After long days at the hospital on Tuesday & Wednesday, we now have a bit of direction, although not necessarily what we expected (or wanted)! We met with a number of Aiden’s physicians and came up with the beginnings of a plan for this visit. Aiden’s doctors in Texas have strongly expressed to us (and to the doctors at CHB) the urgent need to find some answers and solutions to the ongoing issues which seem to be causing the aspiration and respiratory distress.
With this in mind, and knowing that Aiden cannot continue to experience these acute events without serious long-term repercussions, the doctors here in Boston have determined that we basically need to start over again and re-examine everything. In particular, they want to begin that process by taking a closer (and possibly more invasive) look at Aiden’s lungsac and heart, since the predominant focus has previously been on his GI and ENT systems. Since Aiden was first seen at CHB 2.5 yrs ago, so much has changed that many of the tests and assumptions that were made at that time are no longer valid.
That process started this week with x-rays, cultures, and a huge amount of blood work. We will continue it next week with a high-resolution CT of his lungs, echocardiogram, meeting with cardiologists, and possibly some time in the OR to obtain a biopsy of his lung tissue, as well as some other possible testing in the next couple of weeks. In the interim, the doctors are adding and adjusting several new medications and want to try a few (rather obscure) medications that may provide some relief of both his GI and respiratory symptoms. Because of Aiden’s paradoxical response to most pharmaceuticals, this is always an interesting process which we hope does not result in any serious reactions. Results from the tests done last week have all been normal.
There is a possibility of another option which has opened up and may allow us to obtain another set of opinions in the next several weeks, but would mean some difficult decisions. We really do not know what to do and would ask you to pray with us for clear direction as to what would be best for Aiden.
On another note…we are anticipating an “April fool’s Nor’easter Snowstorm this weekend in Boston…yes, my Texas friends, you did read that correctly: a SNOWSTORM in April. Ah, the joys of the Northeast….
Hannah Manish and boys, we are thinking about you all and praying everyday. Please know that we are here for you. Little Aiden is in good hands there in Boston and I know this is a stressful hospital stay but I also feel that something very good will come out of it.
love, Jill, Jeff and Elliot XOXO