Here is our Thanksgiving Table from this year. Gratitude for Lilly's health was the most profound feeling of thanks that I have ever had. As a family we have much to be thankful for. We have our sweet Lilly.
This is the rest of the
story.
{continuation of journal entry} An IV was started to continue her hydration. After seeing her walk (with me holding her under her arms), the ER doctor was concerned that there was more at play than simple dehydration from a virus. She ordered a CT scan to look at her brain. Lilly did well; mostly because she was so lethargic she couldn't do otherwise. I was able to stand beside her and hold her hands. The CT scan came back 'normal.' Upon consulting with a neurologist, we started to prepare for an MRI with contrast dye. This was for a more conclusive picture of the brain.
Meanwhile back at the camp... I understand that Johnny and the kids broke camp in record time. In 30 minutes they were on the road.
Lilly went into the MRI at about 10:00AM. Johnny and the kids were due to be back in town at about 11:00 - 11:30. Because she had to stay completely still for 40 minutes, she had to be put under general anesthetic. It's always hard to see your child go under. Lilly has been our only child to do it, but she has been under three times. (actually it is 4 by the end of this experience, but I didn't know that then) I was very nervous because John hadn't arrived. My baby brother AJ and my sweet bishop gave Lilly a blessing-- the bishop blessed her that she would have 'good health.' He also blessed me through her blessing with the strength that I would need.
{end of this period of the journal entries} This is where my journal entries end for a period of about 2 weeks. So much happened in that time that it is very difficult to remember all of the details, but I will try.
My mom stayed with me as they got Lilly ready for her MRI. I was so very glad to have her there for me. It was good for us.
The medical staff gave Lilly some medicine that made her a little dreamy before they put her under. During this time that she was falling asleep, they said to talk to her and keep my face in front of her because it would be the last thing that she remembered and then I needed to be in front of her when she woke up and it wouldn't seem like she was away from me.
It was very hard to see her fall asleep and hope that she wouldn't be one of the few that doesn't wake up. But... I had to remember the blessing that she received, and though I cried, I knew that I would see her in less than an hour. When they wheeled her little body down the hall, it truly ripped my heart out. There is a such a helpless feeling that you have when they take your child and you can't be there.
I do have to say that the people who work in this part of the hospital are the cream of the crop. They are truly angels. We were so well cared for and lovingly treated. I am so thankful.
Cooks Children's Medical Center, Fort Worth, TXNext came about the longest hour of my life. That's all that I can say about that.
Lilly wakes up from anesthesia in a terribly ungraceful way. She kicks and fights. They say that it is not an extremely rare reaction, but definitely not common. Later we would find out that her sheer will and determination-- like awakening from anesthesia-- would come in handy as she fought for control over her body.
My sweet hubby arrived just as she was awakening. I was so glad to see his loving face. I collapsed into his arms and cried. Maddy and Stephie also came in to see Lilly. Everyone had tear-stained faces from their trip back to Fort Worth. I was so glad to have them back and to feel their support.
After quite some time-- I really don't know how long, we ended up back in the ER to await results. When they came, they were normal. There was no swelling of the brain. That was a good thing. Of course, this meant that our questions weren't answered, but negative results were a good thing. Lilly was still non-verbal. Did I mention that she never started talking that whole day since her early-morning admittance into the ER? She basically just looked at whomever was speaking to her and grabbed desperately for me whenever I moved the littlest bit away from her bedside or if I tried to put her down.
It was decided that Lilly should get hooked up to electrodes to monitor her brain activity, and be admitted into the Epilepsy Monitoring Unit for observation. This was a long process that neither Lilly nor I enjoyed.
We waited in the ER for a bed in the EMU for quite some time. John had taken the kids home to get everyone cleaned up and settled in for the night. As I followed Lilly's stretcher to the EMU, and just as we stepped foot on our floor, I met up with the sweet girls that I served with in Primary-- Heidi, Erica and Patty. I think that I collapsed into their arms, too.
In the EMU the patients are monitored with brain electrodes and there is also a camera in the room. Whenever unusual brain activity kicks in, they are watching the way they are physically responding also.
That night is a blur. Sweet Laura, my SIL also came by. She really lost it when she saw Lilly. I guess she was quite a sight, but I think that I was pretty numb and exhausted to realize the magnitude. The night was long. Lilly wanted to be held constantly. She was very agitated. Not a lot of sleep was had by me or John.
The next days just really run together. We had so many people come in to check on us. Meals were being brought in for my family at home. Stuffed animals were brought in by the armfuls. There were tons of balloons in the room.
Lilly was non-verbal for a total of almost two full days. She didn't have control over her hands, she lost potty control and had to return to diapers for several days, she couldn't walk or even stand in a stable way. Eye contact was difficult for her. Her eyes would go back and forth very quickly as she tried to focus on anything. She would bite very strongly on my shoulder if I was holding her, or on spoons, straws or her pacifier (that I had given to her in desperation as she kicked and screamed.) As she was screaming, she would grit her teeth and put her chin on her chest and pull her head sideways. Very scary.
And then there was the screaming. She would scream at the top of her lungs and claw and kick. It was frightening. She was covered in bruises all over her legs from kicks and hitting either the chair or the bed. During these episodes, which lasted anywhere from 30 - 90 minutes (at their height about 1 week later) her brainwaves actually were in more of a 'sleep pattern.' Very weird.
Sometimes she would just stare. The stares were intense and she communicated with her stares. Sometimes if we started doing the wrong things, she would ramp up and the screaming would start.
The one funny thing was that as we fed her, she had a voracious appetite. Normally, her appetite is very light, and she is practically a vegetarian, but in the hopsital when we spoon-fed her, she ate like a field-hand and loved her meat! They said that certain parts of the brain that affect appetite might have been aggravated and that was why. In any case, it was a good thing because she didn't end up losing any weight in the hospital.
Every test imaginable was given. Specialists in infectious disease came by to ask us myriads of questions. Each and every test came back negative. I was starting to get frustrated. The neurologist kept telling us that this was good, though, because we didn't want her to have any of the diseases or conditions that they were testing her for.
Encephalitis is an illness diagnosed by elimination. This is what they assumed that she had, and the negative results on the other tests further confirmed that they were correct in their diagnosis.
Resting with Aunt Laura (who spent the night so that John could be home with our other kids-- Nicky had the same wicked stomach virus... he ended up in ER so we had two kids in here at one time.-- but, that's for another post!)
Hangin' with Sweet StephanieThere were so many visitors, but I didn't take lots of pictures. I could only take pictures when she was calm... which wasn't that much, so some of our visitors saw this Lilly and some saw the wildcat Lilly.
Glimpses of Normalcy
Our Heavenly Father was very good to us. There were moments were we would be able to see that "our Lilly" was still in there. These are a few pictures that we were able to snap when she was having those moments. They were wonderful to hold on to. This whole ordeal lasted about 3 weeks for the big, bad stuff, and about 1 1/2 months to complete recovery.
Response and Smiles to Aunt ViviThere is so much to this story that it really hurts my head to try to document it. I think that I will ramp this post down. The end of the story is that Lilly did indeed have Viral Encephalitis. It was caused by the stomach virus that she had. Sometimes viruses travel and affect the brain, and this is what it did. We were blessed that she never had brain swelling, hence no brain damage.
Here is a picture of Lilly and Nick right after her illness. Back to goofing around at home!
