Background of Mason's Journey with TCH-- Part 2

The problem with tests are that they lead to results. The problem with results are they can bring you back to square one.  And that is where we find ourselves today-- square one!

Mason had his CAT scan on Monday, June 13th. he did really well with the sedation, recovered quickly, and was glad to be able to eat again! We received the results the next day which have changed everything we thought we knew.  Turns out that Mason DOES NOT have a vascular ring affecting his trachea.  He DOES have some sort of vessel indenting the esophagus (there is a medical term but it was at least 25 letters long) that is found in 1% of the population.  It is a vessel that leads to no where and is sort of just floating there.  Right now, it does not appear that anything has to be done about this vessel.  We just need to know about it in case swallowing becomes a problem later in life or he has to have surgery one day.  But, in short, the trachea is NOT being obstructed from their perspective so the wheeze is still a mystery.

So, back to square one! We were bummed.  I know I should be excited that Mason does not have to have to have surgery but I hate being back in the realm of uncertainty.  A few days ago we had a path, a direction, a plan and the test results erased all of that.  We are being referred to an ENT which we knew was the next step if the Pulmonologist was not able to determine the cause.  I called the Texas Children's ENT referral line to make an appointment and the nice receptionist broke the bad news that the next available appointment was end of August/ beginning of September! AAAAAHHHHH! BUT she did tell me that my pediatrician can speed the process up.  Mason will see his pedi next week so we will go from there and see if he can work his magic with the ENT office.

 And to make matters worse, today (Friday, July 17), I received a call from the Pulmonologist again.  It caught me off guard because I thought that chapter was closed.  She called to tell me that the Radiologist had studied his CAT scan further and had noted some abnormalities.  Apparently, there is an abnormality with his aorta and pulmonary artery-- some sort of connection between them.  She is not a Cardiologist so she could not dig much deeper than that.  However, we are now being referred to a Cardiologist for further review and diagnosis.  She could not even tell me the severity of this-- I mean they are only the 2 most important vessels of the body!  Anyway, she does not feel that this potentially new problem is linked to his wheeze but could this be a new problem?  I am headed for information overload-- it all feels like TMI-- too much information!

So, we will be living at a variety of Texas Children's Hospital facilities apparently.  Thankfully we have these facilities at our disposal and thank goodness the cafeteria food is somewhat edible :)

Please know that Mason is SO happy, appears SO healthy, and is just a complete JOY! I am not sure why we are traveling down this road but there is a purpose and a testimony to be found in all situations.  We appreciate all of your love, concern, and prayers! We really have amazing friends and family!