Sunday, September 6, 2009

Ellie Updates: PLEASE PRAY

Yesterday from Peter:
(though it seems like it's been much longer than that)

Dear Family and Friends,

Our precious 6 week old daughter, Ellie, has a serious medical problem and is currently hospitalized in the pediatric intensive care unit at Denver Children's Hospital. Early Wednesday morning, she started to screech inconsolably. She wouldn't eat, was very pale, started moving her eyes in a very panicked and unfocused manner, and (though, we didn't know it at the time) she had a few seizures. We took her to the hospital where it was discovered her skull and brain were full of fluid creating extreme pressure.

Many guesses were made as to what was happening. It was discovered, after a CAT scan that Ellie had had a major episode of bleeding into the right side of her brain. A later MRI and MRA revealed that the bleeding was caused by an aneurysm in the right cerebral artery. This aneurysm was present at birth and a weakness in the wall of the aneurysm caused the bleeding. The hemorrhage into Ellie's brain has resulted in some brain damage, probably permanently.

Ellie is currently not conscious and is at risk for another bleeding episode, which would probably be fatal. The doctors and nurses have been very kind and helpful. They are watching her closely and are exploring all possible avenues of treatment, but the outlook does not appear to be good at this time. One option is to send a probe up her artery that would place a titaniumEndovascular coil directly into the aneurysm hopefully stopping blood flow to it. The other option is to clip the artery effectively stopping all blood flow to that part of the brain. Both procedures are extremely risky, especially given her age and condition, but we don't have many options.They won't be done until Monday.

Three weeks ago she had to go to the hospital after showing similar issues, but it was never determined what was wrong. It was guessed that she had an infection of some sort. She got better and was released. We had her for a week believing things were returning to normal. Four days ago, Ellie was lying on her Baby Einstein mat smiling, happily watching her sister run everywhere. Feels likes months ago.

Please pray for Ellie. She needs a miracle. Thank you for your concern and your valued friendship and support.

Peter and Alana Lively

Tonight from Peter:
Hello Family and Friends,

Wanted to give everyone a quick update on Ellie. She's had a relatively good day, no major changes. She's been stable, almost like she's preparing for tomorrow, which could be a very big day.

We've all been anxiously awaiting the arrival of reportedly Dr. David Kumpe, a very well-respected professor of Radiology. Apparently, he is the expert when it comes to situations like Ellie's; there isn't anyone better. His clinical interests areStroke Therapy, Cerebral Aneurysms, Central Vascular Malformations; everything Ellie's dealing with. He hasn't been able to help until now because he's been on a trip. He'll be the one to operate on Ellie, either tomorrow or Tuesday.

Please pray that:
Ellie will continue to stay stable (which means no more seizures, good vitals, no bleeding, etc) so she can go into surgery as planned.
Dr. Kumpe can get caught up to speed on Ellie's condition. We've learned that this episode is very rare, someone getting an aneurysm this early in life and not be a preemie, which would usually be part of the reason. There may be 20 or 30 cases like it on record.
Dr. Kumpe would make the most appropriate decision on how to proceed. I had mentioned the titanium coil embyllism being placed directly into the aneurysm or a clip cutting off the affected artery entirely. I'd prefer the first option because it still gives Ellie a chance of saving the artery and, therefore, the right side of her brain which the artery feeds. However, Dr. Kumpe is the expert. His opinion will be huge.
The procedure, whichever one it is, will go well. Dr. Kompe will have the team he needs in place (which is complicated by the Labor Day weekend). Pray that Ellie survives, that it takes care of the aneurysm, and that her brain would begin a healing process.
As far as her brain, please do pray that it will fully heal either quickly or eventually. Most of the doctors here believe Ellie has probably suffered moderate to severe brain damage that will never heal, especially to the right side of the brain. I'm not ready to believe that yet. Please pray for a miracle.
Pray for Alana and I. If tomorrow is the day Ellie goes into surgery (it may be Tuesday because Dr. Kumpe might need more time) the Alana and I may need to make some difficult decisions about Ellie's treatment. We want them to do whatever it takes to save her life. That's our decision, which may mean she could survive but, prognosis-wise, battle long term brain related difficulties. Grappling with the possible ramifications adds another level of stress to a situation that's been nothing less than a nightmare. Depending upon the outcome of the procedure, we may have many decisions to make none of which will be easy or desired. We'll need wisdom, strength, and protection from the evil one who we think has been attacking us and our family severely in this.
The way our days have worked, generally, is that we wake up angry and in denial, we talk with the doctors and become discouraged, our family or friends come over and cheer us up, we see that not much has changed with Ellie (for the worse, anyway), and we feel a little better. This was especially true today. The start of the day was difficult, but then pastors Michael and Brenda Walker of Church in the City, and Alana's uncle Jim and Aunt Reenie, who are in ministry, prayed for us and Ellie. Alana and I both felt a peace afterwards that we hadn't had yet through this. Nothing had changed with Ellie, so we can't explain the peace, but it was there nonetheless. It must be from God.

We're so grateful to have all of you praying for us and Ellie. It's an incredible blessing. The magnitude of the support has been overwhelming. Thank you!

We'll let you all know how it goes.

Peter and Alana Lively

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