Thursday, April 7, 2011

An Update on Daniel

Many of you may be wondering how things are going with our search for medical care for Daniel’s numerous heart and lung defects. Well, I asked the Lord the same question the other day during my devotional time: “So, Lord, how are things going with Daniel’s medical care?”

Daniel and Diana

Actually, my prayer caught me off guard. I have been praying regularly for three other precious children in the U.S. whose blogs I follow. Two of them, infant girls, have never been out of the hospital since they were born, in their 6 and 8 months of life. Their defects are less serious than Daniel’s and they are now awaiting heart transplants. The third child, Riley, is slightly older than Daniel and has almost the same set of defects as Daniel. He has been waiting for a heart/lung transplant for over a year! As I prayed for them, I suddenly realized that Daniel should be in heaven already with Jesus, on those same transplant lists or using a constant flow of oxygen, like Riley, but Daniel is here at home with us running around, starting preschool, talking a mile a minute and constantly wanting to have a book read to him. I can honestly say I just don’t get it…other than that God’s grace and mercy in Daniel’s life is huge! Why in Daniel’s life and not in others? I don’t know, but I just pray we do not take for granted that grace and mercy, but fully use it for God’s honor and glory!

The problem with eating an ice cream cone in Acapulco on a hot day when you are three years old!

So, I asked God if I am supposed to be doing something else than what we are doing in terms of seeking out medical care for Daniel. What are we doing, you might ask? WAITING, WAITING AND MORE WAITING! Recently a pediatric cardiologist in Toledo had offered to perform a heart cath on Daniel. This appears to be the next step in seeking out Daniel’s medical care because the heart cath will give us a more accurate picture of Daniel’s defects and will help determine if the Glenn procedure (a set of three surgeries designed to redirect the blood flow to compensate for the half of the heart that Daniel is missing) is actually an option for Daniel or if his conditions are inoperable. However, the doctor in Toledo then decided that he could not perform the heart cath and offered to do a physical exam of Daniel and non-invasive tests. However, we have had those things done twice here in Mexico and did not feel it was necessary to spend the money to travel to Toledo and have the same testing done there that has been done here in Mexico. (Hospitals we have approached in the U.S., upon seeing Daniel’s non-invasive test results, do not even want to commit to doing a heart cath, because even that procedure is quite risky for him, due to the seriousness of his defects. If something would go wrong during the heart cath, they would have the obligation to try and save Daniel’s life, but, as a charity case, cannot risk committing that amount of funds to Daniel’s situation.)

Victor and I have agreed that if all possible doors for Daniel’s care in the U.S. close, then we will move ahead with getting him care here in Mexico. We would have the heart cath done at the military hospital here in Mexico City and, if surgery is deemed possible, the open heart surgery would also take place at the military hospital. However we are not as comfortable with having such risky medical procedures done in Mexico, so we continue to wait upon the doors that remain ever so slightly open in the U.S. No matter how many doors close in the U.S., there is always one door far enough open that we do not feel peace about moving forward with treatment here in Mexico.

An organization from England contacted us several months ago. They are working on a possible contact at a hospital in Houston, Texas to see if they would be willing to operate on Daniel. We are also in conversations with a hospital in Dallas, which has not yet closed its doors to Daniel.

That morning, just a few days ago, as I prayed once again about this situation, I felt an overwhelming sense of peace to continue waiting. I asked the Lord: “What am I waiting for? Am I waiting for a hospital in the U.S. to offer treatment to Daniel? Am I waiting for us to have the heart cath and open heart surgery in Mexico? Am I waiting for Daniel to go home to be with Jesus? Am I waiting for God to do a miracle and heal him?” There was no clarification from the Lord…just “WAIT.”

David and Daniel, new brothers, sharing a drink on the beach.

So, we are waiting, and, in the meantime, thoroughly enjoying Daniel. He started preschool this week here at our homeschool and loves it! He loves to laugh, to run, to hug, to read books. If his slight blue coloration wouldn’t give him away so easily, you would never know that he has several major heart and lung defects.

As I have followed blogs of other CHD (congenital heart defect) children, I have witnessed the long, tough heartbreaking road that awaits them through surgeries, cardiac arrests, separation from their families, etc. and I ask the Lord if that is the road that He is choosing for us. At this point, Daniel is doing great….miraculously great. As his mother, I cannot imagine choosing to send him into open heart surgery that will mean weeks in intensive care, much pain for him, separation from us, months of recovery, my being divided between him and my other 16 children and husband with no guarantee that he will survive the first surgery, much less the second and third that would await him, nor with any guarantee of how long his life would be prolonged here on earth. Or, the second option is, we can enjoy every moment of life that the Lord is giving us together – with Daniel running, playing, laughing, learning and loving and having that life end in his glorious entrance into the loving arms of His Heavenly Father where he will no longer suffer from shortened breath and blue fingernails.

"This is a good mango!"

So, do we fully live the next few years – full of life, love, unity and hope, until the Lord, in His sovereignty, calls Daniel home? Or do we choose medical intervention and maybe enjoy Daniel until his early adulthood (the surgical procedure that he would undergo is relatively recent and nobody really knows how the patients react later into adulthood)? However, that is assuming that he even survives the surgeries and much of that time would be spent in the hospital, connected to machines and going through painful procedures and recuperation.

At this point, to be honest, I don’t have the answer. Just last week, the parents of the missionary husband from the state of Veracruz that helped rescue Daniel spent a day visiting Refuge Ranch. They asked, “So, has Daniel had his surgery yet?” I explained a bit of the situation, but actually felt guilty that we haven’t operated on Daniel yet because, supposedly, one of the main reasons that we brought Daniel home was to make sure that he got the medical care he needed and to heal him. But, maybe God has called us to be His healing hands in Daniel’s life in other ways…to heal his emotional and spiritual heart, rather than his physical heart. I firmly believe that if Daniel had not come to be our son he would not be alive today due to the physical, emotional and spiritual stress that he would have had to sustain in his birth situation. His little half heart would not have been able to survive such a lack of love. Love truly is the most powerful medicine of all! (Check out the following link for a great story that, just like Daniel’s story, proves this to be fact! http://moms.today.com/_news/2011/03/07/6204973-so-what-if-we-have-7-other-kids-how-one-family-adopted-6-children-from-africa-?GT1=43001 )

Daniel and I on vacation this past February.

(He wasn't too keen about the beach. Can you tell?)

Each night, as I rock Daniel and pray with him before laying him down, I pray that the Lord would heal him in His time and His way. Then, each night, before I go to bed, I go into Daniel’s room, reach my hand down into his crib and lay it on his chest as his heart beats hard and I ask the Lord to keep that little heart beating until the next day. For now, we will continue to wait until the Lord tells us when to move and in what direction! In the meantime, we will live life to the fullest, not only with Daniel, but with each of the precious people the Lord has placed around us!

"As long as it is day, we must do the works of him who sent me.

Night is coming, when no one can work."

John 9:4

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