Found out yesterday:
Open-heart surgery #2, the Bi-directional Glenn, is actually on the books and scheduled even LATER than what was quoted to us in January, and MUCH MUCH later than what was told to us this past Friday regarding the recent post mentioning sometime in March.
Drum roll, please......
Pre-op: Monday, April 28th, 10am
Surgery: Tuesday, April 29th, time TBA
After a surge of additional serious RSV cases over the weekend, our surgeon, Dr. Lofland, made a big change regarding Tyler's scheduling status. During last Friday's conference he said, "Surgery is a go-ahead, get him on the books as soon as possible." However, when I got the phonecall, plans changed. He had given a hand written note to Veronica, the lady who does the scheduling, that said, "Tyler Breuer, Bi-Directional Glenn, for end of April."
I know you're thinking, "Wow! That's so far away; is he going to make it?" That was our first reaction as well. We are told he should be able to, but if for some reason his oxygen saturation level drops below 72, surgery will be moved up.
It is factual, that the ultimate reason why surgery is so far away, is that RSV in the KC Metro isn't forecasted to clear until April 20th-ish. It just came so late in the season this year. Unfortunately, CMH is treating many of these cases, and it is delaying the summer '07 babies, born HLHS post-Norwood, out much longer than they should be. Tyler isn't the only one waiting for the Glenn, his HLHS buddy Garrett who lives in Olathe (born Aug. 14, 2007) also needs surgery #2. We pray for his health to hold up and withstand the wait as well.
*********************************************************************************
Update from today:
Tyler went to Surgery Clinic this morning to have his Mickey Button changed out. Can you believe three months have past since the first one was put in? I sure can't! He did well. The nurse who changed it is taking precautionary measures to fight the possible beginnings of an infection, by putting him on a round of antibiotics... because he showed a little bit of pink near the stoma site and also for how tender it still is after three months. Even after all that, she says it is completely normal for this to appear in the early months, as his body is trying to fight off a foreign object in an organ not typically exposed to air and the environment.
Then on our way home, we stopped by our Pediatrician's office to get his February Synagis shot. (a shot that helps prevent him from getting RSV) Here's a link about Synagis: http://www.synagis.com/how-synagis-works.aspx
I will keep posting about his current health and doctor appointments. Thank you for checking in!
Thursday, February 28, 2008
Saturday, February 23, 2008
Quote of the Week
The Chosen Mothers
Most women become mothers by accident, some by choice and planning, a few by social pressures, and a couple by habit.
Did you ever wonder how mothers of children with a life threatening illness are chosen?
Somehow, I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger...
"Beth Armstrong, son, Patron Saint Matthew"
"Marjorie Forrest, daughter, Patron Saint Cecilia"
"Carrie Rutledge, twins, Patron Saint Gerard."
Finally, He passes a name to an angel and says, "Give her a child with cancer."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel."
"But, does she have patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it. I watched her today," said God. "She has that feeling of self-independence that is so rare and necessary in a mother. You see, the child I'm going to give her has it's own world. She will have to make it live in her world and that's not going to be easy."
"But Lord, I don't think she believes in you," said the angel.
"No worries, I can fix that. This mother is the perfect choice. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from this child occasionally, she'll never survive. Yes, here is the woman I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step just ordinary. I will permit her to see clearly the things I see... ignorance, cruelty, prejudice... and allow her to rise above them."
"And what about her patron saint," asks the angel with his pen poised in mid-air.
God smiles and says..."A mirror will suffice." -Erma Bombeck
Reflection:
This message is good at relieving some of my anger at all that we are enduring living with Tyler's Congenital Heart Defect. I know that if God asked me if I wanted Tyler this way or not to have him at all... I wouldn't have hesitated, taking every chance I get to love him full-heartedly. I am so thankful that I am the 'chosen mother' able to care for him.
Unfortunately, since our life got turned upside down in August 2007, neither Andrew or I have a moment to catch our breath, much less take much time for ourselves as a couple. I guess that we should try to take just a few minutes each day and remember who we were before this nightmare began. We should also attempt to realize that someday in the not so distant future, things will slow down and we'll be able to get somewhat grounded again.
Most women become mothers by accident, some by choice and planning, a few by social pressures, and a couple by habit.
Did you ever wonder how mothers of children with a life threatening illness are chosen?
Somehow, I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger...
"Beth Armstrong, son, Patron Saint Matthew"
"Marjorie Forrest, daughter, Patron Saint Cecilia"
"Carrie Rutledge, twins, Patron Saint Gerard."
Finally, He passes a name to an angel and says, "Give her a child with cancer."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel."
"But, does she have patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it. I watched her today," said God. "She has that feeling of self-independence that is so rare and necessary in a mother. You see, the child I'm going to give her has it's own world. She will have to make it live in her world and that's not going to be easy."
"But Lord, I don't think she believes in you," said the angel.
"No worries, I can fix that. This mother is the perfect choice. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from this child occasionally, she'll never survive. Yes, here is the woman I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step just ordinary. I will permit her to see clearly the things I see... ignorance, cruelty, prejudice... and allow her to rise above them."
"And what about her patron saint," asks the angel with his pen poised in mid-air.
God smiles and says..."A mirror will suffice." -Erma Bombeck
Reflection:
This message is good at relieving some of my anger at all that we are enduring living with Tyler's Congenital Heart Defect. I know that if God asked me if I wanted Tyler this way or not to have him at all... I wouldn't have hesitated, taking every chance I get to love him full-heartedly. I am so thankful that I am the 'chosen mother' able to care for him.
Unfortunately, since our life got turned upside down in August 2007, neither Andrew or I have a moment to catch our breath, much less take much time for ourselves as a couple. I guess that we should try to take just a few minutes each day and remember who we were before this nightmare began. We should also attempt to realize that someday in the not so distant future, things will slow down and we'll be able to get somewhat grounded again.
Day Four, Post Cath & Balloon
Tyler is truckin' along and is enjoying life back at home with his noisy, rambunctious older brother! His chest seems to not be as sore anymore. Well, at least he is tolerating me picking him up under his armpits again.
Pam Finn, our RN in the Cardiac Clinic, called yesterday to inform us of what was discussed during Friday's conference with Ty's surgeon, CV nurses, and panel of cardiologists. She told me that a lady named Veronica will be calling early next week to schedule Tyler for surgery #2 sometime in March. I will post again once he's on the books for the Glenn to let everyone know the date. Again, this is MUCH sooner than we have been told in the past. But it's for the best, I suppose.
So true is the saying "the best laid plans of mice and men often go awry." No matter how well you plan something, always expect the unexpected; in other words, just because you think you've done all you can for something to go right....you better always have a plan B to fall back on.
As much as I don't want him to ever go back to CMH, I know this is what has to be done in order for him to live. I don't want to see him in pain, struggle for life, or watch him lay restless in a hospital bed. God grant me the strength to remain poised and peaceful as we approach the future weeks of my son's journey.
Pam Finn, our RN in the Cardiac Clinic, called yesterday to inform us of what was discussed during Friday's conference with Ty's surgeon, CV nurses, and panel of cardiologists. She told me that a lady named Veronica will be calling early next week to schedule Tyler for surgery #2 sometime in March. I will post again once he's on the books for the Glenn to let everyone know the date. Again, this is MUCH sooner than we have been told in the past. But it's for the best, I suppose.
So true is the saying "the best laid plans of mice and men often go awry." No matter how well you plan something, always expect the unexpected; in other words, just because you think you've done all you can for something to go right....you better always have a plan B to fall back on.
As much as I don't want him to ever go back to CMH, I know this is what has to be done in order for him to live. I don't want to see him in pain, struggle for life, or watch him lay restless in a hospital bed. God grant me the strength to remain poised and peaceful as we approach the future weeks of my son's journey.
Wednesday, February 20, 2008
Today's Update: Just arrived back home.
It's 5:20pm:
We arrived home tonite, with Tyler, at 5:00pm.
He is sound asleep in his swing. Boy did he miss it!
Results from his morning echo today came in fine. Enough so, that the doctors decided to begin writing discharge papers around 2:00pm. His oxygen saturation levels are significantly lower now than they were before the catherization and balloon. However, much to our surprise, that is what was to be expected, because now, more blood is able to flow to his extremities and lower body. Whereas before the balloon, his lungs were receiving more oxygenated blood due to the passageway in his aortic valve being constricted with scar tissue. Make sense?
So we're home. He has a HORRID junky cough from the ventilator, but his lungs as of right now sound clear. The ventilator just disrupts so many things in the airway and causes so much swelling that it's almost impossible for the cough not to happen. It is especially worse in Tyler's case, because he takes no liquid by mouth. If he did, water, juice, etc. would keep it moist and would encourage and support quicker healing.
Now, Andrew and I are just praying that he didn't catch any weird sickness or RSV, or croup crap during his 32+ hour stay. We are doing our best to keep him well so we can go ahead with the second open heart sometime in the next 4/5 weeks.
We arrived home tonite, with Tyler, at 5:00pm.
He is sound asleep in his swing. Boy did he miss it!
Results from his morning echo today came in fine. Enough so, that the doctors decided to begin writing discharge papers around 2:00pm. His oxygen saturation levels are significantly lower now than they were before the catherization and balloon. However, much to our surprise, that is what was to be expected, because now, more blood is able to flow to his extremities and lower body. Whereas before the balloon, his lungs were receiving more oxygenated blood due to the passageway in his aortic valve being constricted with scar tissue. Make sense?
So we're home. He has a HORRID junky cough from the ventilator, but his lungs as of right now sound clear. The ventilator just disrupts so many things in the airway and causes so much swelling that it's almost impossible for the cough not to happen. It is especially worse in Tyler's case, because he takes no liquid by mouth. If he did, water, juice, etc. would keep it moist and would encourage and support quicker healing.
Now, Andrew and I are just praying that he didn't catch any weird sickness or RSV, or croup crap during his 32+ hour stay. We are doing our best to keep him well so we can go ahead with the second open heart sometime in the next 4/5 weeks.
Day two, following Cath procedure.
It's almost noon on Feb. 20th, 2008.
Tyler was moved up to 4S close to 11pm last night. He has remained rather stable overnight, however, there has been no talk of a possible discharge today...
Since moving to 4S, he's tolerated full feedings again. He also went in around 10:30am today for an echo - checking heart function and yesterday's balloon procedure. We haven't received it's results yet.
I will update again as new information is provided.
Love you all!
Kathleen
Tyler was moved up to 4S close to 11pm last night. He has remained rather stable overnight, however, there has been no talk of a possible discharge today...
Since moving to 4S, he's tolerated full feedings again. He also went in around 10:30am today for an echo - checking heart function and yesterday's balloon procedure. We haven't received it's results yet.
I will update again as new information is provided.
Love you all!
Kathleen
Tuesday, February 19, 2008
Cath & Balloon Update
It's 4:30pm on Feb. 19th, 2008...
I'm sure everyone is happy to finally be reading something!
Here it goes:
Off to an interesting start... Andrew and I arrived at CMH today at 8:30am to be admitted for his procedure at 10am, and were told around 9:30am that the Cath lab computers were down. So the nurses prepared us by saying today's procedure might be canceled. However, at the time, there were computer technicians working on them trying to get them fixed. It was during Tyler's interview with the anesthesiologist around 10:15am when our Cath nurse informed us the computers were up and running. After our visit and consent with Dr. Kaine, the cardiologist on staff today in the Cath Lab, Tyler was off to prep for the heart cath and balloon around 11am. The Cath nurse informed us she would be out in about an hour to give us an update regarding his progress.
So... she came out... AND we received VERY disheartening news. During induction of the anesthesia meds, Tyler coded twice. (although his heart rate never completely stopped, the doctors and nurses followed exact protocol for a real code blue. It is documented in his chart as a 'Mini-Code Blue') After the dose of fentanyl, his heart rate dropped from the 120's to somewhere in the low 50's. Dr. Kaine did chest compressions and they gave him a dose of epinephrine. About one minute later, his heart rate dropped again to the low 60's. So... another round of chest compressions and another dose of epinephrine. This time, Tyler stabilized with his heart rate remaining around 110. Apparently the reason he 'mini-coded' was because his ionized calcium was very low. Anyhow, Dr. Kaine felt confident enough to continue with the Cath - and if cath portion went well, they were going to go forward with the balloon. It ended up that the cath part went fine and he was successful with the balloon. Dr. Kaine was apparently happy with it's results.
Tyler's case will be presented to the board of cardiologists, cardiac surgeons and CV nurses this Friday. We are supposed to receive a phonecall late Friday or sometime early next week to discuss getting on the calendar for his next open heart surgery, the Glenn.
Because Tyler coded in the Cath lab, we were unable to recover in a room on 4 Sutherland. Instead, we are spending a night or two in the PICU so he can be monitored very closely. We are attemping to start feedings again thru the g-tube. So far, he didn't handle the first feeding very well.
Thank you for thinking of him today. Andrew and I were wishing for a quick stay, hopefully Tyler can show them he's strong enough to go home sometime tomorrow, like what was originally planned. But, right now, his health and heart is in God's hands. All we can do is pray.
I'm sure everyone is happy to finally be reading something!
Here it goes:
Off to an interesting start... Andrew and I arrived at CMH today at 8:30am to be admitted for his procedure at 10am, and were told around 9:30am that the Cath lab computers were down. So the nurses prepared us by saying today's procedure might be canceled. However, at the time, there were computer technicians working on them trying to get them fixed. It was during Tyler's interview with the anesthesiologist around 10:15am when our Cath nurse informed us the computers were up and running. After our visit and consent with Dr. Kaine, the cardiologist on staff today in the Cath Lab, Tyler was off to prep for the heart cath and balloon around 11am. The Cath nurse informed us she would be out in about an hour to give us an update regarding his progress.
So... she came out... AND we received VERY disheartening news. During induction of the anesthesia meds, Tyler coded twice. (although his heart rate never completely stopped, the doctors and nurses followed exact protocol for a real code blue. It is documented in his chart as a 'Mini-Code Blue') After the dose of fentanyl, his heart rate dropped from the 120's to somewhere in the low 50's. Dr. Kaine did chest compressions and they gave him a dose of epinephrine. About one minute later, his heart rate dropped again to the low 60's. So... another round of chest compressions and another dose of epinephrine. This time, Tyler stabilized with his heart rate remaining around 110. Apparently the reason he 'mini-coded' was because his ionized calcium was very low. Anyhow, Dr. Kaine felt confident enough to continue with the Cath - and if cath portion went well, they were going to go forward with the balloon. It ended up that the cath part went fine and he was successful with the balloon. Dr. Kaine was apparently happy with it's results.
Tyler's case will be presented to the board of cardiologists, cardiac surgeons and CV nurses this Friday. We are supposed to receive a phonecall late Friday or sometime early next week to discuss getting on the calendar for his next open heart surgery, the Glenn.
Because Tyler coded in the Cath lab, we were unable to recover in a room on 4 Sutherland. Instead, we are spending a night or two in the PICU so he can be monitored very closely. We are attemping to start feedings again thru the g-tube. So far, he didn't handle the first feeding very well.
Thank you for thinking of him today. Andrew and I were wishing for a quick stay, hopefully Tyler can show them he's strong enough to go home sometime tomorrow, like what was originally planned. But, right now, his health and heart is in God's hands. All we can do is pray.
Thursday, February 14, 2008
Update from today's Cardiologist Appointment
Tyler had an echo today. The nurses finally got a very good picture of his aortic arch. It was made known to us that it is extremely narrowed due to built up scar tissue from the Norwood surgery and that he will need his Heart Catherization procedure MUCH sooner than we expected. To the tune of it being scheduled for the morning of this upcoming Tuesday, Feb. 19th. During the Heart Cath, they will also be ballooning the aortic arch to open it back up. We will be spending the night at CMH regardless of how well he does during the procedure. After he has the Cath and Balloon, we were told that he will be able to make it another 4-6 weeks before we go for the Glenn surgery...which still puts us at the end of March, very beginning of April. If you are reading this, please keep us in your thoughts and prayers on Tuesday that everything is smooth and uneventful.
Thursday, February 7, 2008
Tuesday, February 5, 2008
2008 Heart Walk!
On May 31st, Andrew and I will be walking in honor of our son, Tyler, at this year's Greater KC Heart Walk, teamed with others from our Congenital Heart Defects Families support group.
Everyone knows someone affected by a congenital heart defect, heart disease or stroke. For those we love, we felt it was our calling to involve ourselves in this cause. We have set a personal goal to raise funds for the American Heart Association and need your help to reach it. We are raising critical dollars for heart disease and stroke research and education.
You can help us reach our goal by making a donation online. Just click on the white Heart Walk logo found on the right hand side of this webpage and you will be taken directly to our personal donation page. Once there, you can make a secure online credit card donation.
The American Heart Association's online fundraising website has a minimum donation amount of $25.00. If you prefer to donate less or by check, you can do so by sending a check directly to us made payable to the American Heart Association. Don't hesitate to ask us questions, we'd be happy to answer them.
All donations are completely tax deductible and you will receive a donation receipt immediately after making your online donation.
Additionally, if you have friends, family or co-workers who you think would kindly make a donation towards this cause, please feel free to forward Tyler's donation page to them. We appreciate your thoughtfulness!
Your donation will help fight our nation’s No. 1 and No. 3 killers—heart disease and stroke. You are making a difference.
Thank you SO much!
Everyone knows someone affected by a congenital heart defect, heart disease or stroke. For those we love, we felt it was our calling to involve ourselves in this cause. We have set a personal goal to raise funds for the American Heart Association and need your help to reach it. We are raising critical dollars for heart disease and stroke research and education.
You can help us reach our goal by making a donation online. Just click on the white Heart Walk logo found on the right hand side of this webpage and you will be taken directly to our personal donation page. Once there, you can make a secure online credit card donation.
The American Heart Association's online fundraising website has a minimum donation amount of $25.00. If you prefer to donate less or by check, you can do so by sending a check directly to us made payable to the American Heart Association. Don't hesitate to ask us questions, we'd be happy to answer them.
All donations are completely tax deductible and you will receive a donation receipt immediately after making your online donation.
Additionally, if you have friends, family or co-workers who you think would kindly make a donation towards this cause, please feel free to forward Tyler's donation page to them. We appreciate your thoughtfulness!
Your donation will help fight our nation’s No. 1 and No. 3 killers—heart disease and stroke. You are making a difference.
Thank you SO much!
Subscribe to:
Posts (Atom)
