Tuber Resection Surgery

Today is the day Jace will become Seizure FREE! 

Jace decided at midnight last night to sit up and talk for 2 hours. We had to keep telling him to lay down and it was night night time. He eventually laid down and slept. We woke up around 6:30 am. 

Poor baby was asking to eat but we could not give him anything. 

They finally came and got us at 9:30 to go down to the pre-op area. 

Jace was pretty calm today and in a good mood. 

We got to the pre-op area and he played with some toys until the OR was ready. 

I caught a small amount of him singing the ABC's with his toy

And we had to sing "If You're Happy and You Know It" :) 

The anesthesiologist and nurse came by. He liked the nurse and went to her with no problem. 

Since he was so calm they decided he didn't need the pre-medication that they give to make the little kids chilled out. They took him back around 10:30 am. 

We met Nathan at the Zoo entrance and he picked us up to go to lunch. We went to an incredible Mexican restaurant called Cyclones Anaya's. After that he dropped us back off at the hospital around noon and we went to get a check up on Jace. They had not started on Jace yet by 12:30 but should be within 10-15 minutes. JB was wondering why it was taking so long but they have a lot of pre-op stuff to do. Monitors to hook up, shave his head, clean up the operation area.....all that stuff that takes time. 

At 12:50 I got the call from the waiting room that they started the surgery at 12:45. 

We are lounging at the Ronald McDonald house washing clothes, relaxing and I am blogging. 

I will update again once I get more info :)

UPDATE #1 - 2:55 PM - I called for an update on Jace and they said everything is going great but they are still working! Keep the prayers coming in - God is answering them!

“Again, truly I tell you that if two of you on earth agree about anything they ask for, it will be done for them by my Father in heaven. For where two or three gather in my name, there am I with them.” Matthew 18:19-20


UPDATE #2 - 4:32 PM - Dr. Von Allmen came out of the surgery and said they removed all of the tubers in the area that was causing his seizures. After removing this area they put the EEG on him and all was quiet!!!! Praise the Lord!!! I am so excited, relieved, overcome with so many emotions! All I can do is cry!
The only complications we may see is temporary weakness on his right side. We will get physical therapy and speech therapy to evaluate him tonight or tomorrow.
They are closing him up right now and we should get to see him in about 1.5 hours. I bet it will be more like 2-3.
Tonight we go to PICU and they will get him all ready, stable and awake. We should move to the EMU tomorrow. His bandage will come off and the drain will be taken out.

UPDATE #3 - 5:20 PM - the nurse from the OR called and said they are closing him up now and will send him to CT Scan after that. It will still be about 30 mins before they go to the scan. He is doing great though! Can't wait to see our sweet baby boy's face!!!

UPDATE #4 - 6:00 PM - Dr. Tandon came out and said the surgery went well they are taking Jace down to the CT Scan the to recovery. We won't know how well he is from surgery until they wake him up. However, Dr. Tandon said he is confident it went well and the only effect we should notice is NO seizures!! :) I am so full of joy about this!
Dr. Tandon said the two tubers that he took out were "impressive" and sounded like they were bigger than he had expected. We asked for an approximate size and he showed the end of his thumb. That's for each tuber and honestly was not as big as I had thought. :)
Thank you for all the prayers! God is faithful and has answered. Keep those prayers coming for a great recovery!!

I meant to add earlier that they did have to give Jace a small amount of blood via transfusion. This was expected.
And the first surgery they gave us Jace's hair that they shaved off.....will share that picture later.

UPDATE # 5 - 11:15 PM -  Here is Jace's hair in a bag :)

Look how much it had grown back in a matter of 3-4 days!! They had razor shaved his head too! 

Earlier while we were waiting to hear Jace was out of surgery we went to Hermann Park. Fresh air is really important! We had to have that rather than sitting in a waiting room for 6 hours! 

While we were there we saw some squirrels and they were the friendliest ones EVER. 

It was a little creepy how close they came to us...I thought one was going to climb up my leg like I was a tree. He was THAT close! 

Almost about to let JB touch it! 

We stopped by the EMU room to eat dinner and we found this incredibly cute cookie bouquet from JB's project at work! 

Speedy recovery but I hope speedier than turtles ;) 

Unless those are super fast turtles! 

When we finally made it back to see Jace in recovery he was partially trying to wake up. 

He was pretty fussy and they started him on his pain meds and anti-nausea meds. This helped some but no fully. So they gave him some Narco orally as well. The nurses had to hold him down and force it but he got most down. After a bit he was crying and then in the middle of crying he would look up at the fish on the ceiling and ask "whasdat?" LOL the nurses got a trip out of that b/c it was just in the middle of almost screaming and he would stop on a dime to ask that! 

They got up set up in PICU room #6 and after a BUNCH of getting things adjusted I held him and that helped calm him down. They had to remover the arterial line and foley cath - both of which are good to have but wires that are VERY annoying! Less wires is much better and honestly the foley was annoying or uncomfortable to Jace. I don't blame him. 

JB got a room at the Ronald McDonald House so he would be closer tonight. JB went and got our essentials for the night from the EMU room while I just held and loved on Jace. 

 I went there to shower and then came back to get Jace ready for bed time.  

Jace was shivering pretty bad tonight - he was on Wednesday as well after the anesthesia. I am pretty certain the anesthesia makes him shiver when he comes off it. This was worrying JB but mainly because it was coupled with Jace making this squinting face when the lights were on. He is very worried they are seizures but I am staying positive and know its just because he is not yet fully awake from the anesthesia. 

We had to give him his seizure meds and he took them!!! We had to hold him down at first but after a few squirts he just sucked it right down as he usually did! YEAH!! keep those prayers coming! We need him to keep taking his meds for us!! :) 

Well its time to get to Jace to take some meds and drink a little bit of juice if he wants. 

Keep on praying for a good recovery!! The surgery was a success - God was listening to all the prayers that have been said for our little guy!!! Thank you!!!!! 

We love you all!