Tuesday, June 22, 2010

Hit and Miss

Some days are good, some days are not so good. However, good is still relative.
Cole still will not eat consistently. BUT-we are getting two out of eight meds in him daily. Success!
The drop seizures are still fantastically disappearing-only one or two a day. Success!

He is still having absence seizures and I think his night time seizure activity has increased. He has been super restless and has been waking up in the middle of the night a lot. It's hard to tell if he is seizing in the night, unless you are touching him. The overnight EEG at the hospital confirmed that he is having myoclonics, absence and some 15-30 second atonics in his sleep. I'll find out more about actual frequency when we see our neuro next.

Today I had to wrestle him to the floor and take a small morsel out of his mouth. It was not meal time, it had been left behind from a previous meal, and I had missed picking it up off of the floor. He bit me; hard. Can't say that I blame him, I would probably bite someone that was trying to wrestle food out of my mouth (when I hardly got any) too! His ketones have dropped to low today, even though he has been eating better than yesterday. I think that the only diet more difficult than this, would be Prader Willi Syndrome. At least I feel that he is starting (barely) to get in a rhythm.

Cole and I are a little fried from Daddy being just a shadow of a presence this month. However, things are looking so good for him and all of his presentations, conferences, interviews and classes have been going really well. There are people out there that are recognizing just how talented I already knew he was. Too bad that you can't "get your name out there" via Skype! ;) I am so proud of him. I know that he is burned out too. He's going to actually be home for four straight days this week-Hallelujah! One of his trips was cancelled last week, so we got to go to his graduation banquet. It was wonderful. Good food, and a whole evening with just the two of us-it's been a while. He is really already starting to miss his team. After three years of 6+ hours a week in class and more on the phone, you become a little family. Part of me can't believe it's really over! Being Brian, he wrote me the sweetest card and gave me a small gift at the end of the night, telling me how much he appreciated my sacrifice. It was a tearful moment for both of us, as we reflected on how hard the last three years have been. I am so grateful that we have done it together.

The potty training thing is not really going so well, but we don't have a deadline. I know, it's crazy to add it on top of everything else, but the dietitian really feels it is important to train his body. Cole's speech therapist looked at me like I was insane when I told her we were doing it because it was recommended for kids on the diet! :) She e-mailed me a program that she uses for kids with disabilities and we are going to take it slow and steady. Speaking of therapy, we are losing our speech therapist and Cole's teacher is not far behind. Of all of the times to get pregnant and quit ladies! Occupational therapy will not start until August and hopefully they will have a replacement for speech by then. Cole is still behind in most categories, but his progress is remarkable. Even just these few weeks on the diet have brought more words and funny responses. A few days ago, he dug in the drawer and pulled out his swimsuit. He held it out and said, "Go to the beach, Momma?" I didn't know whether to laugh or cry. It's always been a happy place for him. So-hopefully, if we can get him consistent, we can go to the beach soon. You've gotta have goals, right?

Wednesday, June 16, 2010

3 weeks

We passed the three week mark! Compared to 11 days, it was like Christmas.

However, we will start our countdown again today. Cole had a 13 minute partial-complex this afternoon. Who knows what the trigger was? Standing in the doorway without his sunglasses? Going out too soon after his nap? Poor nutrition finally catching up to him? Going to bed late last night? Overstimulation with Daddy finally being home?

Your mind runs through everything a million times. Yet, the answer you still get is -"I don't know".

I asked my pink magic 8 ball a question the other night for my friend C. The answer: "How should I know" . The next shake="sure". SO-"Sure, How should I know?" has become the hilarious motto for the week. Absolutely contradicting, but correct when we try to figure out what the heck is going on with our boys' health.

How should I know if we can go another 3 weeks? I don't...but I sure hope we can.

P.S. Next week equals one year seizure free for me. Now that's something to celebrate!

Sunday, June 13, 2010

Survival

We are surviving, even if feels like just barely :)

I feel that Cole is having a good response to this diet, even though he is not compliant. How can I argue the cold, hard facts? He was having on average 22 drop seizures a day before we went into the hospital. The most he has had this week on any given day is 4. Still no partials, tomorrow will be a solid 3 weeks without a major seizure. SO-the torture is worth it. Right?

I can see why so many people stop the diet. It is hard, frustrating and a whole bunch of other things. Cole is still refusing to eat all of his meals. Which to some people seems crazy, given that it is such a tiny amount in the first place! I will even ask what he wants and try to build a meal around it with my very limited menus, and he still won't eat. So we are switching his eating schedule to only 3 meals a day, no snacks. I have to scrap all of my prepared food. I never thought I would be so emotionally attached to tiny meals, but it's the time that it took to make them that gets me frustrated I guess.

Medication continues to be a struggle. For a couple of days, I thought that I had found the secret. Mixing it with a little diet soda, calling it "pop" and offering it to him in a glass. It worked! But only for a few days. He is back to having to wrestle, put him in a headlock and syringe as much as possible while he is spitting and biting. I have even offered him the syringe, put it on a spoon and a million other things. I am trying a structured behavioral feeding program that his speech therapist gave me. It is labor intensive and does not always have results. He is just too smart. On that note, his speech therapist brought his testing results back to compare the 6 months he has been in therapy to where he was when he started. Cole is still delayed by almost a year in fine and gross motor skills, critical thinking and most other areas. A silver lining to everything was that he is actually advanced in language development! He tested in the 5th percentile in December. He basically could not even talk. Now he is at 33 months, when he was 28 months old during the test. This is incredible news! The test can not be completely accurate sometimes and he still has a long way to go, but it makes us know for sure that he is making progress.

I am not sleeping again-not cool, but somehow I get the things that I need to done. Our good friends are in the hospital with their son and we are adding that worry to our already full plate. Bertrand is our buddy and we don't know what we would do without him or his parents. They are constantly on my mind. It does make me grateful though for my personal beliefs and perspective on this life and the next. If there comes a day that I lose my child, I know that I will be able to find peace. As for Cole, he doesn't seem to be going anywhere anytime soon. I took him to the aquarium for an over stimulation test. He passed with flying colors! The place was packed and he only dropped once. It made me hopeful that we can start doing toddler appropriate activities again. With the diet and his glasses, I think we may even try the park this week. That is something that we have not done for over a year. Who knows? Maybe I can even risk taking him to the store with me for a little bit. I took him to church for an hour today because his dad is out of town, yet again. He did great. Played with the kids in nursery and did not fall once. I can't even remember the last time I took him to church to be honest.

So-in conclusion, things are looking up. It is still really hard. Cole is not getting proper nutrition by a long shot without taking his meds and eating entire meals. It's still a day by day thing right now and the dietitian has even told us that we will have to discontinue the diet if we can't find a way to get Cole to comply. Until we get compliance, or even cooperation-we will survive. I birthed a fighter, so we are good at that.

Monday, June 7, 2010

Rodeo

It is a full fledged rodeo around here. Cole is the wild animal, and we are trying to ride/catch him. At this point, I am SO losing. Cole has won every round and I won't even get a consolation prize, unless I get back on my horse. Having come from the land of rodeos myself, this analogy just makes me laugh. Cowboy up!-might just become our new motto around here :)

One analogy that is more descriptive is something my good friend Ashley said today comparing a game and its sneaky moles to health problems, "It's like playing Whack A Mole, no sooner is one mole down than another pops up...and if you're really unlucky, several pop up at once". So true! I don't think that I am getting tickets anytime soon at this game. I've always had a hand-eye coordination thing anyway :)

I have prepared for this diet for six months. It is working-and that is amazing! However, unless I can get him to eat and take his medicine, it won't work anymore. Cole has gone from having around 20 drop seizures a day before we went into the hospital, to having less than 5 a day. He is averaging one or two right now. I may be assuming something here, but I think that we can put the helmet into a drawer! He has also beat his previous record of 11 days without a partial. If he can make it through today, it will be a solid two weeks! However, it seems that every minute is a struggle. This is so life consuming, the things that I just barely got done before (like cleaning the house) have been put off for at least a month until we can get a routine. Cole is refusing to eat the majority of his meals. If he does not eat it all, the ratio is off and it doesn't work. He is refusing all medication. It seems like I have tried a million different things to present medication to him, but I think it is a behavioral problem (plus they just taste nasty now, even with flavoring). My mini-hulk is so strong that I can have him strapped into his booster seat, holding his hands, using a syringe in his cheek and he can somehow find a way to hang his head upside down and spit out the medicine.

With the food on this diet, there are hardly any vitamins and minerals. So we have gone from taking just one medicine twice a day, to eight. He has never been a real fan of meds anyway, so this is hard. At this time, we have just stopped trying the supplements and only want to get the Keppra (seizure med) in. However, if this continues and he only eats a little and doesn't take his supplements, we will be heading back to Primary because he WILL get sick. I'm trying to avoid that if I can. Our friends little boy just had to get a feeding tube because he has refused to eat. Cole's ketones are dropping, so we are keeping an eye on them. We got a glucometer to check his blood sugar after it being 24 in the hospital, but he hasn't shown signs of low blood sugar yet. I think it is because he continues to take fluids.

I did not prepare myself for all of the guilt I feel when I eat. Such a hard thing, because I love food. I knew it would be difficult to have things that he can't, but it just breaks my heart. I grabbed a box of Mini-Wheats the other day because I had not eaten all day and needed something quick. Cole saw me and immediately started begging, "cereal, cereal!" I had to hurry and pour the bowl and eat it in my bedroom. I ate my dinner in the basement the other night because my good friend brought me delicious stuff like homemade bread and stuffed baked potatoes. It's hard to tell a two year old that he can't have something you are having. Especially hard when he is not eating anything in the first place, so you just want to give him anything he has interest in.

We also did not realize how long shopping takes. Instead of going to two or three stores, we are now going to seven or eight. You can only get Carbmaster yogurt and Fruit 2 O at Smiths. Target is the only place that carries Walden Farms no carb no sugar chocolate syrup. Vitamins, cheese, everything has to be the right brand. The hardest thing has been hand soap! Glycerin is broke down like sugar and turns into carbs. EVERY soap is made with glycerin! I was wandering the aisles with my lists of things that are okay on the diet, which brands I needed for Cole's specific meals, what are other forms of sugar and carbs, etc. I am sure I looked comical with all of my papers.

I now have all of these alarms in my phone to eat, check weight, go to the bathroom-it feels like every 30 minutes we are supposed to be doing something else. It really seems like we are complaining, but this blog is like our journal and we want to remember how everything was. Hopefully we can look back and laugh. It will get easier. We would do anything for Cole and all of this struggle is worth it if it will make his life better. Even if it means eating in the basement. I just have to cowboy up and hold on for dear life.

Friday, June 4, 2010

Grateful

From this
To thisto thisall in one day!

It's been quite the eventful afternoon. Cole just wanted to see Lani and Lily and has been asking to go back to the garage since we hit the door. That, along with two tender mercies that showed up in our mailbox when we got home, make us grateful. There are people here and on the other side that just want what is best for Cole. He has only had a single drop seizure all day. We can even tell a difference in his energy level and speech. For only being on the diet for a few days, this is incredible.

We're all a little tired, but so glad to be home! Thank you so much to everyone that has kept us in their thoughts, we felt it.

Day...what day is it?

We did not go to the U2 concert last night due to this unfortunate event. Lucky for us; horrible for Bono.

We did however, spend our last night in the NTU (knock on wood). I went home last night and fed the dogs, got some sleep and showered (even though it's overrated). This morning, Cole is grouchy. Hospital time plus no food will do that even to a kid who hardly eats. Hopefully as soon as his spinal is over, he can eat and we can go HOME! I will warn the doctors downstairs that we have "Mini-Hulk" on our hands and they will have to use the max dose to calm the beast. Only a half hour left until they come and get us.

I think we will collectively feel better as a group once the IV is out and we are headed to the parking garage.

Thursday, June 3, 2010

Day 3-Morning

Things are looking up.

Cole is running around the halls, talking to all of the staff and causing trouble as usual. He continues to watch Woody more times than I can count. Whatever he wants, right? Everything else is out of his comfort zone, so I guess I can handle "He's the rootinist, tootinist cowboy in the wild, wild west!" running through my head constantly ;) I think that it makes it a little harder to deal with because he is in full hospital mode, which translates into, "I hate Mommy". Deep down inside, I know that he still loves me, but it is tough, when he pushes me away. I am so glad that Brian is here to comfort him.

He has found a toy vacuum in the toy closet and has set out to clean the halls of the NTU.Everyone loves the new janitor.

We are having issues with the pharmacy and trying to get a no carb, no sugar suspension of Keppra. Most medication for keto kids has to be made special because sugar is added to most children's medication. Cole immediately spits out the crushed tablets mixed with water. He won't swallow pills. The only way I can foresee him taking the med is if it is suspended in an elixir. The pharmacy here is not sure if they can compound Keppra, but then they come back and say that they can. The nurse practitioner said to be careful if they try to bring me and elixir here at the hospital. We should just continue with IV Keppra as long as his IV is in. The doctor is not very keen on this as IV Keppra is expensive. I don't care people that it costs more-I care that he gets it in his system! We have called a compound pharmacy in town and asked them to do the suspension carb-free, sugar-free. We can no longer buy Children's Tylenol, Motrin, etc. because of the sugar, so I think we are going to become friends with our pharmacist. We should take him a welcome to the family gift (I wonder if he likes Scentsy?)! If Cole gets sick, his anti-biotics have to be compounded. Unfortunately, our insurance does not pay for compounding as we found out with the nasal Versed. What are we going to do? Not get the drug that could save our child's life? Just like before, it will just have to be another thing to add to the list.

At this time, he is still making 3+ ketones (really good). His blood sugar is hovering in the normal range for a kid on the ketogenic diet. His bi-carb is low, making him acidodic and the nurse practitioner told me that she would be really worried if it was someone else's labs-however, she motioned to Cole running around the halls talking and laughing, saying that he looked great. I told her that he has been really sick before and we did not know it because he was acting happy, smiling, etc. I told her that we should make sure it is back to normal before I felt comfortable leaving. I'm not sure what they are going to do about this particular issue, I am just going to have to let them deal with it.The doctors feel that Cole's initiation period is over and he is officially "ON" the diet. We will continue to stay here today and take more time to get used to eating at a set time with set food, keeping an eye on his glucose and ketones. They have re-scheduled the lumbar puncture for tomorrow morning at 10, so Cole will be without food again tonight, but can have liquid until 7 am. After the spinal, we should be able to go home. This will be great to have a few days at home before things start to get crazy (wait-they already ARE crazy!).

End of day 2

A pretty good ending to a day that didn't start off so well...Cole was a different kid after a 4 hour nap, no more wires on his head, a warm bath, new clothes, his keto friendly dinner and getting out of the room!

video

Wednesday, June 2, 2010

How Do You Turn It On?

video
Apparently Cole is related to his Aunt Cris when it comes to anethesia. They get really funny. The first thing Cole asked when he came back to the room was, "How do you turn it on?" holding up his IV. He has since said other funny stuff like,
"Dad...guess what?"
Brian: "What?"
Cole: "I don't know"

Day 2

It's not even noon, but there is a lot to report. Cole slept really well compared to his average when he is in the hospital. I was in the bed with him and he would just roll over and put his hand on me throughout the night to make sure that I was still there. The only thing that really messed him up was all of the glucose checks. His blood sugar went down to 24 around 6 am. So we had to give him apple juice and see if it went back up. He also did not have a wet diaper for 14 1/2 hours. They did a bladder scan and saw that it was full, so they gave him one more hour before they were going to put a catheter in. 15 minutes before the crew got here, with some help from the other side, he finally went-one trauma averted. When they re-checked his blood sugar it was okay, so they took forever to get the IV in and proceeded with the plan for the spinal tap. Here is where it gets fun.

This is a teaching hospital, so the attending was there with a Med student and a fellow. The nurse practicioner that was doing the anethesia and his regular nurse were also there. I told them that he was strong and it took a lot to knock him out. They just kind of nodded and smiled.

They started out slow with small doses of meds and tried to get him to hold still;) Cole maxed out his dose of Versed and Ketamine. He almost maxed out on Fentanyl. He was still moving and crying and had 2 grown men and 3 women trying to hold him down. I told them he was strong ;) One lady had her feet braced against the wall and her whole body on top of him. After 5 tries with three different doctors, they just threw up their hands and said, "We have never seen a kid like this. He's broken all of the records". One even said that he should get a t-shirt for maxing out on all sedation meds and still be kicking. Not necessarily a record that we can be proud of, but hey-maybe we can get our picture on the wall!During all of this, his IV blew, turning his hand purple and his arm was swollen from fingertips to elbow. We heard "I'm sorry" a lot during all of this. That was nice. SO-we came back into the room and got another IV. Rechecking his blood sugar he was back down to 37. More juice! By this time, he is pleasantly goofy and continues to be entertaining. Someone said that all of those drugs would put someone into a coma-Cole should be sleeping; he's eating eggs and Skyping with grandma :) That's my warrior!

Tuesday, June 1, 2010

Day One

Well, we are finally here.

Cole is not eating really great, which is kind of the reason for his torture. He just is not a fan of cream in small amounts, without his chocolate syrup. He also doesn't like to eat butter plain-go figure. This whole "eat everything in 20 minutes" thing is killing him too. However, I passed all of my scale, calculator and other tests with flying colors-I think it has something to do with studying for 6 months :)We showed a video of one of Cole's partial seizures and the attending actually thinks that they might not be seizures, but something called Alternating Hemiplegia of Childhood. They are going to do a spinal tap in the morning that can give them a better idea. He still has epilepsy, but if these "episodes" are AHC, they will need to be treated differently and will not be affected by the diet. They also drew a TON of blood to do a bunch of tests that they have never ran on him, including the one for Dravet; never fun.Cole is all hooked up for his first overnight EEG since his PICU stay in '08. He has never been really good about getting the leads put on. SO-that makes two separate times that Brian and I have had to hold him down today. Once his head is wrapped, he does fine. He is confined to the bed so that the video can capture him, but we have just been watching Woody over and over again with a little Elmo sprinkled in :)Hopefully he does well tonight and I can push the button each time I think he is seizing. Then it is off to the lumbar puncture in the morning before he can eat!
 
Photos by Capture Me Candid

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