Brain Surgery, stage 1

I finally have a few moments to sit down and type for a minute.   Wednesday we came in early and surgery went very well.  The doctor could actually feel the tuber that is causing the issues when he opened him up.  That bodes well for actually removing it.  We saw a picture of his brain with the EEG leads laying over it. 

The placement was uneventful and they expect no complications, which is great.  What's not great is the amount of vomit and pain from my poor baby.  He was in the PICU for over 24 hours because his blood levels were not good at all.  Blood sugar was through the rough, C02 was practically nothing. CBC has been low as well as his blood gas is wonky.  It took quite a while to get everything stable.

Wednesday night I sent Jonathan home to sleep and I slept in the crib with Jack.  He would let me out of arms reach.  He kept puking.... on me, but was begging for water and ice.  It was a really rough night.  It was so hard to see him in so much pain.

Then yesterday he slept quite a bit.  I came home to rest for a few hours and Jonathan was there with my parents.  I don't think he was awake longer than 30 minutes at any time.  Usually when he was awake, he was crying and needing pain meds.  He's not a fan of everyone messing with him and all of his cords keep getting tangled.

The doctor said that he had a sub-clinical seizure around 6:00 that morning.  Sub-clinical means that his body didn't move but his brain did seize.  He needs to have more seizures though.

They finally moved us out of the PICU at about 5:00 yesterday and got us into a regular room.  We have a friend who is a nurse in the unit we are in who has been a God send.  She only worked on Wednesday but has been calling and checking on us as well as calling the unit and setting us up with the best nurses.  It's been great.

Last night we got all snuggled into the crib again (I had sent Jonathan off to get some sleep) and at about 11:00 PM he decided he was going to wake up and chatter for a bit.  He seemed much more like himself!  We watched Elmo and a movie and more Elmo on the ipad.  He also ate some ice and drake some Juice.  This went on until about 3:30 when he finally dozed back off only to be messed with at 4:00 for vitals and meds.  Then he woke at 6:00 and was determined to get out of the bed!  I held him for a bit and then not too long after Jonathan got there we managed to get a play mat on the floor and he sat there and played with some of his new toys that people have brought him.

The doctor decided to take him off the ketogenic diet while in the hospital.  We were a bit stunned by that!  Of course he isn't eating anyways right now but it makes the meds and IV fluids he can have easier to figure out and whenever he does start eating we don't have to weigh everything out.  He will go back on the diet as soon as he has some seizures.

Everyone has been really great to us, keeping us well supplied with food.  We really appreciate the gifts, drinks, food, and visitors.

If we can get some seizures soon then they will move his surgery to Monday, which would be awesome.