SUMMERHAYS: May 2011

:: I don't actually expect or imagine anyone to read this whole post- it is long and detailed.::

I just received an email from one of my dearest friends asking again about the going-ons with Christian. She lovingly informed me that even though she has asked/written several times, I have failed to really explain.

I realized there are many who have expressed love, concern, and prayers in our behalf, that never really understood what was going on. And I fear we (I) may have come across as ungrateful to all of you by not personally responding, though I truly hope that, under the circumstances, you will be forgiving. :)

So- here is our story. It is long. It is detailed. But I want to remember everything.

Friday morning, Oct. 1st, 2010- Christian came into bed with me to snuggle a bit while daddy got ready for work. Suddenly, eyes wide, he cried out in terror that he was "falling".
"Help! Help me!! I'm falling! I'm falling!!" Then it was "wheee! I'm falling! I'm falling!" in a very strange way.
For a few minutes things were 'off'. I cradled him in my arms, terrified as to what had come over my son. The only thing that came to mind was to sing "I am a child of God" and hold him close.

It passed. Minutes later he was laying by me again and said "Mom, (chuckle) I wasn't falling!"

It was all very, very strange.

He had another 'episode' that same day as he awoke from his nap. He had wet the bed (which never happens), thrown up, and was completely distraught. He couldn't use his legs at all. I carried him to the tub and sat with him on my lap in the bath and washed his little body. The whole time he laid completely still. I was terrified. P came home, helped me get him out of the tub, and we took him to the Doctor. Our regular doctor wasn't in so we saw someone else. By the time we got to the office, Christian could walk okay, and was back to being perky and upbeat.

The doctor chalked it up to having the stomach virus.

I knew that wasn't right. At. all.

Saturday and Sunday were totally uneventful.

Monday he went to the dentist. While he was on the laughing gas, he suddenly acted very (extra) strange/hyper. And then it passed. The assistant said that a few kids respond completely differently to the gas and it hypes them up. That almost made sense, except that it was only for about 3 min that he seemed to act extra strange.

Later monday afternoon, we had swimming lessons with my dear friend and her boy. As Christian went to climb up the ladder and get out of the pool, he suddenly collapsed and could no longer stand or use his legs. He was giggling, saying "wheee!", and just..off. The lifeguard came over to check on things- and then came back with his manual, describing a few of Christian's symptoms and said it looked like a micro-seizure. Conveniently my friend, the swim teacher, was also a nurse. (seriously. Jane-of-all-trades. Very handy friend to have. :) )
She agreed that it was definitely a seizure.

And then life turned completely upside down.

He started falling off chairs, bashing his head on our wood floor. He would fall off the couch. He would collapse suddenly while walking. He was never safe. I had to keep a constant eye on him. His episodes changed- his left side would paralyze completely. It would happen instantly, without warning. And when it was over, he was totally normal.

We got an appointment up at Primary Childrens. I had video-recorded an 'episode' and showed the doctor. While in the office, he had another. The doc said it was definitely some kind of a seizure, but unlike anything he had ever seen. Ever.

We were given a prescription. We administered the pills. Regularly. Was told in a week we should see a drastic improvement. Nothing. Couldn't ever get a hold of the doctor or the assistant. Finally got communication- Assistant shocked that there was no improvement. Upped the dosage.
Nothing.

Seizures increased in frequency. 15+ a day.
Christian's balance worsened. Couldn't Run. Living in fear of seizure.
Seizures changed again- now they frightened him and he was fearful of 'falling'.

Halloween fell amidst all of this. We went as the Peter Pan clan- Christian as Peter, Chan as Michael, Me as Wendy, P as John, and Anna was the perfect Tinker Bell.

It was rainy and wet. The boys napped and we ended up missing the trunk-or-treat (which lasted approx. 7 min). We went out to our friends house and trick-or-treated on their street. Except Christian was stumbling. constantly. And had several seizures. And anna had to be carried. so after about 30 min, we called it quits. (we happened to trick-or-treat at our Dr.'s house- and he recommended going to the ER at PCMC if we couldn't get seen as a last resort. )
Halloween was depressing.

Tried to get another appt. at PCMC. I left a message on the nurses phone line. On a Monday, I finally got through to the schedule-lady. Was told May 3(!!!!!!!) was the earliest we could be seen. We couldn't get on the 'fast track' because we'd already gotten one appointment that way. I was completely and totally beside myself. On the verge of tears, I told her that was completely unacceptable. My son is having 20+ seizures a DAY. The same boy that a MONTH ago was running, kicking a soccer ball with perfect coordination could now hardly walk. The gal told me to leave another message on the nurses line and then they would determine if our situation was 'urgent enough'.

So I did. Now in tears, and with the fierceness of a mother who is watching her young child suffer immensely, I left a message. Telling them we needed to be seen immediately. That this was an incredibly urgent situation. And again, that my perfectly capable, soccer loving boy could barely walk.

I was home alone. Trying to care for my 3 little children. My oldest (not even 4) was deteriorating before my eyes. I felt so, so alone. I was so frustrated. So angry. So hurt. So confused. I prayed desperately to God. Begging for His help. Pleading to feel His hand.

Sobbing in hysterics, I called my father. My son was suffering. He could do nothing any more. How did no one understand the seriousness of the situation??? What was wrong with these people?? My dear dad was furious. My mother was furious. She cried with me on the phone. In fact, she cried with me numerous times.

About 3 hours later, I received a call from a nurse. She told me she agreed it sounded very urgent- and that we could get an appt in about 3 days, but that she recommended we come to the ER at PCMC that evening. She said that by doing so we would for sure be seen by those we needed to see and that Christian would be able to get the care he needed. She said there was a chance they would check us in overnight but she wasn't sure.

So we packed our back and a suitcase for the kids for one night.

After school, we drove up to AF, dropped the kids off to Mom S, with the "possibility of staying overnight".

We checked in to the ER at PCMC- and after Christian had 3 seizures in the ER room alone- (one of which I was able to record on camera for reference to the other doctors)- We were admitted to the neurology dept.

Daddy and son waiting in the ER

Patrick headed back home as he still had to teach the next day, leaving Christian and I in our little hospital room that was to be (unbeknownst to us) our home for the next 2 weeks.
The first night there, the nurses wanted me to push to call button every. time. Christian seized. I had to sleep in the hospital bed with him so I would be aware of his seizures. (He no longer called out during them. In fact, he would hardly breathe. Just clench his mouth and tense up. It was scary.) Each time I pushed the button, about 5 nurses would rush into the room, Flip on the lights, grabbing the oxygen mask and several other various items. After about 7 times of this- and the outcome being exactly the same, they lightened up a bit.

I was also to track the time/duration/symptoms of each seizure.

Simply put, I got no. sleep.

First night at the hospital

Christian was hooked up to IVs, oxygen, and heart rate monitors. If he moved too much, the oxygen monitor would come off and we were subjected to a steady 'BEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEP" until someone came in and refitted the monitor. This happened about 3-4 times (at least) an hour. Sometimes the nurses would let him be off the oxygen monitor- the boy wanted to move!

during one of 2 very extensive EEG scans.

When he woke up, he HATED the thing on his head. Hated it.

We ended up staying in our room for 2 weeks- seeing the entire team of Neurologists every few days and at least one neurologist 1-2x a day. They pumped my boy full of drugs.
Nothing worked. No improvement. at. all. He was now having 70+ seizures/day.

I would wheel him around in a little wheelchair- just to get out. For a change of scenery.

Christian loved to go see this Spiderman statue on our walks

Cousin Michael came all the way from WA to visit and help. Christian almost 4, michael almost 5. Christian is holding his little Ironing Man toy (thanks N&M) and his Buzz rocketship (thanks Tia)- he carried these with him constantly.

PCMC has a play room on another floor- and we went there several times. Christian would try to walk around and play, but he was so unsteady we tried to get him to just sit and play with some toys. It was a wonderful place- full of toys- and Christian loved it.

Needing help to walk in the playroom

One day I hit a low. My brother and his wife and their 5 kids all came to visit. They brought christian some books and cards. Christian was walking around our room with the boys, and suddenly seized and fell face down on the hard hospital floor. It gave him a bad bloody nose.
Later that evening we went up to the play room. I was trying to follow right behind him with my hand on his back- but again, he seized, fell face front, and got another bloody nose. This time his nose was swollen and bruised.
Broke. My. Heart.

One of several distractions available- this beautiful huge lab/retriever- Christian loved her :)

Eventually, 3 days before we left, the magic combination and dosage of medication was found. His seizure drastically reduced- and in the end we were able to go nearly an entire day with only 2-3 seizures. It was a miracle.

My boy is home now. He's playing on a soccer team. We are totally seize-free. He has to take his medications every morning and night- but he has gotten incredibly good and obedient with it. He comes immediately when we call him to take his medicine.

We witnessed a huge miracle with our boy.

It was a horrific experience. A mother's nightmare. It was totally traumatic for us- for me. Even now, over half a year later, writing this brings such clear images to my mind and crushes my heart yet again. But I'm not sure if I would trade it. The closeness I felt to my Savior during some of the hours of lying in bed with my little boy- the Spirit that was in our room-the testimony I had strengthened that I have a Heavenly Father who knows me, knows my boy, and loves us.

I did feel like I aged immensely. It's amazing how going through something like this helps you put things in perspective. And how silly some of my 'cares' seemed to be. It's good for me to go back and remember- remember how THIS- my boy, my kids, my husband, my family, my God- these are the important things in life.

I am finally ready and able to move on. I will never forget this- nor the love we felt from family and friends who came to visit us and showed us immense support. Huge thanks goes out to Mom S.- who watched Anna and Channing and brought them up to visit. They brought up cupcakes and pizza to celebrate P's birthday (in the hospital).
Huge thanks to my brothers and their families for their visits and gifts. Huge thanks to my sister who drove all the way out from WA to support me during this time.
Thanks to our friends and ward family who held a fast in Christian's behalf.
Thanks to P's schools and principals for being so understanding and supportive. Thank you for the teddy bear. Thank you for the incredibly thoughtful card.
Thanks to my dearly beloved husband. He traveled long hours and many miles during the two weeks to be with us as much as possible. He is the Best daddy. And I fell in love with him all over again seeing the pain in his eyes for his son. He hurt. He hurt a lot but focused on Christian and I instead. I love you, darling.

Thanks for the prayers and love.
Thanks for the hugs.

Thanks.