I spent much of the morning with the Tuttles and found baby Heath to be in a holding pattern. The doctors want to let him rest and continue on ECMO for the weekend and not even attempt to "cycle down" because he continues to tolerate the ECMO so well for now.
One challenge has been Heath's sedation. As he becomes accustomed to the sedation medications, he is more easily awakened by voices-especially his mom's! Yesterday he awoke and tried to "make a break for it" as Chris put it. Chris wanted to simultaneously cheer and calm him down! Their little fighter is still at it! So, they have changed the class of sedative drugs they are using to keep him adequately sedated while connected to the ECMO. He was "dancing" a little early this morning but was resting comfortably by mid-morning.
Because of the challenges with the sedation, and Heath's response to voices, the family and medical team are asking that only family be allowed to visit Heath. The extra voices continue to wake him and that is not in Heath's best interest as he continues to rest in hopeful anticipation of a transplant. The Tuttles appreciate your love and concern so very much and trust that folks will indeed honor their request.
They continue to wait in what has become a "holding pattern". So many of you continue to ask what you can do to help and some first steps have been taken towards establishing opportunities for folks to contribute financially to assist the Tuttle family. So, family friends who have been trying to figure out a way to help are working out establishing two options for giving.
Option 1
If you do not need a tax deductible option, a Custodial Account has been established in Heath's name by his grandmother Ella Strowbridge through the State Employees Credit Union. Checks may be made payable to "Heath Tuttle" and dropped off at any State Employee Credit Union branch or mailed driectly to:
Ella Strowbridge
514 Oak Bluffs
Pittsboro, NC 27312
Option 2
Cary Presbyterian Church (Carrie's home church) is in the final stages of creating a fund under the church's 503C status that will be a tax-deductible giving option. Information will be available in the next few days. I will post the information on the blog as soon as it becomes available.
We continue to wait, hope and pray for the Tuttle family we all love and especially for baby Heath.
Blessings,
"Gran" Sarah
Friday, December 12, 2008
Tuesday, December 9, 2008
Tuesday Holding Pattern
When I spoke with Carrie this afternoon, she said that today had been a frustrating one for the Tuttles and the doctors. The doctors have tried to wean Heath off of the ecmo machine without success. Their hope was to wean him off before his transplant but are realizing that Heath may need to remain on the ecmo until his surgery. The next couple of days they are going to give baby Heath a "break" and let him rest.Even though Heath is sedated, he still responds to the voices of mom and dad and wants to move around. This picture was taken on a brighter day- Chris's first day in the pulpit with the Westminster Presbyterian Chuch family. Now you know where Heath and Ella Brooks get their great smiles and energy from!
Carrie was exhausted after a frustrating day at the hospital but looking forward to having an evening at home with Ella Brooks. They continue to be in a holding pattern and pray that Heath will have his transplant surgery soon.
For now, the waiting continues....
Blessings, "Gran" Sarah
Monday, December 8, 2008
Stable Monday
Friends:
I spoke with Carrie and Chris this afternoon. They were encouraged that Heath was able to be off of the ecmo (hear/lung bypass) for about an 1 1/2 hours this morning. Heath did well for that time but did need to go back on the machine. While they would like to wean him completely off the ecmo as soon as possible, they are trying to be patient and go at the pace that Heath can tolerate.
That's all for now. I will update with more info as Heath's progress continues.
With much Hope as we wait.... "Gran" Sarah
I spoke with Carrie and Chris this afternoon. They were encouraged that Heath was able to be off of the ecmo (hear/lung bypass) for about an 1 1/2 hours this morning. Heath did well for that time but did need to go back on the machine. While they would like to wean him completely off the ecmo as soon as possible, they are trying to be patient and go at the pace that Heath can tolerate.
That's all for now. I will update with more info as Heath's progress continues.
With much Hope as we wait.... "Gran" Sarah
Sunday, December 7, 2008
Big Sister Ella Brooks
Big Sister Ella Brooks and her very own Christmas Tree in her very own room!
Advent Hope at its best.....
Blessings,
"Gran" Sarah
Call From Carrie Sunday Afternoon
This afternoon I received a call and email from Carrie. This is her latest update....
"Dear Friends--
We walked in this morning to the hospital to be somewhat blindsided--first by the fact that they were going to go ahead and start the "tests" to take Heath off the heart/lung machine and then a few minutes later (after my facebook status post) when we were told that there were some problems and they were not able to take him off after all. We were then led into a quick meeting with the surgeon and cardiologist to explain that they were worried a bit about his lung function but also that the synchronicity of his heart was not what they needed it to be. They were going to need to do a short surgical procedure to put different wires right into his heart to help it "fire" the way it was supposed to "fire." Needless to say, after such a good strong day yesterday, we felt like we had been hit by a 2x4.
They did the procedure and it was successful. He is doing just fine. This may actually set us closer to being able to get him off the ECMO (this is the heart/lung bypass). Right now we need his lungs to clear out a little more. If things continue to go smoothly this afternoon, they may try to start "weaning" him off the ECMO more slowly. They really would like to have him safely off ECMO before they do the heart transplant, but we realize that we have a way to go before we get there. Of course, if a heart became available, they would not turn it down, but we have to proceed as if there will be some time before that happens.
We have realized that this waiting room is a place where people come with so many stories, so many sorrows. We have talked with many of the people about how this feels like a "club" that no one ever wants to join, but somehow, there have been beautiful moments of care and grace for each other. The love, support and prayers from all of you have made such a difference for us in this crazy day to day roller coaster of emotion for us. Thank you. We love you.
OH YES--Many have asked about Ella Brooks and how she is doing. She is enjoying the days with all of her family--fingerpainting, hide and seeking, eating, playing with new friends and picking out a Christmas tree. She told us that she would like to have our family Christmas tree IN HER ROOM. She didn't get that, but got a small artificial one of her own, complete with lights and paper chains. She went with Mimi and Papa (Chris' parents) to Westminster (Chris' new church), and had a ball playing with the other children. She is in the bear-cub class Tuesday and Thursday mornings at the Westminster Preschool. She is constantly asking about baby Heath - most importantly making sure he is not alone. "Someone is with him, right?" she asks.
If you are ever in need of medical care, come on here to Duke. As terrifying as this is, we have felt so good about the care Heath is receiving, every step of the way. Doctors, nurses, specialists, nurse practitioners, respiratory therapists, and everyone one else. We are so grateful. Scared, but grateful."
May we continue to wait during this Advent with hope!- Blessings, "Gran" Sarah
"Dear Friends--
We walked in this morning to the hospital to be somewhat blindsided--first by the fact that they were going to go ahead and start the "tests" to take Heath off the heart/lung machine and then a few minutes later (after my facebook status post) when we were told that there were some problems and they were not able to take him off after all. We were then led into a quick meeting with the surgeon and cardiologist to explain that they were worried a bit about his lung function but also that the synchronicity of his heart was not what they needed it to be. They were going to need to do a short surgical procedure to put different wires right into his heart to help it "fire" the way it was supposed to "fire." Needless to say, after such a good strong day yesterday, we felt like we had been hit by a 2x4.
They did the procedure and it was successful. He is doing just fine. This may actually set us closer to being able to get him off the ECMO (this is the heart/lung bypass). Right now we need his lungs to clear out a little more. If things continue to go smoothly this afternoon, they may try to start "weaning" him off the ECMO more slowly. They really would like to have him safely off ECMO before they do the heart transplant, but we realize that we have a way to go before we get there. Of course, if a heart became available, they would not turn it down, but we have to proceed as if there will be some time before that happens.
We have realized that this waiting room is a place where people come with so many stories, so many sorrows. We have talked with many of the people about how this feels like a "club" that no one ever wants to join, but somehow, there have been beautiful moments of care and grace for each other. The love, support and prayers from all of you have made such a difference for us in this crazy day to day roller coaster of emotion for us. Thank you. We love you.
OH YES--Many have asked about Ella Brooks and how she is doing. She is enjoying the days with all of her family--fingerpainting, hide and seeking, eating, playing with new friends and picking out a Christmas tree. She told us that she would like to have our family Christmas tree IN HER ROOM. She didn't get that, but got a small artificial one of her own, complete with lights and paper chains. She went with Mimi and Papa (Chris' parents) to Westminster (Chris' new church), and had a ball playing with the other children. She is in the bear-cub class Tuesday and Thursday mornings at the Westminster Preschool. She is constantly asking about baby Heath - most importantly making sure he is not alone. "Someone is with him, right?" she asks.
If you are ever in need of medical care, come on here to Duke. As terrifying as this is, we have felt so good about the care Heath is receiving, every step of the way. Doctors, nurses, specialists, nurse practitioners, respiratory therapists, and everyone one else. We are so grateful. Scared, but grateful."
May we continue to wait during this Advent with hope!- Blessings, "Gran" Sarah
Saturday, December 6, 2008
Saturday report from Papa Bob
Papa Bob reports on Saturday:
"Baby Heath had a good day today-still completely sedated. Heart-lung machine and pacemaker doing their jobs. Everything but heart seems ok."
Blessings, "Gran" Sarah
"Baby Heath had a good day today-still completely sedated. Heart-lung machine and pacemaker doing their jobs. Everything but heart seems ok."
Blessings, "Gran" Sarah
Friday, December 5, 2008
Friday afternoon- Call from Chris
Friday afternoon greetings....
I just received a call from Chris. He wanted to touch bases with the latest on Heath's condition. The doctors have begun their attempts to wean Heath off of the heart/lung machine. Upon Chris's call, he had been off of the machine one hour with good results. The procedure to place the permanent wire/pacemaker device went very smoothly. Heath is officially on the transplant list. They are now faced with the reality that Heath will likely remain in the hospital until he receives his transplant.
As you can imagine, the stresses are many. One stress that is growing is the financial stress. The Tuttles are meeting with some financial advisors on Monday of next week to try to establish a fund that helps them deal with the short and long term expenses of this difficult ordeal. Of course as Presbyterians, they want to proceed "decently and in order". So, for those of you who continue to ask, "How can we help?", this might be the answer. They hope to know more next week. As you can imagine, this decision is one of many difficult ones for Chris and Carrie but one made after facing yet another difficulty reality of the costs of Heath's care and the daily "hospital living" for the family.
During this Advent season, we are learning the very real anguish of waiting...
Blessings, Sarah Beth
I just received a call from Chris. He wanted to touch bases with the latest on Heath's condition. The doctors have begun their attempts to wean Heath off of the heart/lung machine. Upon Chris's call, he had been off of the machine one hour with good results. The procedure to place the permanent wire/pacemaker device went very smoothly. Heath is officially on the transplant list. They are now faced with the reality that Heath will likely remain in the hospital until he receives his transplant.
As you can imagine, the stresses are many. One stress that is growing is the financial stress. The Tuttles are meeting with some financial advisors on Monday of next week to try to establish a fund that helps them deal with the short and long term expenses of this difficult ordeal. Of course as Presbyterians, they want to proceed "decently and in order". So, for those of you who continue to ask, "How can we help?", this might be the answer. They hope to know more next week. As you can imagine, this decision is one of many difficult ones for Chris and Carrie but one made after facing yet another difficulty reality of the costs of Heath's care and the daily "hospital living" for the family.
During this Advent season, we are learning the very real anguish of waiting...
Blessings, Sarah Beth
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