We got partial results back from the MRI.
Seems like Parker’s total upper airway likes to fall into itself when he sleeps. We knew his trachea would do this and his bronchi too. But now we know that the extent of his super floppy airway is so much greater.
When you add into that the also new discovery that Parker’s tongue is falling back and covering what is left of his airway and you have one whopping scenerio for pulmonary hypertension.
But even in the midst of this news we have a ton to be thankful for. Finding out this information tells us that Parker’s Pulmonary Hypertension has a CAUSE that is FIXABLE. Many children with Pulmonary Hypertension don’t have the blessing of having a treatable cause for their PH.
We still have the worry over whether or not Parker’s lung vessels will be able to grow enough to service Parker’s body as he gets bigger. But that is a worry for tomorrow. Today we spend being thankful.
So, we are incredibly, beautifully, wonderfully blessed.
We are going to continue to use Parker’s CPAP but add a medicine that will help him sleep a good eight hours a night and keep that CPAP on for the same amount of time.
In a worse case scenerio they could go in and make Parker’s tongue smaller. While there is a new technique out there for doing this, it is still a very painful procedure and recovery. And there is a chance that as Parker’s grows his tone will improve.
They want us to stay and see Immunology. Parker’s IgM is low. It is pretty unusual for one’s IgM to be low. We need to find out what we can do to raise this up and thus help Parker fight long term infections (such as sinus) better. Getting sick so much is wrecking havoc on his poor little body.
Cdiff is still in full force. Still need to get his stoma checked out.
Bottom line is that Parker is a bit of a mess.
But he is our very much loved and adored mess. He is cherished and wanted and nothing less than a blessing.
Some blessings just come in packages that are a little more tattered than others. But the gift inside is no less precious and no less valued.