Sunday, September 20, 2009

More Ellie Updates

Update 10.27.09
Ellie is home now! She did end up having a permanent shunt placed to allow for drainage of the fluid in her brain. Now, she is home and the Lively family is adjusting to a new life with many challenges ahead. Please keep praying for Peter and Alana as they take care of Ellie and Katie...and each other. Thanks so much!

Again, please pray for Ellie Lively. God has been good and has answered prayer. Please continue to pray for our friends.

From Peter tonight:

Hello friends and family,

Wanted to give everyone an update. We're still very thankful for the returned blood flow to the right side of her brain, but our emotions get tossed back and forth as it seems with every two steps forward there are one or two steps back.

Ellie's been having seizures with some regularity, including four seizures Tuesday night. They could be caused by brain damage leftover from her stroke or possibly her sodium levels. Ellie's sodium (salt) levels have been very inconsistent, mostly low if not very low. They're not sure why, speculating it could be because of brain injury, could be because her system's adjusted for all of the fluids being pumped into her, or maybe because of a thyroid issue, or maybe it's metabollical, or all of the above. They don't really know and are doing a lot of tests. If we don't get a good handle on it, Ellie will continue to have seizures, it could damage her brain further, and she could go into a coma. Sodium is very important for nerve conduction, and could severely limit her development, to say the least.

Ellie's been throwing up last night and this morning, which is another symptom of low sodium. Whenever her eyes are open she always has a kind of 'panicked' look on her face, and she doesn't track extremely well with her eyes (but at least she's opening her eyes). She doesn't have the breathing tube anymore, which is great, or as many arterial lines.

The fluid from her brain is still draining, and hopefully we'll see the last of the blood left over from the hemohrrage out of her brain. The hope is that her head will be able to naturally absorb fluids so that she won't continue to have abnormal pressure placed on her brain. If this doesn't happen then a permanent drain or shunt will have to placed in her head, which will make her very prone to infections, could further hurt her brain development, and may not succeed in it's purpose anyway (though, we have many of the best pediatric surgeons here that should really help improve probable success).

We can't thank everyone enough for praying for us. We've sensed God's presence and voice with us through all of this. Two days ago I was having a difficult emotional time and was trying to read some psalms to Ellie, while wondering where God was. Some nurses came in and after they left I felt like I 'should' read another psalm to Ellie, but I didn't want to. I didn't feel like it. Right then I sensed that God said, "That's ok, you don't have to." Such understanding! I broke down, experiencing the reality of a God who 'sees' people in their distress, like the passage about Hagar in Genesis 16. I felt assurance that God is seeing us while we're in this nightmare, that He cares and He's 'seeing' us through it. After this I wanted to read a psalm to Ellie.

We don't know where all of this will lead, but God is still good. Please continue to pray for us. The prayers are being heard. Sometime early next week the neuro-surgeons will order another CT scan and evaluate how her brain is doing, probably determine if she needs the permanent shunt. Please pray that she won't need it, that her sodium will come under control, that her brain will continue to be heal, and that someday she'll be able to run around with her sister.

With love,

Peter and Alana

From Peter on Monday:

Hello everyone,

As many of you have heard, Alana and I received some great news about Ellie today. If you'll remember, the doctors had told us the aneurysm had disrupted the blood flow in her right cerebral artery, blood that was supposed to be completely stopped by the coil embolism Dr. Kumpe inserted. This stoppage of the blood flow would continue to severely damage the right side of her brain, basically causing it to die. This loss would greatly decrease if not paralyze her ability to move the left side of her body.

Well, we got back the results from an MRI taken Friday and the results were shocking. Ellie has blood flowing in those arteries! The doctors were very surprised. They had been speaking about the right side of her brain becoming necrotic as a past and finished event. However, Ellie has been moving her left arm and leg consistently (albeit, with less strength than the right) and it was never understood exactly how until now. Somehow, through something called collateral blood flow, blood has gone around the aneurysm and the coils, somehow, and found it's way to the affected arteries.

This is almost too incredible for Alana and I to believe. We had come to accept that those arteries and the associated brain tissue were a lost cause. We've been wrestling with this 'fact', wondering what kind of life Ellie would have should she survive all of this. We were glad she was alive but sad for the horrible damage done to her brain. Now, it seems, God had other ideas.

She still needs much prayer for continued restoration of her brain. Also, they've inserted a drain in her head to relieve the fluid build-up, especially the blood from the aneurysm burst. They gave her a powerful blood thinner to break up the blood clots left over from the hemorrhage. The thinner is so powerful they almost never give it to children as they're not sure what it does to them. But it was determined that the pressure in her brain was becoming too great.

Please pray that the drain will do its job, that all of the blood from the aneurysm would leave her brain, and that her brain's natural fluid equilibrium would be restored. This way, she won't need a permanent drain placed in her skull which would bring with it a whole other set of problems..

Again, thank you so much for praying for us and our little daughter. I don't think this would have happened without the sort of prayer covering we've enjoyed. God would have been good regardless of the new MRI's revelations, but we're so thankful that He answered our prayers with a miracle today. Incredible! It is so thrilling to get good news.

As always, we or others in the know will keep you posted as news comes. God bless you!


Peter and Alana Lively

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