Praise God for two superior vena cava!

I left Josiah for his MRI and cardiac catheterization around 8:20 this morning.  After the MRI the doctor called to tell me that they found his left superior vena cava narrowed and his right superior vena cava completely blocked with a clot that originates in the heart.  We knew there was a mass in his right atrium that was a probable clot but it had looked like it wasn't blocking anything during previous echocardiograms.  After the cath, the interventionist cardiologist came and spoke with me.  She was able to dilate Josiah's left SVC with a balloon a number of times.  Sometimes the SVC does not respond well to this treatment but thankfully Josiah's did respond well and it resulted in great haemodynamic improvement.  The narrowing is related to scar tissue from the reversal of the Glenn surgery back in August.  They will continue to watch the left SVC with imaging but it is expected that it won't narrow again.

The original reason for having the MRI and cath was that the echocardiogram last Friday morning showed turbulence (and therefore narrowing) in the lower left pulmonary vein and the confluence area.  From today's cath it looks like the apparent narrowing is due to compression from the heart as opposed to the vein actually being narrower.  So, we praise God for that news as well.  The other veins look okay.

From my understanding, neither procedure showed a reason for his desats but we are assuming that they are related to Josiah getting agitated.  He had desats to the 40s shortly after he came back to his room.  He was bagged and suctioned and sedated and they have been up since then (mainly in the 70s).

It's funny how the first time I heard the word clot in early August, it sounded like a very scary word.  Over time you get used to the word clot and it's not scary any more.  Josiah's first clot is in his right groin and it was from one of his lines.  We also know about a probable clot in his brain and this one in his heart and SVC.  The current treatment is enoxaparin which he is taking.  He has been on anticoagulant since his first clot was discovered.  They are increasing his dose to get to the top end of the therapeutic level.  He was in the middle of the range when his level was checked yesterday.   

They are unsure if the clot in his heart has grown and blocked the SVC or if it was always in the SVC and they just didn't see it.  The plan is to use the MRI images as a baseline and have an echocardiogram on Monday morning to see if the clot has grown.  Then, Josiah will be discussed by a team on Monday afternoon.  If it hasn't grown, they may just continue with anticoagulant.  If it grows, there will be lots of discussion to decide what to do.  Please pray for wisdom for the medical team. 

One additional challenge is that his picc line is directly in the clot so there is a question of what to do when the picc line needs to be removed.  This afternoon the nurse was unable to take blood from either lumin of the picc line or from his new IV.  She had to take it directly from his arm.  It will be sad if they need to start regularly poking him for blood.

Finally, you know that Josiah has basically had constant fevers.  He always has ice on his head and when it comes off for some reason, his temperature starts to climb.  A ton of cultures have been taken but no reason for the fevers has been found.  There is a chance that the clot is infected.  The Infectious Disease doctors want to stop his amoxicillin, an antibiotic that he's had since birth because he does not have a spleen.  They are wondering if the amoxicillin is the reason that his cultures have been negative as perhaps the medication is masking the problem.  The staff physician did not want to stop his amoxicillin but she agreed to do it for the next three days, during which time cultures will be taken every day.  Another potential reason for the fevers would be a faulty temperature regulator in his brain.

A friend is coming to visit later this afternoon so it will be nice to spend some time with her.  Thanks very much for your prayers for the procedures today and your ongoing prayers.  We are in the hands of a good, loving, faithful, and merciful God.  I look forward to seeing Graham and Isaac tomorrow night.  For the last few weeks Isaac has spent the first part of the week with my parents and the last part of the week with Grandma F. at our home.  He still makes us all laugh.

Blessings,

Elizabeth