Reason For The Season

Things are starting to wind down around here. We are going back to our "nice and boring, sequestered life" as someone put it ;)

We have had a few nice surprises in the last month. The g tube is now 4 weeks old, and has been more beneficial than tedious. The childrens group from our church wrote Cole Get Well cards the week he had his surgery. It was a thoughtful gesture, as he has not been able to attend Primary for the majority of this year.One of our readers took a lot of time and care and sent Cole a package. She was introduced to our blog through a mutual friend when we were fundraising for Cole's service dog. Inside was a beautiful pieced quilt, portraying some of the things that my little man loves best. Bubbles, CARS, football, basketball, dogs (of course) and purple and orange to represent Dravet. The time that she spent thinking about this project and then actually doing it, brought tears to my eyes. Thanks Y, all the way from Texas!Cole really wasn't interested Christmas morning, like I thought he would be. He finally understands the concept of presents so I thought he would be elated to see a room full of them. Nope. Too many people; too much noise. He ran away and wanted nothing to do with the festivities. Brian had to stay with him as all of the excitement produced a small cluster and I ended up unwrapping his gifts. Once he was presented with the new toys, unwrapped...he was okay with it ;) Favorite toy=the blender.We took cues from his therapists and got things that served multiple purposes. It's quite an adventure to purchase a toy and think, "Is this going to help with fine motor skills AND critical thinking skills?" and debate within yourself if it is going to be useful. The blender was not so useful, but he is obsessed with mine. Thanks grandma!

We were so grateful that we were able to stay with our family for 5 whole days and part of another! It was a miracle in my eyes. Our car was packed to overflowing with all of the medical supplies, IV pole, scales, etc. but we did it! He only needed rescue meds twice while we were gone, which was pretty good withstanding all of the stimulation he was going through. We even went to the park and lasted for 30 minutes before he started seizing. It was great! Being together was what mattered most and it happened.

Giving is much more fun than receiving. Brian also had a birthday during all of this madness! He got a bunch of grey socks (his only request) and a couple of other things. He wanted an ice cream cake, so I was glad to give it to him ;)Wow, we're getting old.May we all remember the main reason for this time of year.

Living On The Edge

We have had an epic week around here. Lots going on, good and not so good. However, things have started to feel a little bit like Christmas. We took Cole to the mall on Friday. He did great! We decided to risk it and take him to our church Christmas breakfast on Saturday morning. Once again, he did great! There have been lots of small seizures, but nothing big since Wednesday. Apparently, PCMC is just stressful. I even baked yesterday. Pumpkin spice whoopie pies, brownies with Christmas sprinkles and peppermint meltaways...all in miniature. Yum! Then, I gave it all away ;)

SO, we pushed our luck and went to church as a family today. This is the first time in at least 9 months that we have all been there at the same time. The last time I took Cole was in June, when Brian was out of town, and we ended up in the hospital with something he picked up two days later. It was a musical program and we sat with friends so we could play "pass the baby". He started having a small cluster at the beginning, but then pulled out of it so we stayed. He did really well for the first hour, and then was just done and missed the last speaker. Meetings just shouldn't go over I guess ;) I went to teach my Sunday School class and thought that the boys had gone home. I was surprised to come out into the hall afterwards, to see them just passing by with a quick wave, off to talk to someone else. They spent the entire time socializing! I then forced them to start heading for the car since I felt like I was breaking my own rules. I woke up this morning with just a shadow of a voice and it was too late for a substitute. I am such an advocate of "If you are sick, stay home!", that I felt as if I should have a sign around my neck saying, "Don't come near me! GERMS!" The chorus of coughing in sacrament meeting did nothing for my anxiety.

Hopefully this cold doesn't stick around for 2 1/2 weeks like it did last time. I would really appreciate an illness-free holiday. Here's to hoping that we can have more adventures in normalcy this week!

Our Christmas Wish

We were brave and took Cole to the mall to see Santa. The same mall we had this experience in. I was more than a little nervous. Living life to its fullest. ;)

This is the first time in Cole's life that he has had a picture with Santa. He'll be three in a few weeks. Something that seems such a normal part of childhood had not happened for him yet. We all have scrapbooks full of pictures of us as children either screaming our heads off or gazing with wonder at the man with the beard. I didn't get the initial running towards the jolly guy in red on video. Cole was so excited, he had a hard time waiting his turn.
We did however, capture our wish to Santa and some of moms tears. It was a big day. I like Santa's reply.

Santa, I want a cure from Niki Hyer on Vimeo.

We wish for a cure. For Cole, and for all of our friends.As we left, Cole waved and said, "Bye Santa! I love you!"

The Beast

The Beast decided to come out of hiding yesterday. At PCMC of all places. You would think that in a place surrounded by doctors, we would have a little help. The last two times we have been there in the last two weeks, Cole has needed rescue meds. Weird.

We went for Cole's 2 week g tube follow up. He started seizing in the playroom, on his hunt for a cozy car. The jerking continued, so Brian brought him back to me in the waiting room, to give him meds. It was our turn to go back to get height and weight. We explained what was happening and they put us in a room. Our surgeon came in, saw what was going on and said, "I'll give you a minute and come back" and walked right back out. I guess we looked like we had things under control? He asked if he could do anything to help as he was backing out of the room and I mentioned that Cole's sats were dropping and we could use the oxygen in the wall. Guess he didn't hear me? :) I doubt he has patients seize in his office very often. I had to send Brian to get someone else to find the tubing. The surgeon didn't come back for 15 minutes.

It turned out to be a big one. 15 minute Generalized Tonic Clonic with hard convulsions. He needed two different rescue medications and we had the staff searching everywhere for an oxygen mask. The O2 is right in the wall, but rarely do people use it in clinic...just us ;) He had post ictal blindness again. That has not happened for a few months, and it is only the fourth time ever. For something so rare, it is happening a lot. Chalk it up to Cole being complicated I guess. It did help when we were giving him O2. He couldn't see the mask we were holding by his head, so he did not fight it like he usually does. Gotta find something good about it, right?

Poor kid. His post ictal phase was rough. He couldn't see, couldn't walk and was very limp for a long time. Plus, the lovely angry elf came out with the Versed. Needless to say, it was an interesting visit. However, Cole's g tube looks great! We do love the surgeon even though he was not the greatest first responder to our predicament. We can stop taping it and can treat it like normal skin. He can get back into the the bathtub and even swim (if that was a possibility). We came home and just gave him a full tube feed since he was still in his post ictal phase. I am loving this thing more and more each day. There is no way that I could have convinced him to eat lunch while he was riled up with Versed and still kind of limp from an intense seizure. He doesn't have his post ictal naps any more. It would probably be easier on him, and us, but something has changed and he does not fall asleep any more, hasn't for a while.

I am hoping that we can put the beast in hiding again. 24 days without a GTC! Our previous record was 22 days. This is something to celebrate, but it always hurts when he has gone for so long without a Generalized Tonic Clonic.

You can never get comfortable. Things will change. They always do.

Happy Holidays

To all of our friends, family and lurkers. Merry Christmas! Since Cole is light sensitive and can only go outside with his FL-41 lenses, we took a different approach to our card this year. We decided to have a bit of fun. Our friend did a great job designing this card for us. You can visit her shop here (she has a child with Dravet too)! We hope your season is great.
Brian, Niki and Cole

Mr Incredible

Cole has some Obsessive Compulsive tendencies. Things like turning off all of the lights in the house before he goes to bed, drinking his cream only from the blue cup with the green lid and his movie preferences. Lately, it's been The Incredibles.

I am not even sure how many times a day he will watch this movie. With the glorious iPad, he can navigate to certain scenes with a few touches and he will watch them over and over and over and over again. At least during the Woody phase we could rotate movies. There is only one Incredibles. Every time the nurse came in, he was watching it.

We have had a busy week, but my little guy is a superhero. Just ask him ;)

Momma, I a superhero!

He has been doing great this week. Having increased complex-partial seizures, but today *knock on wood* is 3 whole weeks without a GTC! That is the longest he has gone in months and months! It seems that the new diet ratio is really making a difference. I am sure that having all of his meals now that we have the tube is making a difference too. Loratab during the beginning of the week took care of the pain. We are now just using Tylenol suppositories when it seems like he needs it.

The tube has been great so far! It has been really tender, which is expected. We got it checked out yesterday for some oozing and a hard spot, but things seem to be fine. We follow up with the surgeon on Wed. I think it was Thurs that we had our first ever episode of no crying or screaming or spitting involved "med pass". He just sat and watched TV while I pushed most of the meds through the tube and he took his Keppra by mouth like a breeze. It was a big moment for me. For both of us.He did not want to eat on Thurs evening, so I just hooked him up to the pump and he watched The Incredibles (of course) while the pump did the eating for him. No pain, no fuss. It was awesome!

He truly is incredible.
Here he is with his incredible friend, Bertrand. B turned 3 years old this week, proving multiple doctors wrong. Talk about incredible. We love you B! Thanks for letting us come to your party!

Utah Dravet Family

We hosted a little holiday party for the Utah Dravet families. Turned out to be not so little! ;) This is our second family. It was so nice to get together and not have to worry about seizures interrupting the fun.There were 30 people here, and we were still missing two families. Cole had to take a break and go downstairs for an hour or so. Yet, no big seizure! He went to Bertrand's birthday party in the morning and had his comfort zone flooded with people in the evening. Two months ago, this would never have been possible. Remember when we went to our last birthday party in July? Did not even make it ten minutes until he started having a GTC. The new diet ratio really seems to be working!

The parents
The cute kids. Jessie, Amelia (who did not want her picture taken), Isaac, Kimmie, Stockton and Cole
The kids just played and had a great time while the adults got to chat. It was wonderful! We're going to have to make this a priority in our schedules. Wiggles in the background is totally acceptable. :)Cole took the last two pictures!

Castle of Chaos

I have kind of been missing from the blogosphere because things have been more than a little crazy around here. In the last few weeks we have had a lot going on.

Getting ready for Christmas.
Lots of snow, which necessitated giving the girls a bath so they could sleep insideGoing to school. Both of us.We had an epic fail IEP meeting yesterday that I will get into later. Right now it is a little fresh.

G Tube surgery. Doctor appointments. Therapy.

We hosted guests from Florida and one all the way from Tooele ;) Daddy had to go to Vegas to speak at a conference. Who knew he was an expert on social media? Apparently he is.

We also hosted a party for all of the Utah Dravet families. We'll make sure to post separate on that ;)

In between all of the big stuff, we have been trying to keep up on the little stuff - like the mountain of laundry and cleaning the toilets. Not a lot of time for blogging. We've been busy watching Incredibles, with a little Imagination Movers sprinkled in here and there.

Morphine

Most people would go to sleep. For Cole, it just took the edge off of the pain, so that he could be himself. Trying to break into other patients rooms, talking to nurses, pushing buttons and cruising around in the cars. Gotta love it!

Untitled from Niki Hyer on Vimeo.

Adventures at PCMC

Last night was eventful for Mr Social. I think he visited every nurses station on this floor and probably would have went to the others if we had let him.He spent the evening pushing the elevator buttons, cruising around in the car and chatting it up with the ladies.He slept well, except when the nurses came in for vitals or meds, then he would say in his sleepy voice, "Get out!".The poor nutrition and skin thing has really hit home today. With Cole walking around last night, the port hanging off of his IV rubbed his foot with the movement. This has created a monster blister. Not enough good stuff in his body to prevent skin breakdown. He kept crying this morning telling us that his foot hurt, but everything was covered in Keflex, so we couldn't see what he meant. By the way, the IV wasn't patent anymore either. Not surprising with him, but less than a day? Come on! So, once again validation that we are doing the right thing.

We pulled the IV, got tegraderm on the blister and he's back to hitting the halls.Except he is making Daddy carry him since he doesn't want to walk. YET, he is also making him push the cozy car around with them. Wouldn't want to leave it out of his sight (this one has a walkie-talkie and lights on the top) you never know who is going to come looking for one around here ;) Cole has been stealing all of the nurses equipment and even trying to be a part of shift change.We have given our first feeding after a couple of hours of trying to figure out what the heck was going on. *Sending vibes towards the dietitian* He's holding it down well and we're going to try a longer feeding with a pump in an hour or so.Cole is complicated. The diet, Dravet and everything else about him makes him a "hard patient". However, he touches most of the people who work with him and they realize that he is special.

The Button

Cole got an AMT Mini button today. Right now it looks pretty gross, being held in by two stitches and has dried blood around it. Doesn't quite look like the beach ball plug I've described before, yet. I'll spare the close up shot tonight.

There are a lot of reasons that we did this. We (Cole included) are tired of the daily fight with medication. It is a wrestling match each time and rarely do I get it all in. Something usually ends up coming out on me, the furniture, clothes, etc. I don't know how many shirts I have had to throw away that have been a casualty of fish oil. Man, that stuff stinks! Even if you pre-treat and wash in hot water immediately. I can still smell it after three or four washes and the oil just seeps in and stains. Both of us being naked for meds in an effort to save clothes, really doesn't work ;) We know that Cole is going to have to take medication for the rest of his life. Now, thanks to this nifty tube, I won't have to sacrifice cute clothes, or do a headlock for regular meds ever again! (fingers crossed) I think Versed will still cause me to have to pull out the wrestling skills.

Cole has been gaining too much weight. "What? I thought kids who are losing weight get tubes?" If that is what you are thinking, you're right...unless the kid is on the ketogenic diet. Cole is not eating enough of his meals, to properly use the diet for it's full effect. Instead of all of that fat bonding to the carb+protein and then burning the fat to produce ketosis, his body is storing the fat. Pants that I had completely tightened the waist on two months ago, don't fit right now. So, Mr. Chunky will finally start to lose a little and hopefully take full advantage of high ketones. Hey, McDonalds three times a day everyday will make anyone get a muffin top! (Except maybe Brian) Cole has never been really interested in eating. So, now he can eat the good stuff and the yucky stuff can go in the tube. Next time he brings on one of his famous hunger strikes, we can just mix up KetoCal formula and push it straight through. It will be great for traveling and also to make sure he gets enough fluids. He forgets to do things, like drink, when he is distracted. Hopefully with better diet control, it will equal better seizure control. We don't want him to end up like a few other kids on this diet and turn completely anorexic. He needs to enjoy food. Right now it's just traumatic. The diet is important enough for controlling the drop seizures alone that we need to stay on it.

His nutrition will drastically improve. Right now, with the med fight, he is only taking 2 of 9 meds on a regular basis. There are not a lot of vitamins and minerals in heavy cream and he is not being supplemented with other foods. Watermelon isn't really known for it's nutritional value. If Cole gets bruised, which he has been a lot lately, it stays for 2 1/2 weeks. One of his IV sites from his previous eye examination, did not heal for well over a month. There just isn't enough good stuff in his system to promote healing. We are hoping to get him back on track soon so that he doesn't end up with a cold that turns into pneumonia, or something worse.

These are just a couple of the reasons that he had this surgery today. It's something that took a lot of hard thought, but I am loving it already! When we just slipped that Keppra in right after the O2 crisis, it was like a small piece of burden was being lifted from my shoulders. I really think that it will help our relationship too. I don't think that I am getting out of the "mean mommy" role in his eyes anytime soon. Yet, if he gets to the point where I really need to give him something; I won't have to blow in his face, plug his nose, try to measure what went in and what went out by a small puddle on the floor, coerce him to swallow, or a myriad of other things I have tried. I have a friend who wishes that all kids were born with g-tubes ;)

I'll post more of an update on our social butterfly tomorrow. What? You didn't think that he would refrain from flirting with the nurses, hitting the halls after surgery and being in pain, did you? This is Cole we're talking about here! Mini Hulk has super strength and super lady killer skills.

Performance

Cole got my memo on performing...a day late.

We woke up ever so early to be here by 6:30 am. However, before we were even checked in, Cole had around 10 complex-partial seizures in the admit area. The waiting room was so packed, there were people down the hall. Craziness. SO, we had to give him Klonopin before we even started the process. Why couldn't he have done this yesterday at school? *sigh* This kid ;)

The surgery went well. After explaining to anyone that would listen about the diet and "no Dextrose", we were confident. We like the surgeon and the anesthesiologist has actually worked with Mini Hulk before!

Cole went through his usual Angry Elf phase (name that movie) when he woke up, but it was a little toned down thanks to the prep talk we gave the team. Nice! We are on the third floor now, which I might say out of all of the floors of this hospital (we've used them all), is my favorite. Private bathroom, no sloping floor, and a full size bed for the parents, not just the pull out chair. Once again, nice!

Not so nice is that Cole's oxygen dropped to where his sats were at 10% (that's low) when I was trying to give him his Keppra. Champion breath holder. I warned the nurse, told her everything IV today would make every one's life easier. The doctor wouldn't order the IV Keppra, so our lovely nurse and a student got a scare and watched our baby turn blue. Mom knows best! We got to use the tube for the first time and just pushed the rest of that med through ;)This is the only pic we have so far as Mini Hulk has been sleeping off his incredibly high doses of meds with a nice, long winters nap. Mom on one side; Dad on the other.

We'll update later and show everyone the new tube! So far, a good hospication.

Hospication

This has given me a laugh more than once. I knew that I needed to post it the next time we checked in to "the hotel".

Top ten reasons why hospication rox my sox:
(10) We get all the lights and sounds of a casino without the smoke.
(9) We never have to worry about bad weather ruining our hospication.
(8) In case of an emergency, qualified personnel is always an earshot away.
(7) Friends and family get to participate and bring treats.
(6) Wi-fi is always available.
(5) A restaurant is always within walking distance. Nay, even within our living quarters.
(4) Every two hours, day or night, someone checks in to see if everything is okay.
(3) Room service comes standard for at least one of us.
(2) Upon return from hospication, I can flash my wristband and brag about being a VIP of my favorite band.
(1) We’re guaranteed to have a better time than at least one other hospicationer.

Back To School (or Normal Part II)

So, I wrote the majority of the last post weeks ago. Had no idea how things would be once we started "the test".

Funny thing, here I am, sitting in a small, empty room at the school. I thought that only Cole was the one going back to school? The lovely laws that state teachers and aides can not give rescue meds are good...for them. Okay, I get protecting the employees; who's protecting the kids? They informed me that if Cole has a seizure, all they can do is call 911. That means 10 min with no rescue meds. Cole will go into status (seizure that you can't stop) for sure if he seizes for 10 min without intervention. His major seizures are still over 10 minutes when we give the meds immediately! We have learned through a lot of practice, that the longer we wait for intervention, the longer the seizure. SO, after hearing how sensitive to stimulation he is, they suggested I stay on campus while he is here. So here I sit, in another room, for 3 hours a day. If Cole is going to get meds on time, it has to be from me. Didn't expect this one! We've only been doing this for three days and already I am going crazy ;)

Here's the kicker. Cole is behaving. He is polite. He is proving just how "normal" he can be. He is adorable. Heard that one before! ;) Basically, he is making me look like an overprotective idiot. This child has had more stimulation in the last week than he has in months. Still, no major seizure. What is going on? I mean, I'm happy...but confused.

To paraphrase one of my good friends:
I hate how in our lives (with kids who have special needs) we are always waiting for the other shoe to drop. We can never get comfortable. We can celebrate the small stuff, but are always looking around the corner, waiting for the beast to rear its ugly head again...because we know from experience that it will.

I guess that I really am the one that is getting schooled this week. Always expect the unexpected. I thought that I had learned that lesson.