MRI

Today was the day for Sutton's MRI. We had originally anticipated an early morning MRI, but because his condition is stable he was put on the schedule for early afternoon. Then, as sometimes happens, one of the machines goes down and everything gets backed up. Fortunately, his docs pushed to have it done today when MRI wanted to reschedule for tomorrow. At 4:00 they started preparing him for his travels. They replaced all of his monitoring equipment to be MRI compatible, snuggled him in some sort of papoose to keep him still and assist in moving him around for the procedure, and gathered up respiratory therapy (RT), our nurse, and some other staff to transport him. It was quite the production. 

They gave him 2 hours worth of Fentanyl instead of taking his drip with him and the little booger fought falling asleep quite impressively! He has a bit of a temper and doesn't particularly like when he isn't swaddled, so once he got into his papoose-thingy he was quite happy and comfortable and eventually started to doze off.

It is unlikely that we will have any results or a game plan before tomorrow. After speaking with the attending, ENT, residents and fellows, our hope is that they won't find anything new from the imaging today that wasn't already seen on his ultrasound last week. If that is the case, there is a possibility that they could remove the affected lymph nodes and wait for his swelling to go down and trachea to shift back to midline. That, in fact, is our only issue right now - the deviation in his trachea. His labs are otherwise unremarkable, he is up to his goal feedings without incident and he remains on CPAP (where he does the work initiating his breaths) instead of the ventilator settings. 

Although that is our hope, the ENT made it clear that many times the affected nodes can be wrapped behind the trachea (the ultrasound would not have been able to see this) which would, at the very least, complicate any surgical removal. They have made us aware that there is the possibility of needing to place a trach in order to maintain his airway until the condition resolves itself. When Sutton had sclerotherapy (the drainage of some of the larger nodes) last week, the interventional radiologist noted that he doesn't see this in teens because its typically resolved by the time they reach toddlerhood. All things considered, we are very fortunate that this one thing is what is keeping him in the NICU. 

There are a lot of 'what ifs' swirling right now, but we are just trying to be patient and wait for all the data to come in so we have a clear picture of what lies ahead for Sutton.