Right now, Caleb is undergoing an EEG. Please keep him in prayer.
Pray specifically that 1) he would remain still for the test, and 2) that his brain activity would be normal.
Thanks so much.
Tuesday, December 29, 2009
Sunday, December 06, 2009
Batman!
day to a medical center. He has to have it on for three weeks
straight! Within the first two days, he already broke the clip on the
case!
He's also looking a lot like Batman!
Tuesday, November 24, 2009
Follow-up
The vomitting was not related to his heart, evidently. Right now, he
is at his cardiologist appointment.
is at his cardiologist appointment.
Thanks for your prayers.
Sent from my iPhone
Monday, November 23, 2009
Caleb Sick
Wr had to pick up Caleb from school this morning because he had
vomitted three times.
vomitted three times.
It could be a virus, of course. Or it could be related to his heart.
We will be visiting doctors today to hopefully find out.
The Lord is good and His mercy endures forever.
Sent from my iPhone
Sunday, November 08, 2009
Coming Home
Caleb spent the night in the cardiac unit but is now coming home with good news.
We will continue to follow up with his cardiologist.
Thank you for your prayers!
We will continue to follow up with his cardiologist.
Thank you for your prayers!
Saturday, November 07, 2009
Caleb on his way to MCH
After speaking with a couple doctors tonight, we decided it was best to take Caleb to the ER at Miami Children's Hospital. His heart rate was in the high 40's while he was sleeping.
Please pray:
1. That Caleb would not have PLE.
2. That he would be brave and strong when he gets his "pinchies" (needle pokes).
3. That God would use him.
4. Strength and discernment for us.
Please pray:
1. That Caleb would not have PLE.
2. That he would be brave and strong when he gets his "pinchies" (needle pokes).
3. That God would use him.
4. Strength and discernment for us.
Thursday, November 05, 2009
Possible PLE
Thank you for your prayers for Caleb. It turns out that he may have Protein-Losing Enteropathy, or PLE. Diagnosis is still pretty preliminary, and of course we hope it is not correct. We've read about PLE and have known from the beginning that it could be one of the side effects.
We are so blessed that so many pray for him. We are still waiting Halter results.
Check out this article for more info.
Summarized here from above article:
PLE after Fontan operation is a puzzling disease. At the moment, treatment options are limited, but include:
1) general symptomatic relief by using diuretics and changes in diet
2) treatment at the intestinal level with steroids or heparin infusion
3) treatment at the cardiac level by mproving hemodynamics either with medicine (captopril, enalapril), or with a fenestration or a heart transplant.
Still unknown is the precise mechanism of this disease and why it afflicts some children and not others. Further research into the cause of PLE is needed. Once the cause is better understood, more effective treatment options may then be used for this troublesome illness.
We are so blessed that so many pray for him. We are still waiting Halter results.
Check out this article for more info.
Summarized here from above article:
PLE after Fontan operation is a puzzling disease. At the moment, treatment options are limited, but include:
1) general symptomatic relief by using diuretics and changes in diet
2) treatment at the intestinal level with steroids or heparin infusion
3) treatment at the cardiac level by mproving hemodynamics either with medicine (captopril, enalapril), or with a fenestration or a heart transplant.
Still unknown is the precise mechanism of this disease and why it afflicts some children and not others. Further research into the cause of PLE is needed. Once the cause is better understood, more effective treatment options may then be used for this troublesome illness.
Wednesday, November 04, 2009
Update
Would you please take a moment today and pray for Caleb. We took him to the cardiologist today after noticing that he hasn't been himself lately. The doctor said that he is having arythmias and his heart beat is low (in the 50's when it should be in the 70's).
His liver is not enlarged anymore, though. We are taking him off of Lasik.
Please pray for wisdom as we have a plane trip planned for next week.
Saturday, October 10, 2009
Thursday, October 08, 2009
Monday, August 17, 2009
Sunday, August 16, 2009
Monday, August 10, 2009
Sunday, August 09, 2009
Monday, August 03, 2009
Tuesday, July 28, 2009
Update
Caleb just left the cardiologist office. His post-fontan check-up was
perfect. Dr. Mas is thrilled at his progress and recovery. Caleb will
still be on LASIK to avoid plural effusions and his physical activity
still needs to be limited.
perfect. Dr. Mas is thrilled at his progress and recovery. Caleb will
still be on LASIK to avoid plural effusions and his physical activity
still needs to be limited.
Thank you Lord for all You are doing.
Sent from my iPhone
Sunday, July 05, 2009
Angela is resting in the arms of her Maker
Sent from my iPhone
Begin forwarded message:
From: "Claudia Arango" <arangoc@globaloutreach.org>
Date: July 5, 2009 4:53:17 PM EDT
To: "Claudia Arango" <arangoc@globaloutreach.org>
Subject: Angela is resting in the arms of her Maker
Dear Friends, It is with a heart filled with lots of emotions I shared that our precious Angela has passed away this Sunday morning. I will miss this sweet little girl but I rejoice that she is well and resting in the arms of Jesus. The suffering, neglect and deprivation she went through here on earth by those who instead should have treasured, cared and loved her has come to an end. I knew that only Jesus had the power to heal her and keep her with us and I knew that I needed to leave that up to Him, knowing that His ways are greater than our ways. My responsability was to be His hands to her and show her our Father's love for her as I had the opportunity to care for her. Oh Lord Jesus how greatful I am for that oportunity you gave me for that short period of time. I am greatful for every chance I had to feed her, to hug her, to comfort her and to love on her. I am greatful for the times I saw my girls seating by her side either reading her a book or simply holding her hand, The day before she went into the hospital I danced with her in my arms to the worship music my daughter Hope played with her guitar for us. Thank you Jesus for those sweet times with Angela! She touched my life and the life of my girls and also the lives of many as they felt drawn with love to pray for her. The many emails I received after sending news on Angela were a displayed of God's love among His people. E mails filled with encouragement, concerns and offers to help, and love. Thank you to all of you for your prayers during this time and we all know that this is not the end as we have the hope one day we will see Angela again in our heavenly home.Blessed be the name of the Lord!In His Service,Claudia
Saturday, July 04, 2009
Friday, July 03, 2009
Please pray for Angela
I received this email from a missionary that we know that works at an orphanage in Africa. Please pray for this situation.
Dear Friends, I just want to warn you about the picture. This is Angela the 6 year old girl whom I have been caring for for the last 3 or 4 days(I lost track) It has been extremely heart breaking. She weights 20 pounds. As you can see in the picture she is just bones like the kids we sometimes see on tv from Africa. Her story is so sad and I will share it later. I've been pouring myself into this little girl because she has touched my heart in a special way. I have been having to feed her formula every two hours. She is extremely weak. Tuesday Night I ended up at the hospital with her to give her a blood transfusion because she was completely out of blood. Her eye lid was white as a paper so were her hands. She improved a bit until this afternoon when she began to not look good at all. We have a team here now and there is a pediatrician. After calling her to come and checked Angela she confirmed that she was not doing good and that she was about to have a heart failure. So I grabbed her as quick as i could and we rushed her to the hospital. After 10 intents of getting her vein to put her on an IV and not only give her fluids but give her more blood doctors opted for a more difficult procedure which is to get the needle in the bone and give the fluids and blood through it. Doctors even asked me to stepped out because it was going to be extremelly difficult to see her go through the procedure. Little Angela is now at the hospital batteling for her life. Doctors were able to get the procedure done and she is getting blood and fluids and is as well on oxigen. One of the doctors told me that her condition is very delicate and really only a miracle can save her life. Please pray for her. I know God's will is perfect and whatever He chooses is good and well. But my heart truly wishes for Him to spare her life so that she may have another chance to be loved and cared how she should have been so for these 6 years fo her life.Please feel free to pass this on to others to pray for her. We, children, staff and missionaries at GSF appreciate your prayers on behalf of little Angela.Love,Claudia
Thursday, July 02, 2009
All Great!
Caleb had a great appointment at the cardiologist today. Next
appointment is in three weeks.
appointment is in three weeks.
Sent from my iPhone
Sunday, June 28, 2009
Chest Tube Hole Bleeding
Caleb showed me some blood stains on his pajamas a little while ago.
It turns out that his chest tube opening is bleeding. Actually we've
noticed that it as been bleeding on and off for awhile. Perhaps they
took out the stitches too soon. We're in the phone with a cardiac
nurse friend as we speak.
It turns out that his chest tube opening is bleeding. Actually we've
noticed that it as been bleeding on and off for awhile. Perhaps they
took out the stitches too soon. We're in the phone with a cardiac
nurse friend as we speak.
Sent from my iPhone
Sunday, June 21, 2009
Friday, June 19, 2009
Done
We got the thumbs up from the doctor to leave Philly! Now we work on
changing our travel arrangements...
changing our travel arrangements...
Sent from my iPhone
Wednesday, June 17, 2009
Dog Tricks
released from the hospital.
Tears of Both Kinds
We vividly remember Caleb's first surgery and the long recovery. He was only eight days old. We made friends with several families of babies and kids that had surgery the same week he did. After a week or two they were all discharged and went home. We did not. It was hard to stay and see them go. It was lonelier without them and we often wondered through the ups and downs when it would be our turn to go home.
Today we got discharged. Probably long before before our new friends.
In having to say good-bye, we remembered being the last ones to leave. We didn't want to say good-bye, but what if we never see them again. Some of our new friends are Alexandra, Elliot and Lauren. Alex is a little girl who had the same surgery as Caleb and has been at CHOP for almost a month. Elliot had surgery the day before Caleb. He just got out of the ICU. Lauren played with Caleb in the playroom. She is waiting for a heart. Please pray for them. These are just three of the faces we saw as we walked up and down the halls of the cardiac unit. Although we are crying tears of joy and thanksgiving to God for His plan and for you and all the people who prayed and comforted us during this time, we are deeply sad that these kids are still in the hospital. We were almost embarrassed to tell any of them that we were leaving. We were promised a long stay. God had other plans.
Since the chest drainage tube came out on Monday, they want us to return on Friday for a follow-up visit and some testing. It takes about four or more days for the plural effusion (water around heart and lungs) to really show up. If his x-ray looks good and his lungs sound good on Friday, we will be cleared to fly home. Otherwise we will be re-admitted for IV diuretics and another one or two chest tubes will be inserted for the liquid to drain out. This is a common complication of this surgery, but so far there are no signs of this starting.
Thank you much for praying for us! God heard and answered in such a miraculous way!
Today we got discharged. Probably long before before our new friends.
In having to say good-bye, we remembered being the last ones to leave. We didn't want to say good-bye, but what if we never see them again. Some of our new friends are Alexandra, Elliot and Lauren. Alex is a little girl who had the same surgery as Caleb and has been at CHOP for almost a month. Elliot had surgery the day before Caleb. He just got out of the ICU. Lauren played with Caleb in the playroom. She is waiting for a heart. Please pray for them. These are just three of the faces we saw as we walked up and down the halls of the cardiac unit. Although we are crying tears of joy and thanksgiving to God for His plan and for you and all the people who prayed and comforted us during this time, we are deeply sad that these kids are still in the hospital. We were almost embarrassed to tell any of them that we were leaving. We were promised a long stay. God had other plans.
Since the chest drainage tube came out on Monday, they want us to return on Friday for a follow-up visit and some testing. It takes about four or more days for the plural effusion (water around heart and lungs) to really show up. If his x-ray looks good and his lungs sound good on Friday, we will be cleared to fly home. Otherwise we will be re-admitted for IV diuretics and another one or two chest tubes will be inserted for the liquid to drain out. This is a common complication of this surgery, but so far there are no signs of this starting.
Thank you much for praying for us! God heard and answered in such a miraculous way!
Discharge Today!
Caleb will be discharged today from CHOP! We have had such a wonderful
experience of recognizing God's faithfulness and grace. We have shed
tears of joy at what God has done.
We need to remain in the Philadelphia area for a few days. We'll have
an appointment here at the hospital right before we leave.
Thank you SO much to all who prayed for us.
experience of recognizing God's faithfulness and grace. We have shed
tears of joy at what God has done.
We need to remain in the Philadelphia area for a few days. We'll have
an appointment here at the hospital right before we leave.
Thank you SO much to all who prayed for us.
Sent from my iPhone
Tuesday, June 16, 2009
Monday, June 15, 2009
Chest Tube Removed
playroom for awhile, and participating in a session with a musical
therapist, Caleb had his chest tube removed. He is now getting some
much needed rest.
Sunday, June 14, 2009
Saturday, June 13, 2009
Next Step: Number One
he's having a rough time of doing number one.
We are ecstatic that he is making such a speedy recovery. He'll be
leaving the CICU in a matter of minutes, going ink the cardiac care
center (the floor).
Here's a pic of him holding three bottles!
Busy Day
Caleb has had a busy day. He had been wanting to drink something for a long time. Finally, since he's kept it all down, the nurse gave him the green light to drink whatever he wanted, which was juice, water, and milk!
Since he's doing so well, they were able to pull out a couple of his lines. The toughest part of this is taken off the adhesive bandages and tape. He also had a chest x-ray, which revealed some air in his tummy, so we are waiting to hear more on that. He was able to see his sister before she took off to New York and Hershey with our friends. He watched Cars (again), and slept off and on.
Now he is getting blood which takes about three hours. Soon they will take off the big, bulky IV from his foot. One of the goals today is to get all (or most) of the "stuff" off of him. He has a tube coming out of his chest to drain blood and other fluid from the surgery which they will probably leave in until tomorrow.
The most common complication with Fontan kids post-op is the build up of fluid around his heart and lungs. It happens to all of the patients. Sometimes it can take many days or even weeks to drain. This was one concern that we had. Thankfully, Caleb has drained very well and has not apparently built up too much excess fluid. We believe this is God's doing.
Here's the items we just posted on Facebook:
Praise:
the beginning of a good recovery
Janet's health
good nurses
strength without sleep
Prayer:
the air in his tummy would not create major complications
no other significant complications
that Caleb would not be sad, but patient (I know, he's only three)
wisdom in managing time with Genesis
Also, if you have any Japanese friends, Caleb has a Japanese site, too!! That's linked on his blog.
UPDATE: Just got word that the air in his stomach is no big deal and should be absorbed over time.
Since he's doing so well, they were able to pull out a couple of his lines. The toughest part of this is taken off the adhesive bandages and tape. He also had a chest x-ray, which revealed some air in his tummy, so we are waiting to hear more on that. He was able to see his sister before she took off to New York and Hershey with our friends. He watched Cars (again), and slept off and on.
Now he is getting blood which takes about three hours. Soon they will take off the big, bulky IV from his foot. One of the goals today is to get all (or most) of the "stuff" off of him. He has a tube coming out of his chest to drain blood and other fluid from the surgery which they will probably leave in until tomorrow.
The most common complication with Fontan kids post-op is the build up of fluid around his heart and lungs. It happens to all of the patients. Sometimes it can take many days or even weeks to drain. This was one concern that we had. Thankfully, Caleb has drained very well and has not apparently built up too much excess fluid. We believe this is God's doing.
Here's the items we just posted on Facebook:
Praise:
the beginning of a good recovery
Janet's health
good nurses
strength without sleep
Prayer:
the air in his tummy would not create major complications
no other significant complications
that Caleb would not be sad, but patient (I know, he's only three)
wisdom in managing time with Genesis
Also, if you have any Japanese friends, Caleb has a Japanese site, too!! That's linked on his blog.
UPDATE: Just got word that the air in his stomach is no big deal and should be absorbed over time.
Technique
hospital stay. He's got milk in one and juice in the other.
Friday, June 12, 2009
Well, Caleb was thirsty but he couldn't have any water. He threw up
and they had to change his bandage on his chest. After taking it off
little by little, I helped the nurse just rip it off. More pain for a
shorter time over les pain for a long time.
Hopefully he can now go to sleep for the rest of the night.
Tomorrow is an important day. If he does great tomorrow, we will be
relieved.
It is amazing that we both have tremendous peace.
Thank you all for standing with us during this time.
and they had to change his bandage on his chest. After taking it off
little by little, I helped the nurse just rip it off. More pain for a
shorter time over les pain for a long time.
Hopefully he can now go to sleep for the rest of the night.
Tomorrow is an important day. If he does great tomorrow, we will be
relieved.
It is amazing that we both have tremendous peace.
Thank you all for standing with us during this time.
Pat
Sent from my iPhone
Sleeping
where they need to be, and allow the excess blood and fluids to drain.
Here's a pic.
Don't scroll down if you are feint hearted.
Recovery
The next two days are critical. Please pray for a great recovery. The
surgery went fine.
surgery went fine.
Sent from my iPhone
Caleb is Being Operated
Caleb is in surgery. He should be out around 3:30. We'll get hourly
updates. The people here at the hospital are amazing.
updates. The people here at the hospital are amazing.
Sent from my iPhone
Thursday, June 11, 2009
Role Reversal
House. It's a "buddy" that has had heart surgery. Caleb has been the
doctor taking care of him!
What Happens When You Ask Caleb To Smile
we're going to go do something fun since his surgery was postponed
until Friday due to an emergency with another baby.
Wednesday, June 10, 2009
Our Verse For Thursday's Events
A friend of ours shared this verse with us and it really brought some encouragement. You can click below to read it.
http://youversion.com/reader.php?startverse=2Chr.20.17&version=esv
http://youversion.com/reader.php?startverse=2Chr.20.17&version=esv
We went to Calvary Chapel Philadelphia tonight. I love listening to Pastor Joe teach the Bible. They prayed for Caleb, and we hooked up with one of the assistant pastors to keep on touch with during our time here.
I love the family of God
Sent from my iPhone
Tuesday, June 09, 2009
Update -Tuesday PM
Janet is feeling pretty sick. It has to do with her pregnancy. We'll trust God's timing on that one.
Pat is adjusting to living in a hotel room/hospital room for thirty days. We love the facility, we are super-duper thankful and are being well taken care of, but there is nothing like home. We knew this would be a challenge so we will trust that the Lord will get us through. This is one of those situations that having been on a lot of missions trips helps.
Caleb did great today - totally cooperative with all the nurses/techs, etc. Like, he didn't even cry or scream or anything when they poked him with a needle to draw blood! That's my boy! He said it didn't even hurt. I was shocked, surprised, and so proud of him. He's my hero!
Genesis is being a trooper. Both kids are doing great, all things considered. They have crafts at the RMH (Ronald McDonald House). Last night they made a bird house, tonight they made door hangers.
So, please pray for
1) strength and wisdom. There's always decisions to be made and weakness to feel.
2) successful surgery and speedy recovery. This is huge. The trip could be a lot shorter if Caleb recovers speedily.
3) health for everyone. Hopefully, Janet being sick won't spread to Genesis and Pat.
4) a little sanity would be nice once in awhile, too!!!
We should get a call sometime tomorrow afternoon telling us what time the surgery will be. The pre/surgery/post will be about 3 1/2 hours. The longest part is cutting through all the scar tissue.
Tomorrow we hope to go to Sesame Place for a day of fun with Big Bird. Hopefully, and prayerfully, none of us will behave like Oscar!!
We are also hoping to see our friends Nilson and Betty Hernandez who flew up today to spend a couple weeks here with us.
Pat
Pat is adjusting to living in a hotel room/hospital room for thirty days. We love the facility, we are super-duper thankful and are being well taken care of, but there is nothing like home. We knew this would be a challenge so we will trust that the Lord will get us through. This is one of those situations that having been on a lot of missions trips helps.
Caleb did great today - totally cooperative with all the nurses/techs, etc. Like, he didn't even cry or scream or anything when they poked him with a needle to draw blood! That's my boy! He said it didn't even hurt. I was shocked, surprised, and so proud of him. He's my hero!
Genesis is being a trooper. Both kids are doing great, all things considered. They have crafts at the RMH (Ronald McDonald House). Last night they made a bird house, tonight they made door hangers.
So, please pray for
1) strength and wisdom. There's always decisions to be made and weakness to feel.
2) successful surgery and speedy recovery. This is huge. The trip could be a lot shorter if Caleb recovers speedily.
3) health for everyone. Hopefully, Janet being sick won't spread to Genesis and Pat.
4) a little sanity would be nice once in awhile, too!!!
We should get a call sometime tomorrow afternoon telling us what time the surgery will be. The pre/surgery/post will be about 3 1/2 hours. The longest part is cutting through all the scar tissue.
Tomorrow we hope to go to Sesame Place for a day of fun with Big Bird. Hopefully, and prayerfully, none of us will behave like Oscar!!
We are also hoping to see our friends Nilson and Betty Hernandez who flew up today to spend a couple weeks here with us.
Pat
Monday, June 08, 2009
Friday, June 05, 2009
Saturday, May 30, 2009
Travel Update
We secured our airplane tickets. We'll be landing in Philly on Monday, June 8. On Tuesday, we have Caleb's pre-op appointment. Wednesday, we plan on having a fun day by driving 30 miles north to Sesame Place! Wednesday night, we're hoping to visit Calvary Chapel Philadelphia. Thursday is the big day for surgery, still not sure what time it will be. We won't know until a couple days before.
We are also super thankful that God has led our friends Betty and Nilson Hernandez to come with us for a week or two. Their help watching our daughter during the surgery will be indespensible.
Thanks for your prayers!
We are also super thankful that God has led our friends Betty and Nilson Hernandez to come with us for a week or two. Their help watching our daughter during the surgery will be indespensible.
Thanks for your prayers!
Thursday, May 21, 2009
Facebook: Caleb's Prayer Team Tops 411 Members!
Caleb has a team of prayer warriors armed and ready to go. If you'd like to join the Facebook group, you can click here.
We're overwhelmed at the love and interest that you all have shown. Please continue to pray for him and a successful surgery and complete recovery!
Monday, May 18, 2009
HLHS Averted by In Utero Procedure!
We first were diagnosed with Caleb's heart condition when we lived in Toronto. They have a wonderful and very huge hospital devoted to children called Toronto Sick Kids. Recently, I ran across this story of a baby who underwent a procedure at this hospital while still in his mother's womb! It was successful! The baby, had they not done this procedure, would have had to have the same three surgeries as Caleb.
Here's the text from the article and a link to the online version.
(Toronto) – In a Canadian first, doctors at The Hospital for Sick Children (SickKids) and Mount Sinai Hospital successfully performed a lifesaving heart intervention on a baby in utero. A team of doctors, including Dr. Edgar Jaeggi, Head of the Fetal Cardiac Program at SickKids, Dr. Greg Ryan, Head of the Fetal Medicine Unit at Mount Sinai and Dr. Lee Benson, Director of the Cardiac Diagnostic and Interventional Unit at SickKids, expanded the baby’s aortic valve using a balloon catheter inserted through the mother’s abdomen while the baby was still in her womb to reverse the baby’s heart failure before birth. This allowed the baby to remain safely in utero for a crucial extra month.
"The fetal intervention was minimally invasive for the mother and lifesaving for the baby," says Ryan. "Our ability to repair the aortic valve at 31 weeks gestation allowed the fetus to grow and thrive for four more weeks in the mother's uterus, resulting in a bigger, healthier baby at birth with decreased likelihood of additional health risks. Had the baby been delivered at 31 weeks, the heart’s left ventricle could not have been saved. The collaboration of expertise between SickKids and Mount Sinai saved this infant's life."
Thirty weeks into her pregnancy, Vicki McKenzie, a mother of two from the Ottawa area, had an ultrasound indicating her baby, Océane, had a heart condition called Critical Aortic Stenosis, meaning there was severe narrowing of the main outlet valve of the left ventricle. She was immediately referred to Toronto, where doctors at SickKids and Mount Sinai offered her an experimental procedure.
The procedure is called Balloon Dilation of Critical Aortic Stenosis in the Fetus. Under continuous ultrasound guidance, doctors inserted a needle into the left ventricle of the baby’s heart through McKenzie’s abdomen; a guide wire was passed through the narrowed valve so the special balloon would open the valve leading to the baby’s aorta. In theory it was simple, but in reality it was an innovative and risky procedure. It has been tried in only a few centres worldwide; this was the first successful such procedure in Canada.
“It can only be offered to a few babies in utero who are detected at the correct stage and when their aorta hasn’t yet narrowed too much. This baby came to us at just the right time,” says Jaeggi.
Untreated, the condition would inevitably lead to a lifelong condition called Hypoplastic Left Heart Syndrome (HLHS). Children with HLHS typically need to undergo at least three major heart surgeries. Most children would not be expected to live a normal lifespan; the 10-year survival rate is only 65 per cent. This experimental intervention aims to repair the heart early, allowing it to recover its normal function to avoid risky surgeries after birth and hopefully lead to a longer and better quality of life.
McKenzie, who was prepared for anything, agreed to the intervention. Océane stayed in her mother’s womb for a full month following the procedure, until the team determined that she could be safely delivered on April 15.
Doctors anticipated that as soon as she was born, the baby would need to undergo another procedure to further open her aortic valve. Within an hour of her birth at Mount Sinai, Océane was stabilized and transported by Mount Sinai’s neonatal team to the Cardiac Diagnostic & Interventional Unit at SickKids, where she underwent another procedure. A third procedure followed a few weeks later.
“They have saved my daughter’s life. Having access to the expertise at these two hospitals was a comfort. I could confidently have my baby at Mount Sinai and know that she would immediately receive the urgent care she needed across the street at SickKids,” says McKenzie.
“The intervention recovered Océane’s ventrical function completely. It is operating at a normal level now. We hope this successful collaboration opens the door to giving other babies a healthier start in life,” says Jaeggi.
The Mitchell Goldhar Cardiac Diagnostic & Interventional Unit at SickKids enables Canada’s largest paediatric interventional catheterization program to develop innovations in minimally invasive alternatives to open-heart surgery. The unit, opened in 2007, combines the latest technology to diagnose and treat children with congenital heart disease using minimally invasive procedures that can reduce or eliminate the need for open-heart surgery.
The Fetal Medicine Program and Perinatal Program at Mount Sinai Hospital are among the largest in North America, and receive referrals from all across Canada for a wide range of fetal problems needing complex interventions.
About SickKids
The Hospital for Sick Children (SickKids), affiliated with the University of Toronto, is Canada’s most research-intensive hospital and the largest centre dedicated to improving children’s health in the country. As innovators in child health, SickKids improves the health of children by integrating care, research and teaching. Our mission is to provide the best in complex and specialized care by creating scientific and clinical advancements, sharing our knowledge and expertise and championing the development of an accessible, comprehensive and sustainable child health system. For more information, please visit www.sickkids.ca. SickKids is committed to healthier children for a better world.
About Mount Sinai Hospital
Mount Sinai Hospital is an internationally recognized, 472-bed acute care academic health sciences centre affiliated with the University of Toronto. It is known for excellence in the provision of compassionate patient care, innovative education, and leading-edge research. Mount Sinai’s Centres of Excellence include the Lawrence and Frances Centre for Women's and Infants' Health; Christopher Sharp Centre for Surgery and Oncology; Acute and Chronic Medicine; Laboratory Medicine and Infection Control, and the Samuel Lunenfeld Research Institute. For more information about Mount Sinai Hospital, please visit us online at www.mountsinai.on.ca.
Here's the text from the article and a link to the online version.
(Toronto) – In a Canadian first, doctors at The Hospital for Sick Children (SickKids) and Mount Sinai Hospital successfully performed a lifesaving heart intervention on a baby in utero. A team of doctors, including Dr. Edgar Jaeggi, Head of the Fetal Cardiac Program at SickKids, Dr. Greg Ryan, Head of the Fetal Medicine Unit at Mount Sinai and Dr. Lee Benson, Director of the Cardiac Diagnostic and Interventional Unit at SickKids, expanded the baby’s aortic valve using a balloon catheter inserted through the mother’s abdomen while the baby was still in her womb to reverse the baby’s heart failure before birth. This allowed the baby to remain safely in utero for a crucial extra month."The fetal intervention was minimally invasive for the mother and lifesaving for the baby," says Ryan. "Our ability to repair the aortic valve at 31 weeks gestation allowed the fetus to grow and thrive for four more weeks in the mother's uterus, resulting in a bigger, healthier baby at birth with decreased likelihood of additional health risks. Had the baby been delivered at 31 weeks, the heart’s left ventricle could not have been saved. The collaboration of expertise between SickKids and Mount Sinai saved this infant's life."
Thirty weeks into her pregnancy, Vicki McKenzie, a mother of two from the Ottawa area, had an ultrasound indicating her baby, Océane, had a heart condition called Critical Aortic Stenosis, meaning there was severe narrowing of the main outlet valve of the left ventricle. She was immediately referred to Toronto, where doctors at SickKids and Mount Sinai offered her an experimental procedure.
The procedure is called Balloon Dilation of Critical Aortic Stenosis in the Fetus. Under continuous ultrasound guidance, doctors inserted a needle into the left ventricle of the baby’s heart through McKenzie’s abdomen; a guide wire was passed through the narrowed valve so the special balloon would open the valve leading to the baby’s aorta. In theory it was simple, but in reality it was an innovative and risky procedure. It has been tried in only a few centres worldwide; this was the first successful such procedure in Canada.
“It can only be offered to a few babies in utero who are detected at the correct stage and when their aorta hasn’t yet narrowed too much. This baby came to us at just the right time,” says Jaeggi.
Untreated, the condition would inevitably lead to a lifelong condition called Hypoplastic Left Heart Syndrome (HLHS). Children with HLHS typically need to undergo at least three major heart surgeries. Most children would not be expected to live a normal lifespan; the 10-year survival rate is only 65 per cent. This experimental intervention aims to repair the heart early, allowing it to recover its normal function to avoid risky surgeries after birth and hopefully lead to a longer and better quality of life.
McKenzie, who was prepared for anything, agreed to the intervention. Océane stayed in her mother’s womb for a full month following the procedure, until the team determined that she could be safely delivered on April 15.
Doctors anticipated that as soon as she was born, the baby would need to undergo another procedure to further open her aortic valve. Within an hour of her birth at Mount Sinai, Océane was stabilized and transported by Mount Sinai’s neonatal team to the Cardiac Diagnostic & Interventional Unit at SickKids, where she underwent another procedure. A third procedure followed a few weeks later.
“They have saved my daughter’s life. Having access to the expertise at these two hospitals was a comfort. I could confidently have my baby at Mount Sinai and know that she would immediately receive the urgent care she needed across the street at SickKids,” says McKenzie.
“The intervention recovered Océane’s ventrical function completely. It is operating at a normal level now. We hope this successful collaboration opens the door to giving other babies a healthier start in life,” says Jaeggi.
The Mitchell Goldhar Cardiac Diagnostic & Interventional Unit at SickKids enables Canada’s largest paediatric interventional catheterization program to develop innovations in minimally invasive alternatives to open-heart surgery. The unit, opened in 2007, combines the latest technology to diagnose and treat children with congenital heart disease using minimally invasive procedures that can reduce or eliminate the need for open-heart surgery.
The Fetal Medicine Program and Perinatal Program at Mount Sinai Hospital are among the largest in North America, and receive referrals from all across Canada for a wide range of fetal problems needing complex interventions.
About SickKids
The Hospital for Sick Children (SickKids), affiliated with the University of Toronto, is Canada’s most research-intensive hospital and the largest centre dedicated to improving children’s health in the country. As innovators in child health, SickKids improves the health of children by integrating care, research and teaching. Our mission is to provide the best in complex and specialized care by creating scientific and clinical advancements, sharing our knowledge and expertise and championing the development of an accessible, comprehensive and sustainable child health system. For more information, please visit www.sickkids.ca. SickKids is committed to healthier children for a better world.
About Mount Sinai Hospital
Mount Sinai Hospital is an internationally recognized, 472-bed acute care academic health sciences centre affiliated with the University of Toronto. It is known for excellence in the provision of compassionate patient care, innovative education, and leading-edge research. Mount Sinai’s Centres of Excellence include the Lawrence and Frances Centre for Women's and Infants' Health; Christopher Sharp Centre for Surgery and Oncology; Acute and Chronic Medicine; Laboratory Medicine and Infection Control, and the Samuel Lunenfeld Research Institute. For more information about Mount Sinai Hospital, please visit us online at www.mountsinai.on.ca.
Monday, May 11, 2009
30 Days and Counting: Prayer Request
Hey everyone,
Caleb's surgery is exactly one month from today. During this week, we hope to finalize travel and lodging plans, as his surgery will be at Children's Hospital of Philadelphia. So please pray for God's leading as we start working on the details of this trip. One of our goals is to make it fun for the kids, so we hope to go up a couple days early and hang out. Thanks!
Caleb's surgery is exactly one month from today. During this week, we hope to finalize travel and lodging plans, as his surgery will be at Children's Hospital of Philadelphia. So please pray for God's leading as we start working on the details of this trip. One of our goals is to make it fun for the kids, so we hope to go up a couple days early and hang out. Thanks!
Tuesday, April 28, 2009
Save the Date!
June 11 is the date for Caleb's next surgery.
We are in planning mode, working out all the details of our
forthcoming trip.
Sent from my iPhone
Monday, April 27, 2009
Today
Last week we were told by CHOP that they will inform us today of the
date for Caleb's operation. They want it be at a time when both of his
doctors, the surgeon and the intensivist are in town.
date for Caleb's operation. They want it be at a time when both of his
doctors, the surgeon and the intensivist are in town.
So we should know soon!
Sent from my iPhone
Sunday, April 19, 2009
Philly Summary
Is the search over? Lord, is this the place where our son should have his next surgery? We were both asking ourselves the same question. We have been able to take Caleb to The Hospital for Sick Children in Toronto, Miami Children's Hospital, Children's Hospital in Boston and recently The Children's Hospital of Philadelphia (CHOP). Taking our son to Boston and Philly, which are the top two cardiac programs in the nation, was a fleeting thought since our state insurance would not cover such medical ventures. We are still so amazed at how God granted our unspoken desire so naturally and easily. The bible says the Lord knows our needs even before we ask (Mat 6:8).
So far CHOP has offered us the most information, research, and opportunity for Caleb and our family. We still don't want to rely on our understanding, but on God's leading. This is where there is peace even in the midst of difficulty. During our visit we got some of our unanswered questions answered. Why is his head so large? Why the developmental delay and complications after the 1st surgery? As well as some answers about life after the Fontan.
The Fontan is the next surgery Caleb will be having. After his cardiac echo (ultrasound of the heart), vital signs, EKG, meeting with Dr. Spray (the chief cardiac surgean at CHOP) and Dr. Wernovsky (one of the top cardiologists at CHOP) we were assured that Caleb is a good candidate for the Fontan circulation. He definitely needs the operation and it needs to be done soon while he is strong and stable. Right now this is technically considered an elective surgery, but if he does not have the surgery soon, his oxygen saturations will continue to decrease and he will become very sick.
So what is the Fontan? It is the last stage in a series of three repairs done to children with one or more congenital heart defects that cannot be corrected. Caleb has seven heart defects and two of them cannot be corrected. We say that he has half a heart. He is missing the right ventricle and right valve called the Tricuspid Valve. Consequently the right side of the heart is basically missing or useless. The Fontan is achieved after three stages of surgery. They have to do it in three steps because babies have high pressures in the lungs when they are born. The Fontan circulation does not work when the pressure in the lungs is high. The first surgery in the palliation involves opening up the upper heart wall (atrial septum) and putting a shunt from a part of the aorta to the right pulmonary artery which replaces the Patent Ductus Arteriosis (a connection between pulmonary artery and aorta that all babies use in the womb and are born with but closes quickly after birth).
The next surgery called the Glenn or hemi-Fontan is done at around six months when the pressures in the lungs decrease and the babies have grown into or out of the shunt. At this point, they disconnect the shunt from the first surgery. They also disconnect the superior vena cava from the right atrium of the heart and connect it to the right pulmonary artery. The superior vena cava carries all the blue blood from the body to the right atrium so it can go to the lungs via the pulmonary artery with the pumping from the right ventricle. This is what Caleb is missing. They also disconnect the main pulmonary artery. This is an easy surgery to recover from because the blood flow goes with gravity since it falls from the head to the chest area.
When kids are about Caleb's current age, about 3 yrs old, they complete the Fontan circulation by disconnecting the inferior vena cave (blood flow from the lower body, similar to superior vena cava from used in Glenn sugery) from the right atrium of the heart, extending it with a tube and connecting it to the bottom of the right pulmonary artery branch. Because the blood from the lower part of the body travels against gravity and depends on the pumping of both ventricles of the heart, the recovery is long and includes complications with fluid building up around the lungs (plural effusions). Because Caleb's body has developed many extra veins (collateral veins) to try to compensate for his lack of oxygen, he is at higher risk for the effusions. This is a minus for him. But thankfully it is the only minus he has.
We asked the Nurse Practitioner who is the liason for out of town patients, Katie Dodds, to submit Caleb for surgery scheduling for June. We are waiting for the appt. date and will post again as soon as we have it.
We would also ask that if you are reading this post that you really begin (or continue) praying for Caleb and us, as we have a renewed sense of the risks involved in this surgery.
Thank you!!
So far CHOP has offered us the most information, research, and opportunity for Caleb and our family. We still don't want to rely on our understanding, but on God's leading. This is where there is peace even in the midst of difficulty. During our visit we got some of our unanswered questions answered. Why is his head so large? Why the developmental delay and complications after the 1st surgery? As well as some answers about life after the Fontan.
The Fontan is the next surgery Caleb will be having. After his cardiac echo (ultrasound of the heart), vital signs, EKG, meeting with Dr. Spray (the chief cardiac surgean at CHOP) and Dr. Wernovsky (one of the top cardiologists at CHOP) we were assured that Caleb is a good candidate for the Fontan circulation. He definitely needs the operation and it needs to be done soon while he is strong and stable. Right now this is technically considered an elective surgery, but if he does not have the surgery soon, his oxygen saturations will continue to decrease and he will become very sick.
So what is the Fontan? It is the last stage in a series of three repairs done to children with one or more congenital heart defects that cannot be corrected. Caleb has seven heart defects and two of them cannot be corrected. We say that he has half a heart. He is missing the right ventricle and right valve called the Tricuspid Valve. Consequently the right side of the heart is basically missing or useless. The Fontan is achieved after three stages of surgery. They have to do it in three steps because babies have high pressures in the lungs when they are born. The Fontan circulation does not work when the pressure in the lungs is high. The first surgery in the palliation involves opening up the upper heart wall (atrial septum) and putting a shunt from a part of the aorta to the right pulmonary artery which replaces the Patent Ductus Arteriosis (a connection between pulmonary artery and aorta that all babies use in the womb and are born with but closes quickly after birth).
The next surgery called the Glenn or hemi-Fontan is done at around six months when the pressures in the lungs decrease and the babies have grown into or out of the shunt. At this point, they disconnect the shunt from the first surgery. They also disconnect the superior vena cava from the right atrium of the heart and connect it to the right pulmonary artery. The superior vena cava carries all the blue blood from the body to the right atrium so it can go to the lungs via the pulmonary artery with the pumping from the right ventricle. This is what Caleb is missing. They also disconnect the main pulmonary artery. This is an easy surgery to recover from because the blood flow goes with gravity since it falls from the head to the chest area.
When kids are about Caleb's current age, about 3 yrs old, they complete the Fontan circulation by disconnecting the inferior vena cave (blood flow from the lower body, similar to superior vena cava from used in Glenn sugery) from the right atrium of the heart, extending it with a tube and connecting it to the bottom of the right pulmonary artery branch. Because the blood from the lower part of the body travels against gravity and depends on the pumping of both ventricles of the heart, the recovery is long and includes complications with fluid building up around the lungs (plural effusions). Because Caleb's body has developed many extra veins (collateral veins) to try to compensate for his lack of oxygen, he is at higher risk for the effusions. This is a minus for him. But thankfully it is the only minus he has.
We asked the Nurse Practitioner who is the liason for out of town patients, Katie Dodds, to submit Caleb for surgery scheduling for June. We are waiting for the appt. date and will post again as soon as we have it.
We would also ask that if you are reading this post that you really begin (or continue) praying for Caleb and us, as we have a renewed sense of the risks involved in this surgery.
Thank you!!
Thursday, April 16, 2009
Great Day
We had a great day yesterday. Janet will be telling you all about it I'm a future post. Last night we worshiped at CC Philly. Afterwards Pastor Joe Focht prayed for Caleb. It was great to be at the service and meet our brothers and sisters in Philadelphia. I never cease to be amazed at the fellowship of believers.
Wednesday, April 15, 2009
At the Hospital
After filling out all the paperwork, we are now in echo exam room #2 waiting for the tech. She is looking for Caleb's favorite movie, Cars, so he can watch Lightning McQueen during the test.
A Rainy Day in Philly
After getting checked in to the wonderful Ronald McDonald House in Camden, NJ, and grabbing some lunch, we decided to ride the subway and go see the Liberty Bell. Thanks to the rain, lines were virtually non-existent. While we were out we got a call from one if the doctors at CHOPS saying he needed Caleb's post op notes.
Oh no! We thought we had sent these months ago. It was already after 5:00pm. Our contact at MCH had already left. We sent her an email and then set out on our quest for a Philly cheese steak. Five blocks later we got to our destination: Jim's Steaks. We told the guy we had walked five blocks in the rain and we were from out of town, could he please hook us up with whatever the locals get.
It was yummy!
Today, we got word that the reports we need would be faxed.
Now, we are off the breakfast and then on to the hospital.
Oh no! We thought we had sent these months ago. It was already after 5:00pm. Our contact at MCH had already left. We sent her an email and then set out on our quest for a Philly cheese steak. Five blocks later we got to our destination: Jim's Steaks. We told the guy we had walked five blocks in the rain and we were from out of town, could he please hook us up with whatever the locals get.
It was yummy!
Today, we got word that the reports we need would be faxed.
Now, we are off the breakfast and then on to the hospital.
Tuesday, April 14, 2009
Arrived
"Did you get the bag?" "No, you had it, didn't you take it on the plane?"
No way! We didn't really leave our suitcase at the gate in Miami, did we? After all, we carefully crafted how we would journey through the airport with two strollers, two car seats, one carry-on suitcase, one laptop bag, one backpack, one Barbie backpack, and a couple jackets. Now we got off the plane in Philadelphia, and our hearts sank at the thought of having to replace all our clothes and toiletries.
We called MIA lost and found. Nothing. We called American Airlines lost and found. Nope. We called Gate D29. No answer. We called a friend that works at the airport. He said that he would check of our later that afternoon. Ok. That's about all we can do. Let's just plan for living in Philly for three days without our bag.
Well, before we leave the airport for the rental car agency, let's go talk to the local Philly AA baggage people and see if they can help us. Maybe they can call someone in Miami. We got to their office and guess what we saw? The missing suitcase!
Evidently, as we were gate checking the strollers, we left the suitcase right outside the plane. Someone must have put it on the plane at the last minute. There it was. Thank you Lord!
We are staying at the Ronald McDonald house in Camden, NJ. This place is awesome. We'll try to post pics later.
No way! We didn't really leave our suitcase at the gate in Miami, did we? After all, we carefully crafted how we would journey through the airport with two strollers, two car seats, one carry-on suitcase, one laptop bag, one backpack, one Barbie backpack, and a couple jackets. Now we got off the plane in Philadelphia, and our hearts sank at the thought of having to replace all our clothes and toiletries.
We called MIA lost and found. Nothing. We called American Airlines lost and found. Nope. We called Gate D29. No answer. We called a friend that works at the airport. He said that he would check of our later that afternoon. Ok. That's about all we can do. Let's just plan for living in Philly for three days without our bag.
Well, before we leave the airport for the rental car agency, let's go talk to the local Philly AA baggage people and see if they can help us. Maybe they can call someone in Miami. We got to their office and guess what we saw? The missing suitcase!
Evidently, as we were gate checking the strollers, we left the suitcase right outside the plane. Someone must have put it on the plane at the last minute. There it was. Thank you Lord!
We are staying at the Ronald McDonald house in Camden, NJ. This place is awesome. We'll try to post pics later.
On the Plane!
We are sitting on our American Airlines jet. We've got our seat belts fastened. We are ready for take off!
Last night, we had quite an adventure as we found out that Philadelphia had received the wrong test results from Miami Children's.. It was after business hours; medical records wasn't answering the phone. So we drove over to the hospital to see I we could find someone to help us. We needed a cd of Caleb's caths.
After knocking on some doors that appeared to be closed, and speaking with some very helpful people, we finally were assured that the cd could be sent overnight today.
So hats off to Miami Children's for going out of there way to help us!
Last night, we had quite an adventure as we found out that Philadelphia had received the wrong test results from Miami Children's.. It was after business hours; medical records wasn't answering the phone. So we drove over to the hospital to see I we could find someone to help us. We needed a cd of Caleb's caths.
After knocking on some doors that appeared to be closed, and speaking with some very helpful people, we finally were assured that the cd could be sent overnight today.
So hats off to Miami Children's for going out of there way to help us!
Monday, April 13, 2009
10, 9, 8, 7, 6.....
We leave tomorrow morning for Philadelphia. Our plane leaves very early.
Here's our plan:
Arrive in Philly around 9:30. Get the rental van. Go have fun.
We're thinking about visiting the Please Touch Museum. Grabbing a Philly Cheese Steak at Pat's King of Steaks.
Wednesday is the medical day. We'll be at the hospital most of the day meeting doctors and getting a tour of the hospital. Caleb's echo is at 1:00pm.
Wednesday evening we plan on attending Calvary Chapel Philadelphia.
Thursday we may go see the Liberty Bell or the Franklin Institute.
Thanks for your prayers.
Here's our plan:
Arrive in Philly around 9:30. Get the rental van. Go have fun.
We're thinking about visiting the Please Touch Museum. Grabbing a Philly Cheese Steak at Pat's King of Steaks.
Wednesday is the medical day. We'll be at the hospital most of the day meeting doctors and getting a tour of the hospital. Caleb's echo is at 1:00pm.
Wednesday evening we plan on attending Calvary Chapel Philadelphia.
Thursday we may go see the Liberty Bell or the Franklin Institute.
Thanks for your prayers.
Wednesday, April 08, 2009
Planning: Full Steam Ahead
We leave in less than a week to Philadelphia. It will be our first time at CHOPS. We're looking forward to it.
We were thinking about driving to New York on Tuesday from Philly, but it might be too much for such a short trip. While we are in Philly, we are hoping to stay at the Ronald McDonald House.
We eagerly ask and thank you for your prayers.
We were thinking about driving to New York on Tuesday from Philly, but it might be too much for such a short trip. While we are in Philly, we are hoping to stay at the Ronald McDonald House.
We eagerly ask and thank you for your prayers.
Tuesday, April 07, 2009
Halter Results
A couple weeks ago, Caleb had to wear a halter. This was a device that measured the function and beating of his heart over an entire twenty-four hour period. The results of that test is that he has "sinus taccycardia". The folks at CHOPS tell us that it is normal. Here is an article we found here that describes this condition:
Sinus tachycardia
Sinus tachycardia is defined as sinus rhythm with a rate of greater than 100 beats/min. To be certain that sinus tachycardia is the etiology for a supraventricular tachycardia (tachycardia with its origin in the AV junction, atria or SA node), one must identify a constant single P wave for every QRS complex. Sinus tachycardia usually represents a physiologic response to fever, intravascular volume depletion, hypermetabolism, anxiety or the administration of pharmacologic agents that dramatically increase sinus rate, such as catecholamines. Sinus tachycardia may also be a response to severe emotional distress, fright and strenuous exercise. Other causes may include a response to anemia, CHF, hemorrhage, extensive heart muscle damage associated with a reduction in cardiac output and pulmonary embolism. Physiologically, sinus tachycardia results from either vagal withdrawal and/or endogenous release of catecholamines.
One should not treat sinus tachycardia per se, but instead should be concerned with the reasons for its development. Obviously, if intravascular volume depletion, fright, fever or sepsis is responsible for sinus tachycardia, the preferred approach is to identify the etiology and treat it, expecting the sinus tachycardia to respond to treatment of the basic abnormality. Alternatively if the sinus tachycardia is due to extensive heart muscle damage resulting from an acute MI or severe CHF, efforts must be made to support the pump function of the heart rather than to potentially depress it further with certain pharmacologic interventions. Sinus tachycardia is often an early warning sign of some altered physiologic state that should itself be identified and corrected.
Never "treat" sinus tachycardia: treat the cause of sinus tachycardia.
Sinus tachycardia
Sinus tachycardia is defined as sinus rhythm with a rate of greater than 100 beats/min. To be certain that sinus tachycardia is the etiology for a supraventricular tachycardia (tachycardia with its origin in the AV junction, atria or SA node), one must identify a constant single P wave for every QRS complex. Sinus tachycardia usually represents a physiologic response to fever, intravascular volume depletion, hypermetabolism, anxiety or the administration of pharmacologic agents that dramatically increase sinus rate, such as catecholamines. Sinus tachycardia may also be a response to severe emotional distress, fright and strenuous exercise. Other causes may include a response to anemia, CHF, hemorrhage, extensive heart muscle damage associated with a reduction in cardiac output and pulmonary embolism. Physiologically, sinus tachycardia results from either vagal withdrawal and/or endogenous release of catecholamines.
One should not treat sinus tachycardia per se, but instead should be concerned with the reasons for its development. Obviously, if intravascular volume depletion, fright, fever or sepsis is responsible for sinus tachycardia, the preferred approach is to identify the etiology and treat it, expecting the sinus tachycardia to respond to treatment of the basic abnormality. Alternatively if the sinus tachycardia is due to extensive heart muscle damage resulting from an acute MI or severe CHF, efforts must be made to support the pump function of the heart rather than to potentially depress it further with certain pharmacologic interventions. Sinus tachycardia is often an early warning sign of some altered physiologic state that should itself be identified and corrected.
Never "treat" sinus tachycardia: treat the cause of sinus tachycardia.
Thursday, April 02, 2009
Countdown to Philly: 13 Days
We leave for CHOPS in thirteen days. Next Wednesday, we plan on having our pastors pray for Caleb after the service in obedience to James 6:14, "Is anyone among you sick? Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord."
It will be a great teaching moment for Caleb, giving us an opportunity to explain to him about prayer and healing and trusting the Lord.
It will be a great teaching moment for Caleb, giving us an opportunity to explain to him about prayer and healing and trusting the Lord.
Wednesday, April 01, 2009
New Link
Check out Angel's Pediatric Heart House, one of the organizations that exists to help families with children with CHD.
Sonia Perez, the founder, has a wonderful story. We have been blessed by their existence.
Sonia Perez, the founder, has a wonderful story. We have been blessed by their existence.
Thursday, March 26, 2009
Correction
Of course, my wife is right. Our first plane trip as a family was to the DR a couple years ago!
Wednesday, March 25, 2009
Departure Date
All eyes are on April 15. While the rest of America will be scrambling to finish their taxes, we will be on a plane to Philadelphia to pay a visit to CHOPS (Children's Hospital of Philadelphia). We'll only be there three days. During that time Caleb will have an echo and we will tour the hospital and meet the doctors.
We're not fearful or nervous. The Lord has given us a tremendous peace and a church family that lifts us up in prayer.
This will be the first time that our whole family has ridden a plane. Should be fun!
We're not fearful or nervous. The Lord has given us a tremendous peace and a church family that lifts us up in prayer.
This will be the first time that our whole family has ridden a plane. Should be fun!
Wednesday, March 18, 2009
No, It's Not An iPod!
This is Caleb with a halter. It is like a 24 hour EKG. The results of this test will be sent to CHOPS where they will determine if Caleb will need to wired for a pace maker.
Sunday, March 15, 2009
Rash
Caleb's been eating a little funny, almost like he is struggling with reflux. He also has a cough. Last night, Janet noticed a rash on his body.
Looks like it's time for a doctor's visit.
He'll also be wearing a halter for about a week. The halter will monitor all things cardiac so the doctors in Philadelphia will have more information about his heart. The halter will be "installed" at his cardiologists office the first week of April.
We're hoping all you prayer warriors are starting your engines!
Looks like it's time for a doctor's visit.
He'll also be wearing a halter for about a week. The halter will monitor all things cardiac so the doctors in Philadelphia will have more information about his heart. The halter will be "installed" at his cardiologists office the first week of April.
We're hoping all you prayer warriors are starting your engines!
Thursday, March 12, 2009
We're Going To Japan (sort of)
We are amazed at how God has used our little blog about Caleb's heart condition.
We recently were approached by a lady at our church who has a Internet ministry. She asked if she could translate Caleb's site into Japanese as a ministry to parents in Japan who have children with CHD. We will keep you posted as this becomes reality.
We are excited about how the Lord will continue to use Caleb's life here and overseas.
We recently were approached by a lady at our church who has a Internet ministry. She asked if she could translate Caleb's site into Japanese as a ministry to parents in Japan who have children with CHD. We will keep you posted as this becomes reality.
We are excited about how the Lord will continue to use Caleb's life here and overseas.
Monday, March 09, 2009
Ribs Anyone?
Three years ago, we wouldn't have believed. For those who have been tracking with us, you know that one of the most difficult struggles we've had with Caleb is his severe feeding disorder. MAJOR effort just to get him to drink milk out of a bottle. He had a feeding tube up his nose for months. He almost had a G-tube installed in his stomach.
Well, Friday night we went to Flannigan's with the kids. Caleb ate almost half a rack of ribs! We were amazed. He loves to eat. I can tell he's going to be a big item on our food budget in a few years!
"We give thanks to You, O God, we give thanks! For your wondrous works declare that Your name is near." Psalm 75:1
Saturday, March 07, 2009
On To Philly
We will be going to Philadelphia on April 14 to have Caleb evaluated by Children's Hospital of Philadelphia. They specialize in single ventricle patients. He is due for his third major surgery, the Fontan operation, sometime in the next several months.
We're looking forward to our trip and seeing it all come together.
We're looking forward to our trip and seeing it all come together.