How it started...

Hello all,

I wanted to find a way to keep everyone posted on how Jordyn is doing and what is going on with her recovery. I know the kids in her class were requesting a blog, so they could get daily updates in school. Luckily, they have computers available to us in the Parents Waiting Room here at Riley. I will try to update this daily, and whenever we get more news. Thanks for all of the well-wishes and prayers. We appreciate it all.

Jordyn had been sick on and off for a few weeks, as were a lot of the kids in her school. We weren't very concerned and just kept her home when she seemed feverish or too tired. When Fall Break rolled around, Jordyn went with her dad and sister, Olivia, to visit family. That's when Jon noticed that she wasn't quite herself. She seemed extremely tired and out of it. She fell asleep on the way home that night and went straight to bed. She seemed sleepy the next day, but not sick. We stayed home and she was on the couch most of the evening. Her doctor was called and, because the common theme throughout this whole two weeks of on-and-off illness was a headache, the doctor called in a prescription for allergy meds and antibiotics. By the end of the day Saturday, Jordyn had her first dose of the medicine and went to bed very early.

SUNDAY, Oct. 25
Sunday morning was when we first noticed something was very wrong. Jordyn got up some time in the morning to use the bathroom and said something about the floor board being "wobbly". We just assumed that she was tired, and maybe had low blood sugar due to not having a great appetite for a good while. However, when we decided she needed to get up and eat something around 9:30 or 10, she said it again. This time we really noticed that she was extremely off-balance and "wobbly". We carried her downstairs and put her on the couch. Still assuming low blood sugar and maybe an ear or sinus infection, we had her walk to the dining table and eat a bowl of cereal. At this point we noticed that she had a hard time getting the spoon to her mouth and she was also having a lot of trouble speaking. We decided to wait a while and see if the food helped. However, by late afternoon, it became very clear that she wasn't getting better and we decided to take her directly to the emergency room at Community East.

4:30 pm, Sun, Oct 25
We arrived at the ER and they immediately took her back to a room. They were very concerned about her inability to speak clearly. Many doctors and nurses checked her out, and the best way I can describe her behavior at this time is this: if you can imagine taking way too much nyquill, the almost drunken body movement and slurred speech. But this wasn't the most concerning thing. The doctors noticed that her eyes were making jerking movements--nystagmus. Now usually when they see this, the eyes jerk from side to side (if you can imagine how eyes keep trying to correct when the room is spinning). However, her eyes were jerking in an up-and-down motion. They decided that we needed to get a CAT scan of her head to make sure there was nothing big going on in there.

The CAT scan came back negative, much to our relief, except for the indication of a large sinus infection. The decision was made to send her to Community North pediatric unit to monitor her overnight. She was given antibiotics and fluids via IV. We were then put in another room in the ER to wait for the ambulance to transfer Jordyn up north. She is poked and prodded some more, and is very, very tired.

12am, Mon, Oct 26
The ambulance arrived and Jordyn and I rode up to Community North. When we get there, she is taken directly to a room in the Pediatric unit. Nurses and doctors poke and prod her all night, and she finally gets some rest.

In the morning we are visited by several other doctors, who are now even more concerned about her speech and eye movement. A neurologist is called in and examines her. They tell us that it is true that an ear or sinus infection could cause her to be unable to walk or sit up right, and even cause her to slur her speech. However, it would not cause the eye movement. They decide it is time for an MRI and Spinal Tap. They are concerned that there is something in her head blocking the signals to her body. At this point they give us the news that she will need to be sedated to undergo the Spinal Tap. This concerned us given her lethargic state, but it was necessary for them to get all the information they needed. Originally they were going to wait and get it all done at once, but they neurologist was very concerned and decided to rush things along.

2pm, Mon, Oct 26
Jordyn is taken down for the MRI, while Jon and I wait and make phone calls. When she is done they take her back to her room, just in time to be taken up for the anesthesia and tap. We go along with her while they sedate her, and then are taken out to the waiting room. We won't see her again until the proceedure is done and she is out of recovery. By this time Grandma Kay has shown up and we go get some food in the cafeteria. Just as we are sitting down, we find out that she is done and we all head back.

6pm, Mon, Oct 26
After waiting a while for everyone to look over the results, the neurologist comes to the room and asks us to come with her. She wants to show us the films. At this point I am just floating along, almost too scared to feel anything. We sit down and she says, "let me show you what we are concerned about". She then shows us all the views of the brain, the layers, and finally the mass that they have found on the pons Varolii, in the brain stem. Now at this point they aren't sure what the mass is, but they are trying everything to find out. What the doctor thinks it may be is post-infectious encephalitis: Secondary, or post-infectious encephalitis occurs when a virus first infects another organ and secondarily enters the brain. Bascially, as we understand it, the antibodies that were created to treat whatever illness she had, also began attacking her brain. This caused the swelling and mass that we see. It is decided that she is to be sent to Riley Children's Hospital asap to be looked over by the neurology dept. The results of the Spinal Tap come back. Her white blood cell count is way up, indication and infection and pointing toward the encephalitis.

8pm, Mon, Oct 27
An ambulance is called and we are now on our way to the ER at Riley. There they will examine her all over again, we will answer the same questions for the hundredth time, and finally a neurologist will come look at her and decide which unit to put her in.

3am, Tues, Oct 28
We are finally admitted to the Riley Heart Center, where all heart and neurology patients go.

3:45am, Tues, Oct 28
A pediatric neurosurgeon visits the room. He has review the films and has news for us. He tells us that the tumor is in the brain stem, and as we know, it is too dangerous to stick a needle in there for a biopsy. There is too much important stuff concentrated there. It is also impossible to operate on. I have now been given the worst information of my life. He wants us to know that there are other routes we can take, but surgery is not an option.

11am, Tues, Oct 28
The head neorologist on the clock come in to give us some very good news. She does not believe the mass is a tumor, and that it is actually the encephalitis. The swelling is also in other parts of her brain, so they are going to increase the strength of the steroids and get that process started. She wants Jordyn to be on the high dose of steroids for 5 days. At the end of the 5 day period, it is hoped that she will either have made a good enough recovery to come home, or she will have to go to in-patiend rehabilitation at Methodist Hospital. She also wants us to be aware that there is a 70% chance of full recovery. There is a small percentage of kids that don't ever fully recover and will need special care for the rest of their lives. However, Jordyn is strong and we are hopefull. And grateful--it is no longer life-threatening! Now we just have to wait on the team of doctors from several different areas who have been looking over all of this information to come to a final conclusion and plan of action.

3pm, Tues, Oct 28
The team of doctors come to Jordyn's room and tell us that what we were told at 11 is accurate. They do not believe this is a tumor--it just does not look like a tumor to them. The plan is still to use the steroids for 5 days and then most likely off to rehab. A physical therapist, speech therapist, and occupational therapist will be visiting her every day while she is here.

5pm, Tues, Oct 28
A speech therapist is called in to evaluate Jordyn's ability to swallow. Jordyn does very well and is now able to eat again for the first time in over 24 hours.

All this time Jordyn has been very sleepy and very brave. She has put up with all sorts of prodding and poking, being woken up often, needles in her arms, and being hooked up to all sorts of cords. She is taking it all very well, and we are very proud of her. We can't wait to get her back home!

I will update daily, or as often as I get more information.