.com/zacksomphalocele.html
Tyler's been through a lot in his short life, more than most will endure, medically speaking, in a lifetime. His welcome into this world wasn't a nice one as Tyler was born with his intestines on the "outside" of his little body, a condition that is rare and life-threatening. On his real birthday, Tyler went to surgery for a major repair.
Tyler was intubated for four days. I wasn't allowed to hold him until he came off of the respirator and that was torturous. Tyler remained in the NICU for two weeks, which wasn't long considering how serious his problems were when he was born. I remember him being so terribly hungry as he waited to eat for the first time. I put my hand in the isolette and he literally grabbed my finger, unassisted, and started to suck on it. I felt so-so sorry for him. He was starving! We left the hospital after two weeks, believing that we escaped major medical problems with ease.
Bringing Tyler home for the first time.
For two months, Tyler seemingly did well. He was eating and gaining weight normally. He was so tiny when he was born, but grew to 8 pounds by six weeks! We had no reason to believe that Tyler would lead anything but a normal life. We were not told anything by anyone that indicated anything differently. Our family was thrilled that Tyler came through his rough start with flying colors.
Tyler was a "normal" baby until he was two months old.
The Whole Truth and Nothing but the Truth, So Help Me God ...So help me, God.
This is updated to include everything that happened which led to Tyler's current condition. I haven't been able to be forthright about the events that took place because of the lawsuit that we went through. Now that the lawsuit is over, I am able to reveal everything, minus the names of those physicians and hospitals involved (as much as I would love to share those) You may find some of the content difficult to believe because it's so outrageous, however, it's all true and it was all a horrific series of events that led us to the tragedies that we face today.
When Tyler was two months old, disaster struck. On a Friday morning, Tyler began to vomit all of his feeds, had a low-grade fever and was generally lethargic. I made all of the necessary calls to inform those responsible for his medical care, but was repeatedly dismissed. I called Tyler's pediatric surgeon's office and was told that she was not available, that she was in surgery, but that they would call her to notify her of Tyler's condition. I received a call back about 20 minutes later from the surgeon's secretary who told me, "Dr. M said that it's not her problem. She said to call your pediatrician." I remember thinking how rude and careless (but seemingly typical) of this surgeon. I called Tyler's pediatrician who told me, "IF he gets worse,take him to urgent care" Well, Tyler didn't get worse, but he didn't get better, so my husband and I took him to an urgent care. The place was packed full of sick people (flu season) and the wait was three hours long. We left and went to the ER. After waiting for three hours to be seen, we finally were taken back to a room where my son was put on a guerney that was filthy with dried blood. There was also a very sick man in the bed next to him who was coughing ...hard. We asked the nurse how long it would be before the doctor would be in and she couldn't give us an answer. There were used needles on the floor and bloodied gauze. My husband and I told the nurse that we were leaving, for fear of our son ending-up worse just by waiting there. My husband also told the nurse that she should be ashamed of herself for the condition of that room. I agreed. We went home where I changed Tyler and called ahead to a different ER to see what the wait would be like. I was told that the wait was minimal and that it was quiet ...and "come on in" We took Tyler to that next ER where he was taken to a very clean room and the nurses fawned over him. They spent a lot of time telling us how cute he was, which made us feel good, of course. The physician there saw Tyler, ordered two x-rays and some lab work. After a couple of hours, we were told that Tyler was suffering from a virus. Nothing more, nothing less. Tyler had a virus. We were instructed to feed him Pedialyte every two hours. Tyler was also given a shot of Zofran (a medication that prevents vomitting) That physician was a grandfatherly type and was very nice. He spent a lot of time telling us "enjoy Tyler while he's young, they grow up fast" He informed us that he had contacted Tyler's pediatrician and that we were to call her in the morning. My husband pulled him aside, reminding him of Tyler's multiple birth defects involving his intestine just to make sure that the physician was taking it all into consideration. He got the "you're just being a worried parent speechWe left that ER late at night. I remember telling my husband, "Now aren't you glad that we went there?!" We arrived home around 4AM and we were all exhausted. We went to sleep feeling relieved that Tyler just had a virus. I called Tyler's pediatrician at 9AM. She had no recollection as to who I was or who Tyler was. I had to remind her of Tyler's ER visit and what his symptoms had been. Without much thought, she told me to take Tyler to the ER. I told her that we had just gotten back from the ER and that he checked out fine. I read her his labs and told her that his x-ray was OK and that I was just calling to follow-up. She then said, "If he gets worse, go back to the ER" That day, Tyler remained the same, in fact, he was a little better because vomitting had stopped. Later in the evening, I noticed that there was blood in his colostomy bag. I called the ER physician that had diagnosed Tyler with a virus and told him about that new finding. He reassured me that it was normal for there to be blood in stool when suffering from a virus. I hung up the phone, again feeling good that it wasn't somthing worse. I stayed up all night with Tyler as he was fussy and I was concerned for him as any mother would be when her newborn has a tummy ache. Around 7AM I woke up my husband and asked him to relieve me, I had to get some sleep. During that time, he did his best to care for Tyler and make him comfortable. Around 2PM, I got up and went to change Tyler's diaper. When I moved him from the couch, he screamed a scream of pain that I've never heard from a newborn in my life (mind you, I worked with newborns who were undergoing circumcision) His abdomen was distended, red, tender and hard as a rock. I immediately called his pediatric surgeon, this was obviously more than a virus. She told me to take Tyler to the ER (the first ER that we left because of the filth) that Tyler would be a direct admit to the PICU (pediatric intensive care unit) and that she would meet us there. We got to the hospital shortly after my call and the surgeon wasn't there, but we were taken back to a room immediately. An NG tube was placed (a tube that goes from the nose to the stomach) and 75cc of bile was suctioned, an enormous amount, indicating an obstruction. An X-ray was done, too, that showed a perforation. This all took about an hour ...and still no surgeon. We asked where she was, but nobody could tell us. Tyler was in very bad shape, he was dying.
"Help me, Dada"
Tyler and my husband in the emergency room, waiting for the surgeon.
The clock was ticking and I knew it. He was also given repeated doses of morphine for pain. We waited in the ER for what seemed an eternity. After almost three hours, Tyler was finally transfered to the PICU ...and still no surgeon. After we arrived at the PICU, my husband noticed that Tyler was looking rather "gorked" (drugged) and instructed the nurse not to give Tyler anymore morphine as he had just had a dose five minutes prior to our arrival. The nurse told my husband that it was fine and she dosed Tyler again. I didn't know that the nurse had given more morphine. I learned of this later. A few minutes after this dose, I took a look at Tyler and knew we were in for some serious trouble. He was pale, gray pale, and had this vacant look, a look that I had seen before. I told the attending physician that Tyler was going to "code" (a code blue is when a patient stops breathing or their heart stops beating or both) that he had that look like he was about to go. She told me that Tyler was just tired, that he was trying to go to sleep ...and that I was tired too and I should go to the cafeteria to get something to drink and that he wasn't going to code. Still no surgeon. I asked where she was and was told that she WAS NOT COMING and that Tyler was going to be observed for 24 hours as sometimes bowel obstructions can pass. Well, it doesn't take a surgeon to know that when there's already a perforation, there's no turning back and it's a SURGICAL EMERGENCY. Bowel contents were spilling into Tyler's system by the second. We walked out of the PICU, on our way to the cafeteria, thinking that things were not going well. We were going to make a plan. I forgot my jacket, so my husband went back through the double doors to retrieve it for me. At that moment, my world was about to come crashing down around me. Through the hospital intercom I heard, "Code blue, P-I-C-U. Code blue, P-I-C-U. Code blue, P-I-C-U) My immediate thought was, "How sad, somebody's baby is coding. It's not mine, they just told me Tyler wouldn't code." Through the double doors, I saw my husband wave me back in with a frantic look on his face. My legs turned to jelly, but I made it in. I saw a team of doctors and nurses working on Tyler. I fell to the floor, crying and screaming "No, no, no, oh God, no!" Those were the only words that were coming to me. It was all so surreal. Was I really in the PICU, watching this mess? Was this real? Am I really in a puddle on the floor here? Is that really my baby dying right there? They told me he wouldn't code. I told them that he WOULD code! How could this have happened? This was just the beginning of the problems, unfortunately. About a half hour later, sure enough the surgeon showed-up, looking like this whole scene was a big surprise to her. She hugged me. I smelled alcohol on her. Now this was a woman who operated on my daughter in 1994, I had complete faith in her. She operated on my niece, too. She put Tyler back together when he was born and it was complicated. I thought I had lost my mind. No way would she drink and then come to the hospital to perform as a surgeon. Tyler went off to surgery and was there for about two hours. The surgeon returned to us and informed us, with a look of disappointment, that Tyler's intestine had twisted and all circulation was cut off. It had turned to gangrene and perforated.
Tyler just after he returned from surgery where 95% of his intestines were removed.
My two month old had gangrene circulating in him and was in septic shock. That surgeon then had the audacity to say to me, "Why didn't you call me sooner?" I quickly reminded her that I had called her two days ago, when Tyler first showed any symptoms and that she wouldn't take my call. Her only response was, "I can move mountains around here, you should have called me sooner."
Tyler then suffered from what's called "third spacing" where his body ballooned, as a result of being in septic shock. He was unrecognizable.
This photo was taken about 24 hours after the picture above.
My little baby was a horrific sight to see. I was sickened by the events that had unfolded, sickened and in shock myself. I was also angry because even then I knew that this all could have been avoided had that surgeon taken my call the two days prior, but it was a Friday afternoon and she probably wanted to get home to start partying. As you can see from the picture above, Tyler was third spacing as a result of septic shock. Gangrene was circulating in his tiny body. He was so "swollen" that it was impossible to put a traditional urinary catheter in him and he was not putting out any urine. Bag after bag of I.V. fluids were being poured into him and still no urine. I pointed this out on several times to the nurses and to the attending physician, but I was blown off again. Two days after losing his intestine, Tyler's bladder ruptured. There was a clear fluid leaking from his incision site (see the staples on his belly? That's where it was coming from) The nurses were mystified as to what that fluid was, so they called that surgeon who came in a lot quicker this time. Sure enough she confirmed that it was urine, meaning that his bladder had ruptured. He went back to surgery again. I'm sure you can imagine how I was feeling at that point. While Tyler was away in the operating room, I struck up a conversation with a night shift RN and a respiratory therapist. I told them that I had smelled alcohol on the surgeon's breath and to my surprise, the RN said, "I'm sure you did! Everyone here knows that she's an alcoholic!" The R.T. told me that she had smelled it too. I was flabergasted. I asked them why someone hadn't reported her or done anything and I was told that everyone was too afraid to say anything. I couldn't believe it. Tyler came back from surgery with a supra pubic catheter to drain his bladder, to allow it to heal. He was unstable for about a week and a lot of that time is a blur to me. I believe this to be the most traumatizing event of my life and perhaps my brain is protecting me from not remembering a lot of it. I remember the key things though! Tyler finally made it out of the PICU and he was put into a room as far away from the nurses' station as possible. They knew that they had done wrong and for some reason they continued to do wrong. He should have been next to the nurses' station, he was a very sick little baby. Things quickly digressed between me and the surgeon from there. We had a few shouting matches where she accused me of "doing crazy things" by giving Tyler Pedialyte when I was instructed to by her resident. It was all a bunch of nonsense and an attempt to bully me into submission. She made a great attempt to try and turn things around as if I had done something wrong, in effort to avoid what she knew what was likely to come ...a big lawsuit. I called an attorney before Tyler was out of the PICU.
If I could go back in time, much would be different of course. One thing that I wouldn't have done was meet the attorney at the hospital. Even though my husband and I met him quietly in the cafeteria, it was pretty obvious to the nurses on their breaks who drifted down to the cafeteria knew what was going on. He just looked like an attorney and there we were talking with him, paper work everywhere and me sobbing over what had happened. Some of the nurses glared, most tried to make it look like they didn't see us as they turned their heads quickly in the other direction. The word spread quickly that the Baileys were on a rampage. Perhaps that's why Tyler was put in the room so far away from the nurses' station? Most likely so. I was actually told that was the reason by one of my allies at the hospital. I was also told that there had been special meetings about us and the nurses were instructed to "Get in the room and do what you have to do and get out as fast as possible."
I will never forget the respiratory therapist who stood up to the corrupt hospital and its staff on Tyler's behalf. She had worked there for 11 years and had seen just about enough and came forward, all the while knowing that she was risking her job that she depended on to survive. She was our hero and will always be so. She gave an honest deposition, unlike the other nurse who denied saying anything about the drinking surgeon. She told the truth. She suffered for it, too. In the end, she lost her job. When I asked her if she regretted coming forward, she empathetically replied, "NO! Your innocent baby and a lot of other ones don't deserve to be treated by a drunk. I'm sick of this happening!"
Tyler was finally discharged from the hospital. I was bombarded with instructions and asked which home health care company I would like to use. Wow. I was in for a life that was going to be completely different than I had expected. There are some bittersweet memories of those times like the moment that I brought Tyler home from that awful hospital. He had been asleep and when I set him down in his carseat, he opened his eyes and looked around. His face lit up like it was Christmas, Easter, Halloween all in one. He smiled and smiled ...and smiled. It didn't take long for me to get a dose of what life was going to be like because within 24 hours, we were on our way to a new hospital. Tyler was septic.
We spent a few days at that new hospital, where Tyler was being followed for septicemia. He had e-coli in his blood, which I'm fairly certain was the result of his ileostomy bag being right next to his bladder fistula. In other words, he had a bag of poop right next to a hole that led to his bladder, a perfect entrance for e-coli, which is prevalent in poop. The treatment for septicemia (bacteria in the blood) is I.V. antibiotics. Tyler was still a very small baby, not even ready to be born yet and here he was thrown into a world of horrific pain and drama. The hospital did not have private rooms, so we had to always share with another family, unfortunately. The children that he shared rooms with were sick! The last thing we needed was for Tyler to catch another bug when he was already fighting a nasty infection ...and only eight pounds of him at that! One family brought in the whole clan, all 12 of them, into our small shared room, exposing Tyler to all sorts of who-knows-what. That same family brought their three other children into the room and washed one of the kids hair in our shared sink. It was absolutely ridiculous. I had zero support from the nurses when it came to keeping the number of visitors down. I was told that there was no limit on visitors. I requested a private room about 15 times. It got so bad that I finally just sat in the lounge with Tyler. It wasn't safe to keep in trapped in a room with loads of people coming in and out, exposing him again and again. He's immunocompromised it makes no sense to allow loads of people to be around him. Well, sitting in the lounge wasn't going to work too well with the nurses. They wanted Tyler in his bed. I wanted Tyler away from crowds of people. We had reached a stale mate with the nurses. I refused to return Tyler to a room where germs were manifesting, germs that could ultimately kill him. The nurses refused to keep a limit on the number of visitors for our roomate, refused to do anything to help the situation. I sat in the lounge and waited for something to happen. And then something did. I was met by the Director of Nursing, the charge nurse, our floor nurse, a social worker and a few others who I can't remember at the moment. They encircled me with their chairs, where I was surrounded by them. I felt like I was on the hot spot. Essentially, I was on the hot spot. I relayed my concerns about the crowds of people and Tyler's immunocompromised little body. I told them that it had only been a matter of weeks where my son had come very close to dying, I told them everything. They said that they wanted to accomodate our needs and asked what I wanted. I wanted a private room. That's it. I just wanted a private room. I was told that they didn't have any, but that in 2008 they would have all private rooms. It was 2004 at the time, that didn't do me any good (for the record, it was 2011 when they finally got private rooms) I asked where they put the celebrities' children, surely they didn't put them on the floor with everyone else. I never did get an answer on that question, but I knew that John Travolta's son had recently been an inpatient there and I also knew that there was not a chance that his son was in the same hell hole as mine, with what seemed like goats and chickens running amuck. Well, they weren't going to give Tyler a private room. Period. Tyler was only receiving antibiotics at the time, something I could easily do at home, so I suggested that I take him home and work with a home health company. I was told that I would need to sign him out AMA (against medical advice) so I asked if their were any ramifications for doing this. "No" I was told by the social worker and charge nurse. I gave them a military salute (in my mind) and was packing before they knew it. There was probably smoke on my trail. I remember driving Tyler out of that hopsital feeling freed, feeling like there was hope waiting for him at home for him, feeling like if he was going to have a chance to live, it was going to be up to me to figure him out.
More to come....
Tyler spent so much time on his back in the hospital that his head became "flat" on the back. Tyler received a special helmet to fix this problem, but was unable to wear it due to his fevers.
Tyler has been a patient at: Huntington Memorial Hospital, Children's Hospital Los Angeles, U.C.L.A, Boston Children's Hospital, Cedars Sinai Medical Center, Maui General Hospital, Henry Mayo Hospital.