Pray

David is having continuous low-level seizure activity in his brain and is sleeping and not very responsive. This has been going on all day. Please pray for this to stop.

Cautious, but....!

I should not think about this much less post, but Dr Sutherling said something about surgery Tuesday. Everything else was very guarded and explaining that they have a lot to study so it is very premature to say if these seizures will be enough. At this point I am really happy to have even shortlived, false hopes. The stress of getting to this point has been huge. But why is it about me? It ain't! Somebody remind me!!

Doing better

David has slept well all afternoon. His distress this morning may have been because they think he was having low-grade seizure activity for a long time.

Apparently his doctors are looking over the recordings to see what they show. If they get a definite location for his bad spot then he will need to be tested to make sure that taking it out doesn't do some damage. Dr Maleeva will give him little zaps up the wires to see what happens. Pray that if they are ready to do this soon, that he will be alert. He is really out of it still.

Peaceful sleep and seizures!

After a bad night and really bad morning David has now been sleeping 3 wonderful hours.

He had several little seizures this morning--just his mouth twitching noticeably. Nurse Liz was Very Happy and said they are good seizures! They are leaving it for the Doctor to tell us, but it sounds like the grid picked them up and they are on the left side. I hope, hope hope they are good!

A Trying Time

David is going through a phase we had heard about, but it's something else when you actually go through it. He is in a lot of pain. The doctors don't think more pain medication is wise because they need to know if his brain is safe, which they check by periodically looking at his neurological indicators. If he is too sedated he can't respond enough for them to know how he is doing. They ask him to move his feet, grip with each hand, and answer simple questions. So far his 'neuros' are good, which is the most important thing. Please pray that they remain good, and for God to give him strength for this phase. Thanks for walking this road with us.
The LORD gives strength to his people; the LORD blesses his people with peace. (Ps. 29:11)

More normal

David is more normal now for what people usually go through--yukkk. His head hurts in spite of Vicodin and morphine. He can't sleep. We are hoping Dr Sutherling approves his getting his usual sleeping medicine tonight and that it would help David REST.

The wonderful nurse on shift tonight said the first 72 hours are the worst then it gets better. And David is nowhere near wanting or needing to quit--hallelujah!!

Thanks for praying for the dear boy.

Swell guy

It's funny--David is feeling a bit worse now than earlier. He got some morphine a short time ago because the pain got worse, and his head/face is swelling a little. He's still looking great though. Still not hooked up to the EEG yet so it feels like a race since he keeps having auras meaning a seizure may be coming soon. I hope we win. We were just imagining--one seizure today, two tomorrow, surgery Friday and home Saturday. After preparing for the worst, it's a nice change. No, Bij, I won't get disappointed when it doesn't happen.

Great Morning!

David feels great today!!! I came at 9:30 to the CCU room and he had a big smile on his face and a huge pile of food on his breakfast tray. It was stunning. Last time around he felt like ... awful... and didn't eat much for a couple days.

He just started experiencing some numbness in his fingers but it seems to be over. Maybe it was a tiny seizure.

Speaking of which, praise God he has had no seizures yet!! He is having auras so he may be ready but hopefully they can hook him up to the EEG first so when it comes it will count. He is in his regular room now so whenever it is his turn the techs will connect him.

Someone else to pray for here: the waiting room near here is decorated for a wedding later today. Apparently there is a lady who won't be going home and wants to get married before she dies.

Photos of this morning

Top: 4:30 am, time to go. Bottom: Dots on David's head as reference points for the MRI.

Resting up at the CCU

David is resting peacefully at the critical care unit (CCU). They gave him some anti-inflamatory medications just now to help prevent problems. He responds when they try to wake him up and can move his feet to show he is doing OK. Thanks for keeping him in your prayers.

He is out and did well but pray

David is through surgery, did well and is in the ICU.
There was a little earthquake but Dr Ross came out shortly after and said David was done already.
Dr Ross said because he is young his brain is large and fills his head so fitting the grid in too is very stressful. It actually may make him so sick that they have to take it out and send him home. However, this is normal for all young patients so hopefully he will get through it. But please pray for him to make it through, especially tonight and tomorrow.

Go!

David is in surgery now. Things were a little slow getting started with the MRI he needed before surgery but nothing major. I will post when there is news. Also photos. I took several at 4:30 am as David, Bijan and Sam (!) were leaving. Sam thought it would be exciting to go and he's an early riser. Hopefully he's a good napper too.

Bijan hasn't said yet if anyone noticed my artwork on David's head. We just had to do something creative--and there was a lovely dark head of hair to be buzzed off, and clippers that worked pretty well for shaving messages on it. We thought of "do not open till July 29" but it was too long. "Open here" seemed risky in case it confused someone in the OR. "Remove before flight" just barely fit and is a tag seen often on planes and is primo for jokes. Anyway, Bijan won't take David up till his epilepsy is under control, and David certainly couldn't pilot a plane till he's healed and off meds. So the bad bit of brain needs to be removed before flight.

Stress generates weird humor around here.

Ready, Set...

David is feeling fit and healthy and is ready for surgery tomorrow morning!

Could we ask y'all to sign your names in the guestbook at the bottom of the blog, so David knows who is checking in and praying and rooting for him?

His VNS implant is an issue to pray about. It doses him with electrical pulses that go up the vagus nerve in his neck and help his brain not to have seizures. He is dependent on it as we found out a couple times when something went wrong with it.

He has to have it off for the MRI they do before his surgery. So the plan is to turn it off at 4:30 this afternoon and turn it back on after the surgery, mid-day tomorrow. I feel that is a long time and he will be at risk of a seizure. In fact last surgery in May it was off for about that long and he had a bad seizure the next morning while in ICU. It was before the EEG was connected so it didn't count for anything. So please pray for him in this area.

David recently realized there is a positive side of this: when he is all hooked up and ready to have seizures, dropping the VNS dose may trigger seizures better than dropping meds. It may break through the Ativan which was so effective last time. If so maybe he can get his three seizures on the EEG and get out sooner this time. Not that we don't like it there--the nurses and everyone are so good.

Thank you so much whoever is praying. We feel it. We are in pretty good shape. This is very sobering and challenging but we feel like it will be good.

Passed!

David passed the Wada test this morning so that he made it through the last hurdle to get to the grid surgery! This has been many years in coming, being turned back at one point and told that he wasn't a candidate for surgery. We are so thankful for Dr Sutherling who doesn't give up!

Three Prayer Requests

Thank you, everyone, for showing your love by visiting and praying for me and my family.
Three prayer requests we have right now are that:
- I will have no seizures today or tomorrow, so that the Wada test (tomorrow) will go well and find all necessary information;
- Mom will continue to recover from a bad cold;
- Dad will also recover from the same cold.

Thank you, and God bless,
David Nemati

Welcome Sean!

Sean Graves is kindly going to become a respite worker so that we have his help during David's next hospitalization. He and our friend Kathryn and our sons Sam and John are all planning to spend nights in David's room to make sure David is ok if he has a seizure or needs anything. If we're lucky Sean might post an update sometimes.
Thanks, Sean!!!

More meds, less seizures

I finally called the doctor's office over the weekend and got advice to increase poor David's Keppra. He has had seizures about every two days since he left the hospital in early June. Except for two weeks on Ativan, but we can't overuse it or it won't be any good in the hospital for when they need to administer it. Too bad because it works better than anything David has ever taken. Which is why we pursuing brain surgery. I'm so ready to be DONE! Done with medical stuff, done with epilepsy, done!

Anyway, increasing his dose of Keppra seems to be working well, and so far no side effects. It can have a very depressing effect so please pray for him to be ok these last two weeks till surgery.

More soon

Things are scheduled to get interesting soon. I need to update and clean up the blog and redecorate a bit. (It's nice that it's free to do that kind of redecorating.)

David has a pretty major diagnostic coming up next Tuesday. He has lab work on Friday to prepare, then he has to be admitted to the hospital early Tuesday. In radiology they put a catheter into his femoral artery and do an angiogram to verify that he has good strong blood vessels, I guess. Then Dr Maleeva injects something to numb half his brain. The neuropsychologist then tests his memory and speech to make sure that both sides function well, or that he can lose one side because the other compensates, or something along those lines. That part only takes a few minutes. That is the Wada test.

The rest of the day he has to be in a hospital room so the hole in his artery can heal.

If all looks good then surgery is a go, on the following Tuesday.

Please pray for good results. Also that he does not have a seizure within the 24 hours before the Wada test as it would make us have to postpone it.

Success then....

We all enjoyed our six days camping at the beach. David kept thanking me over and over. He dug in the sand big-time, boogie boarded, kayaked, and had no seizures!

Sunday evening we returned then Bijan took David and Sam to a college-prep camp at Biola right away. Monday they were up early and off to do a ropes/group challenge day at UC Irvine. It was hot out and around 5pm, David had a seizure. He seemed to recover and be able to continue on with the group to dinner and an evening at Disneyland. He probably needs a rest or a long night of sleep--not a lot of that built into their camp schedule, but it will be interesting to see how he gets it. Maybe he slept on the rides last night or will doze off in an art museum. He usually pushes himself to get all the fun he can out of everything.