09/12/08

 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.

That's the end....for now.  Hopefully I will get to continuing the saga of Jackson very soon.  Sorry for the delay!