Friday, August 7, 2009

Some More Detailed Medical Information

For those of you who have been tracking with us, you know that since the first detection of heart issues with Samuel in early April, we have had something like 6 different diagnoses. A couple of days ago when we were leaving Northside and about to be transferred to Egleston, we were given a list of 8 possible defects / complications. We have a few more answers now than we did then, but there a number of questions remain. If I'm honest, I'm listing some of this stuff more for our own keeping, than for your reading. If you're interested, have at it. :)

- Double Outlet Right Ventricle has been ruled out. Yea!
- All of the previous diagnoses have been ruled out (i.e. Transposition of the Greater Arteries, Tetrology of Fallot, Atrio-Ventricular Canal Defect). Yea yea yea!
- He does have an Atrial Septal Defect (ASD). This is a hole in the lining between the upper chambers of his heart. If it needs surgery, it would not be for several years. Comparatively, the doctors are not very concerned about this issue. At the same, this is contributing to the complications with the lungs and liver (listed below).
- The blood flow in Samuel's PDA (more on the PDA later) is going from right to left. This means that some deoxygenated blood is being pumped down to his lower extremities.

- Samuel may have coarctation of the aorta (a narrowing of the aorta) where the blood flows to lower extremities. They cannot tell if he has one because his PDA (patent ductus arteriosis; a little duct/vessel that goes between the aorta and the pulmonary artery) is so large. All children are born w/ a PDA that closes on its own in the first 3-14 days of life. When Samuel was first born, they gave him a drug called Prostoglandin that actually kept the PDA open. Because of his lung troubles and the heart diagnosis at the time, they thought that keeping the PDA open was essential. He is now off of the Prostoglandin, and his PDA is slowly shrinking. Even if coarctation is not currently there, the doctors believe that the shrinking PDA itself will narrow the aorta and create a coarctation. This eliminates one problem (deoxygenated blood being pumped to his lower extremities; see above) and creates another one (less blood flow to and lower blood pressure in the lower extremities). A coarctation would probably need to be surgically repaired, and probably before he goes home. In his case, it would be from between the ribs on his left side.
- Though we had been told that the PDA "always" closes in the first couple weeks of life, we now understand that (as w/ many things in life) there are exceptions. If Samuel's PDA does not close on its own, it would need to be closed surgically. This would be an open heart surgery and would definitely need to be done before he goes home.
- The doctors are pretty sure that Samuel also has coronary fistulae. I think that more than one doctor has said that they have never seen fistulae in an infant. They are a pretty common occurrence and are often discovered and repaired much later in life (i.e. 70 years old). The coronary artery comes off of the aorta and gives oxygenated blood to the heart muscle itself. A coronary fistula occurs when the blood that is supposed to go into the muscle actually goes into the heart chamber (in Samuel's case, the right ventricle and a little bit into the right atrium). It is like trying to pump insulation into a wall but puncturing the sheet rock and pouring it into the room on the other side (my analogy). For Samuel this means that his lungs have to work extra hard because blood that the lungs have just oxygenated is leaking into his right chambers which pump the blood back right to his lungs.
- Samuel may also have a Ventricular Septal Defect (VSD; a hole in the wall between to the lower chambers or ventricles) or two. The doctors don't seem too relatively concerned about this, because, if it is there, it is quite small.
- Samuel's lungs are still struggling. At one point we were told that though he was born at 36.5 weeks they look like the lungs of a child born at 27 weeks. A couple of days ago part of his right lung was collapsed, but they have that in better shape now. It seems that each effort that they make to wean him off the ventilator is too much for him. It is hard to tell, but it doesn't seem that we've made too much progress. One reason for that may be that the lung issues are the result of the heart abnormalities (especially the fistulae and the PDA) because they are making the lungs work harder. They are taking on fluid, maybe in part, because of the excess blood pumped back to the lungs. This increases their resistance and decreases their capacity. Because Samuel will almost certainly need surgery, we need his lungs to be in good shape.
- The newest issue is his liver, and this is the one that I understand the least about. Doctors believe that this too is a result of the issues w/ his circulatory system (i.e. the heart abnormalities). His filtration system is backed up because, on one hand, the liver is not functioning optimally (this is probably primarily because he was born a few weeks early), and, on the other hand, because there are extra fluids that need to be filtered and gotten rid of. This is why he was under the "Billy lights" for his jaundice. His liver, too, needs to be in good shape to sustain him through surgery.

So that's what I know. If, indeed, Samuel needs surgery you can pray that his lungs and liver would improve and strengthen and be able to sustain him through the procedure. If you've made it this far through this post....CONGRATULATIONS!!


  1. We are praying for you guys and love you bunches! Thank you for keeping us all updated. We are so proud of you guys! Katheryn - you look beautiful!

  2. Actually - that was Mindy saying you look Beautiful ...sorry Bryan! K-sorry if I misspelled your name!

  3. Thank you Bry and KC for the updates. It means a lot to Samuel's great-aunt who is worrying about all of you. I am so impressed with how well you both are handling this crisis. I am praying that your strength holds out, that Kathryn has recouping time, that Grandma Pat continues her fine job with the boys, that the boys survive with little stress to their lives, and most of all for our precious little new family addition,Samuel. Surgery seems inevitable, so my prayers are that he is strong and can recovery successfully. He looks perfect. I long to hold him too.
    Love to you all,
    Aunt Kay

  4. Thank you Bryan for taking the time to share and update us all on little Samuel's condition. How do you keep track ... amazingly so with the grace of God, I know! I have been checking the blog at least 4 times a day, and seeing the pictures of all of you are such a treat:o) I wish there was more I could do, but I know prayer and love will go far. I will pray for his liver and lungs to strengthen, and then that his heart condition may be taken care of. I pray Kathryn is healing well from the delivery and rest comes to you both at the end of the day. I am sure Caleb and Joel are missing you all. The thing is, this is a situation where it is such a gift that they have little concept of time:o) I look back on all the times I have left Luke to care for Emma, and he doesn't remember the length of time ... just the adventure he had.


    All of Our Love,

  5. Praying and singing my own liver, heart and bilirubin songs for Samuel.
    Love you guys. Scott and Melanie