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.

Sent from my iPhone

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.

Sent from my iPhone

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.

Sent from my iPhone

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