Today:

He's doing so much better, it's our first full night without seizures. He's wanting to eat, play with toys, and tried to get off the bed once. So thrilled!
Neurosurgery wants to leave his shunt as is, but have us check back next week to remove stitches and probably change the setting on the programmable shunt. This entails holding a impressively powerful magnet over his head and changing it. It's amazing that they can now do that without surgery. He is overdraining, but it's better to leave things as they are, treat the seizures, then discuss changing it later.
Neurology is changing his dosage of one med, watching him for awhile, then maybe adding another med in a few weeks, depending on how he's doing. We follow up soon with and EEG and apts. They're not doing an EEG now, he's had a lot of them in the past, and the Dr. is really familiar with his brain...she things it will not provide more info that would change her plan. Thanks though Becky, that was my first instinct too! I'd love to "meet" your sister, we love PICU and ICU nurses, they're amazing people.
Heidi, let me know what you dad says..
We should be going home sometime today. I'm taking volunteers to sit up all night, staring at Monte, making sure he's not going to have another seizure without me knowing about it...
I don't know how we're going to go through nights now...
Can't talk about it...

Update

Monte went into surgery Monday at 5pm to place a bolt in his brain to measure his ICP Intercranial pressure. It came back surprisingly low...which means for now no shunt surgery. He's now hooked up to a monitor that reads the bolt through fiber optic cords hooked up to a computer. He came out of surgery into the PICU, where they monitor him constantly. It was -8 most of the night. Odd, since last time it was 25. Normal is like 5-10... He also had a small seizure last night. The current plan is to monitor him like this for 48 hours. However, it really surprised all of us. We're waiting to see Neurosurgery again to discuss the low pressure, the shunt seems to be overdraining, causing pain and possibly seizures??? So we're still waiting...
He did wake up a bit more today, finally, and felt like nibbling at food a bit. I'm encouraged, just tired and frustrated a bit too. He also used 3 signs, also good. But isn't able to suck out of a straw. It took almost 6 weeks to recover from the last big seizure in february. We're thinking positive thoughts...
And watching a ton of Disney channel, it seems to calm him to hear the music, also a good sign. Thanks for all the posts, I really appreciated them and feel your support.
Tiffany, what's going on with Katheryn? I do wish we were at the same hospital, we're incredibly lonely. I did get my cell phone charger, so you can text me again, but it's not technically allowed in the PICU, so I have to keep it silent and not take calls. Doug and Piper just arrived, I'm taking her out of the hospital for a brief respite together while Doug and Monte spend time together, then they're leaving about 7 tonight again.
Allyson, will you keep Grandma T posted?
Love you all!

Update

Monte went into surgery to place a bolt in his brain to measure his ICP Intercranial pressure. It came back surprisingly low...which means for now no shunt surgery.

The Latest

On Saturday night/sunday morning, Monte started a seizure that lasted at least one hour, possibly a lot longer. We administered 2 meds, then the paramedics gave another. Monte and I rode the ambulance to Skaggs hospital, then a helicopter to Cox. Then the seizure stopped, but he required oxygen most of the day. We were then transferred to St. Louis Children's via ambulance (the weather grounded the helicopters). We've been here since Sunday afternoon. Yesterday he had two tonic clonic seizures (grand mal for those stuck in the 80's), one on the x-ray table. He stayed lethargic and unresponsive most of the day/night. Last night he began having a series of focal seizures (again, petit mal for those without medical education!) every 35 minutes or so. He had 11, then received another medication that seemed to have stopped them. Right now we are waiting for neurology and neurosurgery to determine the best course. Neurology is inclined to keep increasing medication...a decision I fight. We want him to need the minimum meds required, to keep cognitive and physical function. He's already at a high dose...If this is a shunt malfunction, that is causing the seizures, increasing meds will just mask symptoms that will diminish as the pressure on the brain is decreased. But to complicate things, the CT shows decreased ventricles. (Some of you might remember this happened in February, the Dr.'s were convinced the shunt was fine, then did an ICP surgery, placing a bolt in his brain to measure pressure. Normal is 10-15, he was at 25!!!)
We never want to rush into surgery, so I understand the need to make a clear decision. He has had 28 shunt revisions though, his body doesn't seem to accept them and wants to shut them down and destroy them.
However, it is hard being in limbo, seeing him so lethargic and obviously suffering and being unable to make plans. He's even leaving his IV alone, he hasn't tried to pull it out of his hand at all. This is a good thing, as it took 10 pokes, two life flight teams, and finally they pulled a chief anesthesioligist out of a heart and liver transplant to place an IV. Boy was that humbling!
He's bruised all over, dehydrated and miserable, but doesn't even seem to know it.
Please excuse my dramatics, it's been a long few days...but if I may ask a favor, we strongly believe in the power of prayer. We know that it truly does sustain us and help Monte feel comfort in this environment. Please pray for an obvious knowledge of Monte's needs, so that if it is the shunt, it will be revealed so that we can move forward, and if it is not, that he will recover quickly without needing a permanent increase in seizure medications.
Doug and Piper are staying at home for now, so Doug can work and Piper is not having to see Monte like this...it's really hard on her, as it is all of us. (Last time she started yelling at the doctors for hurting him). But everytime we talk she tells me she's ready to come pick me up.
This is hard...
Thanks for reading and caring, I will update as I can. If only I had a phone plug!!

Chocolate Caramel Brownies

This is another addicting recipe, provided by my good friend Jill Camp. We used to make these together from like 6th grade to Senior year. Then we'd stay up all night eating them and memorizing the songs to Newsies and other movies like Saturday's Warrier...we LOVED those movies! Lots of good memories, all rush back with just a simple bit!
Anyways, made them for a girl's night during the Father and Son Campout, and again, they were a hit! Here's the recipe by request:

Chocolate Caramel Brownies

1 14 oz bag Kraft Caramels

1 german chocolate cake mix

1 small can evaporated milk

3/4 melted butter

6 oz chocolate chips

Melt unwrapped caramels and 1/3 cup evaporated milk in saucepan, careful not to burn. Set aside. Mix together cake mix, melted butter and 1/3 cup evaporated milk. Press 1/2 dough into a 9X13 greased pan. Bake at 350 for 6 -10 minutes. Take out and sprinkle with chocolate chips, then pour caramel mixture over the chips. Crumble remaining dough over the top, bake 15 minutes. Cool slightly, then refrigerate for 30 minutes to set the caramels. (I always skip this step). Cut into squares, enjoy!

Chocolate Marshmallow Cookies

I've had a few requests for recipes lately, and this is incredibly convenient for me to put them here. I have several other favorite recipes, check my past posts.

Just in case anyone else wants a wonderful dessert idea, I'll share it with you. Let me know if you cook them!

Chocolate Marshmallow Cookies

These are addictive, and wonderful! My mom used to make them a lot growing up, and I'm so glad I have the recipe, we love to make them and share them, they look really fancy. Also, it helps a lot if you actually sift the dry ingredients together, it blends the cookie a lot better.

1 3/4 cups flour

1/2 tsp baking powder

1/2 cup shortening

1 egg

1/4 cup milk

1/2 tsp salk

1/2 cup cocoa

1 cup sugar

1 tsp vanilla

1 bag marshmallows

chocolate frosting

Sift flour, powder, cocoa, and salt. Set aside. Cut marshmallows in half. (Easiest to use kitchen shears dipped in water). Cream sugar and shortening, add egg, vanilla and milk. Beat wel. Add dry ingredients. Drop by tsp on greased baking sheet. (Or roll in balls). Bake at 350 for 8 minutes. DO NOT OVERBAKE! Remove from oven and press 1/2 marshmallow on top of each cookie. Bake 2 minutes more. Cool. Make sure marshmallow is firm and frost with chocolate frosting. (Make from scratch using the recipe on the back of the Hershey's Cocoa package, or cheat and use purchased frosting).

I'll add another picture with frosting on it later.

Field Trip with Monte

At a recent field trip, I was asked to work the role of "nurse" and accompany Monte on his field trip. We had such a nice, fun day. I enjoyed spending the entire day with him. It was touring a local college, enjoying the kitchens, barns, museum, original school building, and greenhouses. It rained the entire time, and it was quite a bit of walking outdoors, but Monte and the other kids were good sports. I did get one irritating comment from another parent:"Where does he go to school? You mean he goes to a regular school? With my kid? Oh. I mean, that's nice." I wanted to ask her where it was that she thought he belonged! We find that attitute still prevailing a lot in the older generations. Thankfully, all the kids who do attend school with Monte are learning about differences, acceptance, and friendship, so these attitudes are being phased out. And it was only one parent, the others were fantastic and knew that Monte was their kid's friend already.

More Thanksgiving Point Pictures

We'd better start saving for a horse, Piper was a natural! She loved every second of her rides, we had to do two just to talk her into leaving. Then she patted the horseys and thanked them for the ride.

Thanksgiving Point Fun

We had a little bit of time before our flight and drive back home, so we let the kids run around at Thanksgiving point to get some wiggles out. It was perfect!

Grandma and Grandpa Tidwell

When Grandma saw Monte for the first time in over 18 months, she exclaimed, "that's my boy!" He lit up with the biggest smile and immediately reached for his great-grandma. They have always had a very special connection, one that is not penetratable by miles or time. She spent time singing to him, cudding him, and even getting down on the floor to play with him. He loves her so much! We're so grateful to have spent so much time with them this week, and grateful that their health allowed them to come.

Side note: when Piper heard that, she emphatically clamied, "He's MY boy." (With a serious scowl). How wonderful to be with family who loves us so much.