Recap and appeal for prayer

I'm sending this email to some of my friends in the FGBC. My hope is that in many gatherings on Sunday morning, folks will pray for Simon.

Simon is my 3 week old grandson. He is our 5th grandchild and the 3rd child of Dean and Summer Avey. He was born early but very healthy; a sweet little boy.

On Thursday of this week, he became suddenly ill. Dean and Summer took him to the local hospital and watched in horror as they soon they were coding and resuscitating Simon. It was terrifying. It drove us to our knees and we asked many friends to pray. They flew Simon to Lutheran Hospital in Ft Wayne where he needed resuscitation again. He strengthen somewhat and they flew him to Riley’s children’s hospital in Indianapolis.

At Riley’s he has stabilized but is still in critical condition. We don’t know what caused the illness. They are focusing on infection and metabolic possibilities. His heart is structurally sound but weak. His brain has not had major damage (bleeding etc) but we are waiting on an expert to read the x-rays. His lungs are not functioning fully. His Kidneys are not 100% but are improving. His liver is enlarged and has been damaged. With medication and constant monitoring, he is stable and hopefully his body is repairing itself. He made some quick improvement after the initial trauma but today things stayed pretty much the same.

Please pray for Simon. And for Dean and Summer, Tobi and Trey. This is very hard. Your prayer means more than you can imagine!

Doc Report

Doc Report

We just had a big report from the Docs. The first was from the an Epilepsy doc and Simon's Seizures appear to be stopped (with the medication) and he is pleased with this. They put a monitor on Simon so that they can see an seizures. There is some brain activity that they are watching but there is nothing definitely wrong .

Then we met with the supervising doctor (this place has lots of specialists and one supervising Doc). He broke it down in categories:

Heart: The structure of the heart is good (ie: no extra holes). His heart is generally weak. They will do another echo tomorrow or Monday. They are supporting the heart through meds to increase BP and to help the heart squeeze better.

Brain: They need a formal reading of the CT scan by a pediatric radiologist in order to see if there is brain damage. An MRI would help us see more. We cannot do the MRI because some of the NO support he is getting. Everything that they would need to do if there was damage is being done anyway. He did not see major brain damage (ie: bleeding) but did see some abnormalities and wants to wait for the expert to read the pictures.

Kidneys: The Kidneys are not 100 percent. Not unusual but kidneys usually recover. He is urinating and hopefully the Kidney will repair.

Respiration: The O2 and NO is helping and Simon is not breathing on his own. Hopefully as they take him off of the breathing support and NO he will repond.
He is using a fair amount of 02.

Liver: His liver enzymes are very high. It is enflamed. This could be due to a metabolic problem or due to the impact on his system.

Infection: is on 3 antibiotics. They have not started feeding yet to not
stress the stomach system. They are still waiting on test results for infection.

In general: The doc said "Simon is Critical but stable." He needs time to heal. Time is both our worst enemy (it's hard to wait) and our best friend. As long as Simon is not getting worse, his body is probably healing itself. They are trying to support his body to heal itself while they check out possible causes (infection and metabolic). They are also trying to monitor anything that might become longer-term damage but we will probably not know this for a long time yet.

Please continue to pray for Simon. And for Dean and Summer as they prepare forthe long-haul.

We are planning on bringing Tobi and Trey down tomorrow to see Summer and Dean. Hopefully it will be a good day for all.

God is good! Not that he always does what we want, but I don't know how we would have made it without faith that he is and he is in control.

Thanks for praying.

Quick update

Simon got through his CT scan ok. No report yet. We hope to hear from the supervising doc sometime soon.

We are pretty much in a waiting mode. Simon is sedated and paralyzed medically to help his systems relax and repair. We don't know what the seizures mean but other numbers continue to improve. His color looks good. Sometimes he manages a breath on his own.

Dean and Summer are tired and they miss Tobi and Trey. They stayed at the onsite McDonald house last night and don't know about tonight. I (grandpa) and Scott stayed at Brook's (my daugher) house north of Indy.

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Sent from my cell phone

Saturday Morning 2

Simon has had a few seizures this morning. This may have been from damage due to the lack of O2. They don't know if this will be a long-term problem or not. He gets CT scan soon.

He has urinated so his Kidney's are begininng to function.

Other numbers continue to improve.
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Saturday Morning

Simon did good through the night. Numbers continue to improve. They gave him a sponge bath. We had a good nights sleep. Thanks for praying.

I'm absolutely convinced we were locked in an incredible battle of prayer on Thursday night. It was terrifying! I can't express how grateful we are for those who joined in the battle.

Simon still has a long way to go and we don't know what caused it yet.

Please don't stop praying.
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Friday night prayer requests

Few more prayer requests through the evening:

Pray that Simon's kidney starts to function better. We would like to see a full diaper.

Pray that his liver would improve. Lots of things will work better when this happens.

Pray for some sleep for Dean, Summer and Grandpa.

Thanks
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Stuff

Some new prayer requests:

Simon's blood is not clotting like it should. This is making the insertion of outlets for taking blood challenging.

They are giving him nitric oxide to help his body receive O2.

They have him on medicine to paralyze him so that he relaxes and gets stronger. And it lessens the stress on his heart.

They checked his stomach (KUB) and it showed some swelling. But this is due to his liver not functioning at full strength. It is also causing some facial swelling. They didn't see any bowell problems.

They are going to wait to start the special feeding until he gets a little stronger. Possibly in the morning.

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Sent from my cell phone

Simon update

Good report.

The cardiologist did his echo cardiagram and Simon's heart is improving greatly. His heart was pumping @ 15 percent last night but is now at 45 - 50. Normal is around 60 percent. Heart size and function are good. They removed 2 of the 4 heart medicines. They believe he does not have congenital heart disease. This is very encouraging.

He was very acidotic when he first was admitted. His acid levels are now normal. The original high acid levels had alot to do with his reduced heart function.

They are checking for infection but it will take 2 days for tests. However, if it was an infection he would not have improved so quickly. His color and reaction to stimulous is greatly improved. There are some infections that cause the symptoms he had. They are the kind that cannot be treated but that the body will throw off with support.

Head scans did not show evidence of damage. They were not the highest quality scans, but the fact that he would be so alert if it were not for sedation indicates that the brain is ok.

They are starting some feeding with special stuff (in place of mom's milk) to deal with metabolic possibility. It has something do with with a possible inability to process fats.

They are still checking for metabolic causes. Tests for this take a long time to process (weeks) and is their main suspect. However, there are reasons to think this may not be a problem.

There does not appear to be any risk of returning to the dangerous life-threatening episodes that he had at KCH and Lutheran last night. As a matter of fact, Riley was surprised at how good he looked when he arrived given all he had been through.

We are hopeful. Keep praying.

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Sent from my cell phone

Simon arrived OK at Riley and is pretty stable. They are going with the assumption that he has a metabolic disease. Possibly Fatty Acid Oxidation Disease. This may have been an underlying condition that was manifest after an infection. His heart was functioning at only 15%. Hopefully this was just due to the short-term insult to his system. But there may have been long-term damage.

Pray that they he remains stable and improves. Pray that the figure out what is wrong. That there is no long term damage. For travel and living arrangements in Indy. That God is honored.

Thanks

Original Post on http://fgbc-world.blogspot.com/2006/09/please-pray-for-simon-tate-avey.html

A number of people were alerted during the night to pray for Simon Tate Avey, the three-week-old premature son of Dean and Summer Avey of Winona Lake, Indiana. Simon is the grandson of Fellowship Coordinator Tom Avey and his wife, Sandi.

The baby became ill during the night with very low temperature and vomiting and was rushed to Lutheran Hospital in Fort Wayne, Indiana. He was treated for infection and was being checked for heart and stomach causes. According to Tom Avey, “he had more dangerous moments when he first arrived.”

According to an update a 4:20 a.m. today, the doctors think it is a metabolic problem and were planning to airlift him to Riley Hospital in Indianapolis at 6 a.m. today. Tom said, “He came very close to not making it a couple of times. Please pray more.”

Dean and Summer Avey and their family have been living with Dean’s parents since their own Winona Lake home was destroyed by fire on July 6 of this year.