It's been a long few months, and this certainly isn't the kind of post that I wanted to break the silence with. However, it's 10:30 at night, and I need to let it out somewhere.
Last Thursday morning, Tanner woke up and couldn't walk. We found him at the base of his bed crying because "the bed made me fall down". Since Tanner's blood sugars have been running low, I immediately took him to the kitchen and started pumping him with honey, orange juice, and other sugary substances.
We decided to go ahead and take him to the ER. They ran a few tests - and agreed with us that it was probably hypoglycemia and to call our general practicioner or transplant group to get a glucometer and start monitoring him.
Friday morning - same symptons - but this time we have a glucometer, so I take his blood sugar and it was 93 - which is completely normal. Back to the ER. They did some neurological tests - and recommended that he see a neurologist. Although, his conditioning was improving and they didn't think that it was urgent.
Same symptons on Saturday, Sunday, and Monday - but gradually getting better. Today, however, our transplant coordinator Penny called. She really stressed the importance of having him seen sooner rather than later. With much persistence and begging, we scored an appointment for this afternoon.
At the appointment, Tanner had the doctors stumped. They felt like this might just be a simple viral infection - but wanted to do a CT scan "just to make sure". They didn't think they'd see anything on the scan.
By the time we made it home, they had seen a pocket of cerebral fluid in the middle of the brain and they want to do an MRI as soon as possible. We've got one scheduled for tomorrow afternoon.
I'm scared - scared shitless, quite frankly. Google is not your friend in circumstances like these - and my google searches aren't revealing anything nice. They are revealing things like tumors and cancers - I've been through a liver transplant. I don't want to have to go through anything else. I'm hurting...I don't enjoy being the mom with a chronically ill child - we don't hide Tanner's transplant, but we don't want to let it define him. It was "easy" going through the liver transplant with a sick baby - who couldn't voice their opinions, who you didn't have to explain procedures to. I spent an hour tonight explaining an MRI to my child - how will I explain additional tests and procedures that may come along. How do you explain to a child that they are sick?
I'm praying that it doesn't come to all of this - but I'm scared shitless that this isn't headed in a good direction.