We follow up on tuesday at MassGeneral with the Coordinated Care Clinic and GI. I actually spoke with Sam's GI doctor today. He was so kind and really seems to want to get to the bottom of Sam's bleeding (not only the location but the cause) as soon as he possibly can. His plan is some angiogram fluoroscopy study that would use a dye to be able to visualize any leaking of blood. He wasn't super specific on the phone with me since I was at work, but you know me I come home and google it and I am now wondering if this is actually what he is meaning. It makes sense to me what he is thinking about doing, but I didn't get the impression that it was a big deal when I was speaking with him and what I have found has been more significantly more invasive than I was thinking. But below is an excerpt that I found from www.webmd.com
"An angiogram is an X-ray test that uses a special dye and camera (fluoroscopy) to take pictures of the blood flow in an artery (such as the aorta) or a vein (such as the vena cava). An angiogram can be used to look at the arteries or veins in the head, arms, legs, chest, back, or belly.
Common angiograms can look at the arteries near the heart (coronary angiogram), lungs (pulmonary angiogram), brain (cerebral angiogram), head and neck (carotid angiogram), legs or arms (peripheral), and the aorta (aortogram).
During an angiogram, a thin tube called a catheter is placed into a blood vessel in the groin (femoral artery or vein) or just above the elbow (brachial artery or vein). See a picture of catheter placement in the femoral vein . The catheter is guided to the area to be studied. Then an iodine dye (contrast material) is injected into the vessel to make the area show clearly on the X-ray pictures. This method is known as conventional or catheter angiogram. The angiogram pictures can be made into regular X-ray films or stored as digital pictures in a computer.
An angiogram can find a bulge in a blood vessel (aneurysm). It can also show narrowing or a blockage in a blood vessel that affects blood flow. An angiogram can show if coronary artery disease is present and how bad it is.
A magnetic resonance angiogram (MRA) or computed tomography angiogram (CTA) may be an option instead of an angiogram. Each of these tests is less invasive than a standard angiogram. Some MRA tests and all CTA tests require an injection of dye. A CTA also involves radiation exposure." from WebMD
I really feel like this doctor is really motivated to get to the bottom of this bleeding, and isn't wanting to just sit aside and continue to let Sammy continue to suffer. I am starting to feel like I should switch all of Sam's care to MGH, except for his immunologist. But that is concerning as I really want all of his care in one place. Anyone out there have any recommendations about this? Is it worth having care at two different facilities?
Tomorrow we are having a playdate with Keegan!!!