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 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.
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
