Thursday, May 08, 2008

Hospital Stay #6

Monday we took Dillon in for his 6th hospital stay in less than 2 years of life. He was put on the Ketogenic diet. This diet is 3 fat for every 1 carb (a normal diet is 10 carb for every 1 fat). It is basically starving his body since he is getting so little carbs and forcing his brain to use the fat instead of carbs for energy. He will go into Ketosis (which is what would happen if you were starving). His brain will make ketones, and while they don't know how or why the presence of the ketones often reduces or stops seizures. A normal person's blood sugar is 90-120 Dillon's will be 50-70. We have to do sugar testing 2 times a day and ketone testing once a day. The sugar test is by the blood test, like diabetics do, and the ketone test is by urine. On this diet, Dillon cannot have any extra carbs; not even in the form of shampoo, mouthwash, insect repellent, or sunscreen. Once he is on the diet we can try these things and see if they cause break through seizures or not. I will be ordering Dillon a allergy bracelet to warn medical professionals of the diet as something as common as antibiotics, if not adjusted for the diet, could kill him. The doctors don't expect the diet to stop the seizures, just to reduce them. However, I am praying the diet will stop ALL seizures!

So on Monday, Anne came to my house along with the nurse and we headed down to St Chris. I forgot Dillon's testing supplies so Anne took Jay back home and got them. It was such a blessing having her there! After getting extensive blood testing, Dillon was admitted tot he Special Care Unit (SCU). Sunday night Josiah had been very sick and apparently Dillon caught it too as he projectile vomited all night long. By Monday afternoon they both seemed better. Jay then started to not eat too much on Monday. They started Dillon on 75% of the diet Monday at 3pm. Tuesday at 3pm they started the full strength diet. However, the doctors got scared when he had a seizure and gave him TWO major drugs that knocked him out Tuesday morning. The neurologist and I weren't too happy. He reassured me he talked with the doctors and told them that the seizure wasn't hurting him and to not give the drugs unless it lasted 15 minutes. He said they tend to forget that those drugs take 10 minutes to work so by the time they work he was done the seizure anyways! So all of Tuesday Dillon didn't move a muscle. This was very frustrating because the whole reason we were there was so I could make sure he was too tired on this new diet as some people get very lethargic. Plus he was not having enough out-put as compared to his in-put. They wanted to start an IV but I told them no as they need to make sure he is getting enough water in his daily schedule to have enough out-put. We do not measure it here at home so if it isn't enough there it won't be enough here. Wednesday morning I woke up in terrible pain and throwing up. Yup, I caught it! It was horrible. I was so thankful J and J (and C!) came up to spend the day with us as they took care of Jay for about 6 hours while I was in bed! I only saw Dillon for about 30 minutes, that's how sick I was! Dillon was still pretty out of it from what I could see. By this time Jay was not eating or drinking too much and vomited if he did have anything. It wasn't until Wed that he was any less active than normal, though. Thursday I woke up feeling much better. I wasn't perfect, but so much better than the day before. We were able to bring Dillon home about 1 o'clock. We had asked someone at church to help us bring the van home as I didn't want to drive since I had been so sick and I needed to be in the back with Dillon. Thankfully some men in the church helped us out with this! On the way home Dillon coughed a whole lot and Jay vomited all over the place, it was good I was back with them. I think the car ride was just too much as he hasn't vomited since. Please pray for Jay that he will start feeling better. He is active now that we are home, but I can tell he still isn't feeling good.

Some Pics:

Jay had a great time in the crib with Dillon
This is at the play area in the Ronald McDonald house. The house was great! For only $15 a night we had a wonderful room with a huge bathroom and two queen size Sleep Number beds, free food, a room with some gym equipment, a video game room, a pool table, a play place for the kids, free parking, etc.
Can you see his little head near the cash register?
This is the huge kitchen. It is fully stocked with TONS of food! People donate all the things to the house. There are even things for baking should you get the desire to bake while there. They try to have people come most nights to cook dinner for the families too. It is such a blessing! For those of you who knew us while we were there for five weeks, the meals are a big part of it. You can't afford to eat right and have no place to do cooking (at least that was until the PRMH was built about a year ago!)
The dining area had nice hardwood floors. The whole house was beautiful!
This is Dillon in his "room" (it is one big area with curtains to make the rooms)
Jay with Auntie Anne
Jay finally slept for about an hour on Monday!
This is Dillon getting a kidney ultrasound. This diet can be hard on the kidneys and cause kidney stones so they check to make sure there is no problems with the kidneys before starting the diet.
Dillon and Mommy having "fun" in the hospital!


Anonymous said...

Glad you are all back home. Praying that you will all feel 100% better. Love, Mom K.

Alesha said...

Isaac was on the Keto diet from last May until this March. I'm sorry to say that it didn't work for him, but I will be praying that it works for Dillon.

I have a few ideas that worked for us while we were on the diet, so I thought I'd share.

We bought a box of small canning jars. They were just the right size for each of his 6 feedings of formula. They made things so much easier for travel and for measuring.

Dillon's lips will get very dry and peel alot while on the diet. We tried every lip remedy known to man and do you know what finally worked? Good ol' Vaseline petroleum jelly!!! Kept his lips lubricated, so they didn't split and bleed.

Also, the fewer objects you use to measure and pour while making the formula, the less chance you have of losing drops of it here and there. We had to measure down to the tenth of a gram, and you'd be surprised how much you can lose while pouring from one container to the other.

Oh, and if you mix the oil with the polycose powder before adding the formula, it seems to mix better. Although, you may be using something different. We were using polycose powder, canola oil, water and RCF formula.

If you have any questions, I'd be glad to try to help you out. It is alot of work, but after a while it just becomes routine. I tease and say that I felt like a mad scientist working in my laboratory when I was mixing his formula! :-)

God bless you all during this transition. I PRAY it works for Dillon.