I hate updating when I am tired because I feel like the update is .... well I don't know. Any way the past few days have been hectic with ups and downs of Abe's seizures and oxygen. However some weird stuff happened. We had a new med, one that we had tried for Abe before but it didn't seem to work well so we stopped. We decided to try it again. It's only used as an emergency med when we need to stop a seizure.
Well let me go back. Monday morning when I took Abe to the peditrician it was because Sunday we had to increase his oxygen to 1 liter. We had noticed throughout the day several times that he was requiring more oxygen than usual. This would happen when he was awake. It was as if he was struggling to get air and then when he was sleeping he was settled, not fighting and breathing better or getting more air in. After watching this on and off for awhile we determined it was a seizure that he was having, getting anxious and requiring more oxygen.
Dr. Patonay sent us to Egleston ER for chest x-ray and for them to see what they thought. The x-ray showed something in the right upper lung. Collapsed lung or pneumonia. So we went home with antibiotic, chest PT and breathing treatments as needed.
When the ER doctor came in the first time she said oh he is having a seizure I will come back when it's over and access him. She wanted to know how long his seizures lasted. I told her any where from 1 minute to 20 minutes before I would give some type of med to stop it. She said well you are only comprimising his breathing more by giving the emergency meds. She went on to say that we know these seizures are very hard to control. Yes mam'. We know they may be causing some brain damage. Yes mam'. She said if we thought he would grow out of them by the age of 2 I could see trying to stop them. She said she wanted me to discuss with Dr. Holt a plan to try to better control them but she did not think I should be giving so much emergency med to him. OK some of this may have seemed harsh and I could have taken it that way but I didn't. For the past months I have been praying that I would get to a point where Abe's seizures would not control my every thought. I HATE the things. I HATE to see him suffer through them. I would love nothing more to get them stopped. However it took me years to get to a point where I said ok I know Michala is going to have seizures everyday. I am right now accepting that they will be a part of our lives, but they will not control us. That took years of battling within me, horrible highs and lows, and a very dear Aicardi mom being honest with me and saying you have to come to a point where you say I am ok with this many seizures per day. Work to get to that point but realize complete control is not possible. That day was a turning point in my life. Talk about peace. Well that's where I want to get with Abe. Every single day is spent with trying to control his seizures. I want to find the place where he has some time where he is happy and alert and not drugged and not seizing. It's there some where. We will find it.
Some children's seizures stop when they are sick. Michala's will do this. Abe's was increasing so I wasn't thinking he was sick. When Mike got home with Abe's antibiotic I gave him some right then. Right before that I had given him Klonipin wafer, the new emergency med. Since then he has had times where he is better. I don't know if it is because the Klonipin broke a cycle or that his body is reacting to the antibiotics. The last time he had a cycle like this was after his last surgery. He was on antibiotics in the hospital and came home on them. His seizures picked back up when he stopped the antibiotic. Could all be a coincidence but I think it's worth looking into.
We are still working on his oxygen level but a lot of that does seem to have to do with the seizures. He has smiled but Mike thinks it's a seizure and I am leaning towards that way even though I don't want to. I do like those seizures better than the screaming ones though.
His gtube site has started bleeding and is irritated. We are waiting to hear back from the surgeon as to what to do about that.
He gained back the two lbs he lost on the Keto diet plus some. He weighs 17.5 lbs now. WOOHOO!!!
Thanks so much for all your prayers!!!