A Powerful Story From an ER Nurse

We received this email today from one of the ER nurses that worked with Simon when we first brought him to our local hospital when we had almost lost him. It has deeply touched us and we wanted to share this with all of those who have been so intently following this story and praying for Simon.
I want to warn you that this is not necessarily easy to ready.

Thanks,
Dean

Dear Aveys,

I didn't want to send this until I knew that Simon was home and doing well. That night in the KCH ER touched me deeply and I will carry its memory with me forever. One of the things that saddened me the most was that I could not connect with you, the family, and comfort you during one of the worst nights of your life. So this, now, is my gift to you.

With love,

A Young Nurse

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Friday, September 29, 2006

5:55 A.M.

Tonight I held a tiny scrap of humanity in my hands as he fought for his life. For a few moments I was his breath, filling his little lungs with oxygen, trying to mimic the rhythm of life which we take for granted. I've rarely felt so helpless. It never ceases to amaze me how tiny babies can be. I've held strapping ten-pounders, and helped care for preemies tiny enough to fit into my cupped hands; with each one I wonder at how life can be so perfectly captured and sustained in these little beings. They seem too fragile for this cold world. And this one...this one was one of the most beautiful little babies I've ever seen. So small, but so perfect. Ten fingers, ten toes. Smooth, creamy, translucent skin. A shock of soft, silky light brown hair covering his whole head. Button nose and pink little mouth. Wide grey-blue eyes. Unseeing eyes...fixed on a far-off point above the heads working frantically over him. Whenever we participate in a code, we try to do it right, do it well, save our patients, no matter who they are. But with pediatric codes, everything gets just a little more tense, a little more desperate. "Don't screw up now," our faces say to each other. "Do it faster, better...be perfect this time," says the edge in our voices as we bark out orders and vital signs to each other. "If any of us can work a miracle, let it be now. Please, God, let it be now." But we can't. We wear the uniforms, we take the classes, we work the protocols, we act like we know what to do...but we are the same as the frail, fallible humans we try to save and mend every day. We know some tricks to help keep the spark of life smoldering a little longer, to help kindle it back into flame; but in the end we are just like anyone else, whispering, "Come on, baby, breathe. Get warm, baby. Wake up, baby. Come back, baby." Come back. It's not your time yet. It can't be. In your tiny form I see the unwritten potential of a thousand different life stories. I want to see you grow up to be as tall and handsome as your father, to have your mother's kind eyes and laughing face. I want to know how you will make this world better. I want you to live and love and weave a bright thread into the fabric of time's story. Come back, baby. Can't you hear your mommy and daddy calling you? Their low, broken voices reach out, trying to comfort you in that grey, quiet place where your little soul hangs in limbo, trying to tell you how much they love you, how much they've come to need and want you in the few short weeks of your life. Please come back...please, God, let him come back. An hour later, he was airlifted to another hospital, his spark flickering, barely alight. Our job was done, and silence descended on the room were we had fought for him as best we could. As we soberly returned to our other patients, we silently wondered if we could have done any more, if we had done enough to save him. Often we never find out after they leave our hospital. We see death on a daily basis, but things like this just don't get routine. Several of the ER staff had to leave the floor for a few minutes and came back red-eyed and shaken. I was almost ashamed that I could not cry, could not give vent to the dull sad ache I felt. But tears rarely help when you have a job to get done. When I mentioned my stoicism to one of my coworkers later, she just smiled. "A lot of times, you don't cry. Even when you go home, you don't cry. But mark my words, you won't sleep." And she was right. Even after being up for almost twenty-four hours straight, I am still awake, still in that room, with his hand curled around my finger, helping him breathe. Hang on, baby. Hang on.

Update on Madison

Some have asked about how Madison is doing. She is the 9 month-old at Riley's that Dean and Summer learned about through our churches prayer email chain. Here is a update:

God is working and we give Him all the praise --

Randy called after talking to his sister-in-law and little Madison is showing some signs of improvement -- her blood pressure is up, which is a good thing, her kidneys are starting to work again and she has been breathing on her own a little bit --- God is able to perform a miracle here and we are thankful for what He has done already. Keep up the hard work of prayer, please.

A good weekend

We had a great first weekend home with the family. Simon did great except for a few times when he threw-up but I think it was because the doctors were a bit too agressive with his feeding amounts and it had to do with his positioning at home compared to the hospital (the hospitals beds are inclined a little). If he doesnt eat well then he could possibly run into problems again so we have to keep an eye on him (as usual.)
I took the kids to meet with our church on Sunday. Go figure... when getting Tobi ready to leave Sunday morning I found a few tuffs of hair near the base of her bed. I come to find out that she had found some play scisors and was trying a new look. Summer tried the best she could to cover it up but there's only so much you can do when Tobi is bald in a few spots.
It was great being with our church on Sunday. Because of usual kids stuff I was a little late and though I could sneak in the back and grab a seat without disturbing anyone but right away I got three hugs. At the end of the sermon pastor Dan mentioned to everyone that I snuck (past tense of sneak) in and gave an update on Simon. I couldnt say much at the time becaue the fact that people were still concerned about my family meant a great deal to me and any words that my mouth tried to form came out as jibberish as I tried to hold the tears back. It is incredibly encouraging to hear that everyone has continued to pray for Simon and our family even after 4 weeks.
I know its easy to pray for someone or be concerned once but to remember to continually pray is something all together different. I guess this is how the church is different from the most of the world. Everyone we tell our story to on the street (for one reason or another) ends up feeling concerned for a few minutes but I know it passes as no one likes to think about depressing things. The body of Christ is so different and I think that can be seen in how quickly our story has spread (see the counter at the bottom on the page at 5789 hits in 3 weeks) and how so many people continue to pray and remain concerned about us.

Here is a little snipet I got from Wikipedia:

• Empathetic but not sympathetic, by internally experiencing another's feeling but not being motivated to alleviating action as a result (eg, a lust killer who is aroused by his victim's fear, or a con artist who knows how his mark feels but uses it to manipulate not support).
• Sympathetic but not empathetic by realising (perhaps cognitively) someone is upset and wanting to alleviate that, but not experiencing their sense of upset directly and internally as an emotional state within themselves (eg, a person at a help desk who sees another in distress, does not feel distress themselves, but tries to find what is wrong and help them anyway).

I guess what moved me so much this weekend was seeing a whole building full of people who were trully Sympathetic and Empathetic. These are the acts of selflessness that have been encouraging beyond words to me and my family.

Thank you,
Dean

Day 3 at home

Simon continues to do well. Last evening he spit up some of his formula but Dean and Summer think it was just normal baby spit-up and not anything to worry about. It's going to be a constant battle to react properly to Simon's physical needs.

They took him to the local pediatric doc and Simon is gaining weight nicely. The doctors office had Summer bring Simon into a back door to a sterile exam room to keep him away from sick children.

Simon feeds every 3 hours, first a little orally so he can practice swallowing and then through the NG tube. The good news is that he can sleep and eat at the same time.

Tobi and Trey love to interract with Simon. We have to be careful to make sure their hands are sterilized. Hopefully, we are being more careful that is needed. But it is worth it for Simon's sake.

[Posted from my cell phone]

Doing well!

So far, things have been going smoothly for Simon at home. They gave Dean and Summer a monitor for heart and breathing. This not only alerts us to any stress Simon experiences but gives us all an ability to relax a little. Summer has to feed Simon every 3 hours through the NG tube. Dean is catching up at work and some of the pressure is off of Sandi and me Tobi and Trey are really appreciating having Mom and Dad around and in charge.

I found an interesting Bible passage from the book of Joshua this morning: Now when Joshua was near Jericho, he looked up and saw a man standing in front of him with a drawn sword in his hand. Joshua went up to him and asked, "Are you for us or for our enemies?" "Neither," he replied, "but as commander of the army of the LORD I have now come." Then Joshua fell facedown to the ground in reverence, and asked him, "What message does my Lord have for his servant?" The commander of the LORD’s army replied, "Take off your sandals, for the place where you are standing is holy." And Joshua did so.

We asked God to preserve Simon and He has answered our prayers. It is tempting to think we are somehow favored above others who have not had the same answers to their prayers. This is not a temptation we should entertain. We only know this: God is in control. We are still alive. So is Simon. It's time to worship Him.

Simon is Home!

"From the lips of children and infants you have ordained praise..." (Psalm 8:2a)

Simon just arrived home! We can only thank God for getting us this far. May Simon's very existence glorify Him!

Thanks so much for praying. But please continue to pray for Simon's protection and for daily wisdom for us.

Tom

Tuesday and Wednesday Update

I am sorry, I thought I had emailed an update to the blog but it never went through.

Tuesday Update
They didn't do the sleep study last night but hope to get it scheduled for tonight. We were told that whatever the results were of the test it will not effect the discharge date. If they found he wasn't sleeping well they would just train us on monitoring equipment and send us home.

Wednesday Update
He did have his sleep study last night be we are still awaiting results from the doctors on that. He came back with his hair all gooey so I am guessing they had to stick things on his head. I will be glad to see him without all the wires and hopefully without the NG tube down his nose.
He had two 6 second episodes of SVT last night but he broke out of them all by himself so the doctors aren't worried about that.
The doctors told us to pack our bags but not load them in the car yet. Thats their way of saying they are pretty sure he will go home today but if he doesn't, for some unforeseen reason, they don't want us blaming them :)

Thanks,
Dean

Test results from muscle biopsy

If you might remember, Simon had a muscle biopsy last Monday. This was in hopes of trying to figure out what type of metabolic disease he might have. We talked to the Metabologist today after they had a chance to review part of the results.
It seems as though Simon has enlarged mitochondrial and this is even further proof of pyruvate carboxylase deficiency. In short the problem is with his bodies ability to create energy. It cant turn fat into energy and when under stress it can cause the problems that brought him in here in the first place (heart, lungs, liver and more shutting down.) This can also cause some of the cases of SVT and elevated breathing rate that we have seen recently. To help couteract this deficiency they have Simon on a special formula which will help but it means he will need to stay off of breast milk.
The good part is that it will not be likely that he will have another crash as bad as the one that put him here. They are hopeful in that he has been responding to many things just fine and his motor and muscle skills seem normal. There is no treatment to this as it is a genetic disease but we can help to compensate for where the genes leave off via diet. We pray that as he grows his body will be able to produce the energey it needs so that he can live a normal life.
They are still awaiting results from the skin biopsy which might give us a little more information.
They are also want to do a sleep study which will either be tonight or tomorrow night which means a delayed release. I think we will stop telling everyone when we expect him to be discharged because the doctors keep making liars of us:)

Thanks,
Dean

Sunday News

The great news is that Simon went 48 hours without an episode of SVT. They said he could go home tomorrow morning.
The bad news is that he had a minor SVT episode about an hour ago. It wasnt major because we were able to stimulate him enough to get him to break out of it but I dont know what this will mean with his expected release date. This all happened late at night so we wont be able to find anything out till the morning.
I will need to head back home tomorrow if we can take Simon home or now. Fortunately I was able to spend a majority of last week here with Summer and Simon but we have too many things to attent to back in Winona Lake.

Thanks,
Dean

Great Visit

Sandi and I visited Simon last night in the Cariac unit. Apparently he has had no more SVT episodes. I'm not sure when they will let him come home but I suspect that if nothing new develops, it will be soon.

Simon looks really good. You would never know that he has a genetic dissorder that can be life threatening if not caught early. I'm sure that Dean and Summer are looking forward to getting him home but with considerable concern that they can care for Simon. I guess it's a matter of confidence. It will come in time, but not easily.

I'm on my way to Maryland for a pastors retreat. I really look forward to being at a retreat with friends for a few days. Many have come by my office or stopped me to pray with me and for Simon. The Body of Christ is a wonderful thing!

Tom

[Posted from my cell phone]

Madison

I just spoke with the heaston family and the emergency surgery from last night didn't find or improve anything. She is still in critical condition and nothing is improving. They are afraid that her kidneys will give out soon ontop of all other issues.

Their family is now here to support Nick and Amanda. There doesn't seem to be much hope that there is anything the doctors can do.

Dean

No news

This is from Tom,

Nothing new today as far as I know. We are on our way to Indy with Tobi and Trey so Dean and Summer can spend the weekend with their family.

Dean just sent me this email. Simon is doing fine but Dean and Summer had an opportunity to meet another young couple facing an emergency need for their daughter...

I was able to come down to see this family and their daughter is not in good shape. They are afraid that she might have a twist in her intestines or a part of it might be dead. They are rushing her up to emergency surgery as that seems to be her only hope.
Madison is 9 months old and has been having problems since birth. They sent her home last week because she seemed stable but today she was unresponsive and has a high temperature. Her parents have been to fort wayne and down here to indy all within a day.

Please pray that God will heal her body and give her parents comfort.

Thanks
Dean



[Posted from my cell phone]

Recent Video

I know that the videos help everyone see the progress that Simon is making. He has recently started to smile and I thought I would share this rare moment with everyone. Simon Smiling!

Thursday Morning

Simon had a good night. No more SVT episodes . They are hoping that the Beta Blocker does it's job of getting his heart under control.

Pray that he gets to come home, when he is ready.

Another SVT Episode

Simon had his second SVT episode today at around 5:45. They gave him the medicine that will stop the elevated heart rate and that fixed it again. They upgraded him to a Beta blocker medication that does an even better job of keeping these SVT episodes from happening.

I met with the Metabologist today and he is worried that something in the feeding is causing the problems but after further discussion with the Cardiologist it seems as though that is unlikely. SVT is caused by pathways in the heart that short circuit the normal electrical signals that cause the heart to beat. Many times this is just something that developing hearts go through and most cases fix themselves before the age of 5. There is no danger in these episodes unless they continue for close to 24 hours at which point the heart tires out.

After more pushing we were able to convince the doctors to keep Simon in the hospital for a few more days to observe his current situation and to ensure that the proper medications are applied.

Simon is doing great... The nurses love taking him through the hospital when Summer and I have to leave. Everyone loves coming in to see his head of hair.

Thanks again for your prayers,
Dean

Still working on Heart Meds

Simon had another heart-racing episode today. They are going to keep him at Riley's for a few more days to get this under control. Dean says that Simon is alert, bright-eyed, and getting alot of attention from the hospital staff.

Pray for patience.

Tom

Heart SVT

Simon had another episode like last night where his heart rate increased (medical term is SVT) until they gave him some medication (adenisen (sp?)) to regulate it. We were told that one episode is not uncommon but after todays episode they will need to keep an eye on it. They feel confident that they can use a daily medication to regulate his problem but need to make sure they get the dosage correct. Our trip home will be delayed a few more days.

They say there is no danger when his heart rate spikes like that unless it goes on for close to a full day. But this is something they want to get under control.

God, it seems like the problems never end and the future will be full of worrying. Please heal our son and give us strength to make it through the rough times.

Dean

Tuesday Update

We just heard from the doctors and they have decided that his heart rate increase from last night was unrelated to everything else that has been going on. They type of heart problems he was having last night was non uncommon and his reaction to it was almost unnoticeable. Usually when someone heart rate jumps like that they begin to sweat and get clammy and their extremities start getting cool. He showed none of those symptoms and was actually quite alert through the whole process. The cause of the rate increase is due to the top half of the heart beating fast while the bottom does not receive those signals; his heart was out of sync. The drug they gave him put it back in sync.

He did great over night in the Cardiac center as they kept an eye on him and they are still under the impression that he is ready to go home. Summer and I are a little hesitant due to everything that has been going on but I have constantly quizzed the doctors to ensure they know everything that has happened in the past few weeks for him. I have been warned that at times the many doctors that attend to Simon can have difficult communicating well. We want to make sure that this is a decision that all doctors that have worked on him are aware of and confer with.
We have decided to go ahead with taking him since they have assured us that he has been in good health for the past week or so. Our goal is to finish up the training we need to know about how to care for him and take him home tomorrow before lunch.

We are a little nervous about taking him home because any little thing could effect him and we would have to drive him back down to Indy to be treated again. We are also excited to have him back at our quasi home without all the wires. Please pray that his body remains healthy so that we don’t have to go through all this again.

On a related note: some of you know that we had a house fire about 3 months ago and due to many things (including Simons emergency) the whole process has been delayed. One of our concerns now is rebuilding it so it will be a healthy place for Simon. I just pray that that will not be an expensive or difficult thing to do and that the process will progress quickly.


Dean

No News

11:20 am

No news on Simon yet. Dean and Summer had a late night and are heading up to his room. Hopefully they can meet with a Doc.

More update

Simon's heart rate is still under control. They are going to move him to a cardiac unit so they can watch him better.

Please pray for Dean and Summer. This has been a great dissapointment.

Tom

Quick update

8:20 pm

Brook just called from the hospital and they were able to get his heart rate back down to normal. Thanks for praying. Simon was to come home tomorrow. Pray for wisdom as they re-evaluate. Praise God that he did not come home today like they had considered.

Tom

Please pray again

8:00 PM

Dean and Summer returned from Dinner to find many doctors attending to Simon. His heart rate was very high. We don't know much more at this point.

If you are reading this blog on Monday evening, please stop and pray for Simon, and Dean and Summer.

Tom

Coming Home Tomorrow

Simon is coming home tomorrow! He responded to the surgery very well. They actually would let him come home today, however, Dean and Summer are not ready yet. They need to make arrangements and get some more practice with the NG tube and with giving Simon his meds.

Dean finally was able to talk with the Metabolic Doc and he said that the name of the disease is pyruvate carboxylase deficiency not pyruvate decarboxylase deficiency. Apparently they are similar deseases.

They have more testing to do, but it looks like it is going to be a matter of getting Simon to the hospital every time he gets sick. As long as they can get an IV and food into him, there should not be the risk or the damage of this first episode.

Good news! Praise God!

Biopsy is Done

Simon came through the biopsy well. He is back in his bed, alert and playing with his toys. Dean will drive back to Winona this afternoon.

Thanks for praying.

Monday morning prayer

If you read this on Monday morning, please pray for Simon's biopsy surgery to happen at 9:00 this morning. We are glad that this can be done early in the week in the hopes that he will recover quickly and can come home this weekend. He is getting a skin and muscle biopsy to help further diagnose his condition.

Thanks for praying.

[Posted from my cell phone]

Diagnosis

We just heard from the Metabolic Doc. They have made some progress in narrowing down the cause.

They believe that Simon has some sort of genetic disease that causes his cells to produce too much lactic acid in the Metabolic process. The tech name for this catagory of disease is pyruvate decarboxylase deficiency. There are two likely specific diseases that are the cause and both are very rare. They explain why appeared so healthy and got so sick quickly.

The result will likely be that we will have to watch for signs of stress (infection etc) and be prepared to get him help quickly. They are going to repeat some of the blood and urine tests as well as do a muscle and skin biopsy. Surgery is scheduled for Monday for the biopsy's.

Treatment will be mostly a matter of managing the condition, being familiar with early warning signs and providing help quickly (probably hospital visits) when he get's sick. There may someday be some gene therapies available but not yet.

There was some brain damage effecting the parts that coordinate his swallowing. So they are leaving in the NG (nasal feeding tube) and are considering a G tube (stomach tube) which would mean surgery. Dean and Summer are hoping to avoid this proceddure. He is now getting most of his feeding through the tube and a small amount by mouth so help him practice swallowing.

Pray that his brain repairs itself and he can feed normally.
Pray that they determine the specifis metabolic cause and provide a good management plan.
Pray that Simon handles the stress of surgery on Monday.
Pray that we can bring him home soon... but not too soon.

Thanks

Tom

[Posted from my cell phone]

Friday Update

So far we have been able to deduce that there are only two remaining areas that Simon still needs assistance in. One is his eating, they did some tests yesterday that showed that he is aspirating when he eats from a bottle. This means that he is having problems closing off his lungs when he drinks which means it could get into his lungs and cause many things including pnumonia. This was a big discouragment to Summer because it means he will need to keep his NG tube in for 6 more weeks at which point we will test him again to see if he is ready to eat on his own. A NG tube is a tube that goes from his nose into his stomache to make sure he gets the nutrients he needs. If at the end of the 6 weeks he is still having problems they might need to put in a G tube which is surgically installed and goes into his stomache from outside his belly. We are praying that his eating mechanisms will grow stong and heal before the 6 weeks come so that he can begin eating on his own.

The 2nd issue is the seizures he was having before. They have him on a med that is preventing the seizures but they would like to wean him off of them. They did an EEG today and it showed some activity that if he were off the med would probably be a seizure. As they said before, some of the cavities in this brain (some have bigger cavities than normal;) have some hemoraging, nothing big but enough to irritate his brain and cause seizures. They are confident that in time it will absorb back into his system but till then he will remain on the med. They are saying that he will stay on it for something like a year and they will do another MRI in 6 months to see how much the hemoraging has been absorbed into his system.

They said that we could probably take him home sometime soon, possibly this weekend. We have decided to do the muscle biopsy this week and wont take him home till after that is completed and he has recovered (from what I hear it is a minimly invasive surgery).

Summer and I had a great time on the town last night and she spent most of this morning in a spa. By the time I picked her up she seemed to melt into the car seat. I could tell that it was a much needed massage and time to relax.

The kids are on their way down right now and we hope to have some fun tonight as a family. Summers mom is on her way down too and I have begun stacking the tissue boxes in Simons room already.

I think that is everything but I am sure I will be quickly notified by Summer if I have missed anything.

Thanks,
Dean

Thursday Update

Yesterday Summer told me that Simon took a bottle and ate all of it. They day before he only did half. I hope he continues eating well from the bottle so they can take the NG tube out of his nose. I can't imagine what that must feel like.
The doctors still want to do the biopsy but we are a little unsure why if his heart is doing so well. The biopsy was originally meant to give us an idea of how the muscle in the heart is doing. I am heading down to Rileys today and hope to get a chance to quiz the doctors myself. Again, our greatest concern is the general anesthetic.
They are going to do an EEG today to take a look at his brain activity. If it looks consistent and normal then they will begin to wean him off of the anti-seizure medication (his only remaining daily medication.) Not sure yet when they are planning to do the MRI again.
Tomorrow is Summer's birthday so I am heading down tonight to take her out on the town. The family is going down tomorrow for a party and celebration. It will be nice to celebrate Summer's Birthday and also Simon's great recovery with everyone. Summer's mom (Haley) has been watching our kids for the past two days and will be taking them down to Indy tomorrow. This will be the first time Haley has seen Simon outside of pictures and video. I expect to go through a few boxes of tissues the first hour she sees him and hopefully the tears of joy will begin to dissipate before we run out of boxes:)

Dean

New Video

Here is some footage from yesterday. They finally got some clothes on him!!
New Simon Video
You will see the extra tape they had to put on his NG (not sure what it stands for) tube because he kept pulling it out. Hopefully they will be able to take that out soon too!

Move out of the PICU

They moved Simon out of the ICU today and into a regular room in the hospital. They have also decided removed one more of his remaining two IV's and probably some of the best news is that he has begun to bottle feed. The doctors have decided to begin mixing the formula with breast milk in hopes that he can continue to break down the proteins and turn it into energy (an inability to do this could possibly be one of the causes of all his troubles). The doctors said they will be looking for him to remain active, see increased tension in his movements (that means muscle growth), and weight gain. If we can continue to see those things then it means he is properly breaking down his food.

I know Summer is excited to be able to bottle feed him and it's even better if he can digest the breast milk because that means she will be able to nurse him when things continue to improve (I think most moms know how important nursing is.) It is comforting for me to know that a majority of his day is now spent in Summers arms, close to the way things were before all this started.

The doctors still don’t know the cause and I am uncertain if they ever will, though I am hopeful. I can’t believe that we are at this point, but we are beginning to start thinking about and asking the doctors when we can take him home. Hopefully we will be able to bring him home and begin doing much of the diagnosing on an outpatient basis. We will wait and see.

Again, it’s amazing to think that almost two week ago I wasn’t sure if I would ever see my son alive again. The day after I was thanking God that he was alive, I knew God could do a miracle and heal him in a heartbeat but was also trying to be realistic and prepare myself and our family for the long haul as Simon began to recover. I knew that he could have been terribly harmed and possibly never recover (for a short time we were contemplating renting a house down in Indy or buying) or suffer for the rest of his life. Now we are at the point where it seems as though he has recovered from all major issues and we can begin planning on taking him home. What an answer to prayers.


I think most people have seen Princess Bride. I remember the part when they were talking about the pit of despair. In the movie it was a place where a very pale man with a deep voice tortured someone in a comical way (hard to imagine if you haven't seen the movie). In my mind I think of a place of solitude, dark, lonely, and hopeless. September 28th, 2006 was my day in the pit of despair. It was the day that one of the most precious things in my life was being destroyed and taken away and I was helpless to do anything, I felt alone and though I knew God could do great things I must admit that I didn’t have much hope either. In the two months prior to 9/28/2006 my family has been through allot, the most notable event was our house fire where we lost almost everything. Though those events were difficult and by no means easy, they were things that I could work hard to resolve and continue to protect and provide for my family. The night of 9/28 I had no power at all. There was nothing I could do to affect the outcome of that situation, I could do nothing to save my sons life, and I was helpless. The only person I could turn to was Jesus Christ. He was and is my family's only source of hope. We turned to Him as many others did and pleaded for Him to save my sons life and He did. We are all helpless to save our own lives, but incredibly enough we do have someone who can be our Hope and Savior.

I know that many people have been reading this blog and have been continually and habitually praying and thinking of Simon and my family. Some of you might not have been through the same experiences that my family has gone though in the past few months but many of you might feel the same hopelessness and helplessness in life. To those of you who don’t already know Him, I would like to introduce you to the One who saved my son Simon's life. He is the One who gave me hope in my pit of despair; He is the One who gives me reason to live. If you want to know Him, please email me and I can send you my phone number so I can tell you about how Jesus has saved my life.

In case I haven’t said it enough I would thank all of you for your prayers and support the past two weeks or more. Some of you I know, some of you I will never have the chance to meet but to all of you I want to say Thank You!

Dean Avey
Dean@RedwoodIT.com

PS. It is Summers birthday on the 13th (this Friday). If you know her I am sure she would enjoy a note from you in the comments section.

God is answering prayers

By Dean

I just received word from Summer who is with Simon right now. As stated in the previous post we have been uncertain about a biopsy they wanted to do on Simon. Summer and I were concerned that we did not have enough information about Simons heart which was the only remaining issue and the only remaining part the doctors were concerned about (besides the cause of all of this.) We wanted to hold off on the biopsy until we had a recent Echo done on his heart to tell us where it is. I talked to the Cardiologist this morning before I left and he said that in most cases the heart does not repair itself quickly and sometimes will not return to full functionality at all.
Simon had an Echo this morning and we just received word that his heart is at close to 70% functional (average is 60% or higher.) Last Thursday it was at 15%, last Friday it was 45-50% and the last scan was at almost 40%.
The Doctors are a little unsure what to do next. The Cardiologist has only seen improvements like this a few times in his whole career. They are putting the biopsy on hold and are trying to figure out what to do next because of how unexpected this recovery is.
Summer was in the room with the Metabologist and the Cardiologist as they were discussing the unexplained recovery of our son's heart. She overheard the Metabologist ask the Cardiologist if he was a believer, and I am unsure where the conversation went from there. I know these amazing events of the past 1 1/2 weeks was due to God amazing work in our son's life but it is even greater to see the doctors begin to recognize his marvelous work in all of this.

Part of me wants to know the exact cause of what happened so that we can take measures to prevent it again in the future, at which point I pray for wisdom for the Doctors.
Part of me wants to believe that through a miracle God saved Simon and us from a terrible event, at which point I praise God for this miracle and continue to pray for further recovery for my son, knowing that we will never know the cause.

It is great to spend time with Simon. He is pretty much back to normal. He started crying last night which is hard to hear but always good news as he can let us know how he is feeling. He isn’t very loud though because his vocal cords need to heal from the tubes.
They will be moving him out of the ICU as soon as they can find a room elsewhere in the hospital. This is great news!!!

Praise God for keeping my son alive and healing his body! Thanks to all of you have prayed for him. God, continue to heal Simons little body and thank you for how you have provided for my family and continued to give us more than we deserve. Thank you for protecting my family when I was unable to. You are our Father, you are our Comforter and the Great Physician.

Quick Monday report:

They did the Echo Cardiogram this morning. Hopefully the results will come this evening. They are looking for a bed to move Simon out of ICU. And they have begun to change his feeding formula to some more substantial.

Dean is on his way home (to Winona). We continue to pray that Simon's heart will strengthen.

Tom

[Posted from my cell phone]

Dear God,

Father, I want to thank you for the incredible joy of holding my Grandson last night.  He looked great.  It felt amazing.

Just over a week ago, we fell on our knees before you in desperation as we watched frantic doctors and nurses work over a small, lifeless, pale grey body.  We called on our friends to join us in emergency prayer.  It was a battle.  But it was also a place of strange and amazing comfort as we poured out our hearts to you.  I don't remember everything we said to you.  But it was void of all pretense and made-up religion.  It was children, crawling up into the lap of their heavenly father, pleading for help.  Thank you for your hands of comfort. 

And thank you for answers.  As I look at this blog, I am amazed: recovery, breathing, kidneys, liver, brain, Simon's color,  Simon is awake!  And then there is the McDonalds house, some great family reunions with Tobi and Trey, amazing friends who have been praying for us and leaving notes of encouragement.  Words cannot express the sense of the body of Christ coming around us in prayer for Simon.  We have experienced what is always true for all of us all the time: we need God, we need each other.

Father, I feel like we have one more urgent prayer.  I'm sure there will be many more but this one feels like the finale of an incredible story.  Simon's heart is not working like it should.  I don't know what it means for an infant to only have low heart function but it does not sound good.  On Monday they do an Echo Cardiogram.  We pray that it shows the heart is strengthening.

I guess I do have another prayer request.  We have met many people on this journey.  I know they have watched us come together and pray.  100's of folks are checking this blog often to pray for Simon.  Somehow, you are using Simon to teach us all something about you.  Keep our hearts open to you.

Saturday update: Family Reunion

This is from Tom...

Dean and Summer, Tobi and Trey are spending the day together in Indy (at the zoo). Sandi and I are keeping Simon company and spending some time together.

Last night Tobi and Trey visited with Simon and it went very well. I think this was an important step for Tobi.

They took all O2 off of Simon early this morning. Dopomine is off also. He appears to be doing very well. He still is on seizure medication. But he appears to be doing well in this area and hopefully the NeuroDocs will take him off of this soon.

We still have the questions about the cause of all of this and the strength of his heart. They want to take a sample of his leg muscle to see if there is a metabolic problem with his muscles. This would account for the heart situation an help them determine treatment. However, it means Simon goes under anesthetic and the stress that come with this. They scheduled an Echo Cardiogram for Monday and Dean and Summer are waiting on the report from the latest Echo Cardiagram to see if there is any improvement before making a decision.

Please pray for Dean and Summer as they make this decision. The proceedure is scheduled for Monday but they have not given their consent yet.

He had his infant screening done (for the 3rd time). It doesn't indicate that there were any problems that should have been caught earlier. So we are still looking for a metabolic cause. Pray for the Metabolic Specialist that he finds the problem and treatment soon.

[Posted from my cell phone]

Friday Update

The doctors would like to do some tests on his muscles to see if they are having problems burning fat. They think that this might be what caused his heart to have problems since it is just a big muscle. They want to perform a minor surgery on his leg to take a sample of his leg muscle but we are hesitant due to the trauma he has been through and unsure of the effects anesthesia on his recovering body. We are praying for some wisdom in this area.
They had put Simon back on Dopamine yesterday to help his heart out a little when the tests came back at 35% for his heart functionality. They hope to get him off of that today as we are awaiting his Echo from yesterday.
They put an arterial line in his arm when he first got here last week and they hope to remove that today which means one less cord or line on him.
Thankfully we got a room in the long term Ronald McDonald house. This means we dont have to pack up and move out everyday then move back in at night. The long term place is great and big enough for us to have our kids stay with us. This is a great answer to prayer no only due to the convenience but we have heard that it can take 4 weeks to get in.

Our kids and my parents are coming out today to spend the weekend with us. Actually we are spending the weekend with the kida and my mom need the weekend off so she will be spending the time with Simon.

Thanks,
Dean

WOW!

Words cannot express what this video conveys.
HERE
Praise God!

Word about Metabolic test

We just talked to a few of the doctors one being the Metabolic specialist. The newborn screen came back negative which means that he is not having problems breaking down a type of fat which can effect his metabolism. They are still waiting for the more specific test to come back which will give us a better idea of which metabolic area he might be having problems.

They are concerned because his echo cardiogram this morning came back at 35% which means it has gone down a little since he first got here. This could be due to a metabolic problem that is causing his heart to not work at 100% which they are continuing to look at. It could also be due to the fact that he has been taken off of so many artificial support devices in such a short ammount of time. His heart medicines were completely removed but now that put one back on and his lungs have recently had to do alot of work. All of these changes can effec the heart for a short while. We are praying that this number will begin to rise as he is supporting himself a majority of the time.

Dean

MRI News

I (Dean) made it down here to Indy last night. I found out that Simon was becoming more responsive and I needed to get a chance to see and talk to him myself. Fortunately Summer was able to watch Lost from the room while I was on my way down.

Last night was incredible. It was the first time I got to see Simons eyes since Thursday night when all this started. He was looking at Summer and I for a full 15 minutes. We gave him a nook and he started sucking away at it which is a good sign. After a while he got tired and went back to sleep.

It’s amazing to be looking into the eyes of my son who, on Thursday night, I wasn’t sure if I would ever see alive again. Sometimes you aren’t sure if God will answer your prayers, but my only prayer on Thursday night was for God to keep my son alive. He answered my prayers and the prayers of so many others.

This morning they did another EEG and his brain activity is looking more normal. They didn’t see any seizures and other things looked more consistent. They think this is because he is being weaned off the sedatives.

We got a chance to then talk to the neurology team this morning. They explained to us that they found a little blood mixed in with the spinal fluid in some of the spaces in his brain. It wasn’t a lot but they said blood is an irritant to the brain and can cause seizures. This can more than likely originate from the trauma Thursday night. Usually the blood is absorbed and goes away but they will continue to monitor it. The good part is that the rest of the scan looks normal. No damage to the brain, no bleeding, and nothing that leads them to believe that his mental capacity will be limited in any way.

Yesterday they took him off the ventilator and put him on a nasal cannula. The cannula did not provide enough oxygen for him and he was working too hard to breathe so they upgraded him to a CPAP which is more forceful. He was on that all last night and this morning they moved him back onto the cannula in hopes that his oxygen and CO2 levels will remain steady.

Thank you all for your prayers and support,
Dean Avey

Day one breathing...

So far Simon has doing fairly well at breathing on his own. They had reduced the O2 suppliment but had to bump it back up a little. He developed a little fluid in his lungs so they gave him some medicine to help. That medicine caused hiis bp to drop a little so they are giving him some "volumn" in his blood to help. Hopefully, all this is temporary.

We still have not heard from the neurologist after the MRI. Summer is watching Oprah in the room so at least some things have returned to normal.

Simon has been sleeping most of the day. Once in a while we see some open eyes but not for long.

He has come incredibly far in less than a week. Please pray with us for continued improvement and for answers to the many questions that remain.

I'm heading home tonight. Dean is heading here. We'll try to keep updates going but they probably will not be as often. Please continue to pray for Simon.

[Posted from my cell phone]

It's out!

They took the breathing tube out and he is doing great.

Looking into Simon's eyes

Simon is waking up and breathing on his own!

They took him off of the major sedative and put the breather is some sort of an assist mode so that Simon's eyes are beginning to open and while he is still dazed, it is sooooo good to look into those eyes and see him breath on his own.

They just decided to remove his breathing tube. His last echo cardiogram show heart functioning at 35-40 percent which is a slight reduction. Howeve, this is after they removed some heart meds that help with the pumping. They will give him some new heart med in his stomach soon to bring that back up.

We hope to hear from the MRI test today sometime.

Thank you for praying. And thank God for this special gift.



[Posted from my cell phone]

It looks like tomorrow may be a big day:

They are telling Summer that they may be able to take out the breathing tube tomorrow. This means they will have to un-sedate him somewhat and Summer will be able to hold Simon. Earlier, they took off the EEG with all the taped up leads on his head so he looks much better.

They did the MRI today and he did good. He was a little chilled when he returned but has since warmed up nicely. We should hear about the report from the MRI tomorrow.

With all this going on, Dean is going to try to return tomorrow. Summer is at McDonald house (on-site) tonight. I had a great visit with a good friend today. It was great!

Please continue to pray:
that the breathing tube removal goes ok.
for no brain damage.
for Deans travel back to Indy tomorrow.
that there is no heart damage.
that all the other good news (kidney, liver etc) stays good.
that God is honored.

[Posted from my cell phone]

MRI Done

Simon's MRI is done. It appears that he did OK. Now we wait on the report.

Tuesday morning report

Simon came off the last heart med this morning and his numbers are holding (bp and heart rate). They reduced O2 by 5 percent. He is off of all antibiotics. Blood tests ruled out bacterial infection. We are not sure about viral infections yet. They started a special formula feeding into his stomach last night and today they increased the amount. His liver-enzyme count has dropped some more.

An MRI is scheduled for 4:30.

Dean is heading home today for work. Tobi and Trey are back home and into their daily routine with Grandma. Summer will stay with Simon while I get some work done from the hospital. She has some plans to redecorate the hospital room (ie: pictures of Simon).

[Posted from my cell phone]

Late Night Visit

We are making a late night visit to Simon. It's good to see his good color and beautiful face even if he cannot respond.

Simon is totally off of NO (Nitric Oxide) now. NO helps his system process O2 so the fact that he does not need it any longer is very encouraging. It also means that they can do an MRI tomorrow. Hopefully this will give us a clearer picture of any brain damage.

They also started to feed him (through a tube) with something like pedialite. These are all good signs.

Simon is still heavily sedated. He is no longer paralyzed so we get to see him move slightly once in a while. His color is good and there is very little swelling.

The did an echo today but we haven't heard a report yet. We had hoped to hear from a neuroligist about the CT scan and the EEG but nothing has happened. We assume that the MRI is the main tool to evaluate the brain.

We had a great family day today. Sandi is on her way home with Tobi and Trey. Dean and Summer did not get the McDonald house room tonight so they will stay at Brooks (20 minutes away). Tomorrow Dean travels home for work. I (Tom) will stay in Indy until Dean returns. We are working out plans for taking care of Tobi and Trey, keeping up jobs, and keeping someone (mostly Summer) with Simon. We have no idea how long a journey this will be but God will get us through it.

It's incredible how quickly everything can change. Then all that you have built your life on becomes evident. Faith, family, your world-view: everything you have built into your life either holds up or fails. Kind of like building your house on the rock or on the sand. Both houses can look great. Even sturdy. But when the storm comes...

We've had many storms this year: major heart surgery, a house fire, and now this. God IS the good foundation.

[Posted with hblogger 2.0 http://www.normsoft.com/hblogger/]

Detail

One small prayer request. Dean and Summer have been staying at the
McDonald house in the Riley Hospital building. It is on a night-by-night
basis and they never know if they will get it until early evening.

There is also a McDonald house in a different building that is more
long-term. They are on the list for a room. They have plenty of options
to stay with family and friends in the greater Indy area but it would be
better to be close.

Pray that they are approved for the longer-term McDonalds house.

Tom
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Sent from my cell phone

Monday morning update

Dean and Summer just came back from visiting with Simon. They continue to reduce meds with good results.

NO is down to 3 (started at 20). They removed one of the last two heart meds. Liver enzyme count continues to fall. Liver appears to be working.

We still have not heard from the neurologist.

It's been good to reunite Tobi and Trey with Mom and Dad. The plan right now is for them to go home tonight.

Family is an incredible thing: Biological and Spiritual. I think that's how "life" is supposed to work.
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Sent from my cell phone

Grandma visits

Sandi finally got to visit Simon. She sang to him and we prayed together. Lots of questions to a very kind nurse.

He continues to improve as best we can tell. Tomorrow should be a big day with reports from the CT scan and infection tests results.

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Sent from my cell phone

Less meds

They have been reducing some meds and so far so good. The paralytic was stopped today so Simon reacts to touch and is starting to move some. He is still sedated but the signs of movement is encouraging.

Tomorrow should be another echo cardiagram and a neurologist reads the x-ray.

Tobi and Trey (with Grandma) are on their way here to visit Mom and Dad. Hopefully we can have a fun family time for their sake. Scott, Jenn, Canon, Cadence, Grant, and Nate (cousins and uncles and aunt) are coming also. It's amazing how important family is when tough times come.

Praise God for his promises. On Friday morning, on the way back from Lutheran in Ft Wayne, I saw a sunrise-lit cloud with a rainbow coming out of it. It was very beautiful and unique. For me, it was a reminder of God's promises and that his love is new each morning. A powerful
combination.

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Sent from my cell phone

Some good news

Dean just called and Simon made some progress over night. Liver numbers have improved and swelling in his face appears to be reduced. Heart function is a little better. He is still urinating well.

We are bringing Tobi and Trey to Indy to see Mom and Dad. There is a hotel with an indoor waterpark on the North side. Pray that we have a good family day for the sake or Tobi and Trey.
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Sent from my cell phone