June 6, 2006

I have really good news to share...I just got off the phone with Kelsey and they were able to extubate him (meaning he is OFF of the ventilator!)!! He is speaking and talking to kels, his family and hers...he wants to know who won the race on saturday and he said he feels like he needs a shower!! It appears he remembers racing and his symptoms & they are trying to explain to him now what has happened since that time.

This is truly extraordinary news, nothing shy of a small miracle given everything. As Kelsey herself said to me, she wants to be careful to not allow herself to get "too excited". This is also something that Chris so wisely and importatly reminded folks in his email last night - we need to feel the happiness (and yes please do right now!) but we also need to be so cautious about feeling that this is all "solved". I myself have found it hard to find the balance between remain realistic when trying to relay facts to everyone (as best as I can gather from the nurses, kelsey and doctors out there) and simultaneously to be optimistic. It is hard to have his amazing progress sunday to be followed with his less responsiveness yesterday to talking today - it highlights again how exceedingly fragile the human brain is and that even the doctors with high tech exams, scans, testing cannot 100% tell you how dirk will be from moment to moment. All of these tests help to allow better prognosticating about what will follow but as yesterday showed it can be a series of forward and backsteps. We cannot allow ourselves to become disheartened when there is a backstep - think of it like kids learning how to walk (once they take their first steps it's hard for parents to see them fall or tumble, but that is the normal path of re-learning and improving, it's not a definite permanent setback).

Onto more of the facts - as I'm sure most people now wonder what next? I spoke with the nurse 2x today about his condition - the doctor has been rounding all day and will call back later today. I can tell you all of the following:

1- He was moving all of his limbs spontaneously today and also "to command" - i.e. when the docs tell him to move something. His legs seem to be doing well - he still is having a harder time moving his left arm and his right arm. His eyes are still "dyscongugate" - meaning they don't track well together which can make him have blurry vision. This is because the area of his brain of the bleed affects the eyes movement.

2- This morning he was still having some periods of not taking adequate breaths - but apparently he progressed enough for them to feel comfortable getting him off the ventilator which means he breathes on his own.

3-He still has the drain in place. Again, the pressure in his brain (ICP) is high due to the bleeding and swelling which will still take days to recover. The drain sits in the ventricles to serve as an outflow valve for fluid and to relieve the pressure. They have been gradually decreasing the amount of outflow of the drain in order to see if Dirk's own brain can absorb normally again. So far they have been able to turn down the outflow every day but he still requires the drain inplace in order to prevent higher brain pressures. The goal is to have the drain out but this is a day by day stepward process. If he is unable to have it out (i.e. his brain can't absorb fluid fast enough causing high pressure) he would need the shunt.

4-He doesn't have a true pneumonia - it was more of an irritation caused by aspirating (swallowing) stomach acid into his lungs. He is on antibiotics nonetheless but all markers of infection are trending down.

Where do they go from here? Again, day by day they will continually assess the brain pressure to hopefully have him come off the drain. In the interim, he will be visited by a speech pathologist today to see if he can swallow safely sothat they can start feeding him...Jerr B he wants your cookies :) :) He will be working with therapists also on regaining strength and fine motor skills ONCE the docs there decide he is stable to do this more taxing work.

They do plan on repeating some form of a scan, either an MRI or another angiogram in order to attempt to clarify the source of the bleed - back to AVM? It is unclear if they find the source whether they would advise treating the AVM in honolulu OR to have him fly back to have it done here. Again, to emphasize, his recovery is HUGE but he still has a high risk of re-bleeding as no definitive therapy has been given to minimize this risk.

They will also need to continually monitor his level of alertness...as we saw yesterday even the tiniest change in his brain can make him more sleep/less rousable and lose motor strength. As a comparison, people can drop their salt level (sodium) and even this tiny change can cause comas and seizures. So take dirk who raced, slept little, had a bleed, plus lung irritation, plus being in the intensive care unit where the lights are on 24-7 and your are poked for blood and tested neurologically every hour - he has been through a tremendous amount so his brain will need to recover at its own pace.

IF, he has a scan and it identifies a source, they will need to decide when/where to treat. We are working now on finding the best people here in the US to be ready if treatment is done here.

I hope that this is helpful. I am sorry if i haven't been able to respond to everyone's emails but will try to get back to peoples' questions. I truly appreciate all of the offers people have proposed and have conveyed them all to kelsey and chris and the jerrys. I also wanted to let you know that Eric Vlieks found a way to email dirk at the hospital.

"I found something on the hospitals website that you can share with the group. They have a free email service that people can use to deliver messages directly to Dirk. Follow this link:

http://www.queens.org/emailapatient.html

Use ICU 4D for "Area/wing" and room #467 when prompted."

Lastly, I wanted to say that so many people have asked what we can do - as chris had said - keep praying and hoping and flooding them with your thoughts and hopes. I hope they will be able to fly back and if so, I know that they will rely so much on everyone to see them through the still difficult journey ahead.

xoxo Kiki

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