Sunday, January 31, 2010
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.
Wednesday, January 06, 2010
Tuesday, December 29, 2009
Sunday, December 06, 2009
Tuesday, November 24, 2009
Monday, November 23, 2009
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
Saturday, November 07, 2009
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
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
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.
Thursday, October 08, 2009
Monday, August 17, 2009
Sunday, August 16, 2009
Monday, August 03, 2009
Tuesday, July 28, 2009
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
Sent from my iPhone
Begin forwarded message:
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
Thursday, July 02, 2009
Sunday, June 28, 2009
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
Friday, June 19, 2009
Wednesday, June 17, 2009
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!
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
Monday, June 15, 2009
Sunday, June 14, 2009
Saturday, June 13, 2009
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!
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:
the beginning of a good recovery
strength without sleep
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.