Part 1:
Jackson was born on 5/31/03 at 2:47 pm. My pregnancy was remarkable only because I had no problems at all aside from some wicked heartburn in the last few months. He was a full term, normal vaginal delivery and a pretty short labor for a first child. He was a large, strong baby from the day he was born: 9 lbs. 9 oz. and 21.5 inches. We could tell that he was going to be active even before he was born. His nickname in the womb was “Boom-Boom McWiggles” or “Mr. McWiggles” if we were feeling formal.
He was an exceptionally good baby. He slept well, ate well, pooped and peed well, grew well, never cried too much. We could throw him in the sling and take him just about anywhere, anytime. He was fed breast milk exclusively until about 4 months. He was so large that we felt he could benefit from starting some solid foods. I continued to pump after going back to work, and nursed him until he was 8 months. (I would have kept it up but he started to bite…OW!) He took to solid foods like a champ; he liked almost everything he was given with just a few exceptions.
He met all developmental milestones at the normal times. He was a very serious, watchful baby. He would watch and study the things that people around him would do before he would make up his mind if he would do something. From early on he loved books (reading and eating them). He would often grab a book and come up to me, plop down on my lap, and we’d read. It couldn’t be too long of a book though, it was a very rare occurrence that he would sit still someplace more that 5 minutes. Lots of times, Lee and I would put on a Sesame Street for him and sit down with him hoping for a few minutes of rest. Usually that would end up with us watching Sesame and Jackson off somewhere else in the room doing what toddlers do. He used so much energy in a day; it was hard to keep up with him!
He was such a caring, sympathetic little guy. He couldn’t stand to hear babies cry or see anyone sad. He would go around kissing different objects in the house (“mmmmmwuh!” was his kissing noise), but was a little bit stingy with the kisses for Mom and Dad. I was not above pretending to cry when I really wanted a kiss. It would always work, he’d run over and kiss and hug me.
Some of his favorite things:
- Elmo from Sesame Street
- Dancing! Any time any kind of music would come on he would get up and dance even if it was a commercial. He would always try to pull Mom and Dad up to dance with him. It was not good enough for us to dance on our knees—we had to stand all the way up to dance with him!
- A little magnetic monkey that hangs on our lamp. He would ask for it and stick it to various metal items in the house, especially the trashcan in the kitchen.
- Rubber duckies
- Pushing his own stroller around
- Pushing buttons, especially on things that he shouldn’t be touching
- Ritz crackers, macaroni & cheese, grapes, yogurt, cheese slices, and bananas
- Dogs. He would imitate their bark. “Uh uh uh!”
- Climbing stairs
- Turning lights on and off
- “Talking” on the phone. He could pretend that just about anything was a telephone. He would talk into it “mah wah amm wah wah” and sound just like the teacher on the Peanuts cartoon does.
- Trees
- Being chased by Dad all around the living room
- Elbows and bellybuttons
Some of the words that Jackson could say:
Mama, Dada, bottle, cookie, cracker, Elmo, dog, hot, no, yeah yeah yeah, banana, elbow.
Part 2
On Wednesday Dec. 8, 2004 Jackson had a well-child check up and immunizations. There was a long wait for the doctor and Jackson passed time by pushing his stroller around and around the doctors’ hallways and opening and closing the door to the exam room that we had been assigned. I knew there was no hope of trying to keep him still for that long of a period of time, so I just followed him around to make sure he stayed quiet and out of trouble. A 3 year old boy had been crying while we were waiting and when Jackson heard him, he searched for the boy to make him feel better. When we finally saw the doctor, he commented on how active Jackson was. He pronounced Jackson to be in good health, the nurse gave him his vaccinations and I dropped him off at daycare. On the way to daycare, he fell asleep in the car and continued to sleep as I handed him over to Bessie (daycare employee).
I picked him up that afternoon and we went to a friend’s house. Jackson played with toys, watched TV, and stuffed his face with Sun Chips. We went home, ate dinner, played, and we put him to bed. That was the last day that Jackson will ever experience as a normal child.
The next morning, December 9, I woke him up at 6:30 as usual. Nothing seemed out of the ordinary. I got him dressed. I fed him a yogurt for breakfast as he watched Sesame Street. I kissed everyone good-bye and left for work. Lee dropped him off at daycare around 7:30.
I left work a tiny bit later than usual to pick Jackson up from daycare. As I pulled up, I noticed emergency vehicles on the street in front of the daycare. I parked & ran up to the building thinking that there may have been a fire, but as I approached I could see people inside and I relaxed. I just figured that the emergency vehicles were there for the Duncan Donuts across the alley.
I got to the door of the daycare and Georgia (always my least favorite day care worker) said “here is the mother” and to me she said “your son is at the hospital, he had a seizure”. I can’t tell you all of the different thoughts that flooded my head at that moment. It was all so unreal. I remember thinking “why didn’t anyone call me?” and “how could this happen?”. I was trying to find out what happened and get to the hospital, but this cop is trying to ask me a million stupid questions…name, address, phone number, etc. She also assumed I didn’t speak English and was shouting for a translator before I told her I speak English fine. I asked her what happened but she doesn’t tell me anything.
Georgia comes out and is trying to give me directions to Our Lady of Resurrection (ORL) and then asks if I’d like her to go in the car with me. I agree, but just then a CFD comes up and says that he will drive me to the hospital. I ran to the car to get my purse and then go with him. I am so thankful that he drove me there! All the way there I kept trying to reach Lee. I got his voice mail the 1st time, hung up, and called right back. I got voice mail again and left a message. It was hard to hear because the sirens were on.
He dropped me right at the ER door and when I went in, a nurse started to ask me the usual questions…name, address, phone, insurance. A doctor (I’m sorry that I can’t remember his name because he was really very nice) interrupted and told me that before I went into the room to see Jackson I should know what to expect. He told me that Jackson had stopped breathing and had to be intubated. He said that a nurse was pumping a bag that was essentially doing the breathing for him. He said that he had to be sedated in order to intubate so that he was not conscious. He also said that there were marks called patichea all over his face. While he was talking, Lee called me back. It turned out that he had gone home sick from work that day. Someone gave him directions to the hospital.
I went into the tiny, crowded room. I saw my sweet Jackson lying on the table naked except for a diaper and a bracelet that says “Baby Doe”. He looks so small and still. He had a cervical collar on to hold his neck and head still. There were a lot of people in the room working on him. They brought a chair for me and I sat and held his hand and tried to stay out of the way and cried.
When Lee arrived it was obvious that he was in bad shape. He could barely stand up for more than a minute and he was sweaty and sick to his stomach. A nurse came and gave us kleenex and ice water.
A chaplain came and asked if I would see the daycare workers, who are now gathered in the ER waiting room. It is a Greek family daycare. Greeks have large families so there were quite a few people there already. Georgia tells me that Jackson had been put down for his nap at 1:15. When they tried to wake him he was blue around the lips and they could not wake him up. Georgia’s brother Nick tells me that they won’t cash my check from that week (yeah, I’m so worried about THAT at the moment!) I told them I had to get back.
OLR has no pediatrics so Children’s Memorial has sent a transport team to bring him there by ambulance. I ride in the ambulance and Lee drives his car there. The whole time someone is squeezing the bag that breathes for Jackson. At Children’s in the ER they ask us millions of questions. They x-ray him a few times, do a CT scan, run a ton of tests. The tissue at Children’s is the worst! It is very small, thin, and rough as sandpaper. I went though about a thousand tissues!
Jackson is admitted to the PICU. We have one of the corner rooms with double doors. I had never been there (or any ICU) before but even I could tell that those were the rooms for the really sick kids. Our next door neighbor was a little girl who got a kidney transplant while we were there. I hope she’s better now.
They had absolutely no idea what was wrong with him. They felt that it could have been foul play or neglect on the part of the daycare because of the marks on his face and neck. Police and DCFS were called by OLR.
They did a million tests the first few days…Spinal tap, MRI, blood tests, EKG, EEG, skeletal survey. They thought for a while that he might have an unusual presentation of diabetes because his blood sugar was so high. We were pretty happy about that (not to diminish the seriousness of diabetes, but it is something that can be named and treated.) They pricked his little toe every hour to monitor his blood sugar and even started him on an insulin drip, but they ruled that out within a day or two.
They also ruled out a heart problem, infectious causes, and seizures. One doctor indicated she was concerned about brain damage because the EEG showed slow brain waves. I think that she was the only doctor who ever actually mentioned the words, and I can understand why. That evening was one of the worst for our emotional state. Dave and Kari brought us a nice dinner that night and all we could do was pick at it and cry.
The next day he made some improvement and they soon moved us over to a regular PICU room. They weaned him from the ventilator and began to feed him through a tube that goes down through his nose into his tummy (NG tube). A doctor from PST (protective services) came to take photos of the marks on his face and neck and we slowly began to learn more details of what happened at daycare that day. We were also interviewed by police detectives and by a DCFS investigator.
Part 3
Our DCFS investigator (We'll call him "Mr. H") seemed very eager to clear the daycare of any wrong doing, so much so that at one point in the interview I asked if he spoke Greek (he did not). We had to repeat ourselves often and sometimes with force to make our points to him. He did not seem like he was listening, only that he wanted this case closed. At the end of the interview, out of curiosity, I asked how many children were taken care of at the daycare. Mr. H told me that they had 8 children in their care, at least that is what their license said they could have. Well, that was just such an outrageous answer that we couldn't believe it! I had seen at least 2 or 3 times that many inside the daycare with my own eyes! We were angry!! We told Mr. H that there were many more kids than that there, but he seemed unwilling to believe us and unlikely to look into it further. At one point, he told us not to worry--we were in the clear! (WHAT?!!!!) Our social worker, Sarah (who was unbelievably great) filed a formal complaint against the daycare for us with the licensing division of DCFS.
Keep in mind that doctors were still not able to determine at this point what has caused Jackson's illness. We did not know if he had been a victim of abuse or neglect at the daycare or if something else was the cause. We had made restricted visitors list with security to keep the daycare people from visiting, but it did not deter them from trying. We had our calls screened so we would not have to talk to them, but still that sneaky Georgia managed to get through by saying she was a family friend. Even if they had nothing to do with causing it, they still handled the situation in a horrible way and we wanted nothing to do with them.
Here is what Sarah told us happened after she attended a meeting with police, DCFS, Children's PST, and Jackson's doctors. This is all second and third hand, much of it through the mouth of people who do not speak English well. DCFS did not use translators during their interviews. Jackson was put down to nap with the other children shortly after 1pm. Bessie (day care worker) said that she went to change his diaper and then he went back to sleep. Fifteen minutes later, they went to wake up the children. They could not wake Jackson and he was blue around the lips. Someone from the daycare started to perform CPR unsuccessfully. Another daycare employee tried unsuccessfully to perform CPR. A parent who was picking up their child tried unsuccessfully to perform CPR. At some point, they took him outside (in December!) they said to get fresh air (we feel it may have been because they did not want anyone to see how many children were inside). Another parent (Pete) saw that the CPR was not being performed correctly. He took over and was successful in reviving Jackson. According to the timeline given by the daycare ladies and the 911 record, there was about 20 minutes between the time Jackson was found unresponsive and when 911 was called.
Pete asked the daycare if the parents had been contacted. Georgia had told him that "the mother is on her way". I was never contacted by them at work, on my cell or at home, nor was Lee. Sometimes I would go straight to the daycare after work. Often though, I would do errands or go to the Y to work out before picking Jackson up. I even thought about stopping at the Y that day, but decided not to because I was just getting over a cold. I get so angry at the daycare when I think about how much longer he could have been laying alone in the ER, with no one there even knowing what his name was! I trusted my child with these people and they did not even have the decency to call me when he almost died!
The police investigators that were assigned to the case seemed like they would have liked to take action against the daycare, but their hands were tied. There was no evidence of any crime being committed. The doctors still did not know what was going on with Jackson. They were not able to rule out abuse or neglect, but there was nothing definitive to show that the daycare was the cause. Also, the daycare’s lawyer told them to stop answering questions from the police.
Every time we would see a new doctor, we would make sure that they knew about the vaccinations Jackson had the day before. When we would ask each doctor if they thought it could be a reaction to the vaccinations, they would dismiss the idea very quickly without a second thought. “Vaccination reactions don’t happen this way”, one of them told us. “A reaction would happen weeks after, not the day after.” So, we had pretty much put the vaccinations out of our head by the time Jackson had been there a week.
Anyway, Jackson’s condition was improving, so even though they were not able to determine what caused the illness we felt confident that he would soon be OK. After they weaned him from the vent, they told us they were looking for a specialty to accept him. Neurology decided to take him and he was moved up to the 3rd floor.
Things were really different up there. First of all, most of the rooms on 3W are double rooms. The rooms are very small for 2 patients and 2 parents to share. I can’t stress enough how small the rooms are and coming from PICU where everyone had their own space, it was a little bit of a shock. Another huge difference was one nurse in PICU would have at most 2 patients to take care of. On 3W, the nurses had twice that or sometimes more! If some piece of machinery started alarming, you had to call the nurse yourself, there was no one within earshot usually. I kept telling myself that even though things seemed much harder to deal with on 3, it was really for the best because it meant that Jackson was getting better.
Our roommate was a little guy named Omar. He was a little bit older that Jackson and he had a lot of problems. His dad was always with him and took really good care of him. Most of they day, dad would take Omar for walks around the hospital in a stroller. Omar had already been at Children’s for 3 months. At night, Omar’s equipment would beep a lot. It was very hard to sleep. But I also felt sorry for them, Jackson had been really constipated (he hadn’t pooped since the day before he got sick—about 5 days ago) and spent all night moaning. He did eventually go.
It had been so bad, that I finally let Lee convince me to sleep at home the next night for the first time. Jackson had an even worse time of it that night. Jackson had vomited in the night so they stopped his feeds. He had an oxygen mask on because his O2 sats were low again. When I got to the hospital, the nurses were in his room and told us to go to breakfast—they would keep an eye on him.
We were eating and reading the paper in the cafeteria downstairs. We looked up and saw one of Jackson’s nurses. She said we had to come right away! That was a very long elevator ride.
The other nurse, Nancy, had noticed that Jackson had a surprised look on his face. And even though he had an oxygen mask on, his lips were blue. She got the doctors, who had to reintubate him. When we got up to the room we couldn’t even go in because it was so crowded with people working on him. We could only stand in the hallway and cry. They moved him back to PICU.
He had aspirated his vomit and his lung had partially collapsed. They saw something on the x-ray that they said looked like pneumonia. They hooked him up to a different kind of EEG, a video EEG, which stays on 24 hours or more. They saw some seizures. When they pinched his ear, the brainwaves did not change at all (and she pinched HARD!) They started him on 2 different seizure medications: ativan and fosphenytoin. Then when they pinched his ear, you could see the reaction on the EEG. They also started him on a 3rd seizure medicine: keppra. They drew his blood a few times a day to measure his dilantin level.
A PT and an OT came to our room and showed us range-of-motion exercises that we were to do with him a few times a day to keep him from getting stiff. A RT (respiratory therapist) came every 4 hours to do a BD treatment, which was basically someone bonking on his chest and back in the area of his bad lung to loosen whatever nasties were sticking to it and getting him clogged up. He needed to be suctioned quite often to get rid of the secretions. This meant that the nurse or RT disconnected his ventilator, stuck a small suction tube down his throat which made him cough, and sucked the phlegm out.
He finally got another MRI after being bumped for 2 days. We were told that there were changes from his first MRI, but we were not told at that point what the changes were or what it meant for Jackson. They started re-doing tests that they had already done…blood work, cultures, another spinal tap. And they kept him on the video EEG for days.
His fever kept coming back. They wouldn’t put a blanket on him in hopes that he would cool down, so he’d be laying in bed with only a diaper and the bandages that were covering his EEG leads on him. I just wanted to pick him up, wires and all, and run away with him as fast as I could. It was so hard seeing him like that. I couldn’t even hold him because of all the stuff he was connected to.
His I.V. would keep getting blocked, so they would have to stick him again to get another one going. They had stuck him so much, that it was hard to find anymore places on his body that hadn’t been stuck already. One night they had to stick him 8 times to get an I.V. going and then the vein they got was so tiny that they didn’t know if it was going to last until morning. Luckily, it did last and that morning they put in what is called a PICC line, which is a central line higher up in the arm. It was more permanent than an I.V. and you could also draw blood from it as well as put stuff in. They had to wait until morning to have it put in because it has to be placed by radiology and they only handle emergencies during the night.
A kind of funny thing happened while we were in the PICU. I was sitting there reading the paper one day. I happened to look up and I saw one of my students standing there! I said “Don! What are you doing here?” I was so surprised to see him. He gave me a hug and said that his little 2 months old daughter had pneumonia and was in the PICU too. In fact, he was in the room right next to ours. (His baby got better and is OK now.) He even bought a balloon for Jackson.
Part 4
At this point, we were seeing so many doctors and therapists and technicians and chaplains and specialties. We could barely keep them straight in our minds. I did keep a list of all the nurses that Jackson had after he was transferred back down to PICU. It went on for pages and pages (go ahead…ask me who his nurse was on 12-15-04 day shift!), but it kind of helped me to remember things better.
Orthotics came by to make splints for his hands and feet to preserve his range of motion and so he did not stiffen up. A PICU resident came and said they were going to hook him back up to the VEEG. She said something about a comatose state, but wasn’t very specific or helpful (being PICU not neurology she could not answer many questions about it.) We had a care conference later on that day that we hoped would answer more of our questions.
At the care conference, all the doctors from different specialties (the ones that could make it anyway) got together with us to explain what had happened so far, and what the short term and the longer term plans were. Our best PICU nurse Mercy went with us to take notes.
The things that they said they had ruled out (as much as they can be ruled out) at that point were: allergens, metabolic causes (with one test, organic acids, pending), injury, brain infection, stroke, toxins. His EEG was still abnormal…slow and not well organized with possible seizures.
Their plan at that point was to put him into a chemically induced coma by giving him a drug called versed to rest his brain. Then after a few days they would bring his versed levels back down. The theory was that it would be something like rebooting a computer. They could not wean him from the vent while he was on versed, so that would have to wait. They also mentioned that if the weaning did not go well they would possibly have to give him a tracheostomy.
After that, they were going to give him another MRI. And after that a brain biopsy. And a gastrostomy tube (G-tube) would be put into his stomach so that he could be fed through it. After his release from Children’s (no one could say how long it would be) he would go to a rehab hospital.
Dr. G., our neurologist at the time, also said that he was a member of a neurology email list that he could post about Jackson on and see if any other doctors had ideas about what could be causing his illness. They said it was good that he was so young because he would have to do less relearning of skills.
After that meeting I cried for an hour. Then it was my night to sleep at home and I cried even more there.
While we were at the conference, Santa and Mrs. Claus had come. They brought some really stupid presents. They brought a fleece blanket that had butterflies (for a boy!) all over it and really huge ugly stuffed dog that went with it. The other things they brought were for children ages 3 and up (choking hazard—you’d think a hospital would be more careful!) Jackson was only 18 months.
Lee and I agreed early on in this ordeal that we were not going to take pictures of Jackson while he was like this. It was nothing that we wanted to remember. But Santa and the Mrs. left a Polaroid picture of themselves standing by Jackson’s bedside for us to see when we came back from the care conference. I was angry! We had just come back from this horribly emotionally draining meeting to these stupid, useless presents and horrible picture. It was a running joke that if I ever saw that Santa again, I was going to kick his @ss and I had the photo to recognize him by. It turned out that that was the only photo of him taken while hospitalized.
They started the versed right away, but the docs were a bit puzzled. It did not really have the effect that they expected. Instead of Jackson becoming comatose, he remained as awake as he usually was.
One day I was standing by his bedside watching him sleep. I saw him smile in his sleep, you know how newborn babies do? It was a wonderful yet heartbreaking thing to watch. It had been weeks since I had seen any expression or emotion on my son’s face. Even though I knew this wasn’t true emotion, just a reflex, it really touched me and I cried. Who knew how long it would be before we saw a real smile from him.
On Christmas Eve, we were visited by angels. Pete (the man who saved Jackson’s life), his wife Monique, and their little son Nico came to the hospital to see us. They do not give each other presents at Christmas time. They just go around helping people who are less fortunate than they are. They brought us a home-cooked meal with vegetable lasagna, tomato and mozzarella salad, and homemade cookies. They even put in lemons for the bottled water. They are truly wonderful people.
On Christmas day, they took him off the versed drip, but nothing had changed. Our present was that they were able to extubate him and since they did not need to monitor his brainwaves they disconnected the VEEG. We were able to hold him. What a beautiful feeling! He was breathing well on his own and he did not have too many secretions. Those he did have, he seemed to be swallowing ok.
That night, his temperature dropped. This caused his heart rate to be low and his monitor kept alarming all night. I had taught myself to knit and had knit a hat and a scarf. The hat came in handy that night--Jackson wore it to keep warm. The next day his temperature was better, but his secretions were more. They planned to move him up to 3W again.
The end...check out the main blog for more about Jackson.
