The Results Are In

We finally got the results of all the tests Caleb has been undergoing lately. It is good news! For those of you who pray and prayed, thank you so much! And thank you Lord for hearing and answering our prayers!

In regard to his heart, Caleb has a slow heart rate and arythmias due to his last surgery. This is a side affect of the surgery that should have gone away by now, but has not. The strange thing is that it did not start until a few months after his Fontan surgery. We pray and wait to see if these will go away just as they came - strangely and totally atypical for Fontan patient. These side affects usually appear right after surgery or many years after surgery. These can be fixed with a pace maker, but his heart rate is not slow enough to consider this intervention yet.

The best news is that Caleb does not have PLE (Protein Loosing Enteropathy). This is also a side effect of his last surgery that quickly leads to death, so we were pretty terrified when we heard "possible PLE". The tests confirmed that his protein is low, but he does not have PLE. We are giving him more protein rich foods and have started to include protein powder in his diet.

Caleb will have to be cathed after school lets out this summer to see what is going on and to close the fenestration (hole) they made in his heart during the last surgery. The main reason for closing is to reduce the risk of stroke and for his oxygen levels to increase a bit more. Hopefully it will get to 95% or more.

As far as neurology is concerned, his EEG and MRI showed that Caleb has slow brain waves due to having a small brain. The good news is that his condition is chronic and has probably been present since before birth due to his low oxygen levels and heart condition. His brain is growing with him, but it is smaller than what it should be. The neurologist wants him to have some more genetics tests done to see if he has any syndromes related to the brain. We are also aware that it is more likely for him to have seizures than it is for another child.

Overall, Caleb continues to enjoy life and we enjoy him and treasure every minute we have with him. He has such a great personality and sense of humor! Sometimes we even forget about his special heart. Not on purpose though, because our awareness of his disease reminds us of how faithful God has been to us in Caleb.

Brain MRI

On my way to get an MRI for Caleb.
Keep him in prayer.
EEG revealed slow brain waves.

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EEG

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.

Batman!

Caleb is wearing a monitor that transmits his heart data 24 hours a
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!

Santa

Follow-up

The vomitting was not related to his heart, evidently. Right now, he
is at his cardiologist appointment.

Thanks for your prayers.

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Caleb Sick

Wr had to pick up Caleb from school this morning because he had
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.

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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!

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.

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.

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.

Nothing Like Ice Cream

Liver

Caleb had an enlarged liver. Dr. Mas increased his dose of Lasik.

Fontan Heart Surgery Scar After 2 Months

First Day of School!

Big Day Tomorrow!

Caleb starts Pre-K4 tomorrow at Florida Christian School. Should be fun.....

Caleb at the Doctor

Today is Caleb's Birthday!!

Birthday Pic

Honorary Fireman

Caleb's B-day party at the firehouse!

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.

Thank you Lord for all You are doing.

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Angela is resting in the arms of her Maker

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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

A Crazy Combination: Caleb and Fireworks!

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

All Great!

Caleb had a great appointment at the cardiologist today. Next
appointment is in three weeks.

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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.

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Happy to be Home!

Done

We got the thumbs up from the doctor to leave Philly! Now we work on
changing our travel arrangements...

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Dog Tricks

Caleb watching dog tricks at the Ronald McDonald House the day he was
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!

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.

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The Police

Gotta Love That Hospital Food

Chest Tube Removed

After eating a little bit of pancakes and eggs, playing in the
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.

Playing in the Playroom

Doing Well

Next Step: Number One

Caleb got out of bed today. He's very sad, he wants to to home, and
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.

Go For Three

Juice, milk, AND water. All with one hand!

Technique

Notice the double bottle hold technique developed by Caleb during this
hospital stay. He's got milk in one and juice in the other.