We are in the hospital....again. I am pretty sure I have said that a couple of time before.
This morning around 3am she started having her spasms and they lead into a massive seizure/spasms chaotic hour and a half.
After tons and tons of valium and klonopin and calls to the neurologist she still did not stop. After her last big seizure we called 911 because we could not give her any more meds without suppressing her breathing and we live over 30 minutes away from the hospital and it was almost rush hour at this point.
Honestly this was the best ER visit we have ever had. We were in the ER around 6am and we were in our room by 9am. Of course Emily did not have anymore seizures or spasms until we were admitted to the unit.
She had 3 more of her big seizures and a few more clusters of spasms. More meds and still no sleeping baby. I do not for the life of me know how she was awake.
Since midnight she had 6 doses of klonopin, 2 of valium and 1 IV ativan and this is what she looks like
It's almost 8pm and she fell asleep about an hour ago..finally.So listen to how great everything is working for us!
We were hoping to start the keto diet and get a g-tube placed in the next week or so. It takes a little time to get everyone coordinated for all of this.
To get a g-tube it requires a couple of tests, both require sedation. To get the keto diet started requires a dietitian free for almost a day to do education and get her started on the formula.
Drum roll please...............................................................................
WE STARTED THE DIET TODAY!!!!!!
We are scheduled for all of the testing first thing is the morning!!!!
Everyone keeps saying " I can't believe how everything is falling into place!" Well I can believe it(wink to GOD) ;)
If all of her tests are OK then she will get her g-tube on Wednesday.
Just please keep Emily in your prayers. Lots of test tomorrow, lots of sedation and then possible surgery on Wednesday. Pray this diet helps her.
I want her healed so badly.
p.s. Dear seizures......I HATE YOU!!!!!
thanks!
God is going to heal our baby Emily. We just have to wait on Him to do what is best for her. I am hoping upon hope that this will do the trick.
ReplyDeleteI love you all and have my arms around baby Emily all the time.
If you need anything at all, please let me know.
MaMaw Mary
I'd punch seizures in the face if I could....
ReplyDeleteSo glad things are rolling for you all & for Emily...
I'm going to stop in after work today to see you all & kiss that baby before her surgery Wednesday...see you this afternoon! :)
I just wanted to let you know that your little family are always in my thoghts and prayers.I believe that God will touch Emily and I know that you and Joe have faith and that is what it takes to please God.
ReplyDeleteMuch Love and Prayers,Kim
I agree with Bec... a good punch would be nice, wouldn't it!!!
ReplyDeleteExcited to see how the diet works... praying that it will do the trick... and praying for an easy surgery....
See you in the afternoon!!!!