I am going to keep this one as short as I can. I am so tired and I vowed to stay off of the computer tomorrow, so I want to get this posted tonight.
Last night was a very long night. It was the second night that Vada was kept from sleep because of her seizures and I was right there with her. Needless to say, I am t-i-r-e-d. So tired that I feel sick! Sleep couldn't come soon enough for me..., i'm just waiting on Vada. She however, feel asleep on the way home from Peoria, so, it may be awhile.
Vada and I left the house this morning at 9:45 A.M and didnt return home until 7 P.M. Our first stop in Peoria was the cardiologists office. She had an ECHO and an EKG done today. Dr. Bramlett said that the structure of Vada's heart has been "changed" because of the stenosis and that it is making it difficult to determine if the holes in her heart are actually larger, or if they just look that way. Either way, the holes look larger than they once were. If that's the case then we do need to do surgery and soon. He said to be for sure we need to do a sedated ECHO on Vada heart and he wants to do that as soon as possible. That way nothing is missed, hopefully. I should be receiving a call with the set appointment tomorrow and its suppose to be scheduled before Christmas.
Vada is not showing any signs of heart failure, so he is pretty confident that she is doing "just fine". He did mention that he wants to meet with the whole "team" of cardiologist after the sedated ECHO is finished and get everyone's opinion.
Over the past couple of months we have been told one thing or another from each and every cardiologist that we have seen. Each cardiologist seems to have a different opinion on how Vada's heart condition should be treated. Hopefully once they are all together they'll be able to agree on whats right for Vada.
After finishing up with the Cardiologist we hopped into the elevators and went up one floor to the neurologists office. We waited in the waiting room fir two hours, which is what happens when your "worked into the schedule", so I am not complaining. Once Vada and I were put into a room and Dr. Jennings came in we had his full attention and I am grateful for that too.
Dr. Jennings and I corresponded throughout all of yesterday through emails. I sent him the newest videos of what I thought was Vada having more seizures and we discussed what our plan was. So when we met today we were already on the same page.
Vada's seizures look different than they once did for several reasons. The main being she has gained a lot of weight from the ACTH and her weight is actually weighing her body down, making the movements seem "different". Also, she is on a anticonvulsant (Keppra) and that may change the way the seizures effect her body reacts to whats going on in her brain. So the seizures may present themselves differently.
As of this moment I am giving Vada full dose injections of ACTH. It should only be a couple of days until we recieve the new medication Vigabatrin (Sabril). It will be delivered directly to our house, just like the ACTH was. Dr. Jennings seems to think that it should be here by Friday. Monday at the latest. So, for now, to control Vada's seizures we'll use the ACTH. Luckily, I have enough on hand. Were using the starting dose because I have already gave her one injection at half of the original starting dose and it didn't seem to do any damage against this round of seizures. The ACTH defiantly give our little cashew a boost! Either it gives her energy and strength or it wipes out those seizures and lets her function... probably both! Either way she was in a good mood. Rolling around and in the army crawl position again. Its nice to see. I hope that this new drug does the job. Well be going back to see Dr. Jennings next Thursday for a check up to see how shes doing on this new prescription.
So..., I think that I have basically covered everything. I am too tired to go back through and check... so, hopefully its all here. :P
I am also too tired to check my spelling, so, sorry.