After the three partial seizures last week, Benjamin had a pretty uneventful weekend. On Monday, an accident broke his infusion pump so we had to resort to giving him his infusions by manually every four hours. It was a tiring night and first thing on Valentine’s day we called to have a new pump sent to us. I left for work around 8 and mom texted to tell me that Ben had had another partial seizure. By the time I got home he was fine and we went out for a lunch date!
Tuesday evening as we were getting ready for bed, Ben had another partial seizure while standing in our room. It only lasted about 30 seconds and he picked up finishing our conversation as soon as he came out of it. Not even thirty minutes later I was laying in bed and heard him start to have a seizure while coming out of the bathroom. This time he had a full, grand mal seizure. He fell on the tile floor and hit his head on the tub. When he finished seizing, mom came upstairs and helped me get him up off the floor and back to bed. We had difficulty helping him stand up and walk. He tried to talk to us, but was not able to make his words make sense. I could tell he was in pain, but had no way to find out where he was hurting with him not able to communicate, so I just tried to get him settled to sleep. It was a fitful night for both of us, but by morning he was able to speak clearly and explain where he hurt. I had suspected he had a broken nose, but it was no longer bothering him. As is typical of the seizures he has had since last summer, he was left with his right shoulder in a lot of pain and limited use of that arm. His left knee was incredibly swollen so he was not able to walk. The left side of his face has an awesome black eye. My mom went and got him a wrap for his knee and some crutches and he has gotten around a little better each day since, thank goodness!
We called Texas and they said to take him off the infusions for 24 hours; the oncologist at the VA cancelled his Avastin treatment for Thursday and scheduled him for an emergency MRI; and the neurologist scheduled him for a blood draw to check his medication levels.
*Benjamin is gaining more strength in his arm and leg and has not had any seizures since Tuesday night. As of last night he is back on his new infusion pump with no issues.
*The MRI results came back as no major change since the previous scan. They are not attributing the seizures to tumor growth, but possible tumor hemorrhage or irritation in the surrounding area of the brain. They increased his steroid dose to reduce the swelling there, which will also hopefully reduce the amount of future seizures.
*His medication levels are now at a therapeutic level. The doctor is hoping that this will hold the big seizures at bay. As long as the tumors remain, he is not sure if they will be able to stop the partial seizures, but he is going to continue monitoring his levels. Ben is on over a maximum dose of both of his seizure meds after the three consecutive increases in the past two weeks, so the neurologist needs to figure out whether his levels are being lowered by interactions with his other medications!
*Please pray for no more seizures for Benjamin.
*Pray that the tumor hemorrhage and swelling is from tumor breakdown, that is what we are believing!
*Pray for wisdom for us to know what to do next as far as treatment goes.
*Pray that the seizures will not keep the VA from continuing to do his future Avastin treatments.
I am so thankful that my mom was here with us this week and was able to help for us to do a lot of last minute running around to appointments. Ben’s brother Dan dropped everything to run out and lower our 3 foot high bed so that I wouldn’t have to lift Ben into anymore (I might miss that workout); and his mom stopped by to stay with them so that my mom would have help while I worked. We are so thankful to have the help and support of our families! As always, we appreciate the prayers of our friends! Thank you all for your sweet words and your generous donations; I may not have time to respond to each one of you, but I am truly humbled by your love and support!
A journey with our family through multiple sclerosis and muscular dystrophy. As well as a look into our struggles and faith!
Being still for Caitlin Grace
The Joy of the Lord is our Strength
Finding Beauty in the Everyday.
Chasing Christ in the Chaos
Learning to Embrace the Storms of Life