I keep meaning to come give an update but my arms have been glued to a sweet, and very swollen, little boy!
Surgery went VERY well! They told us it would be 3-4 hours and after 40 minutes they paged us. I completely flipped out and went running across the hospital because I had gone up stairs to get some Internet access. The neurologist called us back and said that it was done and the surgeon was closing him up. We were floored! the tuber was right on the surface and they removed a few others that were behind it too. A good section of his temporal lobe is gone now.
In recovery he was very upset but thankfully not puking! The first night was actually pretty calm because they had him on a morphine and valium cocktail, but it's been pretty rough since. We've kept the Tylenol with codeine in him on a regular schedule but he is just not himself! He is extremely swollen and in some pain. We can give him morphine every hour if we want but it doesn't seem to really help much. We finally got some Valium put back on his chart and that seems to do the trick better. He has also been very constipated. We managed to get some of that taken care of this evening but his belly is still a little swollen.
He is on high doses of steroids which don't help either. He is just mostly a cranky child. But the awesome news is that he is exactly the same child that went into surgery! He is talking the same and screaming "all done" anytime a nurse walks in the room, he can move both sides, pass objects between his hands, raise his hands up, self feed, kick his legs, and play just like before. And the best part is that we haven't seen a seizure since!
Yesterday he enjoyed riding around in a wagon! Today he enjoyed sitting in mama's lap in a wheel chair and going outside for a walk. He wanted nothing to do with the wagon today and was very upset if mama wasn't holding him. He wants daddy in the room too but mama does the holding. I got peed on 3 times today and anytime I needed to use the bathroom, he flipped out while I was gone. It's pretty exhausting to have a 36 lb toddler glued to you like a leach when you are exhausted from being in the hospital, but I am just so glad that he is doing so well and that the hard part is behind us that I will sit with him clinging to me for as long as it takes.
The kindness and generosity of others has been amazing as well. I don't know if I will get around to writing thank you cards at this rate. I optomisticly brought some to fill the time, but I have to laught at myself for that now! But know that we are so grateful for the cards, emails, gifts, food, prayers, alcohol, and company, there simply aren't enough words to express our gratitude or how loved and supported we all feel.
We are hopeful that we get to go home on Sunday or Monday at the latest. It depends on how the next day or so goes but it is looking like it will be soon. We are about to start keto for a final 3 month stretch and then wean to a much easier diet known as the modified Atkins. We are very excited about this!
I'd better go to sleep before it gets too late but I will post some pictures from the hospital after we get home. Hopefully nothing too eventful happens between now and then.