Still in the OR - NO SEIZURES

The waiting game continues...

Now having stopped the seizures with high and fast doses of Anesthesia the team wants to try and wean him off very slowly and see if Toren's brain remains quiet. If that works they will keep the electrodes in place... Otherwise they will need to remove the electrodes. Your prayers for the highest and best for Toren - and continued skill and wisdom for his medical team would be greatly appreciated.

With love

~Martina and Helaini

Friday morning - back in the OR

Dear Ones,

We are waiting in the recovery room. They decided to take Toren back to the OR to try and stop the seizures with General Anesthetic. If it works they will keep him under and on a vent for 24 hours and then start to lift the sedation and assess the state of his brain/seizure function. If they can't stop the seizures then they have to remove the electrodes and close the brain - we remain confident that this team is exactly who should be working with us. Please keep Dr. Doyle, Alison and all the team in your prayers and hearts. We are grateful to have you behind us, sending love and light.

Fiona and Lisa where on point to support me yesterday, plying us with food and companionship. Helaini is back in NYC having jumped on the bus last night... she is full of positive energy even on very very little sleep.

Jonathan was willing to be a sounding board for me very early this morning.

Marvin is going to come down for a visit today, which will give Helaini and I a chance to breathe some fresh air before he goes back home to be at work early tomorrow morning.

I will post again soon.

48 hours after surgery

Toren is resting, in a deeply drugged sleep. It is almost 11pm on Thursday night... we are back on the Epilepsy floor - in the same 4 bed nurse monitored unit as last time. We are in the other window corner. The doctors are working diligently to stop the endless seizures... to quieten the brain and in essence let is reset - much like rebooting a computer. This team of doctors and nurses are amazing, the open interactions, the questioning of the situation, the willingness to explore all the options, the humility is awe inspiring. Even while the doctors remain very concerned, I feel this sense that we are walking the right path... he looks to healthy and strong... all his vital signs are perfect, and yes it is alarming that the seizures remain so out of control. So fear or faith, it is a choice, I choose faith.

We have come so far,

Day 3 - Thursday Sept 2nd -More Info

The plan as of now...

Somehow stop the seizures - more medications... let Toren's tired brain and body rest for 24 hours and then slowly peel back the medications so that he can seize again, hopefully with a clearer pattern, similar to his prior seizure pattern and then the doctors can come up with a plan of action. Mapping, further resection/s, vassal dilator, etc. etc.. Because of the Tonic seizure activity we are staying up on the 12th floor - Neuro ICU - at least for the time being.

Your prayers and messages make a significant difference. I am in awe of the staff here. We are so very blessed to be in this place, supported by all of you, seen and unseen... and in so many different ways.

I find myself in a place of strange peace, the knowledge that we are doing what we can, and that God will handle the rest is soothing. The unseen - ness of this path we travel is its own strange blessing. The candor and inclusive style of Dr. Carlson and Dr. Doyle and his NP Alison is truly inspiring. However, this journey plays out. I know without doubt that angels are walking the path with us, and that we are held up by the love and kindnesses of so many.

Day 3 - Thursday Sept 2nd

It is Thursday morning I started writing this at 8:30 - but have been fortunate enough to have various meetings with doctors and nurses. Right now at nearly noon, Toren is sleeping quietly even though he is have a lot of sub-clinical seizures - which means we can see the seizures on the EEG but not in his body. He fairly well drugged up with sedatives, anti-seizure medication and pain killers, topped off with some antibiotics and medicine to lower his blood pressure. He has been so kind and brave, but is obviously periodically very uncomfortable physically and emotionally.

It was another long night. Toren has been having increasingly longer and more frequent mild seizures.. so the doctors can collect lots of data and that will help them figure out how to address the 2nd and maybe 3rd focal point/s. Toren had a restless night, but still managed to get some real sleep. He is still unable to move his right side in any significant way.

We remain confident that this is not the result of a stroke... they did all the MRI/CAT scan's yesterday and right after surgery. We have seen this before after seizures... how much rehab it will require remains to be seen... but we know that Toren is determined and strong.

He is still unable to really talk, but lets us know he has needs (and we are often able to understand what to do for him).

Toren gives waves to all who enter, and hugs to many of his favorite nurses. He enjoys holding hands and giving us hugs. He is often aware of the onset of the seizures, and lets us know with sounds, or hand waves.

Helaini and Mummy left yesterday early evening and Fiona spent most of the evening with me, plying me with liquids, foods and much needed distractions. I am so lucky to have friends who have been email, commenting, texting, phoning and visiting. It helps.

While I am rather tired (Fiona will come in this afternoon to give me a chance to go back to the apartment to sleep.

Toren's drains are out - which is a good thing - I got to help by holding his good arm - it was my work out for the day. His doctors and nurses have been so wonderful and supportive and clearly remain determined to keep me involved in the conversation about what to do next.

It is strange to say - but brain surgery and post operative experiences are not as horrific as I had imagined. In my world I feared it would look a lot like our crisis in the ER and ICU after an uncontrolled episode... He is far less uncomfortable, and less vulnerable. more later

The Morning After the Surgery

Is it 11:30am... I have finally made it back to the apartment to take a break, and get a little sleep. Helaini and Mummy are with Toren, bless them.

Toren had a rough night... he didnt get to recovery until around midnight. The surgery went well. All the grids, stripe and probes are appropriately in place. The left front temporal resection was also completed successfully. The was some complications upon waking him. He was hard to rouse... very hard, enough that the did an emergency CT scan before bringing him to recovery. He is post seizure... that was the problem. He has what we hope is only temporary loss of mobility in his right leg and hand, he is struggling to speak, but has said, YES, NO, STOP, MOVE and OK - and clearly recognizes his family and reaches for us, and hugs us with his good arm. He is in a lot of pain, which the doctors are trying to manage. He is clearly confused, and exhausted, Thank God however, he is stable... now we wait for more seizures, to get more data about the 2nd focal point. He is still in Neuro ICU and we might move to Epilepsy floor later today, or tomorrow... For added excitement he lost his IV access at about daybreak... and it was impossible to find another vein.... okay they found one, but it only lasted 5 minutes. So then we went down with Alison, Dr. Doyle's very wonderful and capable NP and got a PIC line put in... and then to MRI just to check how things look today.... Now that he has a line in, he can get his medications.....

The left side of his face is swelling slightly....but his color is good and he often reaches for us, to give us a hug to his chest.

Thank you for all your well wishes and prayers... we will keep you posted

Toren's surgery was successful. He is stable, although he has had a rough night, and is in the Neuro ICU. As soon as Martina gets a chance, she will blog more details.
- Fiona