Friday, June 8, 2012


A few months ago, I wrote about Matthew's unique little feet, how they swell, and to this point have been a medical mystery to all the doctors we've discussed them with.  We aren't overly concerned about them now, but want to make sure that this isn't something that could cause problems down the way.  Our most fantastic pediatrician has been helping us figure this out.  

First, they tested his urine. No protein, no concern about his kidney.  Good news.  Next, they did a lower extremity ultrasound.  No blood clots.  Good news.  Next, they did an echo.  His heart is healthy. Good news.  Then came the head scratch and "what do we do next?" Through his investigation, calling all around to find out who would be the right specialist to see, Dr. W was told about the 'Vascular Malformation Clinic' at TCH.  This isn't even listed on the TCH website.  Odd.  But I called the number he had given me and I got an appointment without having to jump through any additional hoops, which is unusual to say the least. 

That appointment was yesterday.  Matthew and I journeyed to the medical center (for the first time in what seemed like several months) and navigated to the 8th floor of the clinic building as we had so many times.  I went up to the check-in desk.  The receptionist had no idea what I was talking about when I said 'vasular malformation clinic'.  I was told that our appointment was on the 1st floor of main hospital.  Weird, I was told the 8th floor when I made the appointment.  So, Matthew and I went to the 1st floor main hospital, and the person at check in there told me that Matthew's appointment was on the 8th floor of the clinic building.  Ugh.  So, Matthew and I went back up to the 8th floor of the clinic building.  The same woman who sent me across the complex again told me she had no idea what I was talking about.  I had her call the contact number I had.  No answer.  I felt like I was trying to get access to a secret society and didn't know the super secret handshake.  Finally, a woman close by overheard our conversation and stepped in.  I must have said the password.  "Go through the green doors." I was given access!

After meeting with the nurse and doctor at the VMC and explaining Matthew's foot uniqueness, the doctor did another ultrasound of his feet, and didn't notice anything out of the ordinary.  She was saying that his symptoms sound vascular (instead of lymphatic) but the anomaly must be further up his body.  I explained that Matthew has 2 inferior vena cavas (instead of the 1 in most people) and I have pictures of it from his heart cathertization.  I also explained that at the time of the cath, those veins were a little more narrow than usual because the surgeon had to put a balloon in one to get the coil into his heart.  She thought that was very interesting and reiterated that it sounds vascular and that this might be the cause of the swelling.  

The plan is for Matthew to wear compression stockings to help the blood flow in his legs, and she will consult with the heart surgeon to look at the detailed pictures from Matthew's heart cath.  After that, Matthew will likely have a MRI to see the blood flow and also check the lymphatic system (to rule it out).  If the swelling is due to small veins, treatment may be as benign as 'wait and see' or it may require the more invasive angioplasty depending on the severity.  

Although we don't really know anything more than we did before, it was oddly comforting to be in the room with someone who seemed to be the right person to help us address this Matthew uniqueness.  This experience, as has meeting with my new ASL instructor, has reminded me of the Holland story-- these are people we would have never met if we had landed as planned in Italy, but as we are in Holland, we are so very thankful for their placement in our lives.
Matthew waiting for the super secret handshake.

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