We are in planning mode, working out all the details of our
forthcoming trip.
Sent from my iPhone
Tuesday, April 28, 2009
Save the Date!
June 11 is the date for Caleb's next surgery.
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.