I don't even know where to start honestly. So much is happening. Like I said on facebook ny brain is in overdrive and my heart and soul are crushed.
Wednesday I met with the geneticist. He is concerned that I have increased intracranial pressure. He has called the neurosurgeon and spoken with him and I will be having special testing on Monday to check the intracranial pressure. He wants to do some more testing and also wants to take over Eli's case. He asked me to bring Eli in on Friday, as soon as he was discharged.
So Eli was admitted Wednesday afternoon. He had his loading dose of IV Keppra that evening and his regular doses started Thursday morning. He did pretty good. He was discharged this morning.
We headed straight to genetics. The geneticist is running further testing on Eli as he believes there is still a piece of the puzzle missing. He's also concerned as Eli's RBC has been consistently dropping, his RBC are enlarged, his hemoglobin was lower, his Iron is low, and his protein is low. He's also worried about his hormone levels. He wants to run a decent chunk of labs, but right now we can't take that much blood at once. So we are going to have to slowly draw all of them. At one point reading thru the recent labs, he said "heck we can't take blood, it looks like we might need to give blood."
Like everyone else he's concerned about Eli's intestines and how well they don't appear to be holding up. We are having to slowly but surely switch things over and all these issues coming up today are pushing us in a direction that we aren't ready to go.
After we talked Eli for awhile he turned back to me. He says that I have Mito and that he strongly suspects that I have an adrenal insufficiency as well. He is speaking further with my surgeon and they will be following mito precautions as well as treating me for an adrenal insufficiency during my surgery next week. They will also be doing the testing for the adrenal issues next week, to verify completely and get a full plan in place.
Ultimately he advises that we do some testing on the kids. Jace has CVS and Ben has autism. Both of these can fall under Mito.
His current immediate concerns are getting thru my surgery next week and my recovery as well as Eli and the immediate issues I listed above.
I'm overwhelmed and exhuasted. I've spent almost 5 hrs this week alone talking to the geneticist. This isn't counting Eli's 3 days inpatient.
My brain is trying to process it all but my inner being is in such a tailspin that it's all so jumbled.
My household focus today will shift into family time. My goal is to spend the next few days at home with the kids as a family. My brain surgery is days away and I'm NOT ready. I don't know how my family is feeling as we haven't had much time to talk, but I know they are scared, and frustrated and angry and so many other emotions.
Please keep me in your thoughts as I go into my surgery and recovery. Please keep Eli in your thoughts as every day my little warrior battles thru so many issues. Please also keep Bob and my kids in your thoughts as this is all so much for them.
This is so much for us all.
Next week we have been asked what we need. Meals are always appreciated. Babysitting. housecleaning. helping kids with homework. taking the kids out play ball, or to a movie. sitting with bob at the hospital. you name it and it would be helpful. My parents will be here on Sunday. My dad will stay until I'm home, my mom will stay for my recovery. Beyond that we honestly don't know what we need. Until we know how the surgery and first few days of recovery go we don't have alot of info. The first few days I will be in the Neuro ICU so visitors are very limited. Please call or text Bob before coming up.
Bob will update as much as he can. Always feel free to text, call, or email.
thank you and love to all!