Keto-diet no go

Jordan did not adjust well to the Keto diet. His body could not handle the formula. He had very bad diarrhea and stomach aches which began the first night of the diet & worsened as the ratio increased. When he was put back on his regular formula he was fine again. It was a very rough 4 days for him. He got a very bad rash from the pampers they gave him & they were too tight the night he had the diarrhea. It was very dry there & he needed to be on humidity most of the time which gave him excessive secretions, which he coughed up well on his own, but left his neck & trach ties wet resulting in irritation on his neck. His G/J button got tugged on in the night and almost came out & was sore & bleeding a bit in the morning and, there were repeated needle sticks to try and get blood draws which never did all get accomplished. He didn't even want to play with the cool toys they brought him. I felt so bad for him. I tried explaining things but it was just such a bad experience. It was just suppose to be a simple diet change & he suffered most of his time there. He got sad at times & of course had an increase in seizures from the stress.

The new plan is to decrease his phenobarbital, since it is so sedating, and increase his Topomax at the same time. It will take about 4 weeks to make this change at which time his seizures will be reassessed and if need be, we will start another med (Keppra I think)

Jordan is very happy he is home, in his own bed, with his own nurses who know him & what he wants & needs & who love him. I am taking the day off today to clean my home & regroup my brain. I am a bit discombobulated. I am upset the diet didn't work but more so about what he had to go through the last few days & not sure how much he understands of all of it. I very rarely see him cry & he did quite a bit this week. He is happy & content now & I just need to move forward & focus on the next step. Keep saying prayers for Jordan. I know God hears the prayers & loves Jordan.

Jordan update from appointment

This will be brief as I got home late & am tired. Jordan starts the Keto diet Oct. 22, Monday. He has to be admitted for 3 days for monitoring. Not much else to update but it was a long day.

Update on Justice's page

I posted a Justice update over on his page. I will post here about our appointment today, when I get back later.

They're back

Yesterday after Jordan woke for the day he started back up with the seizures. I was so bummed. I thought we hit a milestone or something. I don't understand why they would get better for a whole week & then start up again. I had to give Klonopin yesterday at 1:00 p.m. 2:00 a.m. this morning and at noon today. Frustrating. The happy alert playful Jordan has been replaced by the spacey, withdrawn, hooo humm Jordan again. I hope my persistence with the doctors works tomorrow. I want him started on the keto diet asap.

Justice has been sick, wouldn't ya know it. He had a fever this weekend and an earache. His first earache. He says he still has it a bit today so I am not sure if I am going to need to take him in. Good thing he didn't have school today. It gave him an extra day to get well. Mike was sick too but he is better now. He didn't mind me telling him he was not allowed to suction.
Wish Jordan luck & say lots of prayers for tomorrow.

Happy boy

1 week and no Klonopin. Wow. I am so thrilled & nervous at the same time. He still has seizures daily but they go away on their own after 5-10 minutes. He is becoming more alert & HAPPY! He had the giggles the last couple days & it is such a joy to see him this way again. He is so much fun to play with. I love it. We are still going to go ahead with the Keto diet because if it works we should be able to cut down on some of his daily seizure meds & be not so sedated.

I have not posted in a while because the daily seizures & watching them suck the life out of him was getting to much for me. It was the same thing day in & out. It is heartbreaking & although I am an open book most of the time, I just didn't want to share the sadness anymore. I am glad I can share some joy for now.

Mike & I went away last weekend to Lake Geneva. A much needed mini vacation just the 2 of us.
The Willow Tree Foundation Helped fund the trip. We wouldn't have been able to go otherwise. I actually managed to schedule 24 hour nursing, and justice went to his cousins house & had a great time. Mike & I went horse back riding, had a wonderful dinner & visited wineries. Spent a lot of time putting around deciding what we wanted to do since we didn't HAVE to do anything, it was kind of strange. But we easily adapted. I missed my boys but was not worried for a second, just missed them. That was a different feeling too. Jordan was mad at me when we got back & he gets mad when I go to work now too. He is adjusting and geeze, I only work for about 5 hours a day.

Justice is settling into kindergarten finally. He is his happy self again. Jordan is used to me leaving for a few hours for work and happy when I get home. Mike has a very bad cold & I am going to quarantine him, he just doesn't know it yet.

Things are going rather well here. Uneventful, which is just the way I like it. I am also doing better myself. I needed the weekend also, and I am always better when Jordan is well.
No school today or Monday. I will be wore out by Tues, just in time to go back to work & unwind.