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.

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!

How Do You Turn It On?

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!

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!