I spoke with Bob (Chris's father) this morning and he and Uncle Robert had stayed overnight with baby Heath. During the night, his heart rate became irregular and use of a temporary pacemaker became necessary. Today they are transitioning to a more permanent pacemaker.
The good new is that the echo cardiogram revealed improved heart function and good recovery from the heart "episode" earlier in the week. He will continue to be on the heart/lung machine for a few more days. The decision to wean him off will come when it is time. At this point, they are dealing with one decision at a time. Just as the doctors had told them, Heath would continue to experience "two steps forward and one step back" in this process. Yesterday was the "two steps forward" and last night and today have been the "one step back".
Ella Brooks is doing well and enjoys Playschool with the good folks at Westminster. Westminster continues to embrace the Tuttles and provide tremendous love, support and meals.
Your continued prayers and loving support are sustaining the Tuttle family. Carrie and Chris's parents, siblings, etc. continue to help them find their way through this difficult time. Thanks to all of you for your prayers and offers of help.
Advent Blessings,
"Gran" Sarah
Friday, December 5, 2008
Thursday, December 4, 2008
Stable
Genie (our Associate Pastor) visited with the Tuttles this morning. She said the doctors were very reassuring to Chris and Carrie this morning. Heath is responding well to the medications, his blood pressure has stablized and he continues to do well with the heart/lung bypass machine. Their goal is still to wean him off in the next 24+ hours.
We continue to wait and pray for Heath to receive the transplant he needs.....
Blessings, "Gran" Sarah Beth
We continue to wait and pray for Heath to receive the transplant he needs.....
Blessings, "Gran" Sarah Beth
Wednesday, December 3, 2008
Difficult News
The Tuttles have had a very difficult day. Heath was not feeling well so they took him into the doctor this morning. I called Carrie just to check in and she said she was with the doctor and that Heath was very ill. The doctors were not immediately sure what was wrong but they were anticipating hospitalization. Carrie said she would call me back once she found out more information.
About 4:30 p.m. I received a call from Ella, Carrie's mother, telling me that Heath was in the Pediatric Intensive Care Unit, was very seriously ill and asked me if I could come and stay with Ella Brooks while the family went to Duke's PICU. Of course I dropped everthing, headed to Carrie's home and Ron headed to Duke.
Ron was able to see the family and discovered that Heath's condition had changed very quickly and has been sedated and placed on a heart/lung bypass machine for the next few days in order to give his heart a "rest". The hope is that Heath can be weaned off of the heart/lung machine in a few days and they will consider a pacemaker in the days to come.
For now, the family is taking shifts staying with Heath and caring for Ella Brooks. Of course the family is worried, exhausted and overwhelmed with this difficult turn of events. Fortunately, I was able to spend an evening with Ella Brooks cooking, playing, reading, pretending and keeping her completely unaware of Heath's condition. Chris's parents, Bob & Pat arrived tonight in Durham ready to do whatever is needed.
The doctors are encouraging Chris & Carrie to go home tonight and get some sleep while they can. The coming days will be challenging and they will need what rest they can get tonight. Chris's sister, Sarah, is staying with Heath tonight so Chris and Carrie can try to sleep.
It is late, and everyone is indeed exhausted. As I learn more tomorrow, I will update the blog again. Please continue to pray in earnest for Heath as he weathers this storm and as they anxiously await a transplant....
Blessings, "Gran" Sarah
About 4:30 p.m. I received a call from Ella, Carrie's mother, telling me that Heath was in the Pediatric Intensive Care Unit, was very seriously ill and asked me if I could come and stay with Ella Brooks while the family went to Duke's PICU. Of course I dropped everthing, headed to Carrie's home and Ron headed to Duke.
Ron was able to see the family and discovered that Heath's condition had changed very quickly and has been sedated and placed on a heart/lung bypass machine for the next few days in order to give his heart a "rest". The hope is that Heath can be weaned off of the heart/lung machine in a few days and they will consider a pacemaker in the days to come.
For now, the family is taking shifts staying with Heath and caring for Ella Brooks. Of course the family is worried, exhausted and overwhelmed with this difficult turn of events. Fortunately, I was able to spend an evening with Ella Brooks cooking, playing, reading, pretending and keeping her completely unaware of Heath's condition. Chris's parents, Bob & Pat arrived tonight in Durham ready to do whatever is needed.
The doctors are encouraging Chris & Carrie to go home tonight and get some sleep while they can. The coming days will be challenging and they will need what rest they can get tonight. Chris's sister, Sarah, is staying with Heath tonight so Chris and Carrie can try to sleep.
It is late, and everyone is indeed exhausted. As I learn more tomorrow, I will update the blog again. Please continue to pray in earnest for Heath as he weathers this storm and as they anxiously await a transplant....
Blessings, "Gran" Sarah
Sunday, November 30, 2008
Turkey Tales
No big updates to report except a funny Turkey Tale from baby Heath. I was out of town for the Thanksgiving holiday and received a call with Carrie's caller ID. I of course was concerned knowing that we had not planned on talking again until after the Thanksgiving weekend. When I answered I soon discoverd that this was not the "usual call". I quickly called Carrie back to discover that Heath was playing with Mommy's phone and decided to make a phone call to his Gran Sarah. Of course, I think he missed me but I am open to the possibility that he simply pushed a button by accident!
I expect to talk to Carrie the first of the week for an update unless Heath calls me sooner than that!
Blessings, "Gran Sarah"
I expect to talk to Carrie the first of the week for an update unless Heath calls me sooner than that!
Blessings, "Gran Sarah"
Monday, November 24, 2008
Thanksgiving
I spoke with Carrie today and they are planning on spending the Thanksgiving week with her mom and family close to home. They are looking forward to time together as the extended family arrives this week.
The Tuttles have confirmed the decision to have Heath's transplant at Duke although they were quick to say what wonderful care they received at UNC. Duke seems to be the best fit for their unique needs and they feel very good about their decision.
Baby Heath had some bloodwork done today which he strongly protested to! He goes back on Monday for an electrocardiogram, chest x-ray and to finalize the additional bloodwork needed while under light sedation. I think Heath will approve! The transplant process is moving along nicely but there are so many important details to finalize. They are hoping that by Dec. 4 or 5 his name will officially be placed on the transplant list. While Heath's need for a transplant is urgent, they have the "luxury" of an otherwise healthy baby and the time to thoroughly prepare for his upcoming transplant.
They continue to have their "ups and downs" as the reality of the transplant takes hold but they draw great strength from your love, prayers and support. The abundance of God's grace continues to surprise and sustain them.
Finally, Carrie gave me permission to post these sweet pictures of some family time! The Tuttles wish everyone a happy and healthy Thanksgiving.
Blessings, "Gran" Sarah
Friday, November 21, 2008
In an email from Carrie, she updates us with the following:
Our world has been turned upside down by Heath's sudden diagnosis two Thursdays ago. We have grieved, moved to Durham, cried, laughed, talked, prayed, gone to doctors' appointments, done research, and so much more...
We have been so deeply moved by the messages, cards, gifts, food, prayers and love of so many people--even people we don't even know. One of these days we will share with you some of the moments of unbelievable grace in the midst of heartache. some is a little too raw right now.
We are coming back to the world--looking to start living in the "new normal" that we find ourselves in. And I wanted to say thank you to you all and give you a brief update.
We are in the final stages of deciding which hospital to use--Duke or UNC. Both of which have really good pediatric heart centers and we had great care at UNC already. We were also really impressed with the program at Duke. Our boy should be on the transplant list ASAP. After that, it is anyone's guess as to how much time it will take. I do know that there aren't any other children under one in NC right now who are on the list, though. They estimate that it won't be longer than 6 months, and probably sooner. We'll start making those preparations soon.
Chris starts his new call as Pastor of Westminster Pres. officially on Monday. We have been so touched by the outpouring of care from this wonderful congregation, understanding even more why God has brought us to one another. We are excited to get started! (well, chris is, and I will look forward to driving him a little crazy with off-hand advising!) Ella Brooks will also start at Westminster's School for Young Children the Tuesday after Thanksgiving.
As you can imagine, it has been tough for us to be able to return phone calls and messages in the craziness of all this hospital/doctor stuff, moving and starting a new call. We hope to catch up with many folks soon!
Our world has been turned upside down by Heath's sudden diagnosis two Thursdays ago. We have grieved, moved to Durham, cried, laughed, talked, prayed, gone to doctors' appointments, done research, and so much more...
We have been so deeply moved by the messages, cards, gifts, food, prayers and love of so many people--even people we don't even know. One of these days we will share with you some of the moments of unbelievable grace in the midst of heartache. some is a little too raw right now.
We are coming back to the world--looking to start living in the "new normal" that we find ourselves in. And I wanted to say thank you to you all and give you a brief update.
We are in the final stages of deciding which hospital to use--Duke or UNC. Both of which have really good pediatric heart centers and we had great care at UNC already. We were also really impressed with the program at Duke. Our boy should be on the transplant list ASAP. After that, it is anyone's guess as to how much time it will take. I do know that there aren't any other children under one in NC right now who are on the list, though. They estimate that it won't be longer than 6 months, and probably sooner. We'll start making those preparations soon.
Chris starts his new call as Pastor of Westminster Pres. officially on Monday. We have been so touched by the outpouring of care from this wonderful congregation, understanding even more why God has brought us to one another. We are excited to get started! (well, chris is, and I will look forward to driving him a little crazy with off-hand advising!) Ella Brooks will also start at Westminster's School for Young Children the Tuesday after Thanksgiving.
As you can imagine, it has been tough for us to be able to return phone calls and messages in the craziness of all this hospital/doctor stuff, moving and starting a new call. We hope to catch up with many folks soon!
Monday, November 17, 2008
When I called Carrie this afternoon she was enjoying a wonderful afternoon at the playground with Ella Brooks! The were having fun and meeting new friends. I could hear Ella Brooks giggling in the background. Ella Brooks even had a moment in her busy schedule to speak to "Gran Sarah" and fill me in on the important playground activities! Heath and Chris were having some "guy" time at home!
Heath's doctor's appointment today was not as involved as they had anticipated but the doctor was pleased that his breathing had much improved since his initial exam at UNC. With all of the details to coordinate among doctors, procedures, insurance, etc. the labs and consultations should occur later this week. They are hopeful to have Heath on the transplant list as soon as Monday, November 24 or Monday, December 1. In anticipation of the transplant, the doctors are encouraged that baby Heath is physically as well as he could possibly be with this diagnosis. That is very good news!
They have done much research on the transplant procedure and have discovered not only the importance of having a skilled surgical team but the necessity of having skilled post-surgical care. So, just as a precaution, and with great support from their UNC team of doctors, they are seeking a second opinion from Duke later this week. As you would expect, they want to make the best possible decision for Heath's surgery, successful recovery and be reassured they are moving forward well informed.
Finally, as Carrie opened the mailbox today, she and Chris were both overcome with emotion and gratefulness for the outpouring of cards, letters, gift cards, notes, etc. Carrie said in the moments when she does not feel very strong, she gives thanks for the tremendous strength she gains from each of you and your expressions of love and concern. They are acutely aware that God is indeed at work through the love and support of those they know and even those they have never met. They are most thankful they do not have to make this journey alone.
That's all for now. I'll update more later this week.
Blessings, "Gran Sarah"
Heath's doctor's appointment today was not as involved as they had anticipated but the doctor was pleased that his breathing had much improved since his initial exam at UNC. With all of the details to coordinate among doctors, procedures, insurance, etc. the labs and consultations should occur later this week. They are hopeful to have Heath on the transplant list as soon as Monday, November 24 or Monday, December 1. In anticipation of the transplant, the doctors are encouraged that baby Heath is physically as well as he could possibly be with this diagnosis. That is very good news!
They have done much research on the transplant procedure and have discovered not only the importance of having a skilled surgical team but the necessity of having skilled post-surgical care. So, just as a precaution, and with great support from their UNC team of doctors, they are seeking a second opinion from Duke later this week. As you would expect, they want to make the best possible decision for Heath's surgery, successful recovery and be reassured they are moving forward well informed.
Finally, as Carrie opened the mailbox today, she and Chris were both overcome with emotion and gratefulness for the outpouring of cards, letters, gift cards, notes, etc. Carrie said in the moments when she does not feel very strong, she gives thanks for the tremendous strength she gains from each of you and your expressions of love and concern. They are acutely aware that God is indeed at work through the love and support of those they know and even those they have never met. They are most thankful they do not have to make this journey alone.
That's all for now. I'll update more later this week.
Blessings, "Gran Sarah"
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