If the Snot Fits...

Call it 'allergies,' or 'hayfever'- whatever it is... we've got it!  

Poor Nicky, he was outside for an hour or so on Monday, and he has been suffering with congestion ever since!  Each and every year I wonder, 'why do we live here?'  You look on the map, and we are about the highest pollen rate that you can get.  Ugh!  It is so frustrating because the sun starts shining and we want to be outside, but the Snot Monster will be visiting soon afterward.

Yes, I have taken to the infant saline solution and bulb syringe to ease poor little Nicky's cappuccino machine-like breathing.  And let me tell you, toddler snot is a bit different than infant snot!  Ick. I'm telling you, whoever created the above critter, definitely had a toddler with snot issues! 

Lilly's Story

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, TX

Next 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 Stephanie

There 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 Vivi

There 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!

Glimmers of Thanks

I am thankful that our little Lilly is here with us today, in full health and function, delighting us each and every day with her Sweet Spirit and Lovely Disposition.

On March 14th, our lives were starting to change, and we didn't know it.

{The following is an excerpt from my journal}

On about March 8th Lilly had an ear infection. She was given the antibiotic Augmentin and took it for about 7 days when she began vomiting. Her pediatrician said that we should discontinue the antibiotics since she had most of the RX. (later we found that at this point she had a stomach virus- nothing to do with the antibiotic)

Lilly vomited about 6 - 8 times that day. She had no fever and no other symptoms, she had been a bit puny for a few days and really had no appetite, which we chalked up to the antibiotic which is known to be rough on the tummy -- the reason why we discontinued it --.

We snuggled on the couch and watched a marathon America's Next Top Model together. She was pretty lethargic, but had stopped vomiting and so when she asked to go to bed, I tucked her in.

{end of journal entry}

We had planned a camping trip to Tyler, Texas which was postponed a few times due to lots of rain. Because Lilly had been a but puny, it seemed just as well. The weather cleared enough that we were going to go on the 14th, but Lilly was still not quite 100%. My family went on the camping trip on this day, and Lilly and I were going to meet them the next day if Lilly felt better. We had every confidence that she would.

I got this picture from the camping crew that evening. They were enjoying themselves and looked forward to our joining them in morning.

The thing that you need to know about Lilly is that she LOVES camping. She had been asking to go camping for months, really. When everyone left earlier in the day, we didn't tell her where they were going, and she really was not feeling well enough to ask. I was going to surprise her when we drove up in the morning.

{back to journal entry}

About 30 minutes after I tucked Lilly into bed I heard the most horrible thud! and found her lying on her stomach on her bedroom floor- crying. I thought that she just tripped as she ran out of her room with nausea.

I brought her downstairs and kept her on the couch with me and we dozed for a few hours. She would frequently wake and ask for a drink of apple juice. I noticed that her hands were very shaky as she brought the cup to her mouth. I also noticed that her legs were shaky when I helped her to the bathroom. She couldn't walk on her own, and while assisted, she looked a lot like she had Parkinson's Disease. I started to get nervous then. I thought that she was really weak from dehydration.

At about 3:00 am I called the Nurse Advice Line at her Pediatrician's office. Twenty minutes later when the nurse called back (about the longest 20 minutes of my life) she said that if Lilly couldn't stand on her own that we needed to go the the Emergency Room.

As I prayed, I knew that it was the right thing to do, and I wasn't really scared or upset at the thought of it. I know that this is where the Spirit comforted me, because I am always just one small event away from panic.

I called John's mom to come with me, since she lives about a mile from us. I was in a time warp. It took me about 20 minutes to get out of the door! I was a bit befuddled trying to decide what I needed to take with me.

I left a message on Johnny's cell phone. I told him that by the time he got the message, we would probably be at home and that Lilly was probably dehydrated. His phone was dead and being charged in the van. (Maddy and Stephie had their phones in the tent-- I am not sure why I didn't call them???)

When we got to the ER, they gave us Gatorade to start the rehydration process-- that was their best-guess right out of the gate, too. We sat in the waiting room for about an hour giving her about 1 oz. at a time. She was very lethargic and glazed-looking, and she was not talking. I could tell that she was listening, but I didn't know if she could understand. She had such a pleasant look on her face. She was being so sweet, but I couldn't get her to respond.

{end of journal entry}

More of the story in next blogs.

Things I am thankful for in this situation:

The Power of Prayer and Personal Revelation - This was a strengthening experience for me. I had to pray on my own, without the strength and goodness of my sweet husband. The Lord responded immediately my giving me the Spirit to comfort me and the strength to go through this situation as the only parent.

Inspiration from the Lord - I am thankful that John and I were both inspired that Lilly should not go up with the rest of the family that day. She had been perking up, so we thought, but it was very apparent that she shouldn't go. I shudder to think of what might have happened being out in the boonies when she started this illness.

Pictures - During this illness which lasted the best part of a month, I kept on looking back at the picture below.

This was the last picture taken of her before her illness. I kept wondering if it would be the last picture of her as normal. (more posts will let you know what all was happening to her during this time)
I am so grateful to have pictures. They are so powerful and wonderful.

I have SO MUCH to be thankful for. And truly, I am.