As I sat down to start typing this email for some reason a very old email from when we were in Iowa popped up. I stopped to read it. We had been in Iowa for 6 weeks. As I was reading it I was reminded how blessed we were/are. While in Iowa during Abe's clubfoot treatment he was fussy from the cast but one thing was he never had any seizures. I realized just how blessed we were not to have that on top of everything else that was going on. He could have easily started his infantile spasms before then. I am thankful!
Well when we started the keto diet back Abe's sugar dropped considerably and his seizures were off the charts. We were giving Ativan and Diastat pretty much around the clock. Monday around midnight I ended up calling the hospital because I was getting scared and wasn't sure what to do. Thankfully the doctor on call took the time to calculate Abe's weight before telling me what steps I could take. This morning Abe had still not had a wet diaper since the night before.
Oh let me go back. Since his sugar was dropping so low it was decided that we would put him on continuous feeds. That was started Monday around 6 pm. He was continuing to have lots of really hard seizures lasting way too long. The ativan wasn't touching it because they were from the low blood sugar we assume. Usually within 5 minutes his seizure stops and he is out from the diastat. Not this time.
We are still not sure what happened with no wet diapers. By the time I talked to Mo this morning I was really worried. She listened to what I had to say and said I will call you back. It wasn't long before she called and said stop the diet and give him a bolus of breastmilk. Within minutes of the bolus he was calming down because his sugar was back up to where it should be or where his body is used to it being. He was still having seizures and still had not wet his diaper. I was supposed to give him another bolus within 1.5 - 2 hours. Still no wet diaper after that. Another bolus 3 hours laters. When I checked his diaper then it was wet. WHEW!!! Talk about relief. We knew that he could have been dehydrated, but we also knew that the diet could quickly make his possible mito disease progress and shut down his kidneys quick. My mind wondered and worried way too much. I was never more happy about changing a wet diaper.
He is still having lots of seizures but thankfully they are not from low blood sugar and ativan and diastat seems to be doing the trick. We don't know our next step. We know that his body gets in dangerous crisis with the diet right now so that's out for now.
I was just saying that it took me years to accept that Michala was going to have seizures everyday. I spent every waking moment trying to figure out what to do to make them stop. Finally a wise mom told me I had to figure out what was an acceptable amount for her. I had to face that we were not going to get complete seizure control. Boy did that make a difference in my life when I accepted that. A peace that I had been longing for. That's not to say I don't cry and hurt each time she has one but I do not waste my day and miss out on the blessings because I am drowning in it. So I am not there with Abe yet. I want better control. I would love complete control and that is still my prayer. I have learned over time that if my prayer is not answered right now then there is a reason. God's timing is always better than mine. We will continue to take this minute by minute and see which direction is best. I really thought this would be his miracle. I was hoping. For whatever reason right now it isn't. We will get him settled back down and regroup and discuss which direction to go in now. What to try next.
Thanks so very much for your prayers during the diet. I wanted to give it an honest effort and his body quickly told us it was in danger and it was time to stop.