Step-Son having surgery

[docruger]

prayers are still with you buddy.

[DoctaJ]

My thoughts and prayers are with you and the family as well. Stay strong as I'm sure your step son is doing.

[tx_tuff]

We got a late start today. The stealth MRI was pushed back to noon. We went straight down to MRI where anesthesia prepped him with happy juice (in his IV) and then bubble gum flavored gas. The anesthesiologist said she was going to have to take out the EMU’s IV and start a new one. Simon wasn’t TOTALLY asleep yet, and he had a lot to say about that! Poor little guy with those IV lines! After they kicked us out of Radiology, we went back up to the EMU to wait for Dr. V. to come talk to us about a change in plans.
Initially, while reviewing the EEG, she had felt the minor right side seizures appeared to be coming from the left side and spreading over. Upon closer examination, she concluded they were in fact originating on the right side. So we had two options: taking the rest of the angry left seizure area AND :
1.) putting grids on the right side, monitoring him for a week, mapping the brain, and then seeing if they can resect any of the right side area, OR . . . .
2.) Multiple Subpial Transection (MST) over the right side area they think is causing the seizure. MST is basically cutting the connections between nerve fibers on the surface of the brain so if one starts a seizure, it won’t spread to another fiber then another then another, etc.
I chose MST for several reasons:
1.) Simon just can’t take another week in here, let alone a swollen week with grids, followed by another surgery which may or may not include resecting any tissue. What was supposed to be a 23 hour visit has been 374 hours as of 1 am tonight (Fri morning).
2.) There is no guarantee that after grids and mapping that they would be able to remove any tissue at all, so he could go thru all of that for nothing, when he SHOULD be at home resting.
3.) It would be really hard on Simon to recover from losing two major chunks out of each frontal lobe if they WERE able to remove anything from the right side.
4.) If the MST doesn’t help control the seizures, then coming back for grids and mapping the right side MIGHT be an option to explore at a much later date, after his brain has healed and found its new groove from today’s surgery.
5.) The chances of him having any physical or cognitive impairments from the MST is slim, but short-lived (couple of weeks) if he does have any. However, with resecting the right area, he could very likely suffer damage to his individual “self” that would be permanent.
Dr. B. opened up the left side around 3 pm, and Dr. V. came out after 530 to say that the left side was done. It went very well, he received some blood during the surgery, which we anticipated based on his previous surgeries. She said she really believes they got everything on that side. She is hopeful as much as she is confident, if that makes sense. She knows they got very close to the Supplementary Motor Area, but because of the Stealth MRI, they did not take any tissue they shouldn’t. She did say he might have temporary neglect to his right side (like forgetting it’s there) but that if he does experience that, he will recover quickly--IT WILL NOT BE PERMANENT. She said they were going to put an EEG on the right side to see if there really were any independent seizures coming from that side as she suspected. If not, they would close him up and send him to MRI for post-op scans. If there WERE seizures, they would begin the MST which could take around 2 hours to complete.
She came back about 615 to say Dr. B. was beginning the MST on the right because there ARE seizures there. Dr. B. came out at 830 and said Simon was heading to MRI. He said they took everything they could from the left frontal lobe, did an EEG and it was all quiet. The right side’s EEG would stay quiet for several minutes, then a BOOM of activity would show up. So he did the MST over the entire right frontal lobe. He said the brain is organized vertically, but seizures spread horizontally. So it’s like @--@--@--@--@. He cut the fibers connecting the surface cells, so now it’s @- -@- -@- -@- -@. His analogy was like cutting phone lines between telephone poles. Hopefully this, along with the left side resecting, will knock the seizures out 100%. Or at least make them livable. He prepared us for the right side neglect: he said if Simon does have this, it can take 24 hours to show up, and several weeks to go away. BUT IT WILL GO AWAY.
They took Simon from MRI directly to the PICU. We were allowed in at 11 pm. He was doing fine. Of course getting a patient settled is a major event in the ICU, so it was pretty hectic. He was awake when we came in. He has oxygen mask which he will lose before morning. He still has a catheter in, but they will take that out before morning as well. He recognized us and gave us not only a thumbs up sign with both hands, but also a live long and prosper AND rock n’ roll. He is using and moving both hand, feet and legs so far. He can speak and seems to be doing remarkably well. He DID receive 3 units of blood in the OR and he threw up before getting to the PICU. He also had fever of 100.3, but he has cooled off now to a nice 98.8. But considering what he has been through today from noon until now, he has really been so so strong!!! He is one tough little dude. I am amazed and awed by him every time I look at him. Two thumbs way way UP! We are all super proud of him!
Info on MST:
Multiple Subpial Transections | epilepsy.com
Info on Stealth MRI:
Neuro Spine Center of Wisconsin - News

[azpostal]

Wow Simon sounds like one strong kid. I hope all comes out ok and it sounds like the surgeries are working. I'll be praying for him and your family.

[tattoofreak]

I'm sorry I just seen this been a little busy with the passing of my mom haven't been online much but I hope everything is going well your son my prayers are with him let me know if you or your family needs anything.

[Don Francisco]

G-d Bless him! I can't even begin to comprehend what he must be going through. You gotta stay strong for him! I'll keep praying for all of you.

[Cypress]

My God.... I am speechless. There arent any words that can describe the courage that Simon and your family have to make it through this.

[Sweet_Cigars]

That was a little roller coster ride trying to get through that update but when it ended with the "Two thumbs up" I almost cried in joy!

Frank, you have so many brothers and sister here that are pulling for Simon and praying for him that I am cofident that this whole story will end happily ever after!

Simon IS tough! I don't think I could handle what he's going through! If I could I would bump his RG!

[Doogie]

tuff kid. lets hope this is the last of it

[fiddlegrin]

.

Wow!

That is an amazing process!

Thank you Frank for the update.

I hope you were able to get a good nights sleep. I'm sure you were all exhausted!

I'm in awe.......... and very grateful that the procedures went so well.

Rejoicing: (gotta go send Simon another note)

[DoctaJ]

Originally Posted by tx_tuff

He recognized us and gave us not only a thumbs up sign with both hands, but also a live long and prosper AND rock n’ roll.

That is one strong kid you have there! The way he is handling this is remarkable. I can't imagine even myself going though a procedure like that . I'm glad everything is starting to go well and the light at the end of the tunnel is at least in sight. Keep us updated on how everything is going!

[tx_tuff]

Simon had a good night in the PICU, only getting sick one time around 5 am. They removed his oxygen mask and catheter early, and he took his meds at 7 am without getting sick. Dr. V. and Cathy and crew stopped by and were joined by Dr. B. and Amy. They were all relieved he did not appear to have any right side neglect. He wouldn't talk to anyone: I'm sure none of them are his favorite people right now. Dr. B. told Simon if he would just show them all a thumbs up, they would all go away. Simon's right arm shot straight up with a thumbs up and everyone laughed, glad that he could use his arm just fine.
We almost didn't get to go back to the EMU right away. His sodium level was too low. They tested during the night at it was 132. At 7 am, it had gone up to 134. Amy didn't want him to go until it was 135, but she said it would be ok as long as they increased the sodium in his IV and checked him in 6 hours. We went back to the EMU where Robert was waiting for him. Even Sara, who was off from the unit today, stopped by when she heard Simon was back. When his sodium was checked again, it was still at 134. So Dr. B. had Robert slow down the IV and wanted it checked again at 6 pm. At 6 pm, it had dropped to 129. So Dr. B. said no food or drinks, slow down the IV drip even more, and check it again at 10 pm. We should have results by 11 pm. The reason the sodium is so important is that if his level gets too low he could be in danger of brain damage, coma, or respiratory problems. His level is not low enough for any of those things, but that is why they are watching it.
Speaking of respiratory problems, we were visited by a respiratory therapist today. He gave Simon a little device to do some breathing exercises. Robert had called him down to listen to Simon because his breathing is a little labored and phlegmy sounding. He will have to suck through the tube like he was drinking from a straw 10 times and hold each time, so he can exercise his lung capacity. I got him to do it once, but all he wanted to do today was sleep. So tomorrow he will have to do it. They are not worried, just being cautious: they don’t want him to develop pneumonia.
He has pretty much slept the entire day. He was under general anesthesia for almost half a day yesterday. He needs to sleep it off. His poor little lips are so chapped and his right eye and both temples are swollen. He has kept his low grade fever from last night. It fluctuates between 100.1 and 100.3. Post-op, they don’t consider anything under 100.5 to be anything to worry about. However, despite all of these things, including the sodium and the breathing, we (including his doctors) are all very happy. He is hanging in there, doing very well if you consider all he has been through!
Now the news you’ve all been waiting for . . . . . We didn’t see any seizures at all today! True, he HAS been asleep most of the day, and he is still heavily drugged, BUT I take it as a good sign that things are going to be so much better for him! Whether he is 100% seizure free, or just almost., anything will be an improvement compared to what he was suffering everyday. Way to go Simon!

[Cigar Man Andy]

Yea team... Way to go Simon...

[Sweet_Cigars]

Thats great news Frank, I am pulling for the little man. Hope you are able to get some rest as well.

Thanks for the update we will be waiting for the next one.

[ashmaster]

That is wonderful news Frank. I loved it when Simon's right arm shot straight up with the thumbs up, that was great. Continued prayers for your family and a special for Simon.