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 3^rd 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 3^rd 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.