Update: December 12th

I wanted to include a picture from Andy's last visit to Vandy. I saw this picture Friday night at our company Christmas party. It immediately brought a rush of emotions and tears as I remembered his condition at this time. Praise the Lord! This is not his condition today. He is thriving, eating well and trying to roll over. He is full of emotion and smiles often as he coos. I have included some recent pictures of him as a contrast to his previous condition. How kind of the Lord to allow so a quick recovery for him.

We continue to pray that the Lord will completely heal Andrew. Our prayer is that they will wean him this Spring and remove the Broviac IV this year. How great would that be? Thank you all for you continued prayer and emails asking about him.

Thank you all for your continued prayers and emails asking about Andy's updates.

-The Sagraves

December 2nd - Update

So sorry it has been a while since we have updated the site. Life has been very busy with Thanksgiving, family visits and raising a little boy. :-)

Latest News:

Krista went to Vandy on Monday with Andy to see Dr. Moore and our stand up comic/Pulmonary Hypertension nurse MaryBeth. :-) They were pleasantly surprised that Andy has responded so quickly to the Flolan treatment. They didn't expect to see any changes for 3-6 months and yet 6 weeks later his pressures are 1/3 what they were when we started.

So what is the next step? Typically as children grow they would increase Andy's Flolan treatment to adjust with his body weight. They are so encouraged by his progress that they will continue the Flolan treatment but will not increase his dosage to keep up with his body weight. This is a natural way to wean him off the Flolan. We will continue to see our Cardiologist in Knoxville each month to monitor his pressures. In late Spring/Summer we will go back to Vandy for a Cath to get an accurate reading of his pressures. If his pressures continue to go down they will actively move him off the Flolan. This could be a long process but it would eventually allow him to not need his back pack. How cool? How amazing that we are even talking about this potential outcome at this point.

What can you pray for?

* Andy's pressures to continue to come down to normal
* No side effects to his going off of the Flolan treatment
* Wisdom for all of our Doctors - Moore/Breamer/Doyle/MaryBeth
* Luke McAmis - he was re-admitted to Vandy this week. He has multiple issues that keep bringing him back to Nashville. Brad & Nat his parents, strength and wisdom for them.


Thank you all for your continued emails and prayers for Andy.

Our hope would be that God who created us would get Glory for Andy's condition getting better so quickly.

-The Sagraves

Update - November 9th

We went to the cardiologist Monday and got more good news. Andy's pressures in his heart were 40. Not 50, not 90, not 130 but 40! We never cease to be amazed at the course we are on with Andy's recovery. When I got the report I was overwhelmed with God's kindness. Andy is responding so quickly to the Flolan treatment. Our doctor also said his heart function looked very good. So next step is to go to Vandy on the 21st to visit with our cardiology team there. I have included some recent pictures of the dude. More to come...

Update - Pictures October 30th

A few recent pictures of Andy and our neighbors the Schollaert's. How cute?

Back in the swing of things

We are home and trying to get into a routine. We are doing our best to get Andy on a schedule. Considering he was all over the place while in the hospital he has done very well to slide back into his daily regiment. We have also discovered that while in the hospital we held him most of the time after he came off the breathing machine. So now he wants to be held most of the time. We don't mind since one day he'll be running around and won't have time to be held by Mom and Dad. We get all the hugs and kisses in that he will allow. We are enjoying that fact that he is still a little small guy. Most kids his age (2 months) are 12-13 lbs. He is just now tipping the 9 lbs scale due to all the medicines and surgeries he has gone through. Regardless we are just grateful to have the guy home with us. We are in a very unique position as new parents. We are getting the opportunity to have a son who has a serious problem home with us every day. We are so grateful and thankful. We realize the we have a long road potentially with him but are committed to taking this just one day at a time. God will give us grace for each day. To this point being home has been just a blast.

Medical update:

We went to our cardiologist Monday where they did a follow up echo. His pressures read around 54. Still more encouragement for us to be thankful. The mixing of the Flolan has fit well into our daily routine. Krista has taken the task and has mastered it. She mixes during the week while I"m at work. So I mix on the weekends to stay in practice. In terms of how he is doing- He's just great. He looks healthy and his breathing looks like it's much more relaxed. Our next step is to get an echo and follow up visit at Vandy on November 21st. The next step would then be to do a heart cath (minor surgery) sometime near Christmas. Other than those steps the future for Andy is a blank canvas.

Things to pray for:

*That Andy's pressures would continue to go down and that the Flolan would continue to be effective.
*Wisdom for our doctors (they are pretty smart but they need wisdom). :-P
*Wisdom for Krista and I as we care for Andy.
*Pray that our faith will continue to grow as we walk through the next chapter of his life.
*Luke McAmis - Natalie and Brad (our friends from Maryville) - Strength for parents, healing for little Luke.

Sorry it has been a couple days since we have posted. I do hope to have some 'new' pictures posted soon.

I have included my favorite picture of Andrew to this point. This my desktop at work and my screen saver on my phone. I love it because he is laughing and he has such a sweet smile.

Thankful to be writing from Knoxville,

The Sagraves

Prayer Request

Just got this email from Luke's Mom. Please take a moment to lift up this family.

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Luke's wound (incision) is very infected. He will have to go back to the OR today to have the wound re-opened and clean out all the infection. His chest will be left open for several weeks to allow all the infection to clear out. Also, they are concerned that Luke has also developed a pneumonia. Pray hard for Luke. We are probably going to the OR around 2:00.

I am really having a hard time understanding why this is happening to Luke. He is constantly being met with setbacks. Please pray for my strength and peace.

Thank you for your prayers.

Love-
Nat

Coming Home!

We got home last night about dinner time! We are so excited to be home. Still amazed at God's mercy in allowing Andy's condition to change in a little under 2 weeks. He got an exit echo before we left. It showed even LOWER pressures... I'm smiling as I write this. They said he looks to have pressures in the 60's as of Thursday when we left. Isn't it great? We can NOW worship God in his Goodness and in a true miracle.

"Is it not from the mouth of the Most High that both calamities and good things come?" Lamentations 3:38

So today we just want to thank our God for walking us through this trial and now he has allowed us to return home to our friends and family.

I got an email from my small group leader where he referenced Romans 1:8-12.

"First, I thank my God through Jesus Christ for...you, because your faith is proclaimed in all the world. For God is my witness, whom I serve with my spirit...that without ceasing I mention you always in prayers...For I long to see you...that we may be mutually encouraged by each other's faith, both yours and mine."

It was amazing to hear him write encouragement to us based on this passage. It was the exact way Krista and I have felt while in Nashville this trip. We just longed to be home with our family and friends. We have been mutually encouraged by the support we have received through your prayers that have not ceased. Your faith in God that you have written to us via email has built our faith and helped us in this time. To all that read this post please know that we are so grateful for your friendship and your care for us.

We do recognize that we are not out of the woods with Andrew. Our prayer and trust in the Lord will not stop now that we are home. We look forward to seeing all of you all this weekend.

For Now,

The Sagraves

Update - October 20th

We are completely trained on the Flolan. We do our last 'test' for the doctors today. If all goes well they may discharge us today or tomorrow. Everything moves slow here so it might be this weekend or next week before we actually get home.

Longing to sleep in our own bed. Looking forward to being with our family and friends.

The Sagraves

Just couldn't help myself...

Update - October 18th

Today we began our crash course in administering Flolan. Honestly it's a bit overwhelming. It's like doing a chemistry experiment only our child's life depends on it. They are going to keep us for 2-3 more days and do nothing but train us on how to mix and admin the Flolan and clean his IV.

Some very encouraging news came our way yesterday and today. We did not however want to jump the gun in telling everyone without completely understanding what the docs told us. Andy got a heart echo on Monday. We communicated Tuesday that his heart echo came back with encouraging results.
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A quick recap on pressures in the heart:

Normal kids - 30
Andy when he left Vandy - 40
Some of the highest pressures they've seen here at Vandy - 100
Andy when he came back to Vandy - 130
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So initially the doctors told us that his pressures registered at 64. This is simply amazing! Praise the Lord! After further review... (just think of this like instant replay in college football) his pressures measured 64 and in the 90's. So they think the 64 number might be a bit optimistic. But honestly we would take 90's right now considering he just started the treatment a week ago. Long story short we were so excited we were like little kids jumping around laughing. We will continue to pray that the Lord would allow the treatment to work and that his pressures would come down.

On a side note- God has been so kind to give us friends here in the hospital, the McAmis'. Brad & Natalie have a son Luke who is 10 months old and they are from Maryville. We met their pastor and most of their family last week when Luke went into surgery. They are of like mind in their faith and have been a joy to spend time with recently. We feel a strong burden to pray for this family because their suffering is so great. They have spent 4 months in the ICU alone this year. After they went home they have been to and from Vandy ever since. Specifially you can pray for:

1. Recovery from his heart surgery last Thrusday.
2. His feeding to improve- he could move to oral feeding.
3. His fever to go down, it's currently at 103. Pray that it's not an infection in his incision from surgery.
4. Physical & Mental development- He is developmentally delayed because most of his life has been spent in a hospital bed and his chronic illnesses require much medication.

As Krista and I have reflected back on the events of the last 2 weeks we are simply amazed at what God has done in Andy's life. We were told that this disease was terminal and that his hope was small. Now we stand 10 days later with an outlook that is to good to be true. We should be home before the end of this week with a boy who has hope to live a very full life. How kind is God to alter the outlook of our son's life? I believe he has heard the prayers of his people. He promises to be a rewarder of those who earnestly seek him. Thank you all for earnestly seeking him with us for Andy's life.

A few recent pictures of me making Andy laugh and him sleeping.

Much love,
The Sagraves

Update - October 17th

Well we had a none eventful weekend here at Vandy. We had some family come and visit which was a nice change of pace. On Friday night we were surprized by our friend Dave Puncochar. Then friday evening Todd & Ashley Gould came over for dinner and stayed till lunch Saturday. My brother and his wife came in Saturday with Kerri's parents, the Murphy's from Memphis. We were refreshed in spending time with them.

Update:
They did another Echo on Andy's heart this morning to see if there is any increased function from the medication, Flolan. At first glance the doctors said that the results show a small improvement. We were encouraged and yet the doctors were quick to remind us that there are no guarantees. The next step for us is to get trained on the administration of Flolan. We will do part of the training today and part tomorrow. Basically they tell us as soon as we are comfortable administering the Flolan we can go home. We should know more on our departure time later tomorrow.

We talked to MaryBeth our PH nurse this morning about expectations. Basically we have no real definitive news on Andy's prognosis. We will wait to see how the Flolan works in his system. The doctors say they typically don't see improvement for 3-6 months. So we are far from out of the woods. I have detailed a couple questions I have been asked by friends and family.

Q: So are they now saying that Pulmonary hypertension is NOT terminal in Andy's case?
A: PH has no cure at this point. In some cases it can be treated and pressures have been reduced. There is not much medical info on PH in adults much less infants to draw from. So they will send us home with the hopes that the Flolan works. We will see our cardiologist in Knoxville and plan to visit Vandy in 3-6 months for another Heart Cath.

Q: Once you get home how long will Andy be "The Boy with the Backpack?"
A: Andy is on a medicine called Flolan that is pumped into his heart every 3 mins, 24 hrs a day. In theory this administration of medicine does not stop as long as Andy lives. However, doctors tell us that in infants, because of their growth rate, can grow new tissue in their pulmonary beds. This means the lungs can make new tissue that may reverse the PH effect on the lungs. If this happens they would begin another medicine that would promote growth in the pulmonary beds. There are so few cases of PH in infants thus they can not give us much solid info other than the best and worst case scenarios they've seen in other children. Unfortunately, because of the small information they have on PH Andy is a bit of a case study. This is primarily due to his age. Most PH patients are adults or older children that have had heart surgery. Andy is an infant, two months old tomorrow so he is a pioneer.

Q: What is his life expectancy now?
A: At this point we just don't know. Until we see if the Flolan works to reduce his pressures there is no way to judge what his length of life will be.

Q: What can we pray for?
A: Primarily you can pray that the Flolan will Work! Also, pray that he thrives in his eating and does not get infections. Because he has a Broviac IV so close to his heart he could be subject to a staph infection. After his heart surgery he was suspect for infection but this is a much more serious. An upper resp infection or infection that effects the heart/lungs could threaten his life. So we will model Andy's time in Knoxville after our close friends the Ruth's & the Schollaert's. Our baby in the bubble will not be visiting Children's ministry for a while. :-) This also means that we will need to limit our interaction with sick friends, kids etc.

As you pray please remember Krista and I. We are growing tired and need to be refreshed. We also realize that this could be a very long road that we walk. We don't just want to make it through this trial.We want to have faith and joy in the midst of our trial. Our desire is to Trust the Lord in both Good and Bad. This is much easier to type on my computer than it is to live out. So you could pray for strength, endurance and wisdom for us.

The Sagraves

Pictures - October 15th

Update - October 15th

This past Tuesday we went to the OR for Andy's Broviac IV and for the lung biopsy. We got news last night on the biopsy. This test was going to tell us if Andy's hypertension could even be treat and also the severity of the damage thus far. On a scale of 1 - 6, 6 being the most damage Andy's results were a 2. What does this mean?

Well initially we were told that Hypertension was terminal and that due to Andy's high pressures his life could be very short. After the news from the biopsy we have a much more encouraging report to give. The believe that his hypertension will be able to be treated and potentially reduce his pressures. We have a Hypertension Nurse, MaryBeth (who we are crazy about). MB told us that the results from the biopsy are encouraging for the long haul. She explained that they have 'other' children who have had their pressures return to normal after a couple years on the Flolan treatment. The next step for those children is to move from the constant Flolan treatment to an oral treatment. We are far from out of the woods but, This is JUST SIMPLY GREAT NEWS! We are a bit overwhelmed in this great report. It makes me think of all the people who are praying with us and petitioning God for Andy's healing. - Thank you again for your constant prayers and support.

The docs tell us that if all continues to go well we should be able to go home Thursday/Friday of next week. We are not sure what the future holds for us. We realize that in both Good and Bad that our God loves us and HE never changes. "Is it not from the mouth of the Most High that both calamities and good things come?" Lamentations 3:38

The Sagraves

Update - October 12th

Great news this morning! Andrew got his breathing tube out. We can now HOLD HIM! We got a call at 6:30 AM from our nurse telling us it was out and we could now hold him. We were so excited - we brushed our teeth (yeah right) and ran to the ICU from our sleep room. Anyways here are some pictures of Krista holding Andy. Also the first time we have heard him cry since last Thursday. Amazing....

Andy Update - Oct 11th

Well we are out of surgery and all is well!!! Praise the Lord that everything went smoothly. His Broviac IV is in for his Flolan treatment. Flolan is the med they will give him consistently to treat his pulmonary hypertension. They also did the biopsy of the lung with no complications. Andy if heavily sedated and won't be awake until tomorrow morning or mid day. The next step is to get him healthy and get him home. The biopsy results will take a week or so to get back. For now we can pray for:

* Getting him off the breathing machine.
* A strong & speedy recovery, no infections or 'other' ailments
* A clear plan to treat his PH.

Krista and I have read every email you have sent us. I think we have received close to a hundred emails over the past couple days. We have commented often of what amazing family and friends we have. We look forward to the time we spend reading and rereading your encouragements. It's amazing also to see how the Lord directs us to certain scriptures to meditate on. In one day we got 4 emails referencing the same verse that the Lord put on your heart for us. We both feel a sense of God's umbrella of grace covering us in this trial. It is apparent that you are helping to carry this burden for us because our load is light and our burden is not overwhelming. This is only possible through the spirits work in our heart and your constant prayer. Thank you - I can't tell you how humbled we are to receive emails of the times you have fasted and prayed for us. It is simply amazing that You, our friends and family would so specificially stand with us.

On a side note- I have been asking the Lord what he wants me/us to learn from this situation with Andy. It is often easy to focus so much on Andy and his health that we forget about the bigger picture of God's "working out our faith." I am consistenly reminded of God's soveriegnty in my thoughts and prayers.

Is God soveriegn over all the events in our lives, Good and Bad? Here are a couple of verses that have encouraged us through this time.

"Is it not from the mouth of the Most High that both calamities and good things come?" Lamentations 3:38

"I know that You can do all things, no plan of your can be thwarted." Job 42:2

"We know that in ALL things God works for the good of those who love him, who have been called according to His purpose." Romans 8:28

I can say that our family has clung to his soverign plan through this time. We consistently remind ourself of what we feel and what is real. God's character is never changing, however our emotions shift depending on the doctors diagnosis, and at times the wind. :-) So at times I seem to get a glimpse of how this trial is as much about Mom and Dad responding to God's plan as it is Andy getting better.

Thank you again for standing with us.

The Sagraves

Andy Pictures from Vandy-100905

Here are some pictures taken today (Sunday) of Andy and our room in the ICU. You can click on each to see a large picture.

Update on Andy - Friday Oct. 7th

Just wanted to update everyone on Andy's condition. Today (I began this note on Friday night) we spoke with both doctors on the cardiac team that specialize in Pulmonary Hypertension or PH. We learned a couple things today that give us the best case and worst case scenario for Andy. Medically our next step is to go to the OR on Monday. In the operating room we will accomplish a couple things, first of all we will insert a permanent broviac or IV. This IV will allow us to give Andy medicine for his PH. It will be a permanent placed IV that will hang out of his chest so he doesn't have to get 'stuck' daily. This will also be the means by which he gets medicine, flolan. The second purpose for the visit to the OR is to do a biopsy of the lung. This biopsy will allow us to tell if Andy's PH can be treated. The tissue in his lung will give us an idea of how much damage has been done by the PH and if the treatments they have begun will work. His visit to the OR is scheduled for Monday but it could change over the weekend. After the biopsy they will send the info to a couple labs and it could be weeks or months to get results. The plan is to do the biopsy and broviac on Monday, then get him healthy and well enough to send us home. We have made it very clear to the doctors that our desire is to be at home with Andy regardless of the outcome. So they have committed to us to follow our desires and get us home as soon as Andy is able.

High expectation or Best Case: The Lord completely heals Andy's PH and he lives a normal life. We have and will continue to pray for God's mercy to heal him.

Moderate expectations: Andy goes home with a broviac IV and has a little backpack he wears that mixes the medicines to treat his PH. He could live up to 5-7 yrs old or as little as 1 yr.

Low expectation or Worst Case: A normal child/person has pressures in the 30's. Andrew left the hospital after his heart surgery with pressures in the 40's. When he got an Echo on Monday they were in the 90's. The heart cath they did on Thursday read 105. We asked the PH specialist here at Vandy where Andy's pressures ranked, she was very polite but was honest that they have never seen pressures higher than 80's or low 90's. Because his pressures are so high it means that any procedure is very risky. So Monday's trip to the OR will be bathed in prayer.
We are very sober and realize that we may not leave Nashville with Andy. It completely breaks our hearts to think these thoughts but we quickly direct our thought back to Psalms 139 where God clearly states that he "knit us together in our mothers womb" So we do not doubt that Andy's condition is under the umbrella of God's love for us. We believe clearly that he will get glory and this trial will be for our good. This doesn't mean we don't cry in passionate prayer pleading with God or struggle with the reality of the loss we may be called to walk through. All of the emotions have come and gone. Some mornings we wake up crying, some we wake up laughing. Krista has simply been excellent in her response. She has controlled her thoughts and is choosing to trust the Lord and hope against hope as the Landis' have encouraged her in the past.

Questions I've been asked in voicemails or emails by our family/friends:

Q: How long will we be here in Nashville?
A: The doctors tell us 2 weeks to a month depending on Andy's recovery.

Q: Can family/friends do anything?
A: Well the best thing you could do is to pray. I'm sure if your reading this you have already been praying, but please continue to pray for us. Specifically you could pray for: Strength for us, Wisdom for us as we make decisions for Andy's future. Wisdom & Knowledge for our doctors. Pray for our parents as this time is very difficult for them as well. Not only do they mourn and pray for Andrew but they have a burden for us as well.

Q: Do we need anything?
A: Honestly we are very well cared for at this point. Krista's parents are coming Saturday morning to bring us more clothes and supplies.
We do enjoy reading encouraging emails so you are welcome to email us at dsagraves@rmtgroup.com. Please don't expect a response, but know that we are reading each email and that they have encouraged us greatly.


In closing I will try to update this site every couple days with the latest info. Unfortunately, in the hospital no one is on the same schedule we are so things are much slower than we desire. We will continue to call our parents for verbal updates but will try to communicate here in writing so we don't have to speak updates in the case they are not good.

Thank you all for your care and love for our family. We feel very cared for and are definitely experiencing God's grace through this trial.

The Sagraves

More Pictures

Update on Andy & Baby Dedication

Here we are, 6 weeks after Andy's birth and man is it amazing. He is growing like a weed and eating double what he ate when we first brought him home. Krista is doing a wonderful job of getting him on a schedule and caring for him. Overall we are just enjoying having him in our lives. It's pretty neat to evaluate how our conversations have changed since having Andy. What did we do with all of our 'free time' before having a child? Not sure where it all went but now it is spent with our new little dude.

Update on his pulmonary hypertension:

We have not had an ekg (echo cardio gram or xray of the heart) in probably 2 weeks. Our next visit to the cardiologist is in the morning, but we won't have a ekg until the end of October when we go back to Vandy. We are still praying that the Lord would heal Andy's heart. I have included an article on pulm hypertension below if you'd like to read more.

Pictures from today's baby dedication at our church. www.knoxcstone.com





















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What began as a thesis for a Master’s in Clinical Investigation for Dr. Frederick Barr, assistant professor of Pediatric Critical Care, has evolved into a study published in the January issue of The Journal of Pediatrics.
The purpose of the study, titled the "Effect of Cardiopulmonary Bypass on Urea Cycle Intermediates and Nitric Oxide Levels after Congenital Heart Surgery," is to determine risk factors for developing a complication called pulmonary hypertension after surgical repair of a congenital heart defect.
Approximately 40,000 infants are born with congenital heart defects in the United States every year and a large majority of these infants require open-heart surgery, which can lead to complications.
Post-operative pulmonary hypertension, or increased blood pressure in the arteries supplying the lungs which subsequently doesn’t allow enough blood flow to the lungs and causes decreased oxygen levels, is one complication physicians typically see in newborns. Development of postoperative pulmonary hypertension can translate into longer ICU stays, longer hospital admissions, and even death if untreated.
Barr’s studies have looked at nearly 300 children with various congenital heart abnormalities but the publication focused on patients at highest risk for postoperative pulmonary hypertension, such as those undergoing repair of an atrioventricular septal defect (AVSD).
"We initially found that the stress of cardiopulmonary bypass and surgery caused a dramatic decrease in the amino acid arginine, which is the precursor to nitric oxide, an extremely important molecule in controlling pulmonary artery blood pressure," said Barr. "We also found that infants who developed postoperative pulmonary hypertension have lower postoperative arginine levels compared to other infants."
The next step was to figure out why.
Arginine is supplied by the urea cycle, which is a complex set of biochemical reactions — with the most important step being catalyzed by an enzyme called carbamyl phosphate synthetase I (CPSI). One of Barr’s collaborators, Dr. Marshall L. Summar, associate professor of Pediatrics and Molecular Physiology and Biophysics, had previously found that one particular change called a single nucleotide polymorphism in the sequence of the CPSI gene appeared to affect arginine and nitric oxide production.
"We next looked at each infant’s genotype at this polymorphism (called T1405N) to determine if it was a genetic risk factor for post-operative pulmonary hypertension," said Barr. "We found postoperative arginine levels were different among infants depending on their genotype and that infants with one particular genotype appeared to be protected against pulmonary hypertension."
According to Barr, the next step is to give infants undergoing congenital heart surgery another amino acid called citrulline to see if postoperative pulmonary hypertension can be prevented. Citrulline is converted in the body to arginine.
"We hope to begin our citrulline trial in the coming weeks to see if it is a useful treatment to increase arginine and nitric oxide production post-operatively," Barr said. He expects to have some answers roughly a year after the study starts.

Dear Friends

Tonight my wife Krista and I went to dinner with some dear friends. We just love hanging out with the Ridner's.

Pictures of Andy-091495

First time to blog

Hello All!

Hopefully if you are reading this you are a family member or a friend of our family. Thanks so much for taking the time to read this post. My desire for this blog would be to share the details of the Sagraves Family on a daily/weekly basis. More specifically this is a better means for me to post pictures and details of baby Andrew's life for my family in Florida.