Grid Placement - Day 4

Today was way better than yesterday! 

Jace's pain is being controlled with an IV medication and not morphine! I don't know why it took them so long to start giving him pain meds that can be given in his IV but I am SO grateful they did. 

What they are giving him is much easier on him and his digestive tract. Not constipating and non narcotic. The nurse said its very similar to ibuprofen - just a little stronger. 

The issue now is getting him to take his seizure medications. He flat out refuses and when I try to sneak it in while he is sleeping he spits it out. He has gotten smart on us. He will only drink water from his sippy cups because its the only thing he knows we won't mix his medicine with. Since he won't take his seizure medication they had to give him another medication via IV. Its like Dilantin but not quite. His doctor said this will at least hold him over for the day. I am PRAYING he will take his medications after the next surgery and for sure once we get home. We will not have the ability to hook up an IV when we get home. JB and I are very concerned about this. Add this to your prayers for us please. 

On the upside I have to admit that we did not actually see any seizures today so that IV must have worked. 

When we woke up this morning Jace was actually swollen. He actually started to get a black eye and the left eye is swelling. Its not bad and its completely normal for this to occur. 

This morning Jace was FREED! LOL They unhooked the wires to his grids from the EEG monitoring. He still has the drain but that does not weight much and he can have the drain in a small backpack so its not dangling.  This took off a LOT of weight from his head! It also freed him up to be able to go to the playroom. He was excited to get out of the room! :) 

We went to the playroom and let him walk but after being in bed and on narcotics for 3-4 days he was wobbly. It was more stressful watching him, shadowing him, and making sure he wasn't running than it was to keep him entertained in bed for 3 days! He fell once and thankfully it was not hard or on his head. After about 30 mins we came back to the room. We didn't go back to the playroom because we were too concerned that he would fall and when we were following him he was getting MAD!

 We figured we would just avoid that fight and tantrum :) 

After playing in the playroom it was nap time! This picture reminds me of when he was a baby because his face is pretty swollen so it looks baby like. 

We signed the consent for Phase III, the tuber resection, which will occur tomorrow at 9 AM. We asked Dr. Tandon for the picture of Jace's grids that he showed us yesterday. He said he would BUT he is notorious for not getting them printed for the patients - he admitted that :) We asked if he knew approximately how big of an area he was going to remove. He said it was hard to say for sure but one spot is about the size of a pocket watch and the other is about half the size of a pocket watch. 

We are much more at ease about this surgery but again its always nerve wracking to have your baby put under anesthesia - whether its for brain surgery or a simple ear tube insertion. We trust that God will take great care of our baby boy and will guide Dr. Tandon's hands. 

I am excited to see how Jace will be after that area is removed. His brain has not had a break from those constant sub-clinical seizures in 2 years that we know of. I am anxious to see how much he picks up and develops once he has the ability to full focus! The seizure meds will continue for at least a year so that will cause some fog but it won't be combined with constant seizure activity. 

My mom came and visited again this afternoon. She played with Jace while JB and I went to get dinner. 

We appreciate this so much! Thank you again Mom! 

Its always nice to get out and get some fresh air together. We walked down to Texas Children's to eat at McDonald's - again thank you Kristen and Nathan for the gift cards! 

When we got back Jace was pretty played out! :) 

He was ready to crash out pretty quickly but we needed to give him a special "bath" to kill any germs on him before his surgery. He got one bath tonight and will again in the morning. We had to change out all of his bedding including his SUPER soft minky blanket that Lisa made him. Luckily we had just washed another blanket that our friends Misty and Derek gave us so we are using that tonight. Its soft and is MUCH better than those scratchy hospital "blankets" (thick sheets LOL). 

His minky blanket really does need to be washed. That will probably be something we will do to pass time tomorrow while he is in surgery. I am SO thankful for the Ronald McDonald House here. We can wash our clothes, get snacks, rest, and get out of a hospital setting there. It really is invaluable for any parent that is in the hospital with their child for an extended amount of time. 

Its time for me to get to sleep.....they will be in here at midnight and 4 am for his meds.

Hoping he doesn't wake much between those times. 

Please pray for a safe, successful and speedy surgery tomorrow! I KNOW God has Jace in his hands. He has done so well because of all the prayers. We are so grateful for all the people praying for "Baby Jace"! 

Thank you and we love you all!