December 18th Cath Results

We just got into a recovery floor room. His cath lasted about 4 hours in all. Typically it should only be about 2 hours. Long/Short story- his pressures were about the same as 6 months ago. They were actually a bit higher. So initially there will be no “wean” off the Flolan. Dr. Moore communicated that “more of the same” for the next 12 months. They are going to turn UP the level’s on both his Flolan and his oral medicine.

Overall we are so very thankful for Andy’s recovery from yet another small surgery.

"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

So again with more news on Andy will rest in the fact that we are not in control. That this news today was not news to the author of our lives.

We are traveling home today (Tuesday) and should be in our beds tonight.

A change in plans.......

Pics of Andy after recovering from surgery. What a little trooper!!!



So here is the story......Dave came home 30 minutes before we were about to leave for Vandy and Andy's alarm on his pump started to sound. This meant that the Flolan was not able to pump into Andy's heart. We did everything to try to get it to work again. We changed the pump, changed the medicine and fiddled with the tubing. Nothing worked. So we jumped in our car and headed to the ER here in knoxville. They put in a peripheral line and began the infusion again. All in all Andy was off of his Flolan for probably over an hour. We then headed to Vandy where we had to go to the ER because there were no beds available in the hospital. We were not actually admitted to the hospital until 2:30am the next morning. At 6:30 am Andy went to the OR for surgery to replace his old broviac seen as it was no longer funtioning. His surgery went great and he was out in recovery in no time. This visit was a bit different for him however because he was so aware of everything and everybody around him. Every time someone would walk into the room he would start crying because he knew what they were coming to do. So thrusday and friday were rough days for him and us. On top of that none of us getting any sleep.
Andy was unable to get a Cath because they wanted the data they received from the Cath to be as accurate as possible. With him being off flolan for a while Dr. Moore just didn't think this was the best time. The GREAT news however, is that he was off of Flolan for atleast an hour and when we got to Vandy for an echo his pressures were still normal. So although our plans changed and Andy unfortunately had to get another Broviac we got some great information on Andy's condition. We will be going back to Vandy sometime within the next three weeks for a Cath. Please continue to pray for him and pray that his new Broviac and old Broviac area on his chest would heal well.

This was the exact same time we were in the hospital last year. Only instead of being trained on Flolan and hoping for change in Andy's pressures we were talking about how amazing it was that his pressures were NORMAL. We were able to visit with Dr. Doyle. He was the Dr. who gave us the tough news last year. We hadn't seen him since that time. So he stopped by to visit and rejoice with us that Andy was doing so well. Of course we got to hang out with Dr. Moore and Mary Beth and enjoy Andy's progress as well. We are so thankful for our Dr.'s and nurses who cared for Andy so well. We are thankful for there hard work and wisdom. We are most thankful however, that the Lord did a great work in Andy's heart....it is a miracle.

Vandy

We will be heading to Vandy on thursday for Andy to have another Cath. The actual Cath will be on friday. The main objective of the Cath is to see what Andy's pressures and what his heart function looks like. From there our hope is that if those and other details look good they will begin a year long weaning process to eventually take him off Flolan. Please pray for Andy while he is in this surgery and also in recovery as it is always a risky procedure for a child with PH. Please also pray for Dr. Moore as he performs the Cath and pray for wisdom as to what path we will take from there. Although we would love to see Andy with no more back pack our desire is for what ever is best in the long run. We want to trust the Lord for Andy's future.

Love,

The Sagraves

Pics of Andy

Here is Andy's 1st Birthday party. He'd rather pick his nose than eat his cake. His first opportunity to have sweets and he was not the least bit interested.

A few days before Andy's birthday we sat down and watched the video from Andy's stay in the hospital. We cried....it is amazing how quickly you can forget all the Lord has done in one short year. Although it was a difficult time the Lord was so merciful to care for us. We are different now and pray that the Lord will continue to use Andy to shape our lives to become more like Christ.

This is Andy after a hard day of playing with toys. I left him for a couple minutes and when I came back he had fallen asleep. We play hard at the Sagraves home.

Here are some beach pictures from June that I never posted. Andy was a bit to adventurous for a boy with a back pack when it came to the water. The minute we got down there he was ready to dive in the water. Needless to say our time in the water was short.

Side note: We had our ultrasound of the new baby and found out it was a he...YIPPEE!! Everything looks great with his heart. We don't have a name for the baby yet. Any thoughts???

Andy's Daily life

Here is a picture of Andy in his daily work around the house. He wears his backpack and crawls around like he owns the place. He rarely stops for more than a couple seconds. What's amazing is he doesn't even know it's there. He's just always had it attached so it doesn't bother him at all. It's just a part of who he is in his own little world.

More pictures to come...

Before and After Pictures from DIY "Grounds for Improvement"

We recently did a 2 day show for DIY netowrk called "Grounds for Improvement." Here are some before and after pictures.

Back to Vandy with Andy

We went back to Vandy on Monday for a check up and Echo. We went with the expectation of scheduling our next appointment for a Cath to take the Broviac out and stop the Flolan infusion. Unfortunately, things didn't go exactly according to OUR plans. Andy's heart and pressures have not improved. They are kind of stagnant right now. Even after the increase of Flolan and an oral drug being introduced. So for right now we are in a holding pattern when it comes to any changes in medicine. It is possible that the Flolan has run it's course and this is as low as it is going to take Andy's pressures. This will mean that he will not be able to have the Broviac removed and the infusion stopped. Although we were a bit discouraged about the thought of our little guy having the "back pack" for the rest of his life we were reminded of last October when we were told that there was no hope for Andy to live. THANK YOU GOD FOR THE "BACK PACK!!!" Please pray that the Lord would continue to encourage our faith to trust Him in ALL things. This has been our first check up that we haven't received raving reports on improvement. It's funny how we can forget so quickly about all the Lord has done for us in the last year and become discouraged. Lord, forgive us. Thanks for our precious little Andy.

SO, with the possability that Andy will have this back pack for awhile we have decided "it" needs a name.............any thoughts????

Do you want to be famous??!!

We can help! Next week June 28th and 29th DIY is coming to redue our front yard. We desperately need helpers!!!! It would be from 8am to 5pm. Yup, a full two days. However, you will be on TV (if anyone cares about that). Most people are at work during those hours so we are having a difficult time finding helpers. So, if you are up for back breaking fun please give us a call.

Thanks,

Dave & Krista

Update

So, I'm writing an update per request from Michelle Hamstra:)

Andy is doing great! He still isn't crawling but he is trying hard and getting angry when he can't move. He has learned how to clap, he knows how to point out your nose and mouth on command and he talks in "baby" ALL DAY LONG. He's a talker....should that surprize anyone???

He had an Echo a week ago and his heart continues to look better each time. We are so thankful. Now we are just playing the waiting game with his tube. Our next checkup is at Vandy on July 10th.

We are pregnant and very excited. Baby #2 is on the way. Please pray for us because I am considered a high risk pregnancy. The benefit of that is that I get an ultrasound EVERY WEEK!!!!

We are going to Charleston for our first family vacation on Saturday....Yippee!!!

I'll get some more pictures up of Andy soon

Pictures of Andy

Vanderbilt Cath-Praise God!

Andy had his cath yesterday and is recovering well. He is up playing having a good time. This is an answer to prayer. We expect to be released from the hospital sometime today.

Dr. Moore had great news for us. He measured his pressures and they are almost normal. (Average of 29) However, they have decided to take a bit of a different approach than we had talked about previously. They are going to turn his Flolan UP to match his current weight and then add in an oral drug. The reason for this decision is to continue to reconstruct the inner wall of his lungs. The Flolan will hit one receptor and the oral drug will hit another. The oral drug will be the transition drug they will use after the Broviac and Flolan are removed. He told us that barring any changes in Andy's health he could be Broviac free a year from now. There is a possibility that they can reverse his PH. This is simply great news!! Dr. Moore is taking the conservative approach. We appreciate his care and wisdom on how to treat Andy and we trust his judgment.

"This post was reviewed and Approved by Dr. Don Moore at 7:20 AM CST. Subject to change if Marybeth over rules him and decided otherwise." :-)

Please pray for Andy that the Lord will continue to heal him. Please also pray that the Lord will give us wisdom and creativity on how to deal with Andy as he learns how to crawl and walk with his bag, tube and broviac.

Thank you for your prayers in this phase of our trial. We are overwhelmed by God's goodness. As Dave and I talked last night about trusting God and being anxious Dave reminded me that God is in control of Andy's life. Whether he is in a Cath at Vandy or just living every day life.

Because of our past visits to Vandy we are very sober every time we come here. We recognize more clearly that every day with him is a gift. God is very kind to allow us to play and enjoy Andy again today.

Update- Trip to Vandy

We will be going to Vandy on April 5th. At this appointment they will do an Echo on that Wednesday and they will take Andy in to perform a heart cath on thursday. We have been told to prepare to stay a few days for recovery.

Specifics to pray for:

1. That Andy's pressures would be normal or close to normal to begin the weaning process off Flolan and on to an oral drug. Wisdom for the Dr's and us to decide on what oral drug to take if this is an option.

2. That Andy would respond well during this procedure. Anytime you have a child with PH having a heart Cath is a risk.

3. That we would trust the Lord through out this process and not be anxious. It is always very difficult to return to Vandy. We realise that the Lord could choose to take Andy at anytime. We want to trust the Lord for Andy's future and always have an open hand. Yet believe the Lord for a continual miracle with Andy's heart.

4. The Lord would guide the Dr's during surgery (Dr. Moore) and give them wisdom concerning Andy's medicine.


Thank you for continuing to walk with us through this trial. We are so thankful for our family and friends for all the time you have commited to praying for Andy and us. We love you!!!

Single White Male

SWM, I have a lot to offer.....I can sit up without being held (look no hands), I have two original teeth, I enjoy giving kisses, and look at those leggs, woo woo. I enjoy long walks, stimulating conversation, I cry when you don't hold me and I love to cuddle. Comfortable with open courtship no strings attached......OK well, one string attached:)

G.G's Birthday

Andy wanted to wish his Grandma Gould( G.G.) a Happy Birthday.

Does Andy look like his mom or his dad?

Does Andy look like his mom or his dad???
Vote Now!

Update - 021406 - Andy's First Tooth

Update- Feb 14th - PICTURES

Here are some updated pictures of Andy. His Grandma Gould discovered his first tooth. We haven't captured it on film yet but stay tuned.

Update- Feb 13th

We went to Vandy today to meet with our Cardiac team. Overall it was a pretty uneventful trip. His pressures are still down and the function of his heart looks good. We were so very encouraged that almost 3 months after going on Flolan we are having discussions of WHEN to take him off. When we began this journey our thoughts were IF he would even live. Dr. Moore and Marybeth were quick to remind us of how no child has responded this quickly to the Flolan. This is an abnormal case for them to see. Praise God for his kindness to us. He has again shown his mercy to our family.

The next step is to schedule a heart cath for April to get an accurate reading of his pressures. This trip will include a couple nights in Nashville for prep & recovery time. Andy was a bit of a celebrity in the cardiac offices. We also discovered that Andy had a crush on Marybeth this trip. He nestled in and took a nap in her arms and didn't want to wake up for his exam.

Thanks to you all for your faithful prayers and support.

Happy Valentines Day!

The Sagraves

Update: January 11th

Sorry it's taken so long for us to update the Blog. Christmas has been busy. We took Andy to his appointment here in Knoxville for his routine ECHO. We received GREAT news. His pressures for the most part look NORMAL!!!!!!! His heart function looks great. Our cardiologist, Dr. Bremmer said that If you could compare the echo of his heart in October and the one now in December you wouldn't think it was the same patient.

We are going to Vanderbilt on february 13th to meet with the Dr. Moore and do an echo. From there they will decide when to schedule the Cath for Andy. A Cath is the Gold standard for measuring pressures. If his pressures are normal they could very well stop the Flolan infusion and begin him on an oral drug. There are several different ways to "skin a cat" or change the way they treat Andy. So nothing is set in stone. We will meet with Dr. Moore and come up with a plan that is comfortable for all of us.

OUR THOUGHTS: We thought Andy would be on Flolan for the rest of life!!!!! Three months ago we were told to call our friends and family and prepare for the worst. We weren't sure that we would take him home from the hospital.

Does God still heal today??? We know He does and has. Every time we look at this blog or friends and family ask how Andy is doing it is a reminder of God's mighty, loving, and very personal care for us and Andy. We are simply amazed by God. He took a situation where there was no hope for Andy's heart to heal. No hope for his life and he healed him. Andy's life parrallel's our story of salvation. There was no hope for us our hearts were beyond repair and yet because of God's great love and mercy He sent his sonto live a perfect life on earth and yet suffer and die on the cross for our sin.... to save US!

Here are some updated pictures from Christmas with the little dude.