Alex Hospital

Alex is currently in University Hospital (Room 1252) recovering from uncontrolled seizures. Here the EMTs transfer him in from Methodist ER. We have been there since Monday and expect to stay through Friday.

Backing up a little let me say, Alex typically becomes refractory to his medication about every 18 months. This was the case near the end of May.

So we started him on a new medicine called Felbatol. He seemed to be doing okay but the seizures began to increase from one every 7-10 days to about 2 per week. But of more concern was that Felbatol reduced his appetite and he had lost 14 pounds (He is now down to 114 lbs.) by the end of August.

So we took him off of Felbatol and started him on Lyrica. He also did not do well on that. Seizures increased to about 4-5 per week and rather than only being at night, he started having them during the day.

So while we were in the course of getting this med adjusted it became harder and harder to stop his seizures. We have a drug called Diastat we could give him at home and it would stop them. But it is a strong drug and ‘knocks him out’ for the next 24-30 hours. Well over the past two weeks Alex appears to have also built up a tolerance to Diastat.

So last week, after multiple seizures Saturday and Sunday, it became apparent Diastat was not going to work. So Monday afternoon we took him to the ER. Normally they administer Ativan and seizures stop. Not this time. Alex continued to have 70 seizures over the next 14 hours. The ER never was able to get them to stop. So we checked him into University Hospital (Room 1252) and they gave him super doses of anti seizure (AED) medications. We had gone near the point of having to possibility putting alex into a ‘chemically induced coma’. But fortunately, just after midnight Monday, Alex stopped seizing.

Now, we have been trying to wake him up for the past 2 days. No luck so far. The doctors have taken him off 3 of the five AED he was on but will not know his reaction to the change until we get him to wake up.

His veins got so beat up we had to have them put in a 'pic line' (tapping a vein below the surface of the skin). They have to draw a lot of blood as well as administer the AEDs throught this 'pot'.

Alex had to get 'mittens' put on since he kept trying to pull out his 'pic line' and remove alos kept removing his 'hat'.

And now they have decided his larnnyx is drying out. Them have had to put on a mask to add moister to this O2

So we are waiting and praying that he will adjust okay and we can come home soon. But it looks like we will be here through the weekend.

Thank you for your support and prayers.

Neal and Marycke