Results from Boston

We got the results mid-last week from Boston.  There has been a lot going on here, so I apologize for not posting this sooner.

To recap his testing, Alex had blood work, a rectal manometry, an esophageal manometry, and an impedance study.  The blood work came back normal. Both manometry tests did, as well.  The manometry tests measured the muscle function in those areas.  The esophageal manometry contradicted the swallow study, and there are two thoughts on why.  1) He was mildly sedated for the manometry test, causing everything to slow down across the board.  2) It's an intermittent issue.

The impedance study was the 24 hour test to measure his reflux.  We wanted to know three things.  1) How much reflux was he experiencing.  2) How acidic is his reflux ON meds. 3) Is the reflux related to the choking. We learned that Alex was experiencing a typical amount of reflux for someone in his situation.  His medication IS working, and the doctor stressed he MUST stay on his medication.  The reason he has episodes of such discomfort is that he has permanent damage to his esophagus and it makes it hypersensitive.  There's nothing much to be done about it.  It also doesn't appear that episodes of reflux are the immediate cause for his choking/coughing issues. Nerve damage from the reflux may be making things not coordinate quite right.  He also may have an issue with his trachea - related or unrelated to the reflux and episodes of aspiration.

He has been referred to an ENT.  The doctor out in Boston wants the report and will follow up after that.  He is encouraging a scope of his trachea to investigate further.  He had no thoughts about the issues with movement, other than to bring it up to the ENT. 

The results were a little bit discouraging, but we have suspicions confirmed in many ways, and will just continue to move forward.  His reflux has really been good overall lately, and it's the choking/coughing and lower gi that has really been posing the problems.  But to look at him, you wouldn't know anything was wrong.  He is happy, otherwise healthy, and greatly loved by so many!  And for this, we are so very thankful!

Boston Children's Hospital

2 and a half weeks ago we  had our trip to Boston.  It is truly an amazing hospital.  During the day, it is a bright, bustling, fun atmosphere.  Alex attended storytime, music therapy, craft time, played in the playroom, went up and down musical stairs, and got to meet a player from the Red Sox!  At night, however, you're reminded of where you are - hospital monitors, exhuasted parents, tight security, and children who just want to go home. 

We were very pleased with the doctor - his approach, his thinking, his skills.  We wish our insurance would let Alex be seen there regularly.  While admitted, Alex had bloodwork done, a rectal manometry, an esophageal manometry, and an impedance study.  I was able to get the blood results last week, and everything was fine.  His doctor is currently on vacation, but we expect to get the diagnostic results soon.  He wasn't particularly symptomatic during the testing, so we aren't sure how much information they were really able to get.  I'm sure whatever we learn, however, will be helpful in figuring out what our next steps will be, if any.

So many places claim to offer a great facility, medical and volunteer staff, and services, but CHB really delivers.  We are so incredibly grateful to have had this opportunity. And we are so thankful for the extraordinary family and friends that have surrounded us with support.