CPR Training

Joe Mike and I both had CPR training a week after Lex was born when he was going to be released from the NICU. As we sat in the room and the instructor described to us each step to take if we noticed that our baby wasn't breathing we quivered at the thought of that happening. But deep down inside we knew it wouldn't happen, you know that feeling? The one where you really think nothing bad is going to happen. The night when we were at home sitting in bed with Lex between us playing with him and we looked down to see him turning blue was indescribably horrifying. I panicked instantly and handed him to Joe Mike who tried to stimulate him while I ran for my phone to call an ambulance. In the meantime I reminded him of the steps that I could recall from our CPR training which had been only a few weeks before. He began doing chest compressions and mouth-to-mouth and soon after, Lex regained consciousness. Joe also performed CPR on Lex on one other occasion. Although the doctors don't agree with me, I don't believe that the CPR was necessary in either instance, looking back with the knowledge of Lex's seizures now. Though his SATS drop to zero and he does turn blue, he always begins breathing on his own. However, there is no way to know that for sure which is why when the doctor recommended we be given a refresher course on CPR we were more than willing to submit to his request. When the instructor came in and began saying things like "if you find your baby not breathing then..." and I recalled that day in the NICU. It is such a weird feeling to look back and think of how we felt then and know what we've been through now. I never expected to "find (my) baby not breathing" but Lex stops breathing multiple times a day typically. We have seen Lex turn blue more times than I could count on Joe Mike's and my fingers and toes combined, so when the instructor said "IF you notice a color change or Lex starts turning blue..." I looked at Joe Mike and we just grinned at each other. That may sound weird to you, but we have been through so much together it was amusing to hear her say IF. We fully expect to see Lex turn blue many, many, many times after we get home. It will be our judgement COMPLETELY of when CPR will need to be administered (and the nurses' after they get to know him). Fortunately we will also have oxygen at home which will be so beneficial. So as I sat there and listened to her continue on about the rare chance that we will find our baby not breathing at home it became crystal clear to me for a moment exactly what we are going through and that although it has become normal to me, it is not normal at all. It just reminds me once more about how tightly God is holding me and the strong sense of peace He gives me every day that I go through this.
As far as what is going on with Lex now, we have a new plan! Here goes:
-When Lex has six seizures within an hour he is typically given IV Ativan. We tried Diastat as an alternative because we will not be able to administer Ativan at home obviously because he won't have an IV. Diastat didn't work so we found that Ativan has a pill form which we will try to use the next time he has six seizures within an hour instead of the IV form. It would be wonderful if this works so that we will have that as an emergency med at home.
-It had been decided as of this morning to discontinue the Ketogenic Diet to see if Lex had a flurry of seizures so that we would know if it was helping. I did not fully support this decision since he has never gotten into full ketosis, but was convinced since the hospital is the best place to be experimenting with these things. However, after the nutrionist (she's amazing) was informed of this she began reviewing all of his labs from the past month-determined to figure out why he STILL hasn't produced ketones. His inability to produce ketones is something she has never encountered before since it typically only takes a couple of days and Lex has now been on the diet for a month or so. They suspected that maybe the steroids that we have been in the process of weaning him off of were the cause, but those ended on Monday and still we haven't seen any. So after reviewing the labs she found that his Carnitine levels were low. Carnitine is a nutrient that helps turn fat into energy, which is very important in producing ketones and for the Ketogenic Diet. So he is now receiving Levocarnitine to help with that. We are PRAYING this is going to solve our ketones problem.
-Lastly we have decided to try a new drug on him called Vigabatrin also known as Sabril. It has some rough side effects but we're kind of down to few options at this point. The neurologist here this week has high hopes for it because has seen many cases where children with seizures like Lex's responded very well to it. It also has similarities to Ativan which he responds EXTREMELY well to, so that is also a huge positive factor. Unfortunately it means that we have to begin weaning another med. So we have a rough week ahead of us next week, but I am excited about the new plan of action and hopeful to see great results. Holding fast and praying hard always :D
"If God is for us who can be against us?" Romans 8:31